" QUALITY OF LIFE "

New Doctors, New Relatives, New Insurance, New Symptoms, all come with their own part of the Multiple Sclerosis Puzzle.  I stay anemic a year after phlebotomy. This is a unknown by the cancer specialists.

23and me has shown me a list of new relatives. Distant cousins from 4th great Grandparents, way down a family tree line.  But to be diagnosed in your seventies, that you have the same match of a H63d Gene, I have talked about that  puts you into iron overload.   Hereditary Hemochromatosis.
This alone was another piece of the puzzle on how many generations this has gone thru. Even the current generation seeing this problem, but with different eyes than those of past generations.  Even about same heart beats.

Another Gene showed up on 23andme.  HLA-DQB1.  This 23and me shows as a gene for celiac disease. But you have to dig in deeper in the Gene. Under the Government site,  Autoimmune diseases are listed. One being Multiple Sclerosis.
https://ghr.nlm.nih.gov/gene/HLA-DQB1#conditions.

I wonder how many scientist, or scholars can put all the pieces togeaather, including the vitamin D of 180,000 iu / week I need . (eighteen ten thousand iu pills)

A link I need to send to my Neurologist, but we talked about it. The session goes way to quickly with my Neurologist.  She was surprised that the soonest they can have more Botox on me is mid  February 2020. My calves and  neck stay tight as a knot. The last Botox was in August 2019.  My Botox Neurologist went on Medical Leave, just before my next injections were needed. This effected thousands of his patients.  I sent a few letters out because of the facts.

I scrambled for a New Doctor to inject Botox, and see if my UC Davis Neurologist would handle prescriptions. The  absence by my neurologist left thousands scrambling like myself.

Botox works for about 64 days with me, but loosens up the spasms in the neck and both calfs, which control the feet. This also controls thigh muscles higher.
The neck one keeps my buildging discs in place and relieves the entire muscle to the arm.

So I went into scrambled mode, and my Neurologist at UC Davis filled medicines, and got a referral to the Head Professor at UC Davis for Botox,  for the first available appointment being February for My partner and myself. He uses botox  for migraines.

My Clinic, I go to for seeing my GP, has usually been good. A Excellent GO, watched after me for a year, and decided to go back to school. This left them with no Dr.  A wording he used,  "It's the Quality of Life that matters " sticks with me everyday.  I had first seen him when they wanted to do surgery on my neck for two herniated discs.  Was the pain jabbing me in my back and down to my fingers being Caused by The pinched nerve, or was it caused by MS?

The Head of the clinic Dr, came to keep track of me and medicines for about three months.  A Gracious Man, wanting to learn. He talked highly of the new Dr they hired.

 The following month, Dr X, stood across the room and accused me of not taking my meds, as my blood pressure was high (pain related).  Then he states, " I do not prescribe Lyrica, as that is a Dangerous Drug"  he states that a few times. This is one of my least dangerous medicines, for those  that take MS meds, many are black box warning meds are used, that  Makes lyrica look like asprin in comparison. You have to outweigh the positive effects against the negative effects, and each medicine works different. He did not attempt to touch me to see the pain, or listen to my heart, or recheck my blood pressure.  This was by far, the worst treatment I have had with a Doctor.

Note :  lyrica and Cymbalta are used to control pain in MS, and a GP should know that by reading .  Hyaluronic Acid from England, and chondroitin Sulfate has eased my neck issues, talked about with my Neurologist.

Not all patients are a good fit for a Dr, or is all Doctors a good fit for patients.

But On a Good Side, I got Dr. T. at UC Davis to be my GP. A residence, so for six months, but he studied all the notes from each specialists, and spent two hours with me, making sure "The Quality of Life" is my goal to keep.

But changes happen. Insurance companies started to buy each other out, including your local small pharmacist in the background over the years. CVS Pharmacy became so big, they bought Aetna out. The government stepped in, and put a stop, saying they got to big, sell off your drug plan.  So Wellcare bought them, eliminating drugs and doubling rates.  Consumer Reports has a great article drug-prices/the-shocking-rise-of-prescription-drug-prices

So a new company for my Drug Plan, with the help of  Director of the Area12.org.   https://www.area12.org/ to find, so most of my drugs would be On the plan. I am sure my Drs will have to pull out all stops to ensure I am on medicines needed, with Prior Authorization, and Medical necessity, and some perfect language.

Yet, another change happened, after my Partner injected Copaxone into my arm. Thought it was only a blood vessel he hit, so not much thought. But the bruise under the skin became larger, the crusting taking over slowly.  Three weeks later, I showed my Neurologist, who had her nurse look at it.

 She named off a long word, but it means the destruction of the skin, by the copaxone itself. Some need surgery done.
Feeling my arms, there is no fat to inject the copaxone into. So the arms are off limits. She had me call the Copaxone Nurse also, who came to see me at my house.

I had not seen her since starting Copaxone. She agreed, arms, no fat to inject into. My thighs, so tight without botox, only a small area left. My sides, nearer the back on small area, as other  injection site have become tough skin. The 1Stomach, because of my GI problems, was not bloated, but little fat, and some areas to stay away from.

So that will limit Copaxone injections in six months, or a year?

For those Scientists and researchers reading this, I asked the nurse, "Copaxone is made of a few amino acids.  What if you were to mix them into a smoothie? , instead of injections?". Makes sense to me, as I can buy all these amino acids from the store as a pill. Would you need some oil, and cook it into eggs?  I asked Copaxone the same question to ponder.

for my technical people:
"Copaxone Description:

Glatiramer acetate, the active ingredient of Copaxone, consists of the acetate salts of synthetic polypeptides, containing four naturally occurring amino acids: L-glutamic acid, L-alanine, L-tyrosine, and L-lysine with an average molar fraction of 0.141, 0.427, 0.095, and 0.338, respectively. The average molecular weight of glatiramer acetate is 5,000 – 9,000 daltons. Glatiramer acetate is identified by specific antibodies.

Chemically, glatiramer acetate is designated L-glutamic acid polymer with L-alanine, L-lysine and L-tyrosine, acetate (salt). Its structural formula is:

(Glu, Ala, Lys, Tyr)x●xCH3COOH

(C5H9NO4●C3H7NO2●C6H14N2O2●C9H11NO3)x●xC2H4O2

CAS - 147245-92-9

Copaxone is a clear, colorless to slightly yellow, sterile, nonpyrogenic solution for subcutaneous injection. Each 1 mL of Copaxone solution contains 20 mg or 40 mg of glatiramer acetate and the following inactive ingredient: 40 mg of mannitol. The pH of the solutions is approximately 5.5 to 7.0. The biological activity of glatiramer acetate is determined by its ability to block the induction of experimental autoimmune encephalomyelitis (EAE) in mice.

Copaxone - Clinical Pharmacology"

So I expect more hickups along the way, perhaps some will help me more, like Ampyra name brand, https://ampyra.com/ has helped my walking,  but might not be right for everyone.

Cheers and thanks for Reading. Would love feedback.

Joey

Optic neuritis, Eyes, Healthy vision

I have touched base  quite frequently with Eyes, Vision, the problems associated with Multiple Sclerosis.
many Dr's are part of My eye team. A Optometrist, who prescribed Glasses, but can also look at nerves, and how the eye looks.  A second Dr, a Ophthalmologist, does more detailed, including surgery to remove cataracts. He also looks at the eyes and into the nerves, muscles, and what is happening. The third is my Neurologist.

When Multiple Sclerosis hit me, one of my symptoms was Double Vision. Kinda blurry, but yet I would watch TV, and two of the same characters were there. One about three o'clock position, the other more near a five o'clock position.   My distance vision became off kilter. My Near vision, I kept reading the same line over and over, not able to get to the next sentence.  I did not know at that time Multiple Sclerosis would be part of me. One eye would flutter.

Money was tight, so I went to Dr Costco optometrist. A real knowledgeable optometrist gave me two new prescriptions. One for reading, and one for distance. But he also took the time to scribble some words down, that were concerning, to show my GP.  Alternating exotropia,  Right  lateral Gaze., And a few others I did not understand. He put in some prisms to help correct, but not over correct.

My Eyes would take a path of their own ever since. Lights would effect my eyes, one pupil not responding as fast as the other. Each person has their own story, but a common denominator is the eyes.

My ophthalmologist told me,  I could order a pair of glasses every day, as that was how my vision was changing, due to nerves that control the muscles of the eye.  Optic neuritis.

Costco, goes thru optometrist, and visits with new optometrist were five minutes.  That's when I switched  to the one I have been seeing.

Ones that advertised on TV, or major adds in newspapers, have the worst reputation with the BBB of complaints.

On One of the visits One year, My New optometrist took two hours with me. My eyes,  had what he described as cotton balls at the end of their nerves.  I was missing, or had blind spots. I knew that from walking out dogs, I would be missing, or not seeing items.

Optic Neuritis,  a quite common word with Multiple Sclerosis. Affecting people differently. Some loose entire vision, as my neurologist had told me years before. If I went blind, to get to UC Davis.
This was not that bad I told myself, but I found myself at the local bandage hospital near the small town where we live. The cotton balls were a huge concern for my Neurologist at UC Davis.
She prescribed five days of iv soul medrol. I

 My Eye appointment was Monday, and I started the procedure, as it was the holidays, On Wednesday.  Not wanting my partner to drive five days down and back, the local hospital was given The script from my neurologists.

The local hospital, was like they had never given a iv treatment before. Five days turned into seven, as they took off for weekends. A hour procedure, of a bag of saline, and bottle of Solumedrol with a drip  line going into a computer, and into a vein. Simple, but day one took them four hours.

Behind the curtain, was the colonoscopy room. They wheeled patients from behind me into adjoining curtains that split of some dozen spots. You could hear the Dr dictate his notes.
A gal ran around like her head was chopped off, creating more commotion, then help.

The procedure did get better the following visits, but did it help the eyes, or was it time that helped make them better?

Solumedrol, the steroid most commonly used to treat MS, is a brand name for methylprednisolone. It's quite potent and often used for severe relapses. Typical dosing ranges from 500 to 1000 milligrams a day. ... Solumedrol is administered intravenously in an infusion center or hospital.


I have been on Achtar, a $30,000 drug for MS, injected into the muscle,  A few five day courses of prednisone tablets, to help with MS Symptoms, including the eyes. Avatar for MS

Over the years, I have adjusted to Double vision, but not really. My eyes tire easily. There are blind spots, the retina thickness is always asked about by my neurologist.

A article written by my optometrist I found fascinating.I
https://newgradoptometry.com/prescribing-fish-oil/
https://newgradoptometry.com/prescribing-fish-oil/

Nutrition for the eyes. A few pills that might help.
Lutein is a carotenoid with reported anti-inflammatory properties. A large body of evidence shows that lutein has several beneficial effects, especially on eye health. In particular, lutein is known to improve or even prevent age-related macular disease which is the leading cause of blindness and vision impairment.

My mom told me she remembered years before my MS, that my eyes would bounce and not focus when we visited, but that was way before MS hit me.

Prednisone has its own drawbacks, as a medicine used to treat inflammation, or problems with MS. Side effects, the quality of life needs to outweigh the medicines and effects.

I still have the problems years later. It is part of MS, and how my brain is interpreting the images, aligning them up, and compensating for blind spots, or blurry waves.  I have found naps help.

There may be some genes involved also, so eye health is important.

 does omega 3 help, or luitin? Would love feedback of what works or did not help.I

Thanks for reading
JoeY

Generic drugs or name brand

                     When Medicines Start looking the same, but are they?

A new medicine goes thru vigorous hoops and bounds, and many trials and test with people, healthy or not, before FDA  in the USA allows it to be sold.  They grant the drug company exclusive trademarks for years, to help recoup the cost on research, development, three phases of testing, before it gets a approval to go to market, usually at a high price.

When the trademark runs out, and the manufacturer has made their billions, the drug is opened to the Generic Market.  I believe there is still a year given to the trade name of the original drug.

A Generic, only has to have 75% of the main ingredient that makes the medicine work. They may change a molecule here and there, put different fillers in, and try to make it like the real drug, but add their own twists. Even rules apply that they must act the same, absorb the same, and be like the real drug.

Think of chocolate chip cookies. Many recipes to make home made ones.   store bought are not as good as homemade, even if they follow same recipe, perhaps flour is different, or chocolate chips are different. But they are all called a chocolate chip cookie.

I have experienced many times, being sensitive to how the name brand drug works, and those of Generic type.  Some generics work just fine, but in comparison to the real drug, there may be a difference.

Take Cymbalta, brand name for instance. It's ingredient is Duloxetine.
When the generics came out, the insurance companies played Doctor.  Many generic companies came up.  Each company made their Duloxetine different. Even Cymbalta, came out with their own Duloxetine, which was identical to Cymbalta.

But Problems arose with me. It takes about two weeks with Duloxetine, and then you know something is off. Is it the absorption rate of the generic?, Or another slight change to the formula, or that it's not quite as strong?

I used three or four Duloxetine manufactures, recording side effects, how long they lasted, when they started. I reported them to my pharmacy, my Doctor, The company, and finally to the FDA, that runs a site for just this. They need enough people to complain, until they will do something, as they do not check each manufacturer, or facility.  FDA adverse-reactions

But each of these changes took time, for my body to adjust, or not to.
A Generic brand was finally found that kinda worked, but Cymbalta worked better.  The company recently pulled their product, and re-manufactured it with less ingredients. I could tell immediately, that it was only working for 18 hours, not 24 hours.

I asked my Dr for a increase in dosage to make up for that, but my insurance company, re-wrote the script, and showed I wanted a six month supply, and denied a prescription. My Dr wrote it asked 60 grams to increase to 90 grams, then calculate for 90 day mail order supply.
But insurance company re-wrote it as 60 grams for six months, as their quantity limits, and regulations, Then denied it.

on another generic, the pills were chalky, disintegrating as pharmacist counted them out, and again leaving a chalky mess, when I would sort the pills. A common medicine, Gabbapentin.  It should of been the manufacture in India, that knew of the problem, but shipped it out anyways.

 It should of been the pharmacist From a large drug chain seeing a problem, as many patients using this, and many pharmacist ending up counting this chalky mess.

 But ended up with me, the consumer, who gagged on these chalky pills, letting pharmacist know.  It took me to call the U.S. Importer. He did not have any of the pills. Then for him to call India and obtain some pills, to see the problem I was talking about. The India Manufacturer knew of the problem, just not how to correct manufacturing issue. They were quite apologizing,  but nobody questioned, until I did.

I was switched to another coated generic, that has worked since.

another example, is when you are slammed into a generic. The Pharmacy can make more money, so they switch you from drug A, to a generic, without you or your Dr's permission.

 This has happened a few times, which takes hours with customer care agents on the phone, stating my Dr made the switch.

  Even if you have prior authorization for the year on file, they "forget", making your Dr write a new prescription "Dispense as Written", Name Brand Only.  Some days I am on the phone for hours, along with the Doctors, as they make it vague of what they need.

Back to Generic Medicines. Most seem safe, but realize that the generic is different, and has not needed to go under vigorous trials like the original. It is a recipe, like the chocolate chip cookie, being varied, fewer chips, different chocolate chips, as those have generics types.

Would love feedback of your experience good or bad with different name brand medicines, or their counterparts of many companies making them Generic.

Lyrica (pre-gabalin) just went generic, now eight companies making their own versions.

Thank you for reading and commenting
JoeY

Butterflies and Multiple Sclerosis

https://youtu.be/io6Yi_z7SpY

Instead of having a disease like Multiple Sclerosis, wouldn't you rather have the life of a butterfly?
They start as a beautiful caterpillar. Walking with many legs,  inching along.
Then they have to spin a web, cocoon, keeping it protected enough to make a transformation into this creature we know as a butterfly.
 With wings to fly around, flowers , each with their fragrance and taste. With others that also make their transformation. Their lifespan measured in minutes, being years to them.
Smart creatures to obtain such a transformation, and knowledgeable about what flower to try.  Caterpillar

I wonder if they, the butterflies, come down with any neurodegenerative diseases thru their lifespan.  Would it be interesting to be a butterfly for a while? A minute would be a year.

Just a thought, as MS is ever changing, and different for each individual for some reason.
A article in Readers Digest , April 2019,  page 45.  "New tool predicts MS Disability".   It points that Iron could be a precursor, as found in many MS patients "
A research article I found is here from  Healthline.com

That is the second neurodegenerative diseases I deal with. The H63d /H63d gene, part of the HFE iron regulator changed a protein that tells the DNA gene to be On or off that controls the uptake of Iron.
 I did 17 phlebotomy's since October 2018 thru January 2019. Seven months later, I stay real low on Iron. Slightly anemic, but do not see them doing any  phlebotomy for the rest of the year. I will see the cancer Doctor next month, that may shed light on why I am staying so low in iron.  Your blood is replenished every three months by your bone marrow, so it is strange.

I also must note that my GO Dr went on to further his education. This has actually left me in the hands of a real good GP, who is the head of all the clinics. He listens, and can tell from reports done by other Doctors, what is going on.  He said the best Activist is myself. If you have a disease, you sometimes know more than the Doctor.  A good Doctor will tell you if he does not know, or Send you to a specialist, or even another specialists if he thinks the first one did not go far enough. My GO Dr gave me his new email to keep in touch. That meant a lot.  I do have another GP, that I stay in touch with.

My GI issues have been ongoing, and I tried to figure what changed at the beginning of 2019. No new meds, but a major change. I did a ubiome gut report in the first quarter. Glad I did, as the Feds raided ubiome, and closed them down for insurance fraud.-----------Cnbc news article ubiom raided by feds
I am Trying to decipher months later what my Gut may be missing.

The phlebotomy helped lower my triglycerides.
Mutations in the HFE gene, favoring iron overload and causing hereditary hemochromatosis, are associated with primary hypertriglyceridemic phenotypes.  I was in this stage.

The HFE gene makes a protein in the intestine that regulates how much iron your body absorbs from your diet, including your food, vitamins, and medications. If you inherit two mutations in the HFE gene, it does't work properly
https://academic.oup.com/jcem/article/94/11/4391/2596710

https://academic.oup.com/jcem/article/94/11/4391/2596710


The change I realized, was the amount of phlebotomy done, and becoming anemic.  But this did not account for the Gut Microbes missing. I did stop the VSL#3 ds pro biotic, as I did not have Ulcerative Colitis, as led to believe for two years. New GI Doctor and GO Dr, showed me diagnosis, and why this Dr led me to believe I had UC. But I did not have symptoms.

VSL#3 ds may be crowding out the good bacteria. --------------------------------------------

My new GI Dr at the university of California, had taken me off Metoclopromide, which is used in MS  patients to help gut muscles move.  He put me on Trulance, that caused accidents. Something nobody wants to talk about.  He put me back on metoclopromide, once knowing how much that was helping, a three months off period.

I was switched to Linzess, polyethylene Glycol (miralax), along with Generlac (lactose).
I tried adding psyllium hulls, with no success.

I read up on many good probiotics that work in the lower Gut, so my new protocol is trying different ones, and to see if they will help. If anybody has recommendations, or a company Needs a review of their product. let me know!  Even looking at ones to help improve the mood.

 Both my new GP, and GI Doctor agreed on keeping the protocol, to keep things moving, without straining.
Seems to run as genetics I believe. As have siblings and my mom with similar issues of gut and intestines not flowing as perfect. I find in genealogy of many prior generations having same issues. They wrote it differently, and did not have medicine that is now available.   This can cause many problems, if chronic constipation is ongoing.  Much more if you are dealing with Multiple Sclerosis.  So No Straining, use a block of wood to prop your feet on, and reading material to relax and read. Yes, that is  the protocol now, for those that were told different.

Ok, back to being a butterfly for the moment. https://youtu.be/io6Yi_z7SpY
Cheers
Thanks for reading, and leave me some feedback!
JoeY

Pickle Juice

As I mentioned, this blog jumps around some.  This talks about Pickle Juice. Hype or Real.  Last year, as I was just reminded, from the Multiple Sclerosis Magazine,  I asked one of the Sponsors of the Bike Marathon, that had a booth for Multiple Sclerosis bike riders if the Pickle Juice they had, would help my  Spasticity with Multiple Sclerosis.  I would of loved the bike ride up the coast, and the wineries along the way.  I've ridden 50 miles once, but that was thirty decades ago. Knowing the Charlie horses or tight muscles are different then the ones for Multiple Sclerosis.  This I knew first handed, but was still curious if they had a product that would help.  We see a lot of bike trainers using our steep mountain roads to train on where we live, at 3,000 ft elevation.


Pickle Juice sent me a six pack of their product to try.  picklepower.com
 I checked with my neurologist if he was opposed for me to try. He said bike riders get muscle cramps from imbalance of electrolytes by peddling so hard for so long.

In Multiple Sclerosis, it's the sheath coating from the brain mis firing signals to calves, or other muscle groups, that cause them to tense up, or become Charlie horsed, and stay Charlie horsed until the signal from the brain let's up.

Giving pickle juice a try, yes it taste like fermented pickle juice, but without the pickles. A interesting product, as in its own bottle.  I would think gym training athletes, or bike riders that are needing quick electrolytes, or others on a rigorous routine would benefit that need the electrolyte balance, and from real fermentation of pickles, instead of a sweet drink.

It was a no go for my Spasticity however.

  I use some odd concoctions already.
Baclofen, I am maxed out on. A baclofen pump to be implanted has already been turned down years ago from reading some other blogs.

A small amount of diazapam is split up to help during 24 hours. I make my own oils from the marijuana plant, along with using alcohol to make other tinctures.  I am still looking for the proper combination or strain of the plant to utilize. If anyone has recommendations, or seeds, let me know.

I make my own quinine to obtain 30 mg. The same quinine used to make a Gin and Tonic water, just without the Gin.

 See my blog on Quinine-toxic-or-helpful? . A shot glass usually relaxes Charlie horses muscle.  This Needs followed by a neurologist and cardiologist, and may not be for everyone.  I do not have a gag reflex, as a swallowing study done showed

More interesting items is Mustard. A Tablespoon of plain yellow mustard has properties that science can not explain, as when it hits the stomach, it's effects start to release muscle cramps.
Sometimes it is slower than quinine, but works.

So if you are a avid bike rider, I would put a bottle in my pack, And give it a ten star. Worth trying picklepower.com

If you are a company, wanting me to review a product, let me know.

As for others, let me know what help with your Multiple Sclerosis cramps, Charlie horses, muscle twitches, the MS HUG, or different parts of the body, what muscle groups have the most problems.

My Neurologist, injects  onabotulinum toxin A into my calves, and into my neck muscles to calm these mis firing nerves, that cause me problems. It helps tremendously, and has kept me walking with a cane.  He is limited by insurance to doing this every three months.  It only last for about 62 days with me, and others.

Ampyra is used also, that has definitely helped me.

Thank you for reading
JoeY

https://rarepatientvoice.com/EverchangingMS/

Turmeric or Curcumin

how-to-grow-turmeric-care-uses-benefits/

My Neurologists is writing a paper to read at a upcoming convention. It's all about Turmeric I will call this, as he started me on a heaping spoonful of Turmeric per day last year.  He Wanted to know it's weight.   My heaping teaspoons may differ than others, so I took a average, and ended up with two Tablespoons Turmeric.

Turmeric Powder, dry
Tablespoon = 6.8 grams,  which has .136 grams Curcumin, or 136 milligrams curcumin, the active source of Turmeric you want

To make this viable,  a teaspoon of freshly ground pepper was added, along with two Tablespoons of olive oil. Coconut oil or other could be used. I would mix this  with two Tablespoons of Turmeric in a small stainless steel container, and downed it like a shot, being careful not to get anything on any surface, as it stains everything. All three are needed to make turmeric absorb, and give it the extra kick.

The  Turmeric curcumin plant consist of 3-4% curcuminoids, which is the active ingredient. This curcumin  I found at Pure Bulk, with quality control sheet, showing what is in it. A whole different reddish orange powder, and much stronger. A 1/4 teaspoon equals 1250 mg of curcuminoids.  The Neurologist has me shooting for 1500 mg curcuminoids daily.

A one pound bag of Turmeric cost about $6-12. I Purchased  on the Internet, From Starwest Botanicals. This looks easy to grow by following How to grow Tumeric in pots

 This is where companies try to confuse you when buying their pill.  A cheap filler, you get instead of 95% curcuminoids. They give you lots of fancy language.


 The pure Curcuminoids, I bought from Pure Bulk, in a 250  gram bag.  The cost seems to of doubled, but you can tell from the colors, what is real.  They provided me with the COA sheet, of what's in it.
Fresh ground black pepper was also added of a teaspoon. You can buy this as BioPerine© in 10 mg pills.  I used two Tablespoons of Olive oil, as the oil absorber needed.

My Neurologist at this point wanted me On 1500 mg curcuminoids, as this was the active ingredient being used, for the best results. This was being used for my Multiple Sclerosis, along with my DMT, and twenty other drugs. Degenerative Disc Disease plays into this, along with Iron Overload, Thick blood, known as hemochromatosis, which is hereditary. The HFE gene, H63d/H63d  inherited from both parents, both were mutated somewhere in the family tree.

 This was caused by two Rare copies of the H63d Gene. My brother also has this condition. Rare Diseases, only found one other in a ten year search with eight articles. I need a researcher to do some studies, hope they are reading.

rs1799945, also known as H63D 

The HFE gene,  the H63D mutation tells us is that normally in this necklace the 63rd bead is the amino acid histidine (H). But, people with this mutation have an aspartic acid (D) bead there instead.

neurodegenerative-iron-hemochromatosis

This change causes this protein to not do its job. A single wrong bead has put a kink in the necklace!

So this is why H63D can cause problems with iron in our bodies. It results in an iron-sensing protein that can’t sense iron as well as the un-mutated version. This caused Iron to store up in my body since I was a kid.   I have done 17 phlebotomy's undergone in a weekly basis.  Iron is absorbed by the small intestines, and builds up in the liver, heart, and organs. Causes many problems including Metabolic syndrome.  This out me into what the Cancer Dr told me, as slight anemic.

where am I going with this?  There is a chelation agent,  known as Turmeric. The more you learn, can be amazing, on how to help the Iron get out of the body, parts, and the positive effects Turmeric and Curcumin have, besides on inflammation, and the wonder drug articles talk about

The only thing the barbaric phlebotomy is only used with Hemochromatosis or high iron, and that only deals with the sluggish blood. Read my other blogs for pictures and details.  Mine came across as high, hemoglobin and hematocrit. Interesting that ferritin was not off the charts, and thus could not be used to track my phlebotomy. My brothers, however, ferritin is way over the range.

Turmeric and Curcumin have some great qualities by just searching the net.

“If you want anti-inflammatory effects you need to get 500 to 1,000 milligrams of curcuminoids per day.”about

Research with Multiple Sclerosis seems to be ongoing, so I will consider me a test subject, and try to document facts I see or understand. I am not a Doctor, or Scientist, but would welcome feedback.

The compounds that give turmeric’s yellow color, and are also bio active agents that have anti-inflammatory, anti-oxidant, and anti-microbial properties. Of the three main curcuminoids present in turmeric (diferuloylmethane, demethoxycurcumin, and bisdemethoxcurcumin), diferuloylmethane, more commonly known as curcumin, is by far the most prevalent and has received the most attention.


The Majority of turmeric supplements on the market advertise that they contain standardized 95% curcuminoids. The key here is the word, "CONTAIN". This is why it is vitally important to look at a supplement ingredient's panel. Most turmeric supplements will only contain a small amount of curcuminoids.

However, we know that the key to any turmeric supplement is 1000 mg of 95% curcuminoids. Anything less and you're wasting your money!

They use plain Turmeric as a filler, trying to confuse you that it has 1000mg curcumin, but a line below may then state 100mg extracted curcumin to 95%.  A maze, as do many curcumin products.  Look at how many pills you need to take also to obtain the dose.
It took me a while to sort out, with pills bought from many companies, and then compare them with 95% pure curcumin I make into pills.

• Bottom one contains 1300 mg curcuminoids made from 95% pure
• Top left, two pills for 750 mg curcuminoids
• Middle top only gives you 100 mg curcuminoids for two pills, 1200 mg turmeric
• next is One capsule gives you 50 mg curcuminoids, and 400 mg turmeric

and final One capsule  gives you 500 mg curcuminoids, but extract is 93%

• 

Since I also want Tumeric, I use as 6 ounce resealable  containers. I add 2 Tablespoons of Turmeric Powder, 1500 mg curcuminoids weighed out,  2 tablespoons of olive oil, perhaps  another oil I will try, 10 mg black pepper, freshly ground, (or I take a 10 mg BioPerine© tablet) shake well with some water. I Might try juice, just enough to get mixture so it's drinkable.
I can make a dozen of these, adding liquid when ready, so ready for use

I also use a pill maker, getting 625 mg curcuminoids into each by weight. So a couple of those, BioPerine©, and some oil in a small container.

When making, remember this will stain anything. Pills need wiped down, a old  pill bottle labeled, outside of bottles wiped, any surfaces cleaned, and your hands.
dishes, or anything that contacts the powder will turn yellow.

  Do not expect to buy a quality curcuminoids from the box stores.

Bioperine©, purine, is a fancy name for black pepper. It can be bought separately in 10 mg from swansons, puritains pride, or other vendors. I also bought a pound bag of peppercorns, and a fancy electric grinder my mom sent to grind.


The one on the bottom contains 1300mg of 95% curcuminoids, comes from a powder form, and pills made. Do not forget the black pepper or bioperine © and some type of oil.

while the last one contains turmeric root powder which as we know, only contains 2-3% curcuminoids. It's front label states 500 mg per capsule Tumeric Curcumin, making you think  that's one to buy. Turmeric curcumin with bioperine, with claims "may".... Curcuminoids from Turmeric... And more you search the front labels become more confusing.

Powder I utalize. 

A proprietary formula is a fancy way for manufacturers to get away with not telling you exactly how much of a certain ingredient is in that supplement. Take a close look at the table of contents.  If it does not tell you the exact quantity of each item in their priority blend, it may be just a wave of curcuminoids over the top.  They are getting sneaky, trademark names of their special additives.  One I found was beads of oil surrounding the curcuminoids to make it more absorbed, along with BioPerine©. A expensive supplement. Perhaps works better, but cost prohibitive.


Certificate of Analysis". What is this certificate and why is it important? This certificate is something that all QUALITY manufacturers should get with each and every batch of their supplement they create! You can ask for it.   A Quality supplier, will refuse the batch if it does not make standards.


The main product of turmeric is the aromatic yellow-orange powder used in curries and many other recipes. The powder is made from the dried rhizome of the plant, and it contains curcumin, the bio active ingredient that is responsible for the rich color and many of the benefits associated with the spice.

The fat content of turmeric includes around 34 different essential oils. One of these, aromatic turmeric, is currently being investigated for its potential to treat neurological diseases.


Before the spice can be ground, the rhizome must first be cured. The following are the basic steps involved in processing turmeric powder:
How to harvest turmeric, the basics, and need to know

what-is-turmeric-how-to-harvest-health-benefits-and-more

What you need to know before buying curcumin

Me First Living Turmeric Curcumin 1000 mg 95% Curcuminoids, Bioperine 10 mg,

Starwest Botanicals sells Tumeric, and Curcumin by the container/pouch
Bulk Supplements sells these by the container/pouch. High quality.

If you are looking for pills, for easy use
Swanson Vitamins  sells curcuminoids 350 mg
Puritains pride turmeric powder extracted to 93% curcuminoids, 500mg wonder what else made it in?

BiopPurtine© or Fresh ground black pepper is  needed if not included in all pills.

Many others with special labels, to confuse you, or sign you up on auto ship. Do not do that. A Reputable company does not need auto ship, as they know you will come back to them to re-order if they have a quality product.

A oil is needed to help absorb. Olive oil, coconut oil, butter, gape seed oil, or your favorite.

The taste, something to get used to? I mix mine, just enough liquid so I only have one gulp. Let me know if other ways.

if taking capsules, I ensure  10 mg bioperine© is in the combination, try to ensure close to 1500 mg curcuminoids, and some turmeric is in the pills. Mix and match,  knowing I have pre made bottles and on a average  I am meeting dose of Tumeric, and curcumin.

It's to early on to comment if this gets me off the 800 mg NSAID or other meds I use, the positives hopefully outweigh the negatives.
Below is more links I read.
.Gov article about curcumin and turmeric



Thanks for reading.
Let me know if you find other pure suppliers. Our there!

Update November 2019
I have increased Curcuminoids to around 2500mg daily with 2 Tablespoons oil, and 10-15 mg of black pepper.  This is so I can stop 800 mg of Ibuprofen, that may be messing with some labs.

JoeY

What happens if your gut derails

As I mentioned, this blog will jump around some. Some makes more sense now.

A first line pain medicine that was dirt cheap was used in me.  Indomethacin.  This tore up my stomach, causing acid reflux, more pain, and the Doctor to prescribe Omeprazole.
I was in name brand Omeprazole for years, due to insurance. The pharmacists would go out to the shelf, and grab a couple packages, and put my prescription on it.

I was taken off  Indomethacin, but the damage was done. Never had heartburn, or Acid reflux my whole life until this Indomethacin was introduced.  Now I wonder how this drug effected my gut or small intestines. May never know, but thinking back of why I was out on Omeprazole.

Eight years later, I still use Omeprazole. This may be due to damage, never restored to a normal gut, age, or many of the other meds added over the eight year course that also may cause damage.

All is not MS, so I had to find out stomach issues I was having, that may or may not be MS.

I had a upper and lower colonoscopy/endoscopy two years ago, ranitidine was added. A new one that helped.  However, I was led to believe I also had Ulcerative colitis for the next two years by the Doctor.  I was out completely under for This procedure.


Ulcerative Colitis is one listed with Rare Diseases. A high dose of a probiotic, known as DSL#3ds is supposed to help. The cost was more than I could afford. Nord (National Organizations of Rare Diseases) has a patient assist program, so I applied, and was on Nords list to receive two boxes a month surfing the next few years, taking a massive amount of probiotics.

A Trial of this VSL#3, was also ongoing at UC Davis, San Francisco. So I was following that study, but knowing I received the real VSL#3 probiotic. That study ended, with mixed results, as perhaps not all the right probiotics were in VSL#3, for Multiple Sclerosis.


VSL#3 contains only eight strains, and has to be refrigerated. I have a lot of now empty cooler boxes and Ice packs, if anybody knows what to do with them.

Ubiome.com, a start up company out of San Francisco was contacted, as a Gut study of microbes was going on. I fell into being part of this ongoing study to this date.  Their reports changed over time, but would tell me microbes in Gut. Yes a small sample of feces in cotton swab into a glass vial was sent to them. Many probiotics were missing, or being crowded out by VSL#3.  At one point, I had No microbes of any probiotics in me. Weird, but knew a turn in my health took place at same time.

  Extra Gas from probiotics and pre biotic foods, such as flax meal, prunes, seeds, nuts, and other things were effecting my gut.  But that's for another blog with a new GI Doctor that undiagnosed, along with my GO Dr, ulcerative Colitis. Never had it. GI issues, yes, but not UC. I was relieved, but now what was needed.

Chronic constipation. Trulance was tried. Linzess was next with Miralax, known as polyethylene Glycol. Not on that later.

Guess this is more about the digestive system, being complicated. Finding out what runs in my family tree, and a lot more information learned in eight years looking back at why I am still in omeprazole.

A link.    Listen to your Gut
https://www.purityproducts.com/blog/listen-to-your-gut-is-your-digestive-system-the-gateway-to-better-health
I found interesting.


I found this written by Dr Orrange posted in goodrx.com

"Dr. Orrange is an Associate Professor of Clinical Medicine in the Division of Geriatric, Hospitalist and General Internal Medicine at the Keck School of Medicine of USC.

Posted on March 22, 2019

Omeprazole (Prilosec) is a cheap, generic medication available both over the counter or with a prescription. It belongs to a class of medications known as proton-pump inhibitors (PPIs), and is one of the most popular medications in the U.S. It’s used to treat heartburn, reflux disease (GERD), and ulcers. Many people also use omeprazole to protect the stomach when taking NSAIDS (non-steroidal anti-inflammatory drugs).

Even if you’ve been taking omeprazole for a while, here are five things you may want to be aware of.

1) Disruption of gut bacteria

Studies have shown that people treated with omeprazole have different types of bacteria in their gut compared to untreated patients. Specifically, people taking omeprazole have higher counts of “bad” bacteria like Enterococcus, Streptococcus, Staphylococcus, and some strains of E. coli. Why this matters is not fully known. But, the bacteria in our guts play an important role in our defense against pathogens, so disrupting the gut flora may be a downside of omeprazole. It might be why people taking omeprazole have a higher risk of getting C. diff diarrhea.

2) Omeprazole vs. other GERD drugs

Is omeprazole the best medication for stomach issues? Well, studies show omeprazole works better than rabeprazole (Aciphex) for a variety of stomach issues, but it does not work as well as esomeprazole (Nexium) for GERD.

3) Omeprazole and heart attacks

A study published in August 2016 found that taking PPIs like omeprazole could be a risk factor for heart-related complications. How severely omeprazole impacts heart health has not been fully explored, but in this study, long-term use of PPIs was associated with a 70% increased risk of cardiovascular issues—and risk increased with longer use.

4) Omeprazole vs. acupuncture

In a study from 2016, acupuncture was found to work better than omeprazole for GERD. The researchers compared GERD symptoms in patients taking omeprazole versus those undergoing acupuncture treatments over 8 weeks. After the study, both groups’ symptoms improved, but acupuncture was significantly superior to omeprazole. Worth a try!

5) Omeprazole “as needed”

Unfortunately, omeprazole doesn’t work on an “as needed” basis. PPIs like omeprazole take five days to reach maximal effect. So, taking it on an “as needed” basis will not provide enough acid suppression and symptom relief. However, some histamine-2 antagonists, like cimetidine (Tagamet) and ranitidine (Zantac) are better for that. "Dr

Look at my post Turmeric or Curcumin, as links says it will help


Thank you for reading
JoeY

Sacramento MS walk

This is my first MS Walk for the National MS Society in Sacramento, CA
I am On left, standing with a cane made by Dale, with Diamond Wood, from the interior of Alaska.  I have never met them,  but younger brother has. He made this masterpiece about 5 years ago


National Multiple Sclerosis Society - Official Site www.nationalmssociety.org

I put a team together, called EverchanginMS.
 Wil and I were the walkers, and had two virtual walkers, my mom from Juneau Alaska, and  Matt Allen  from southern CA raised money, being a virtual walker. Have to thank him and family and his friends
http://mattsmultiplesclerosis.com/

My brother, Keith, put a Team called centennial avengers  in New Mexico.  Knows a lot more people
https://secure.nationalmssociety.org/

They should have a fun time, to get to know co workers, and walk. It's in the principal of creating awareness

There was a big turnout for the walk.  I had to email city of Sacramento, as they showed all Parking full. Just a button they needed to press, to make garages available.

Parking was confusing, if you read the instructions, they were different, as the only way into the garage was pushing button for ticket, and arm raised. Two machines, outside, with only one working said to take ticket and prepaid code back to the machine, and you would have 20 minutes to leave.

That was not the case. Readers on machines with arms would not let us out unless we paid again. Attendant was called. Guess she runs between all the garages. But for her to get us a receipt to raise arm, she had to stand in same long line others also were having trouble with.

So  email back to city showing We paid again to get out, even though to reserve a spot, you had to do that online, and pre pay.  Felt sorry that the employee did not have tools to do her job, and had to wait in line. She should of had a bar code reader, showing you did pay, that would raise arm. We flagged people around us, trying to get out.  And seeing how bad it would be for the new arena built downtown, for people paying at one terminal working, to validate ticket, that still would ask for money when exiting. Think wording was wrong at entrance terminal, that said to press button for ticket. Did not see any reader from passenger seat, or instructions that said or enter your bar code.

The Walk was fun. They had a dozen plus booths from the Drug companies, making sure you got a water bottle, a pack, and goodies with information. Even one of the newest MS therapies was there with a single sheet of paper telling people about one of the newest drugs.

plus there was a table full of bagels, cookies, bananas, water, and another table serving coffee, having cups pre-filled, so no lines.

We were glad to of obtained  the material before the walk, as they quickly ran out of their trinkets.

A booth labels UC Davis, also was there. Wil said I see the Dr there, and then she turned around. I was able to meet her team that runs in the background, handling questions, and emails. Was great to see her there, as I had seen her The week before in a office setting, asking questions.

A second loop was a three mile loop to the bridge, A lot of people did with their groups..
But to far for us. The grand final was a cheerful crowd clapping and cheering us on.

A Trip to Costco, for their $1.50 hot dog, and seeing how people buy truckloads of "stuff" was our lunch, after we test drove a Echo sport car for the first time. It was roomier inside than it looks. A all wheel drive with four cylinders, drives different than the three cylinder one.

A real tire mounted to the back would be a must, and all wheel drive, as we live at 3000 ft level.

https://www.ford.com/suvs-crossovers/ecosport/?gnav=header-all-vehicles

A jeep is still being looked at, as it has a real spare tire, and able to lock the 4 wheel drive. A must for snow.

A Subaru was also test driven, as they keep their value, all wheel drive..I
All wishful hopes, for reliable transportation.

Our cars are 25+ years old, and the failure for the mandate of the state of California to provide rides for me is in court, as I have exhausted all means of rides to specialists I need to see that are far away.  The State took three months to find me  a driver, that gives rides, He is in our county, and has been  doing business for years.

State vs JoeY

 Just know State has put A lot of legal people On this, and wasted resources, that could be used in a better manner.  flying people up to Sacramento.  Can see why somebody would give up on transportation, especially when retaliated, after taking a year and half for someone to be  licensed. 

For me, the search for rides goes back to 2013 to find someone, after exhausting all resources in all the counties.  Then three months, after finding the State was Required, but they could not find the licenced guy just down the road.

I am awaiting a judge's decision, as already went to a hearing, given 30 days for judge to make a decision.  state asking for two extensions. The last was to retaliate it would appear.

Enough rambling, but perhaps This case will will help others.

Thanks for reading
JoeY

Bowel constipation and intestines

Bowels, constipation and MS Poop

I have mentioned some of these items of Constipation, Diarrhea, in prior blogs, but figured everyone needs the down and Dirty of living with Multiple Sclerosis and dealing with issues.

First a quick YouTube video, made for kids and adults to watch, as animated of What goes on after you eat.
https://m.youtube.com/watch?feature=youtu.be&v=_2HDeSNQbio



I have dealt with this Since before my official Diagnosis of Multiple Sclerosis.
Many People, even without Multiple Sclerosis deal with Constipation and Diarrhea, so this blog is for them also, and of any age this can occur.

My Mom told me a story of when I was a little baby.  I had not gone poop for quite a few days.  My mom's Mother, Grandma came to watch me for the evening, and said she knew how to make me have a bowel movement.  When my parents came back,  Grandma said I had a bowel movement, and did not explain how. She was a nurse in the military thru the wars. She passed away at last year. President Trump sent my mom a Thank you letter for Her mom's service.

Her two Daughters when growing up, we're made to have bowel movements daily, by her mom, regardless. This would be in the 1940's. I could only imagine what was available to make this happen. Enema s, cod liver oil, suppositories, and more.

A Story goes back to the 1800's, when poo paddles were made out of wood, and in the Midwest, that was common to have poo parties to clean out any blockage.

Nothing much has changed, except for research, and finding knowledge of what works or does not. Perhaps Gene related, or eating habits, or never having the knowledge of how often to poo, or what it should look like.

Poop scale from web MD

With my MS, at the beginning, I made a emergency contact With my Dr, as I had not gone poop in days, and days went by until I could see the Dr. He put me on Generlac, which I still need and use.

With Multiple Sclerosis, the Va gnus nerve can be damaged, which sends the signal of What should be happening thru the entire digestion, and when you should go.

Another issue is so many medicines can make you constipated, or have diarrhea, as a side effect. Many medicines for others without MS, also can cause this.

My mom, the issue of growing up, being made to go, caused he bowels to become lazy. There may be a Gene also passed down, that caused bowel problems.

With Multiple Sclerosis, the disease effects the nerve fibers, which your body is made up, that controls muscles. Think of the video. Swallowing takes certain muscles to move the food to the stomach. Swallowing issues are common with MS. I have this condition, and slow moving food.

Next comes the stomach, to digest the food.
Many people with MS, and without use protein pump inhibitors, like prilosec, antacids, to control gerd,  due to medicines, or foods. I have been on these for almost a decade. Added was ranitidine to my daily medicine regimes to help. This one helped! Still on generic prilosec, as that helps.

Then comes the intestines. Another Muscle affected by Multiple Sclerosis. Many MS patients use metoclopromide. This medicine comes with dangerous side effects though. It causes the muscles to move the processed food along thru the intestines, contracting the muscles. This helps tremendously for me.  Old folks home uses this drug, and a side effect is smacking of lips. More dangerous non reversible side effects can occur. I was taken off, and put back on this medicine, as the benefits outweigh the dangers.


Soft tissue damage can also occur when the poop becomes hard. This can happen anywhere along large or small intestine.

I have done a upper and lower colonoscopy. Where the Dr decides to snip pullups off, to biopsy for cancer, those areas can bleed. The ladies in quilting class today were talking about this subject. Quite interesting of their experiences. I was completely out under for mine, while others were awake during procedure. The gallon of liquid to clean you out is better than the pint of goop. Stay near a bathroom, and Don't fall asleep, or accidents will happen.

The upper, Dr uses a scope to take pictures of stomach, and opening as far down as he can in the large intestine, going thru the mouth and down throat. A problem area, if you already have swallowing issues, or slow movement. And could also create this problem.

The lower is done thru the butt, and up as far as they can go.  This can cause lots of trapped gas, or they can Nick any area in upper or lower, which also causes problems.

Simethicone is used by me for trapped air. This air caused  bloating and distentention, covered in a prior blog. But it breaks up bubbles. Not a complete solution. Now is metabolic syndrome going on.

I was led to believe I had ulcerative colitis going on for two years. I switched to a New GI Dr, at UC Davis. He undiagnosed me, along with my New GP who is a GO Dr. Symptoms did not match what was happening. I was On a mega dose of VSL#3 for those two years, which mimicked a study done for Multiple Sclerosis by UC San Francisco, as the gut plays a huge role.

About this time I had my first major hemorrhoid. A out tie, that I took a picture of, and sent to my Dr., As not sure if a ER visit to hospital was needed. Hemorrhoid cream was used for a month.

Because of chronic constipation,  I was finally ab!e to see a new GI Dr, at UC Davis. This took six months to get in for appointment. In meantime, trying different fibers, and over counter natural remedies. A potty squatter, or chunk of wood to put your feet on to obtain right posture, a massage of small intestine from right side up and across to left side and down.
The new GI tried me On Trulance.
This drug caused many accidents to happen. Was not addressing the distention and bloating, or straining still needed. He had taken me off metoclopromide, but put me back on the medicine, when he found out it was helping. He Added polyethylene Glycol to my daily mix, also known as miralax.
Three months later I was a candidate for linzess. May not be the answer completely, but is helping, keeping consistency of poop as Soft serve ice cream to liquid. Once or twice in the mornings.
I can assume internal hemorrhoids, as bypass of poop. But a lot less straining.

My first GI, said follow up in ten years, but I will not go thru a upper or lower colonoscopy again.
There are other options now. A box, you mail a sample to lab to check for cancer. Won't show pictures though.  There is a Camera Pill you can swallow, and it takes pictures thru whole digestive system.  I may be a candidate for this trial, for any researchers reading, contact me.

One of the ladies, said she read about this. Camera got lost. It was actually stuck in Tumor she had growing, so her story is still going on with unknown outcome, read it online.

I find in my family history, bowel blockages, ruptured bowels, and more in past generations, so only assume thin soft walls, that need care, without major straining to go is needed.  Any  surgery is not permitted, as I would not heal. Especially from inside to outside. This is to gene listed below, type of blood, and any blood needed, my body would attack, and make more iron, causing phlebotomy. So no surgery. Other means need tried.

 Google the term "poop in old days" For many remedies.

For those keeping up on blogs, jumping back and forth,
I stay slightly anemic currently after doing 17 phlebotomy to remove excess Iron from my blood since October 2018.  My bone marrow makes new blood cells. New cells made every three months. Going on month #5 now. But still anemi.

My other siblings with problems of  diverticulitis, after scope.  Dr prescribed Ciprofloxacin (such a lot of side affects for that med) and. Metronidazole to treat infections.
My mom, major internal, and became septic, when bleeding inside, and needed a lot of blood and Hospital care. 
 This is Nothing to let go on.

My Iron in from build up since birth.
This is due to a inherited gene, one from my mom's side, one from my dad's side. Known as the HFE Gene, H63d/H63d that changed  C to a G, causing a protien to never release iron. My Brother has exact copy, with Iron Overload, Thick blood, high hemoglobin, high hematocrit, high ferritin. Known as Hemochromatosis.  This is On top of my Multiple Sclerosis, with overlapping symptom's. Fatigue never went away, so MS symptom.

I now have doctors shaking their heads, as Hemochromatosis , but anemic.u

The opportunity to meet with a old Dr from years ago over coffee was amazing. Keep track of your good Doctors.   I just found out that my GO, is going on to learn more. He will be missed, but have me contact to stay in touch. That means alot, when a Doctor has interest enough in the patient to keep in touch as friends.

 To understand,  Hemochromatosis, as it does manifest with different genes, or may never know, this video is worth the watch to explain.
Watch this video,
https://www.youtube.com/watch?feature=youtu.be&v=_2HDeSNQbio&app=desktop
IRON MEN Living With Hemochromatosis HD

https://www.youtube.com/watch?feature=youtu.be&v=_2HDeSNQbio&app=desktop IRON MEN Living With Hemochromatosis HD

 on how the genes, normal or modified like mine, passed down thru generations, into next generations

Thanks for reading.
Subscribe to my blog for newest updates.
JoeY

Neurodegenerative Diseases

Recently, My Neurologist was doing  injections of Botox into both calves, and the neck muscle for spascity.  the muscles remaining in a Charlie horse state. Botox works for 62 days, but can only be given every 90 days

He has mentioned the large blood cells, or thick blood vessels I had since day one.  I was now able to tell him what genes were involved that created the Iron Overload. A possibility of the pituitary gland storing iron, as Testosterone and vitamin D shot up at the beginning of phlebotomy.

  I have a great Endocrinologist form University of California, Davis that keeps a good track of me. She is the one responsible for getting me to the Cancer Doctor, when my blood was not normal. She had done  a MRI of the pituitary gland, after ruling every endocrine items out.
 At that point I knew she was looking for a tumor. This came back normal. The Endocrine system was having trouble though.


My main neurologist,
He asked about other Genes involved, if I had The A004 gene. This is Alzheimer Gene, which was also passed down. My Moms dad died of this.  He agreed to review my DNA on our next visit. Iron is also involved in studies they have done. So a double whammy, but doesn't mean I will get late stage Alzheimer's.  I will bring him the DNA  that was this gene was passed to each child,  so a interesting reading. More research to keep my mind active.

A few other Genes listed, but 23Andme does not show you all. It's in the raw data, that would need uploaded to another site to tell you what the gene coding means. Blue eyes, or brown hair, or a bunch of diseases you may be susceptible to.  Still looking at sites, still trying to get my mind boggles down with information of this new DNA technology

These gene sites, including 23andme, can also tell you your ancestry. I have a ton of people related to, never knew about. Letting my sister and mom do genealogy of this new found information.

Multiple Sclerosis is a neurodegenerative diseases, along with hematomochrosis or iron overload,
Macular degeneration, celiac disease,  and a whole slew of others.

My Team, is made up of a  GP, DO, (Dr of Oseopathic medicine, who looks at the entire body as a whole) two Neurologist, Endocrinologist, GI Dr,  A heart Dr from Sacramento Heart, a ophthalmologist, a optometrist, hemotologist, Cancer Dr,  gene counselor, and their team of nurses, students, and researchers I utilize.

  they are keeping track of me, and the interactions of new symptoms.  I get my follow up visit in a few weeks, where I bring my notebook with me full of questions, or possible therapies for my main MS Dr.

All The other neurodegenerative diseases just pile On top of my Multiple Sclerosis.

My main Neurologists asked questions, and then  scheduled Me for a Lsep Test This last visit.

This is a test, they put electrodes on many parts of your head and your bottom legs. Many electrode sites hooked to a graph machine,  different electrical currents and pulses are then sent up the leg and back down to measure the nerves, speed and a lot of other technical items, from different parts of the brain.  The Neurologists keeps track of my MS, with these test done every so often.


MS took a turn this last two months. Stabbing knives alternating between the top of the feet down thru. Only happens at nighttime. My GP last month, told me my body was getting used to the drugs, and wearing off.  I went back thru my notebook, and assume I have found the culprit drug not working.  When cymbalta was changed to a generic, it only has to be 70% of original strength.  I used many generics that did not work, including naming generic brand for not working.

This I think happened again. With same drug, a generic of Cymbalta, wearing off in 18-20 hours, instead of being 24 hours. I did my own study, as cymbalta, or generic takes a few weeks to kick in, I had enough of brand x for two weeks,  so I used brand Y, For first two weeks with extreme pain awakening me around 3-4 am. This was followed brand x for two weeks, without problem. I then followed it with brand Y again, being awoken with jabbing pain in foot about the same time. Since mail order pharmacy, they just send what Aetna Coventry has bought the cheapest of, I do not have a say.  But with a half dozen tried, think name brand may need to be medically necessary, if I receive this sub brand again. But Need to let people who make it know,

I feel privileged to have access to two Neurologist. One Neurologist, perhaps in his 70s, his dad was a Neurologist also. He keeps up to date with what has worked, and what has not over the years. A very sharp minded guy, who has me even try concoctions I have made to obtain 27 mg of  quinine that stops the Charlie horses when botox wears off. A tablespoon of Yellow mustard
Also helps. No Dr's can explain this one.

He injects botox into my calves that stay in a continuous Charlie horse, until botox is used. Also this botox is injected into my neck muscles, where knots of muscles form. This is called  Botulism Toxin A, so different than one used for wrinkles.

I bring My notebook into his office three weeks later to go over research I have done, the yey, or no, or that was tried in 1960, or get him more info. His office is always full of paperwork, as he does not use a computer. A staff of three, that writes the schedule in a book, the other, a old computer for billing.

My other Neurologist is a lady from the University of California, Davis. She also keeps up on latest items, and research.  She is in charge of some researches going on,  but I can only see her every six months. Some visits are short of she is running behind, or longer if I am in need of time with her. She examines my reflexes, strength, walking speed, and types lots of notes of last six months. There may be a trial she will be involved in.


My other team consist of

 Ubiome.com, who does a Gut study of microbes in me. I was one of the first on their pilot study. They have came a long ways since then.  I share the results with my go and GI Dr.

 23andme.com who just did my DNA, along with the Cancer Center doing DNA also.

Iconqurems.com let's researchers look at your labs and questions.

Patientslikeme.com keeps a great record of medicines, started, stopped, adjusted, graphs on me and pain levels. Has all my labs in one place with graphs of levels. Has my DNA, and blood samples.

Allofus.com recruited 1 million people for testing with scientist to develop precision medicine. I was one of the first few thousand who joined. They are looking into my DNA, and keep me informed of their scientists and Test going on.  Perhaps future generations will be helped.

Managemypain pro is a great app I've used to see what medicine affected me, or where I was having more pain at.

I ask other well known bloggers also, to get their perspective. I always look forward to their emails.

Thanks for reading
JoeY

Also, if anyone wants to walk or virtual walk around the capital of California for MS, My team name is everchangingMS
Everchangingms Sacramento MS Walk or Virtual Walk

Rare diseases

Multiple sclerosis is listed with Rare Diseases.
Both Wil and I had The opportunity to go to the Rare Diseases Convention held this last Saturday, in Sacramento CA 2019. rearediseases.org

They had it set up for 75-100 people, but I felt more connected to the small group of sixteen that showed.   Wil and I, the only guys.  I could not keep up with the disease names or short names the people had, or a loved one, like their child died from.  names of diseases never heard of and years to get diagnosed properly.   This conference covered rare diseases and the orphan diseases, which is a disease that has less than 200,000 people that have the disease.  So my rare rare H63d gene that I received from each parent, that was mutated, perhaps a hundred years ago,  is quite rare with me, and my older brother, and one other in 10 years I found. Would love to hear from anybody with both H63d genes that caused Iron overload, for paper to submit to researchgate.net, so other researchers can look at.

I have been in iron overload, with phlebotomy every week since October. I became anemic since January, and numbers not coming back quickly, as my bone marrow makes new blood cells.
My brother, did not know he also is in iron overload. It shows up as high ferritin with him, and bronze skin color.   Bout in the big toe is a sign of iron overload often overlooked.   high hemoglobin and iron saturation with me. Two genes, part of HFE, identical H63d DNA which causes the protien that turns on or off the uptake of iron to the body not working properly.


Rare Diseases had a nice breakfast and lunch spread  set up for us.
The presenters knew their materials and answers to questions asked.

There were some sniffles, and the lady who sat next to me, using mega Vicks vapor rub, so I hope the zinc I Take will head off any of the people that have been coughing or have a cough is not contagious. I can not take vitamin C, because it attracts iron. Fortified cereal, and a lot more items contain iron, or extra C, that I can not tske.

I was glad the conference wrapped up by two, as my body was becoming stiff, and MS symptoms not settling down.  We were quite tired by the time we got home to Wil s Mom, who made home made lasagna for dinner, which we enjoyed after she came home from church.

Our dogs got their walk before rain hit, and we're glad we were home. A night in Sacramento was spent before the meeting, sponsored by rare diseases, as the distance was far for Wil to drive.


I forgot to mention their new site https://rareaction.org/resources-for-advocates/

Thanks for reading
Joe

H63D + H63D causing Iron overload

H63D

Gene: HFE

Marker:rs1799945

G

Variant copy from one of your parents



G

Variant copy from your other parent

 Biological explanation

The variant tested is a change from a C to a G in the DNA sequence of the HFE gene. It results in a protein that can't properly control the amount of iron released from cells.

A Iron ferritin test will not show, says normal. It takes the Dr to look at my Hemoglobin and Iron Saturation to obtain results. If iron saturation is greater than 3% and Hemaglobin is greater than 12, a phlebotomy, AR also known as a venIpuncture,, will be done, for those wondering, or researchers interested. 

Phlebotomy is the collection of blood by one of several methods. These methods include: 1) performing a finger puncture with a small lancet to let blood drain from capillaries, which is then collected into a very fine glass tube (capillary tube), a pediatric (microtainer) collection tube, or onto blotter paper; 2) a heel puncture, in lieu of a finger puncture, for neonates and infants; 3) venipuncture; and 4) arteriopuncture or arterial puncture.

Venipuncture, as it relates to phlebotomy, is using a needle to puncture a vein from which to collect blood into a syringe or evacuated tube. (Venipuncture can also be used to introduce into a vein a fluid, such as a medication or a contrast for radiology, but that falls outside the scope of phlebotomy.)

I have only found one other person in ten years, that had done a study of with This rare gene.  Even 23andme DNA, does not say you can be in iron overload.



This is one of the best explanations of how the gene changes a protien, to cause problems.

https://labtestsonline.org/articles/genetic-testing https://labtestsonline.org/articles/genetic-testing

https://labtestsonline.org/genetic-disorders
https://labtestsonline.org/genetic-disorders

https://labtestsonline.org
https://labtestsonline.org

I have been in Anemic Stage since the beginning of January 2019, since doing weekly phlebotomies since October 1, 2018. I have not done any phlebotomy since, as my numbers still are dropping. I emailed my Cancer Center Dr, to make sure I do not get into trouble stage, with such low numbers, along with The phlebotomist center nurses called me, to keep a eye on me.
The only side effect have is I get out of breath, doing simple items. Complete trying to catch my breath, like hiking at 15-20,000 ft elevation. My body not getting enough oxygen, due to new blood my bone marrow is making,  with less oxygen per cell to utilize.

Since this is such a rare blood disease, most doctors do not have a clue, or do not do enough research to find DNA.

 A liver Dr, stood across the room from me, and said there was no possible way I had Hemochromatosis, or iron overload. That I never needed Any phlebotomies. His assistant, who came in before The Dr did, explained some liver test they wanted to do, for uptake of iron from The small intestines to The liver, possibly the cause of The metabolic syndrome going on in my stomach.  The Dr wrote a electronic note to all my other specialists, that said I did not have this


So I spent a day to quote some Items of Yes, I do have Iron Overload. These are the genes involved per my Cancer Center Doctor, and Emailing his quote to all my other Drs.

I was referred to The liver Dr, by my GI Dr, to see iron loading in my system.

Then there was the Gene Dr, for a consultation on the rare gene I have. She quickly dismissed this, and said to send her hemoglobin reports from family members, saying it just ran high with everyone. I did this, and then the format.. My brother supplied 27 pages of hemoglobin reports.


When emailing family,
My siblings stepped in, realizing, this gene was real,  and could be passed down and they did a 23andme test in December, including my mom.  I had The opportunity to see how this gene was being passed down, and think 200 years ago mutated, or unknown. This  just aligned exactly with me and some siblings, others are carriers, who passed The gene to their kids.

I emailed this info to my Gene Dr, as next appointment was a few months away. A email response was thank you. No follow up needed.  The next week was a call of why I cancelled. This brought the Gene Dr to call me personally. I had unanswered questions, and still do, as our three minute talk was not enough about this rare gene, or that I had taken time to find This gene running in my family.

So a full-fledged rollercoaster type of last few months.  The State finally supplied me with a driver and vehicle in January 2019.  I have asked since 2013. Weekly tolls were not nice to our 25 year old cars For the drive, and quite costly, but more On that later.

NORD, National Organization for Rare Diseases,  emailed me about a rare disease and orphan disease convention they are having next weekend in Sacramento. Ensuring a hotel For prior night, as it starts early. So more On this later.

Thanks for reading. If you know of anyone who has thick blood, and these genes line up, would  love to hear.

Thanks for reading
JoeY