Mis-Diagnosed before Multiple Sclerosis

 This blog takes you through a misdiagnosed and my being diagnosed with Primary Progressive Multiple Sclerosis, but the first mis diagnosis was Chronic Regional Pain Syndrome.


Just to talk about mine, and what works with me, probably will not work with others because of their DNA make up of genes, and other factors.
I was going to put lots of links to what was going on, but figured you, as a reader, or scientist, could follow, or look up.


A regiment I have been on for over eight years, which keeps me going, of twenty four medicines right now, with a Correct Diagnosis.   But this was not The case at the beggining, when they were trying to figure out what was happening.

The first part was during diagnosing me.  They diagnosed me with CRYPS, chronically regional pain syndrome... which is not much better than being diagnosed with Multiple Sclerosis

The Mis Diagnosis was for about a year and a half.

I remember Dr Quack, as I would call him, told me something is wrong with you, but the insurance (from  A large corporation working for, self insured) would not let him run any tests.  My hands were doughy, feeling, sweaty, but calmy. These were almost frozen in a grasp position. My pain would cross over from one leg, thru both arms and down (or up) from the other leg and hands.
I could not different which way The pain was traveling, but the Dr said impossibe.

  The Dr tried me On 0.2 MG of clonidine. This is a heart medicine, but also a old MS medicine. This gave relief to my hands. He had me go to a 0.3 MG tablet, and back down to a 0.2 MG tablet to find differences. This took months, to see the difference.  A 0.2 MG was decided on in 2010, with a lot of unknowns with the cryps diagnostic.

He had my blood pressure checked sitting, standing, lying down.  This still may be of help to future scientists, as these were far off on readings.  My current heart Dr encounters it to multiple sclerosis, as, like I am always running a marathon, even though my body is sitting.

The clonidine was increased to a 0.3 in 2019 to again help the claw fingers from continuing.

Tramadol for pain was tried, with horrific effects, causing no urination.
Soma was tried, as a muscle relaxer.  It Wired me, instead of relaxing muscles. Allergic reactions to both.

 indomethacin was given for pain. It burned a hole in my stomach to this date.  The ibuprofen was used for pain and inflamation. Another nasid that wrecks your stomach. But does help in given circumstances.

A CRYPS diagnosis was given.  Chronically Regional Pain Syndrome. Not A good diagnoisis.

The only neurologist in the area did test on both wrist, only after the hospital emergency room splintered both wrist, As carpal tunnel syndrome, and to follow up with local neurologist.

The only Neurologist, wanted to prove the hospital wrong, stating There was nothing wrong, doing his own tests to tell the insurance nothing was nothing wrong. This included false records, by ice being put on wrist, to get readings he wanted. He needed to keep company "A" satisfied.
his office tried to send me to a private MRI, at My expense, which was not a option.

But the worst Drs were to come, that were required to see, as because it happened at work, I was forced to their workman compensation insurance program, required to see their doctors.

The company was large enough to be self insured, and had the state insurance commissioner, actually working for them.  Yes a conflict of interest.

I was sent to one dr , who wrote a 50 page report, on how I ran to the room, which was three feet from me, had me doing all these items, which never happened, of arm movents, weights, calisthenics, while interviewing me for 20 minutes.  The actual visit lasted less than three minutes with this Dr, and none of that happened. A quack, making money from the insurance company to say NO to everybody that came in.

A neurosurgeon was seen, and she stated you don't even have a physical done yet. Why is this big company's insurance sending you to me, except that I don't know if anything is wrong. Perhaps 45 seconds of her time, wasted, except for a long report to say nothing was wrong she could see, as that was what she was paid to do. You can not diagnosis a patient that a physical was never done.

this went back and forth, and thus perhaps the crops diagnosiis, as something was definitely wrong.


 As soon as able I went to my local dr.
He was able to do a little more testing. Sometimes knowing the the insurance company needed a test, but you had to say you were deficient. A shot of vitamin B  injected, then going over to give a blood sample to see where you are at. Quite backwards. It showed a high vitamin B on the test.  Testosterone was the same way, except I was quite low on the return test, that's when testosterone  therapy started for hypergandlosim I injections continue to this date with testosterone injection.

He ordered MRI of each section of the back and neck. These approvals took a long time to get, one at a Time.  So we are talking some long  period of time.  This is before I knew the magnet source was Not a very strong magnet.

Gabbapentin was added for nerve pain for the legs. Then
A pain Dr was seen, as my GP was limited what he could do

The pain Dr  was added. She prescribed something to get rid of pain.
Opioids,  then enough morphine that the pharmacist asked me if I was picking it up for someone near death to control the pain. The opioid plugged me up, so generlac was added, to help by my GP

The Brain was the last to get a MRI done.  In the report, in bold NO MS. All the mri's, the film is read by one person. Perhaps not quite knowing everything to be nice.

My GP, said they did not go far enough, as I found out years later, he suspected Multiple Sclerosis, not CRYPS.
He sent me to a Neurologist in the city.

Same mri, film, and much more tests, including new neurologist doing wrist, showing me to have cararple tunnel both wrist, as he was not working for company "A", but independent, and knew His stuff.

Then a spinal tap he did. A quite well known  known neurologist, who knew how to do this, being in his 70s. Spinal tap done by him in his office. He ruled out everything else, blood diseases,and other diseases.

I had onoglycolic bands were in my spinal fluid ( pieces of the mylen coating I would call them).
The MRI film, if knowing what to look , showed a bright lesion and past few lesions could be seen. Looking back, I probably could tell you even the year, date and circumstances.

He did show me the criteria needed, and the three spots, and old spots. Once you knew, you could easily find them.
A diagnosis, I was ready for, learning all and everything I could by research and asking Doctors.  Primary Progressive Multiple Sclerosis, with degenerative disk disease.

I was titrated off all opioid and morphine from the pain doctor.

 Lyrica and Cymbalta are used in pain for MS. You can not tell the insurance company, or they Would deny the combination.
Lyrica  was added, as it works on different receptors than gabapentin, which was also increased, as the nerve pain.

The real name brand cymbalta improved my mood, which I did not realize was in the dumps for months.  A positive I had not realized.

Nortriptyline was added, titrated up. For nerve pain at night.

Ibbufferin  was added for chostocrondrtis, as the only thing that works,  I should of asked wils dad Bruce, who was stricken with a bad case of rhemutoid arthritis, who knew what worked. He was my partners dad, filled with info, and a great outlook, even though bed ridden. He passed away a few years ago, as I write this in 2020.

Omeprozole was added to help the stomach. In latter years ranitidine also added. This medicine was recalled, and  tamodine replaced this in 2020

A lot has happened since the mid disgnosisis.

I had GPs at the Indian clinic, as they were The only game in town taking my insurance.  Some Great. doctors, and some worst Drs, that I actually went back to my old GP, who had sent me to the out of town neurologist.
He changed his staff overnight, and the new staff did not follow thru, so back to the clinic. 

This provides me with a excellent GO Dr. He could tell I did not have a torn rotator cuff, as another quack Dr said.

The university wanted to put a metal plate to hold up my neck. Invasive major surgery. When getting ok from my other drs, my GO stepped up and I listened to him.  I asked the surgeon, how much pain was caused by ms, and how much was caused my MS. They all left the room, and surgery never done. Best decision made. My Neurologist, against it, put me on Hyaluronic acid and chondroitin sulfate. That, along with botox to relieve muscle spasms worked. More on that in future blog...

it took a year and a half, which I find is fast fire someone with Multiple Sclerosis.

I was glad to be off opioids, and morphine. I

Currently I am maxed out on medicines I can take.  I see 8 or so  specialist at the university.
The only thing they can offer now is low dose naltraxadone. I am looking On input from others, and On anyone that has done this treatment, or Chinese acupuncture.

I was off botox since August 2019, due to go my neurologist taking a leave of absence. I wrote him and the state a letter, showing how many people they hurt.
six months to get another Botox specialist. Ona from us davis, the head professor. Names of muscles rolled off his young as he used a needle guidance machine to inject into both calves and neck.

This reduced the pain level, as the neck was pulling in bulging discs against the nerves. This has helped tremendously.

I think back of the mis diagnoisis, and where it would of led.
perhaps to the same point now, and different medicines used? Or the
quality of life being non exsistent.  The plate in my neck would of never happened, as once they tried, they may of uncovered the H63d gene, causing Iron overload, no place to screw the plates to, and no healing, due to ME and the autoimmunity that goes with it.

can low dose naltraxodone help or make me worse?

Would love your stories of his diagnoses of anything.
cheers
JoeY

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

Major surgery and MS

 Picture  from en.wikipedia.org

October 2017, a month that pain once again went into right shoulder, but this time traveled down to the fingers of the right arm.  Non of my twenty some meds would touch this pain.  I am not on any opiods other types of pain pills for this type of pain.    My GP got me into the hospital for a MRI of my cervical spine. Not all MRI machines have the magnetic strength they need to see everything. Make a note of that, and even ask hospital.you may be surprised on how old some mri's are that are in use.

The MRI showed two herniated disk, pinching on the right and left side. Of the neck, but I was only experienced pain on right side. A sharp jab in right shoulder that would not let loose. Even tried tennis balls to roll down muscle.Spine health has a good description.


A epidural was scheduled December 26th.  This is where they inject  by needle, a steroid shot into the nerve space by guidance of a   scanning machine. Made for a nice picture of needle injected, but gave me no relief for the pain.  None of my meds worked with this jab in the shoulder that traveled down the arm to zaps from fingers.

On top of this, a optometrist appointment was scheduled before Christmas. He noticed one eye  pupil was not responding to the light shined into it. Further investigation when dilated, showed what appeared to be cotton balls on the end of the nerves.  He faxed his findings to my Neurologist, and she started a five day round of steroids by iv drip in hospital right before Christmas.  So I ended up with a double whammy of steroids.

UC Davis set me up for surgery. Their plan was to put a plate and spacers where the two herniated discs were. During consulting, they pointed out two more discs, as the small town hospital we have, does not have a strong enough magnet.  Their X-Ray picked this up.

I asked my doctors about this.  I had just switched to a new GP, who showed major concern. My Neurologist had questions.  So I asked before and then again during pre-op. They fitted me into a neck brace. Being like a car salesman, not explaining anything.  I asked Dr, why a neurosurgeon was not doing operation, due to my progressive MS.

I asked how much pain was due to MS, and how much was due to the herniated discs, as  would I not have same pain going down right side also?  I asked how long will it take me to heal, with a compromised immune system. I  asked, if they were only doing two disc, wouldn't the disc above and below break off from the stress? Would my bones hold the screws, as my bone density is low.So

This is when everyone left the room. No goodbye, nothing.  I looked at my partner, and said "guess we are done here". I went to the check out desk, where a lady in front of me in good health, this was her third surgery. Yes the plate breaks off the bone above or below the operation.  They scrape the muscle, and nerves away from bones being fused together.
A ongoing surgery needing done every time.
I was glad to of opted out, and extremely glad my me GP, was able to stand up to my questions, explaining items of how dangerous this major surgery was, why the surgeon was not explaining.

My Neurologist put me on Hyaluronac Acid  and Chondroitin sulfate   He had a brand name bottle, but  it was expensive.   he wanted me on 400 mg Hyaluronic acid. That would be four pills a day.

What is Hyaluronic Acid?

A protein found naturally in the body, particularly in the joints as a component of Synovial Fluid (a lubricant that reduces friction) and in the collagen network responsible for maintaining the structure of the skin.

Hyaluronic acid (HLA) is often called "the fountain of youth" and is known to hold up to 1000 times it’s weight in water. As we age HLA degenerates, leaving us with aching stiff joints and a dried out skin structure that beneath the surface is damaged and on the surface is visible as wrinkles.

It is thought that supplementing can help replace the lost hyaluronic acid.

Chondroitin helps prevent joint degeneration by producing collagen, which keeps joints flexible and skin looking youthful and smooth. Chondroitin also regenerates cartilage, which maintains tissue integrity and helps heal wounds.


This combination was amazing. Almost instant relief in a few days.  Scouring the Internet, I found  300 mg hyaluronic acid pill from london. So 1 1/2 pills  =450 mg.  Swanson vitamin   had the chondroitin Sulfate in 600 mg capsule.  These were more in my budget.
And worked wonders.  I found these in powder form also, with proper measuring spoons, makes it as easy to take or a simple pill and 1/2 plus

A week after I left the surgery center, I get a updated report on my neck. The report, being the X-Ray,  showed deteriorated disc space between all disc. Which would not of allowed any spot to for them to of screwed and fused a metal plates to.

rheumatorotarthritis.net has a great example of this creepy crack in neck I have delt with. I hope this helps others Article here.

https://rheumatoidarthritis.net/living/creepy-creaking-neck/

I would not know until The next October about  Rare blood cancer or is a rare blood autoimmune that I found out I have, that would of also voided any surgery. They would of opened me up, and gone uh oh, and now what...

Thanks for reading
JoeY