Blood Pressure monitoring with MS.

 This is of outermost importance with people who have MS or any type of Auto immune or are immune compromised. Your Dr, say GP measures your blood pressure. They only get a snapshot of the moment. Say you were rushed, were angry, or something happened to raise your pressure, or on the opposite side, have a low blood pressure that day.

With a quality blood pressure cuff, you can check calibration accuracy at Drs, you can input readings for all your Drs and specialist to see. You can add daily readings or many per day if needed, or just weekly.

This allows Drs to alk be on sane page of where your blood pressure is at, when not at Doctors.

It has some great features I use, including Drs Name, or facility, or just my notes, like just walked dogs, exercised, or waking up from nap.

He has added features of O2 readings, searching dates, mornings, afternoons, by Drs, and a whole bunch of graphs you can look at and download for your Doctors.

My Cardiologist loves this, seeing how I do in between the times he sees me. Other Experts I see ( think 21 now) have access to emails of screen shots I have sent.

you can find videos on my site that talk about just this, but for a decade, I have

 Ben using a app developed by 

Szymon Klimaszewski.  His new group,

On facebook, the first 100 people to join, and email him, get to enjoy all

 of his services for free.

most everything else is free, or small add to watch.

https://www.facebook.com/groups/bloodpressuregroup

https://www.facebook.com/groups/bloodpressuregroup

Available on Google play, 

https://play.google.com/store/apps/details?id=com.szyk.myheart

One of my graphs, shows how my blood pressure and pulse has

 reacted to one of my therapies.

Thanks for reading, and hope this App can help with a 

 cuff blood meter being used (not watches, as accuracy)

Stay safe, join my group, leave a message!

joey

How they found Primary progressive MS

MS focus magazine has a great link for symptoms of MS. I don't think I need to repeat a great story already written, so here is an appropriate link.

 https://msfocus.org/Get-Educated/Symptoms-of-MS

I was diagnosed with Primary Progressive Multiple Sclerosis a decade ago it seems. Copaxone was one of the only Disease Modification Therapies, "DMT" availiable for me.

I've hit everything on this list above plus more. Each are additive, so you never get better.

My double vision, was just a ongoing part of optic neuritis to this date. Clenched fist, a  old time heart medicine, clonidine, was used to for my MS. It released my clenched hands up.

My first real neurologist specialized in MS., was out of my county, referred by a smart country Dr, who had dogs and birds in his office. i New his animals by nane.

 Even though the local bandage hospital in my county had put NO MS in large print, the lady who read all the MRI, had no experience with MS.  I asked for a copy, this is when they were still on large film images. Many were taken.  My local GP, said " they did not go far enough". This is before I knew he suspected MS.

The new neurologist was a smart guy who listened, short in words though. He looked at my images, and said they took some great ones. He then scheduled me for a Spinal Tap the next day in his office. Yes a skilled surgeon, he did this procedure, with me lying flat on my stomach.

I can not go into graphics, as could not see the big vial of spinal fluid taken out, or other instruments used to keep pressures proper, just told to keep still. Yes you feel size of needle penetrate the skin, but that was all, as area was pre numbed.

Many more blood test were taken to rule out anything else other Drs may of missed.

I went home, kept laying down,  keeping hydrated all day. Had no problem.

The next visit, to go over the results, of what he found in my spinal fluid, was parts of the Mylen floating around. Brain matter suggestion of MS. The lesions on the MRI, of one old one and three active ones, were as clear as day, if you knew what you were looking for. He showed me on the film.

 He thought I had MS going in for some time, looking at first lesion. But I was diagnosed fast. First year  i was mis diagnosed of Cryps. chronic regional pain syndrom. A year on opiioids and enough morphine, the pharmacist thought I was picking it up for someone on their deathbed.  This all change with the proper diagnosed primary progressive Multiple Sclerosis, along with degenerative disk disease.

I was weaned off the morphine and opioids.  Lyrica and cymbalta are used to treat the pain.  Looking back, not all generics are the same as the real name brand. Name brand is needed.

Copaxone was started at that time, Matt had a video I watched on how to inject. He was twenty. I also started Botox treatments deep into calf muscles, as the maximum  muscle relaxer, Baclofen had been used. . I have kept up with this treatment, going up on botox treatments, now being done at the University of California Davis, as amount needed, and the retirement of my neurologist.

I even went to asking my neurologist I had questions from my book on ideas, tried, or being studied. Tonic water was mentioned, because of quinine it had. I researched, and found Jeffery Morgan's recipe for making tonic from the quinine tree bark. I went over this and calculations of how much I could  take to obtain results. 22 grams I shot for, or a shot glass. I did not use sugar, as weight gain from other medicines.

But quinine stopped major spasms.  A conversation also got us talking about a tablespoon of mustard taken. It also stops spasms. Drs do not know why, as taken oral, and must go thru the digestive system.  There are other items tried, that have worked, like  taking pure turmeric curcumin, before they became in a pill and have junk put into them.  A digital scale was purchased, reading down to milligrams. I found a pure INE in London finally.

Hyaluronic Acid was tried, to put space between bones. This was finally found in london, with the pure form needed, now in a pill form that works. Chrodrotion sulfide was added to help strengthen ligaments.

AlA, alla lipoic acid, was added by my UC davis neurologist. All supplements went thru my neurologist, to see if they would hep, or were just a snake cure.  A supplement was given by neurologist, but on second visit, was why did the contaminate the good ingredients with a questionable one. I still get adds from this company and question their products, along with all the others, like magnesium used to assist in keeping muscles relaxed, what is its purity.

What is really in it, quality?. . vitamin D was added, as I was At rickets stage. A Endocrinologist has followed my journey. I am needing over 180,000 Iu  weekly to keep a #80 score to protect my MS, as this shows to be the best protection at a dose #80-100, but keeping calcium out.

I am also on Testosterone Therapy. Many Priorblogs will show this. Used to keep muscles going with me,  but also can be related to thick blood. The cancer center took DNA checking to find iron overload to add to my ever growing list. A Rare H63D geems.   They thought It was the testosterone therapy, as had been on mega amounts, due to a oversight of a decimal point. But a quick stop to this, and six months to get it out of my system, a MRI of the pituitary gland showed I was low. On small amounts till they figure my thick blood out.

That is a problem.

Guess this is where I stop your reading, letting you go back in time to read other blogs. I have posted some great videos about how blood is made, heartbeats, and phlebotomy done, MS symptoms and guess what's not posted yet.

Cheers, like the poist, join the blog,

JoeY

Red Blood Cell Formation showing mutation H63D Iron

 in one of the forums, polycythemia was mentioned. i asked some questions, and think i gave the person enough information to ask her Doctor, as Multiple Sclerosis may of been plausible for what my blog was saying, and what was told.

 Everchangingms.blogspot.com I could go and try to explain How Red blood cells are formed, how this relates to my H63D gene mutation, and how this relates to Multiple Sclerosis, Iron overlaod, Thick blood, but I think its better described by this guy.

 you dont need to be a scientific person, or even know the terms he talks about. Just follow the video, the best you can. this will give you questions to ask your Doctor, or a understanding of what your Doctor is talking about. polycythemia, thick blood, hereditary Hemochromatosis, gene mutations, blood letting, vein punctures, phlebotomy, or just low in iron? Multiple Sclerosis, or a wide range of items that comes with MS?

 this is Part One of two parts of blood formation. i have this guy on other Videos, to explain my blood, 

Expert Doctors I go to at the University of California Davis, USA 

 Many genes are tied to Multiple Sclerosis. Hereditary Hemochromatosis runs in both my family lines. hard to get people to understand. Many Specialized Doctors and Science looking into this on me. They know as far as their specific specialized medicine, so you need to put the parts together sometimes. I use them all as team members, letting each one know of a part they have found. Its always something new, and some blogs, I still need more input and test done to find out more.

  b

But thats the blog this week.

 happy holidays to those around the world and remember to join my blog, and follow me

  JoeY

Poetry by Robet Gillett in MS Focus Magazine

 Everchangingms.blogspot.com. featuring Blogger Robert Gillett

This poem, just written by Robert Gillett, from the blog, beneath the tracksuit.

You can find his link to the right.  This was published on page 44-45 of MSFOCUS.ORG magazine, volume 23, issue 4, Fall 2021

Robert has a great blog going, and now published in a magazine.  You may need to get a free copy of the magazine to read this, or check out his blog, from my reading list.

I will leave you with his blog to read from today,  as I deal with my MS and Dr setbacks of rescheduling six months away.  Glad to have his support staff. This Dr works in the ER room, and with this new covid strain, omicron, and him being head of staff,  he is busy.

January, I will see my MS Neurologist in person.

Cheers 

Joey

 

Ten years and a Team of specialist for MS

 

Everchangingms.blogspot.com

Ten years plus into MS , and a great team of experts working with me, not on the list is the entire support team behind the scenes, who answer emails, get medicines approved and much more. This is only part of my team.

Hope you can click to enlarge this to show you the expert Dr Specialist that are part of my Team.

There Are Many more in the background that are not pictured, like the Staff who checks me in, the nurse who takes my vitals,.

A entire team behind each Dr to check emails, to get Approval of Medicines, Prior Authorizations, ones who are on top of everything, to keep Drs running Smoothly.

Doctors who specialize from Sacramento Heart, eye optometrist and dental team from the Mact Clinic.  There is the opthamologist, A skin specialtist,and their staff.

The testing staff, and their Doctors, that did Sleep studies,  plumagology studies, studies following trials with access to pharmaceutical grade items. A neurologist that had the expertise to do a spinal tap in his office, all the test with waveforms and scribble lines he had to make reports on. 

Keeping track of progression over ten years, has tons of paperwork, now done on computers.

Its a team working to solve mysteries.  To Try items that make me more comfortable going past the Ten Year mark With PPMS.

A Great GP that listens.  A Endocrinologist who goes above and beyond to question items.  My Botox Neurologist who can find the exact knots, and wants to keep learning how MS is progressing.

A journey that is written down for science to understand. A blog, but more notebooks, and much more information at DNA research sites. DNA that shows different parts in families. Sibling with same or different diseases.

A community of blogs followed and read to understand my complexity of primary progressive multiple Sclerosis. From Bars of London, to distant lands

The many medicines needed to keep me going , and the weird items used, from vein punctures for hereditary Hemochromatosis, to the weird genes I have came up to ask about, and strange test they have made up for me.

But for all, a Happy Holidays, and stay safe and healthy for this next year

Joey

Hygge and Multiple Sclerosis

 

I have been having quite a few more test and items that I can not get my mind around to blog on, or even state, knowing outcomes, because of lack of research done. I am being a test subject in some newly made tests also for MS.

One article, I read the synopsis of, is what came first, the chicken or the egg?  My specialist have found this and other articles interesting, and let me know. These findings of course concern the stage of Multiple Sclerosis I am in. Blogs started to write, even some cool pictures, but its not just posting, until I get my whole mind around these changes. All my specialized Doctors are onboard, watching, waiting, and giving their thoughts.

My October 2021 labs are the best I have seen in quite some time. Still need to go over them with Doctors, but there are all just numbers for me.

my older Sister told me about Hygge.

The Danish concept of hygge, or hyggelig (adj.), refers to finding comfort, pleasure, and warmth in simple, soothing things such as a cozy atmosphere or the feeling of friendship. The Scandinavian term encompasses a feeling of coziness, contentment, and well-being found through cherishing the little things.

                         One of the Hummingbirds baby's first trip to feeder and flowers on his own.

Bug life

One of Wils quilts he made

WebMD shows this great article about MS

Unusual feelings with MS and Good foods to eat

But back to Hygge. Think Wil and I have been practicing this , along with others, for quite some time. Take a moment to look this up, and let me know. Have you read the book, is your lifestyle less hectic? Do you take the time for You?

Joey

EPO and Kidneys with Multiple Sclerosis

 

More Multiple Sclerosis items happening.  I have a Rare Condition which is making to many Red Blood Cells. MS, rare H63D Gene?, other genes involved.

Erythropoietin (EPO) is a peptide hormone that is produced naturally by the human body. EPO is released from the kidneys and acts on the bone marrow to stimulate red blood cell production.

An increase in red blood cells improves the amount of oxygen that the blood can carry to the body’s muscles.

Currently, October 2021 my EPO is working overtime.  My Red Blood Count is high. The Bones are being over stimulated, of where the red blood cells are being made.

A cause for concern, as this is one of the causes of Thick Blood. Not supposed to happen.

The Red blood cells are to large for what needs to utilize them properly.  I hope the following will help others understand that multiple sclerosis range in the blood also.

what-is-secondary-polycythemia

Secondary polycythemia, also known as secondary erythrocytosis or secondary erythrocythemia, is a rare condition in which your body produces an excess amount of red blood cells.

This overproduction of red blood cells thickens your blood. This thickened blood can’t pass through your small blood vessels like capillaries easily.

Secondary polycythemia is caused by some other condition in your body, usually the excess production of the hormone erythropoietin, or EPO. However, secondary polycythemia can be genetic like primary polycythemia but is not caused by a mutation in your bone marrow cells.

Red Blood Cell Formation part one

This talks about the EPO from the kidneys while making blood.

Iron deficient

Iron deficient hormones and fatigue

Thanks for reading 

joey

Feel free to email me with questions, or leave a note

Thick Blood came back MS progression

 I guess this should be another post on how my MS is progressing.

I came back with my labs showing Thick Blood again, June 2021. This hasn't happened since my last phlebotomy, in  2018-2019, and then I stayed iron deficient and low ferritin for two plus years. Kinda anemic. But concern from my Endocrinologist got me emailing every Doctor. 

 There was no iron or ferritin left to do any phlebotomy.  My Hematocrit and hemoglobin was high.  This means large blood cells carrying oxygen to organs.  I obtain blood test every three months, so doctors can catch items. My next one now being end of November 2021.

I still stay quite overly fatiged, have spouts of double vision. I walk with a cane, my legs, thighs full of Botox, along with the back of neck and right shoulder muscle. Botox last for 52 days, but USA government decided it can only be injected every 90 days. I am on some twenty plus medicines for MS.  My travel bag of medicine is larger than my pack of clothes.

The Thick blood, This was a major concern.  I am on testosterone therapy, which is always thrown as the culprit, but had been decreased from 2.0 to 0.4 since before the phlebotomies. The cancer Dr saying this was the culprit, but endocrinologist saying it was not. I confirmed this with her in 2016, by stopping testosterone therapy cold turkey (would not recommend this to anybody). This was done so she could do a MRI of pitulary gland. 

My Hematocrit and hemoglobin kept rising, I had to show her, so testosterone was not a reason to raise it, as I had stopped testosterone, and restarted at 0.5ml injection.

In 2018 Iwas then sent to the Cancer Center, Where they found Jak2 negative, but further DNA, showed two copies of the H63D gene. Less than 5% will overload with iron.  I went thru 17 phlebotomy, or vein punctures, once a week from Sept 2018 to Jan 2019 to lower Iron I had.

Tryglicerdimia  Hypertriglyceridemia-Cause-and-Symptoms.aspx. was also present. A drug fenofibrate was used. This drug spiked my creatine (kidney function) it came back to a normal for me once stopping this drug.  I am one of 5% allergic to this.  So now on Vascepa.

This lowered my iron overload, and no maintenance phlebotomy were needed since being low.  which they found weird, but monitored me.  left me anemic, or iron deficient and ferritin staying low.

Before the test 2021 test, I did another experiment. I had tried eating a lb of liver, but no change in my iron in June 2021.   During my next three month test, I stopped turmeric curcumin for a month, and ate extra red meat, perhaps 1/4 lb of liver and onions.

My next blood test came back, September 2021.  ferritin in range, but Iron High. I restarted curcumin and turmeric.   That is a secret to stopping iron overload.

But my hemoglobin and Hematocrit was high.

Still thick blood. Not enough items for a phlebotomy, However I was referred to the Plumagology lab when I got the results of thick blood.

The first phlebotomist test done was a breathing while inside a phone booth looking contraption, into tubes, like blowing out birthday candles, holding your breath, and then repeating this with a inhaler medicine. The tech mentioned muscular problems. He showed me the graph which showed the diminished volume I was at. Just opposite of copd.

You tube technical video of what test they are doing.

I get a 8000 ft simulated altitude test  in November 2021.  These videos explain more. Some may be technical, but just the understanding of pictures he draws are worth watching.  All these have to deal with MS.  I think I am part of a study group, with PPMS, that they are looking at breathing, chest walls, which are muscles.

Breathing part one

Breathing part two

Respitory at high altitudes

A more precise blog will be written once going thru the above test, and how they are related to multiple sclerosis.

In some other pre written blogs, I explain the blood cancer, and then a video o  blood to understand how it is made. A specific video will show where the  H63D mutated gene is at.  More blogs, not in any order to show high and low blood pressure.

Enough info for now

Thanks for reading.

Joey

Blood understanding with Bradycardia and Tachycardia

 Since I have primary progressive Multiple Sclerosis,  many additional understanding is needed on my rare H63D gene, and how it effects blood, blood flow, and the heart. The Heart is a Muscle that can be effected by Multiple Sclerosis. So are Chest Muscles, and Lung Muscles.

https://www.webmd.com/heart/picture-of-the-heart

But first two videos I found from you tube, explaining this. You must understand how blood is made,  This relates to many people with or without multiple sclerosis. 

I have a fast heart beat at rest. 115-135 beats per minute. Tachycardia. The heart dr said its like I am running a marathon, while sitting down, because of my MS.  He could slow it down, but it is compensating for other MS items going on.  My Heart is going good, Echo and EKG are excellent.

You do not need to understand the technical language, just the concept. These are not in any special order.

These may be technical but explains some.

Hematology | Erythropoiesis: Red Blood Cell Formation: Part 1

Hematology | Erythropoiesis: Lifespan & Destruction: Part 2

Arrhythmias | Types, Pathophysiology, Diagnosis, Treatment

Rate and Rhythm | Sinus Bradycardia and Sinus Tachycardia

Cardiovascular | Fundamentals of Blood Pressure

I think that's enough knowledge to watch for the day from him. Don't get to involved in the terms, unless you are a student or techie watching, its more of the learning curve.

Will post more in another blog.

JoeY

Secondary polycythema or secondary erythrocytosis with ms

Secondary polycythemia, also known as secondary erythrocytosis or secondary erythrocythemia, is a rare condition in which your body produces an excess amount of red blood cells.

This overproduction of red blood cells thickens your blood. This thickened blood can’t pass through your small blood vessels like capillaries easily. This increases your risk of having a stroke

https://www.webmd.com/a-to-z-guides/what-is-secondary-polycythemia

This is my newest diagnosis, that is added to the Chronic Kidney Disease and Hereditary Hemochromatosis with the two H63D genes, on top of primary Progressive Multiple Sclerosis

The Kidney Role is to control the EPO or erythropoiesis

Red blood cells are made by the bone marrow. To get the marrow to make red blood cells, the kidneys make a hormone called erythropoietin, or EPO. When the kidneys are damaged, they may not make enough EPO. Without enough EPO, the bone marrow does not make enough red blood cells, and you have anemia.

Red blood cell productionEdit

Erythropoietin is an essential hormone for red blood cell production. Without it, definitive erythropoiesis does not take place. Under hypoxic conditions, the kidney will produce and secrete erythropoietin to increase the production of red blood cells by targeting CFU-E, proerythroblast and basophilic erythroblast subsets in the differentiation. Erythropoietin has its primary effect on red blood cell progenitors and precursors (which are found in the bone marrow in humans) by promoting their survival through protecting these cells from apoptosis, or cell death.

Erythropoietin is the primary erythropoietic factor that cooperates with various other growth factors (e.g., IL-3, IL-6, glucocorticoids, and SCF) involved in the development of erythroid lineage from multipotent progenitors. The burst-forming unit-erythroid (BFU-E) cells start erythropoietin receptor expression and are sensitive to erythropoietin. Subsequent stage, the colony-forming unit-erythroid (CFU-E), expresses maximal erythropoietin receptor density and is completely dependent on erythropoietin for further differentiation. Precursors of red cells, the proerythroblasts and basophilic erythroblasts also express erythropoietin receptor and are therefore affected by it.

The Kidney specialized Dr told me this EPO pathway was working good, and with me off all Nsaids, diclofenac, that being off, was helping the Chronic Kidney Disease, and I would see him in person in three months.

Gene location

I have the H63D Gene with H63D Gene, both mutated, causing iron overload. 17 phlebotomy were done last quarter of 2018. Then Nothing. I should of bounced back, and needed phlebotomy every three months. But no iron, or ferritin made.

H63D gene from

Instead, the bone marrow, that makes the red blood cells, shown from other blogs, makes lots of hemoglobin and Hematocrit, causing the blood to be thick again. Solution is a phlebotomy, but not in reality, as no iron or ferritin, and would make me Anemic.

Speaking of which, I had been low in iron, or iron deficient, along with ferritin level of 7, I had been complaining about my shortness of breath for two years, since the phlebotomy. This seemed to be getting worse.

I remember telling my partner, 20 minutes of moving twigs, was all I could do. We had started a fire outside during burning season, when we realized our helpers were not coming back. Tree limbs from the falling of many trees had to slowly be added to the pile. It took a lot of work just doing simple tasks. I finally collapsed on the ground and watched the fire being what I thought was out of breath.

My heart would race, my blood pressure increase, and a air pathway seemingly odd at catching breath.  This was told to many doctors over the two years

I think I will leave this blog here, as a whole blog has to be about the Diagnosis they have now found. A few more specialized Drs, more Test done, but nerd time to absorb all this new info

Thanks for reading, leave me comments below

JoeY

Multiple Sclerosis and Pulminary Labs?

Pulmonary Laboratory Testing

Multiple Sclerosis has many turns, and relates to many areas of the body.

This is the " phone booth test"

Yes I became hot, sweaty and out of breath, fatigued, and tired. This cause can be MS, playing into everything. It can also be where my ferritin of 7 and iron of 29 is at. On the low side. 

 The test has you blow into a tube at regular breaths. This is recorded on the technicians computer. He has you repeat the test several times. Another breath test shows how your lungs expand, then hold and pretend your blowing a birthday candle out. Only so many times could I do this, so thought of a campfire, trying to get this going with one big breath.  Then comes a test where you exhale inwards and the machine valves close to check chest pressure of the lungs.  You are then given a inhaler to open the ports in you lungs that accept more oxygen, and test repeated.

The door gets closed on a few tests. The inhaler had no effect on me. Elasticity, spascity, was talked about. My low ferritin and iron were mentioned. Hypoxia also.  He showed me graphs of where I was, or was supposed to be at.

Chronic Hypoxia was mentioned by my Cancer Dr, as well as the H63D gene playing a role, Multiple Sclerosis doing its part. I looked that up, and Yes, Rare, but controls the muscles of the rib cage. Think of having a continuous MS Hug.

My weight has not changed, but my girth would increase 8" for some reason. Simethicone was used to assist,  but many theories given to my cancer Dr. My height has decreased another inch.

My Ferritin is 7, iron 29. I have large Red blood cells, to many hemoglobin and Hematocrit,  to Cary enough oxygen to my system.

This puts me out of breath when doing anything.  I figure if they gave me a type of iron or ferritin, this would fix problem, but there is much more to it. 

A phlebotomy, would take out to much iron and ferritin.  If a infusion, that would raise hemoglobin and Hematocrit.  I have thrown alot of theories I read about or find articles on to my specialist.

I need to get into some technical videos I found. This shows how red blood cells are made. Now Remember I have two H63D Genes that create havoc.

https://www.healthline.com/health/rbc-count

I need to start the explanation in a way everyone can understand, so this video starts with the formation of red blood cells.  Try just to understand concept, not all TBE technical Nathan unless you are a scientist.

A great video that explains the Red Blood Cells

Any comments, will explain in some future videos.

JoeY

Ever changing multiple sclerosis

 

Dixie, Armani, Wil and I hiking thru the woods to get to our tree house, as snow to deep to drive. Pulling sled full of supplies.

       Ever changing multiple sclerosis

If you have been reading my blogs over the years, you will notice that everything is additive on top of my Multiple Sclerosis. Primary progressive multiple sclerosis still remains as my primary Diagnosis. I see my Primary Neurologist about every six months, which is coming up next  month.

Our last visit with my neurologist, my botox had worn off, and other Doctors had taken me off All Nasaids. Ibuprofen off list, Diclofenac Sodium 75 mg twice a day removed. My Walking speed, or straightforward was off. Without botox, my lower extremities are rigid due to muscles being over stimulated  by my MS, cramping up. I did not pass her exam, even with my eyes. Ocrevus was talked about, as a infusion medicine.

I had just received a Diagnosis, that nobody wants to hear. This was caused by my 17  phlebotomy I had done two years before. A medication, Fenofibrate, I am one of the lucky 3% that are allergic to. It is used in Hypertrycglimeria. I was switched to Vascepa,  It is a Super Charged Fish oil, containing something like 32Fish pills into one. That was another diagnosis, but not the one that was concerning.  IBelieve I need to keep that quiet for now, so not to concern my audience.  Most of the Time spent with neurologis was t talking about this over.  

I was given a new GP. She is wonderful for asking questions, and following me so far. I think I was just to complicated for a student GP.

My Endocrinologist was the next involved a few times. This got me a new specialist to add to my list, I will talk about in a future blog, as telemedicine with them in a few weeks. My Endocrinologist is as proactive as I am trying to be, when blood tests come back abnormal, and nobody is screaming about them.

So, if you are jumping into my blog at this point, you will know that the summer of 2018 I had THICK BLOOD. My Endocrinologist caught this and sent me to the cancer center, after taking me off testosterone therapy for six months, to verify pituitary gland, located inside the brain, that a MRI was checking out good. Yes, I knew the word Cancer, she was looking for. This however, checked out excellent. But testosterone was still needed injected. (Testosterone therapy) for yet a different diagnosis added, confirmed.

The Cancer Center, Dr R, did some DNA, to rule out polythcemia, Jak2 mutation. He looked further, and found two H63D genes causing me to iron overload, thus causing THICK BLOOD. 17 phlebotomy came next over a three month period.

This left me iron deficient, and ferritin deficient. None came back, going on the third year now. I did notice more fatigue, cold fingers, never had that before. I became out of breath for doing anything simple after this. Also sweating, soaking t-shirts for simple items.  I still help walk our dogs daily, and have a elliptical, to keep get moving on rainy days.  Moving a piece of firewood became troublesome. I let all my Drs know.

My blood test, I do every three months at the u c davis University Hospital. Quite a trip to take our 28 year old car to from our remote living.  This last test, being fully hydrated, and doing a few extra test added on, figured would be somewhat like everything else.

Again, my Endocrinologist was telemedicine, as was my next visit. She was livid, that no other Dr was doing anything.   THICK BLOOD was once again in my system. My Hematocrit and hemoglobin was way to high. But this could not be, as she lowered my testosterone again, so its like a pink rock weekly. 

My O2 was talked about, as the Drs involved did not know I had done a sleep study. They had to search for that one. Figured box. Low o2, means sleep apnea, which us just a cpap mask. I'm not really interested in, as just sounds weird.  My O2 readings were low during the day, recorded with my oxygen meter you stick your finger into. Hospital verified accuracy. 

I have a great Heart Dr, who has followed me for ten years. Dogs, heart scans, wearing a heart meter. He said my heart was the best thing going for me. Tachriarda was another diagnosis added, as my resting heart beat is 115-137.  He said " its like you are running a marathon, even when you are sitting still due to the Multiple Sclerosis ".   Every Dr questions my fast heart rate, some bringing in EKG machine.  My heart Dr does echo scans, with everything looking good, even thru first Thick blood episode. I am due for another scan coming up..

This Las scenario, I emailed all my Drs, and specialist, as was in loss of THICK BLOOD.The Drs started talking to each other. My main one from the Cancer center replied, after sending links on Thick blood with the following.

"You have secondary polycythemia - that means that you have increased hemoglobin and hematocrit due to your body trying to compensate for a number of other factors. This is not driven by a primary bone marrow issue. IF (and this is a big IF) the H63D homozygous mutation is contributing, it is doing so in a minor way. I can say this because your iron stores have taken years to recover despite taking in dietary iron - and HFE gene mutations act to increase oral iron absorption. In fact, your hematocrit has risen despite low iron stores. 

While it would be convenient to pin this on a single diagnosis/process, I think it's more complicated in your case and may well be due to several smaller factors, each pushing you to a higher hematocrit. In this case: 

- testosterone administration

- chronic hypoxia (this is USUALLY nocturnal, but may be during the day)

- H63D to some smaller extent. 

The risks of blood clotting/symptoms in secondary polycythemia are poorly studied but do not appear to be high - thus any intervention is likely to be more risky than beneficial (with, perhaps, use of a baby aspirin). Do not forget, you felt terrible when I made you anemic and it took a long time to recover. 

In summary, I'm not overly concerned about your "thick blood," so much as understanding what drives it (such as chronic hypoxia). 

This can be further discussed at your next follow up. "

I will leave the conversation here. Feel free to comment with your thoughts

JoeY

cryotherapy with Multiple Scleroosis

 

 cryotherapy  with Multiple Sclerosis

Freezing of warts and skin areas

I have a great skin Dr from Sacramento. My first visit with her was a few years ago, when I took this video of time lapse of a area she froze off my hand.  This was a Wart, that would not go away.  She loved her little Freezing canister, when I showed her some lother dark spots area She froze those.

She checked up on me six months later.

A year went by.  This time, A different spot on the same hand was of concern, that she froze off using       Cryotherapy. 

What to know about freezing Warts

Warts are noncancerous tumors that develop due to human papillomavirus (HPV) infections. Cryosurgery, or cryotherapy, is a common way to remove them. It involves freezing off the targeted cells and tissues.

My fingers have arthritis or degenerative disc disease for the old timers.  Some special rx creams are used to keep fingers moving, and skin dermatitis at bay.

a old time medicine, used as a heart medicine, Clonidine, was used before my diagnosis to unclench  my hands which were doughy, with clenched fingers.  the Doctor 12 years ago, I remember him saying, you have something going on, but the insurance company won't let me run tests to find out. Clonidine was titrated up and down, to get what opened my hands. Little did I know of Multiple Sclerosis.

The Skin Doctor also took some biopsies this year. A spot on my back was cut off, and put into a jar.   The picture above is a spot that she froze . some dark spots off some other areas was also cut off.

A few weeks went by with them growing me in a lab.

Then came some unusual results back.   HPV, also known as Warts. These are highly contagious.

What to know about freezing Warts

And where did they originate? I went backwards in my mind thirty years at least.

My partner has been with me for twenty years, and has no symptoms.

The legions , only looked like dark aging spots, not raised or bumpy like warts are supposed to look like.  I got quite uncomfortable looking at pictures on the internet, so beware of what you search for. 

 So the next step I took was looking at my medicine pamphlets. Those really fine small print fold out papers.

I am on Copaxone, as my Diseases Modifying Therapies. DMT.

There it was, clear as could be of what Copaxone could cause.

Skin and Appendages:

Frequent: Eczema, herpes zoster, pustular rash, skin atrophy, and warts.

Infrequent: Dry skin, skin hypertrophy, dermatitis, furunculosis, psoriasis, angioedema, 

contact dermatitis, erythema nodosum, fungal dermatitis, maculopapular rash, 

pigmentation, benign skin neoplasm, skin carcinoma, skin striae, and vesiculobullous 

rash.

Teeth caries is also on there, making trouble with my teeth every year. Its common name is tooth decay.

I saw the dentist for four days, a cleaning, and many fillings. 

The dentist spent four days in a row. Eight cavities filled. A tooth extraction was saved for later date. I was glad of that.  Our dental facility is in the Indian tribal land, near their casino. We both don't gamble, and way to much smoke to go into their massive complex.

The drive is not for the faint of heart from our house. You must go thru the town of volcano, population 100. But the windy roads and curves to get down to the small valley, and the steepest road out, that our vehicle bogs down going slowly up thru more curves to get to the highway.        

 my skin Dr next  in next month, just came, her earliest appointment to freeze the pesky dark spots off.    The unkown, as this time a fingernail was cut off to grow.  A normal immune system would get rid of these in two years, but one with Multiple Sclerosis on a DMT, unknown.

Now the Endocrinologist says I have Thick Blood. A Major concern from her, that I had to email all my Drs.

Thick blood

Thanks for reading, and any comments!

JoeY

Anxiety and Multiple Sclerosis

 Anxiety and Multiple Sclerosis has been mentioned on many blogs I read.  Until you have experienced this, it is all just words being read..

Anxiety can be manifested in many ways, or to me it is a cause and effect situation that is happening either in my mind, or playing out in reality.

Some examples, would be a change in insurance companies. One huge insurer bought out my plan. They have been doing this for the last ten years. Bigger companies swallowing up the smaller ones. A behind the scenes, the small ones are actually giant, like Walgreen, CVS, Rite Aid. They are now owned by giant companies overseas.

They make promises, but less and less medicines become available, or now need prior authorization, or a exception to their plan. They are playing Doctors, without a licence.

I have a great Dr support team, from UC Davis,  that tries to ensure I obtain proper medication, and the amounts. But the Anxiety, and hours I spend, sometimes 4 hours with the insurance phone people to obtain meds creates anxiety.

Anxiety can also be created by other people.  A elderly gentleman had my partner and I over. A simple haircut, and a computer check. He then said his insulin injections were  acting up. He went into the other room, coughing. A RED flag for a imune compromised person with covid 19 killing over 500,000 people now in the USA. 

He could of said, he was under the weather, could we come on a different day, but no. Possibly Exposing us, as one of the only times maskless.

He went to the clinic, who took his temperature, and said he was good. That was not a covid test we told him. 

We self quarantined, having a covid test done five days later. 

We gave him directions and registration on line.  Then he wanted to come with us.. Hu??

Two days later our results came back negative.  This was a major Anxiety for days. Every cough, or pain, you thought it could be covid. 

Watching videos, our my favorite is our hummingbird.

Another example of a major anxiety, was a GP, who I never have seen, put into my chart a CKD diagnosis. I will talk about this in another blog, as I need to go into specifics.  The Anxiety, was awaiting to get feed back from All my specialists that were being seen over a few month period.

The CKD, given in November 2020, I was not sure I would make it to 2021, as explained.

This of course got me a referral to a Nephrologist. A new specialist to add to my list.  A good item.. A New GP was also given this year.  This GP is more attentive to details, and listens, asking questions.  She is like the First GP I had at UC Davis.

Another example is our Westie. She just turned five, but was diagnosed last year with Cushing disease. Yes quite common in older dogs. But a alarm went off with my partner and i , when we saw blood in her feces, with diahrreha. A call to the vet, and bringing her in for X-Ray and blood tests. Four hours later, we were able to bring her home. We got to explore the dollar tree, the supermarket and high prices, and a local coffee shop, sitting outside.  Not much more is in town.

Anxiety can manifest in many ways. It can increase your blood pressure, your heart rate, Iratate  your stomach, and more...

Which brought in a few more specialized Doctors, just to look at blood, blood flows, A Secondary Polycythemia going on per cancer Doctor.

This brings more tests, like a sleepover at the hospital, A plumagology test, and others I will talk about in future videos, and try to explain the making of blood.

Just take a deep breath I tell myself, and say its not just MS.

Stay safe, leave me any comments

joeY

Rare Disease Day 2021. #Rare Disease Day

 #Rare Disease Day

https://rarediseases.org/shareyourstory/

• Rare Disease Day

• How has your life been impacted by rare disease? Please share if you are a patient or a caregiver and which rare disease has affected your life.

For all my blog followers, Facebook, Instagram,  and other sites,  Rare Disease has become part of my life. My partner and I were invited to Rare a disease Day a few years back, in Sacramento, California.   I blogged about the event back then. The Zebra, one has  made it to Alaska for my mom.  The Event opened my eyes on how rare of a disease I have.

I am a patient with primary progressive multiple Sclerosis, researching all aspects.

 In 2018, I was sent to the Cancer unit for Thick Blood.  UC Davis found two copies of the H63D gene, causing Iron overload. Less than 3% are diagnosed with hereditary Hemochromatosis. I went thru 17 phlebotomy, to bring down iron.however, since I was the first person they have seen with the rare H63D gene, my iron never returned two years later. This has recently caused complications, so writing this beforehand to be published.

2021 the world is in a pandemic of the Covid that has killed more than wars have.Special masks are required to go out. Only specific Grocery Stores and Needed necessary stores open. Many businesses did not make it thru 2020, when the virus hit us hard from China.

A Vaccine is sitting, awaiting in California for months now. One of the same researchers of the covid vaccination may of stumbled on one for MS.

https://www.dailymail.co.uk/sciencetech/article-9138167/BioNTech-creates-multiple-sclerosis-vaccine.html

Why is Rare Disease Day important to you?

There are so many rare diseases that are not counted.

https://rarediseases.org/rare-diseases/classic-hereditary-hemochromatosis/

 This day helps me reflect on how far I have come in researching the H63D Gene, genetics of Hemochromatosis, iron or anemia.

The Rarity of my Gene. 

Do surveys for your diseases....

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Who knows better than you about your journey and experiences?  We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives. Over the past seven years, Rare Patient Voice has paid patients over $4.8 million dollars. 

How will I be paid?

You will earn $100 per hour for participating in studies. We pay by check to ensure patients can use their compensation in any way they wish. 

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Companies have finally realized the REAL EXPERTS are the Patients and Caregivers!

Better products, services, and treatments, Start with Better Research. They need YOUR input and are willing to pay $100 an hour for it!

Signup Today and let YOUR Voice be heard!

https://rarepatientvoice.com/EverchangingMS

https://rarepatientvoice.com/EverchangingMS  

• What is one thing you'd like the public to know about rare disease and the challenges patients and caregivers face?

A Rare set of two copies of the mutated H63D Gene can cause iron overloading in less than 3%. I happen to fall into that category.

rs1799945(GG)5H63D Two copies of H63D, 5.4% chance of iron overload. This I got.

HFErs1049296(CT)3Pro570Ser - risk allele: T (Pro589Ser) This is called TF C2. It creates an increased likelihood of iron loading when combined with any c282y and h63d because it forces a reduced TIBC resulting in higher levels of free iron and free radicals. This also Increases susceptibility to Alzheimer's disease but only when combined with c282y.

I had 17 phlebotomy or vein puncture in last quarter of 2018.  My Iron has not returned two years later. My gut derailed after phlebotomy. My EGFR dropped to 45 during the 17 phlebotomy.  This causes concern for CKD, to be talked about in another blog. Hematocrit and blood thicker than pancake batter.

Mutations in HFE Causing Hemochromatosis Are Associated with Primary Hypertriglyceridemia

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

https://www.rethinkanemiaofckd.com/insufficient-hif-activation.html

https://www.medscape.com/answers/126568-15805/what-are-the-genetic-causes-of-hypertriglyceridemia-high-triglyceride-levels

• The 2021 global theme for Rare Disease Day is "Health Equity." What does equity in health mean to you?

That my rare gene will be looked at by science.

• How will you be showing your stripes for Rare Disease Day?

By posting this blog

https://rarediseases.org/rare-disease-day/

• Your photo(s), video(s) or audio recording(s)
  Videos should be under 2mins and in .mov or .mp4 

Everchangingms.blogspot.com