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

Phlebotomy or Venipuncture And Multiple Sclerosis

We need to jump ahead into the present day, being October 2018.
I am treading on new ground, that my Endocrinologist, Neurologist GP, and Cancer Dr have not seen

the ancient art of blood letting,  or now called a Phlebotomy is used in only one disease.
I have primary progressive multiple sclerosis.  This is the USA term, phlebotomy.  Not was expecting another diagnosis, or was I looking for one.

This is being updated Aug 2020 for my UK audiences correction. 

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 been on testosterone therapy for years now. A Endocrinologist was watching over me for also needing 150,000 iu a week of vitamin D to keep my numbers up.  She had taken me off testosterone, to do a MRI of the pituitary gland, to ensure no tumor. Nothing was found. It was difficult on the mind to cold stop testosterone, for anybody thinking of stopping.

My blood, I've always been told it's thick, or large cells. I could not get my testosterone level up. My hematocrit and hemoglobin has always ran high for years. My heart Dr said, while sitting, it's like MS always has me running a marathon.

Many EKG done by other doctors, because of excessive pulse and numbers.  but what I was not expecting was for the endocrinologist to send me to the cancer unit.

My Newest Dr was one at ease, saying it was the testosterone therapy causing thick blood. I told him endocrinologist said it was not. He agreed to run some tests. A DNA of the Jak2 gene, and others,

The JAK2 gene mutation test identifies whether there is a mutation on the JAK2 gene that could cause a myeloproliferative disorder. Polycythemia vera is one of the diseases with a high correlation with a JAK2 mutation.
Mine was negative, but my Iron was off the chart.

He then ran the HFE gene.  I have a great GP that also mentioned This gene. This consist of the C282Y and h63d gene.  I was given one gene from each parent, along with brothers and sisters, and going backwards thru family tree on both sides, to aunts, uncles, cousins, ect.

Hereditary hemochromatosis is present at birth. But, most people don't experience signs and symptoms until later in life — usually between the ages of 40 and 60 in men and after age 60 in women. Women are more likely to develop symptoms after menopause, when they no longer lose iron. My Neurologist niece was diagnosed at the age of 17.

But I have a Quite Rare type.

HEMOCHROMATOSIS DNA, RESULT Homozygous Mutant Negative A
Homozygous for the H63D mutation and negative for the C282Y mutation in the HFE gene. Five percent of C282Y
homozygotes and rare H63D homozygotes develop clinical symptoms. Genetic counseling is recommended.

So more research, and I find only one other person in ten years

 https://www.. .nlm.nih.gov/pmc/articles/PMC4071918
https://www.. .nlm.nih.gov/pmc/articles/PMC4071918/

So with Multiple Sclerosis, I now am dealing with weekly phlebotomy, to try to rid myself of iron overload symptoms. the Gene center told All blood relatives needed contacted, as hereditary.

My blood comes out as thick or thicker than pancake batter.

  I think more studies need done, as I can not be the only one with MS, and Iron overload. Iron also effects the pituitary gland, so that tells me it crosses the brain barrier.
 Would love to know if anybody else has this rare H63d Gene, doing  phlebotomy,  and has MS.  How it effects MS, or any articles found.

Thanks for reading
JoeY