Ok if I Join? Diagnosed a Few Weeks Ago

[RedneckMBA]

Well, if they didn't diagnose me with MS, I sure would have been missing an opportunity considering the spot-on symptoms. Plus, I have several red flags for being at risk for MS. History of smoking. Northern European (Swedish) heritage. Grew-up in a cold climate (Massachusetts, USA). I have had another auto immune disease since age 15...eczema. However, I was 58 when I was diagnosed a few weeks ago, definitely kinda old for a MS diagnosis

I quit smoking Labor Day. Quitting is a stressful event that weakens the immune system.

A few weeks later, numb hands and feet. Then the shingles a couple of more weeks later (shingles, for chrissake, I'm not even 60). "Doc, my hands and feet are also turning numb" I said when I saw him for the shingles. "On just one side, the side with the shingles, right?" "No, on both sides." Doc felt my pulse at my extremities and said I had good circulation. He looked puzzled.

Thanksgiving week, I lost all feeling in my feet.

December 2, was my annual check-up with my eye doctor. On that day, I started losing vision in my right eye. I thought the pain was sinuses because I had some trouble. Doctor found high pressure in my right eye. Since I was dilated, I did not realize I was losing sight. It wasn't much of a sight loss because I was still 20/20 with my regular prescription.

Next day went to regular doc about sinus/eye pain. I did not tell him, but by then I was partially blind in my right eye; I assumed it was from the sinuses. He prescribed antibiotics. I also complained about numbness again. Since I had been diagnosed with degenerative disc disease a couple of years before, we decided to get a new MRI of my neck to see if there was some progress. I looked and felt terrible...I was puffy like I was having eczema troubles. Doctor shot me full of steroids. (Looking back, that was a good move.)

MRI of neck showed no progress of the disease.

A week later, I still had eye pain and couldn't see. I went to the doctor. This time I told him I could not see. That was not consistent with a sinus infection said he. Go back to your eye doctor.

Saw my eye doctor an hour later. "This could be the beginning of MS." "Or it could be an episode of glaucoma." The docs have been watching me since 1994 for borderline acute angle glaucoma. "We don't know. Probably not MS. Every time I send someone for a head MRI, it comes back negative."

Just before Christmas, my vision started improving. On Christmas day, I went numb on one side. Almost piled to the hospital thinking I was having a stroke. But my face was not involved. This is a neuro problem I concluded.

Saw my doctor the following Monday. He poked and prodded. "So, do you think I could have MS?" "That's in the back of my mind. Let's get a head MRI."

I started looking up the symptoms of MS. First hit - Losing vision in usually one eye, it plateaus for a couple of weeks, then starts to return. Second hit - An episode that involves just one side of the body. Third hit - L'Hermites syndrome.

A couple of years ago, I was working at my computer at work. I looked down at the keyboard and felt a slight tingling and numbness in my lower back and feet. This never went away; continued to happen whenever I looked down. Went to doctor. Had a neck MRI. Diagnosis was degenerative disc disease. I was then sent to a neurosurgeon. He poked, prodded, pushed, pulled...etc. He was confused that the location of the potential disc disease did not match my symptoms. He would expect problems in upper extremities..my arms. Well, since I wasn't in pain, no need to do any surgery. Now, looking back, I was mis-diagnosed. I had L'Hermites syndrome and this was my first symptom of MS.

MRI came back with a couple of lesions. Doc wants me to get a neuro.

Had a wellness exam a few days later. When I got the results back, I notice the doc has snuck in a Vitamin D blood test in to the stack of normal tests. Vitamin D was ok.

I get a neuro. Let me tell you about neuros and MS. If it looks like a duck, quacks like a duck, walks like a duck, flies like a duck, and swims like a duck, a neuro will want a DNA test before he'll call it a duck. So the neuro tells me I need a spinal tap.

A spinal tap is one of the most terrifying experiences I have had in my life. Afterwards, lying in the hospital bed, Dr. Neuro comes by. I start talking to him like I have MS. He starts saying ..."well if we diagnose MS..." and "...if MS is the diagnosis.." I look at him and say, "ya, know doc, this stuff certainly passes the 'duck test' for MS" He gave a big sigh and shook his head yes. He knew it too. I had MS for chrissake.

The spinal tap came back positive for three antibodies they were looking for. Ah, the holy grail. "You have MS."

So I have to decide on a medicine. Copaxone looks good and is cheaper than Tecfidera. But the heart attack like symptoms of Copaxone ain't gonna cut it cause I live alone. So I chose the Tecfidera.

They give you a starter pack of Tecfidera that has a weeks worth of half strength dose to try to titrate you up to the full dose. I think..."This stuff has gotta be to Puke City for them to do that." How wrong I was. I spent about a week crapping my guts out instead. Even at 5 weeks now, I had a day of intestinal problems yesterday. They ought to include a bottle of Pepto Bismal in the starter pack. Immodium wouldn't touch the diarrhea.

So I'm here to learn.

Red
MS?---It's all in your head....

[lyndacarol]

Welcome to ThisIsMS, RedneckMBA. I have no experience with Tecfidera, I choose NOT to take any the FDA-approved MS drugs (I have tried three of the injectables over a 10-year period, and saw no benefit to them).

Currently, I am interested in nutrient deficiencies and MS. So when I read your first paragraph,

I have had another auto immune disease since age 15...eczema. However, I was 58 when I was diagnosed a few weeks ago, definitely kinda old for a MS diagnosis

I recalled the following (it is my understanding that eczema is also called atopic dermatitis):

The link between serum vitamin D level, sensitization to food allergens, and the severity of atopic dermatitis in infancy. (2014)
http://www.ncbi.nlm.nih.gov/pubmed/2510 ... t=Abstract

and wondered if any doctor through the years had ordered a vitamin D test (a.k.a. the 25-hydroxy D3 test) for you. And then I read (I commend the doctor who "snuck in a Vitamin D blood test" – I think this test should be routinely done, as are blood pressure testing, glucose testing, and cholesterol testing!):

Had a wellness exam a few days later. When I got the results back, I notice the doc has snuck in a Vitamin D blood test in to the stack of normal tests. Vitamin D was ok.

I wonder what the actual test result number was, what the lab's reference range was, what constituted "ok".

Compare your actual value to the current recommendations from GrassrootsHealth.(http://www.GrassrootsHealth.net) Many doctors are recommending that vitamin D levels should be 80-100 ng/mL in people with neurological symptoms.

[Scott1]

Hi,

You need to start with one thing at a time.

Lets just deal with the shingles first. Are you saying the doctor gave you nothing for that? Why did he give you antibiotics for your eye?

I think you should go on a long term course of Valacyclovir for the shingles. It's a herpes family virus and your general condition suggests you are struggling to control that.

There is a lot of things to look at but start there. I'd rather you dealt with that than start the MS blockbuster medications.

My story is here and it may help you but I apologise for its wordy style. - http://www.thisisms.com/forum/regimens- ... 24019.html

Regards,

[RedneckMBA]

Sorry I do not know the actual number associated with my Vitamin D test. I will see the doctor's office for some more blood work later this week. I will inquire then. Thanks so much for your response and interest Lyndacarol.

Scott1....I noticed the shingles very early. Didn't know what it was, but I got to the doctor fast. The doctor gave me some medicine that was so effective on the shingles that I kinda felt sorry for it. In two days, the stuff was gone. Now that my immune system has been re-awakened to that virus, doctor does not recommend a vaccination until a few years out. So the shingles problem was controlled early and fast.

The antibiotics were for my sinuses. I actually had sinus problems for the few weeks before. But it was my mistake thinking that the sinuses were causing the eye problems. And since I neglected to tell the doc that my eyesite in one eye was bad, he didn't know to do some more checking at that time. When I told him a week later about my eye, then he pointed me in the right direction.

I have good medical care and I am not shy about using it. Several years ago, I suffered with sinus problems for months. I finally went to the doctor. I started feeling so much better in a few days, I felt foolish for not having gone a lot earlier. At that time I promised myself that I would start seeing doctors as soon as a problem occurs. From my first complaint of numb feet to diagnosis of MS was less than 4 months. That is probably great compared with some of the stories we have read.

[lyndacarol]

Sorry I do not know the actual number associated with my Vitamin D test. I will see the doctor's office for some more blood work later this week. I will inquire then.

...

The antibiotics were for my sinuses. I actually had sinus problems for the few weeks before. But it was my mistake thinking that the sinuses were causing the eye problems. And since I neglected to tell the doc that my eyesite in one eye was bad, he didn't know to do some more checking at that time. When I told him a week later about my eye, then he pointed me in the right direction.

Another good reason to request a vitamin D test: it up-regulates our own antibiotics:

Dr. John Cannell on vitamin D (6 min.)


The body makes hundreds of naturally occurring antibiotics called antimicrobial peptides. Professor Robert White of McGill University discovered that Vitamin D upregulates antimicrobial peptides, which have a broad spectrum of action against both bacteria and viruses.


One of the consequences of vitamin D deficiency is decreased resistance to infection (therefore, increased frequency of infections) according to vitamin D experts.

Dr. Robert P Heaney, MD - Vitamin D Sunshine Optimal Health: Putting it all Together (50 min.), at U of California Vitamin D for Public Health series, Integrating Sunshine, Supplements and Measurements for Optimal Health, December 9-10, 2014.


· Why is vitamin D important?
· How does it work?
· Where do we get it?
· How much do we need?

@16:50 All studies, irrespective of latitude, show that the majority of the world's population has inadequate vitamin D status.
@17:04 What are the consequences?
A series of diseases:
· bone diseases, falls, & fractures
· hypertension
· increased risk of cardiac disease
· pregnancy problems (prematurity, low birth weight, & increased Cesareans)
· diabetes & metabolic syndrome
· periodontal disease
· decreased resistance to infection (flu, TB)
· various cancers
· increased risk of multiple sclerosis
· increased risk of schizophrenia

[RedneckMBA]

Thanks again, Lindacarol. Interesting stuff.

Unfortunately, I do not have a long term history of my Vitamin D levels. I have been taking your standard multi vitamin (500 units) daily and drinking milk for decades. For the past 2 years, I have been taking calcium supplements at the suggestion of the doctor that did my colonoscopy. Those supplements also have 500 units of D3. In the past 2 months or so, I have started taking an additional 4,000 units per day. So I am up to 5,000 units per day.

I just started taking B12 after reading some information here. I am hoping that it may help me with fatigue.

[Scott1]

Hi,

If you think you can be vaccinated for shingles then you are very much mistaken or misled.
What you were given was probably valacyclovir. Shingles is a herpes family virus. You have it resident in your system for the rest of your life. Over and over you will see references to EBV (Epstein Barr Virus) in these pages. It is also a herpes family virus. I take a gram a day of valacyclovir every day and I have for well over a decade. It is integral to how I manage MS.
My little link I gave you earlier talks about this.
Regards,

[lyndacarol]

I have had another auto immune disease since age 15...eczema.

To continue with the "eczema" angle… I am halfway through reviewing the "all things vitamin D" thread in the Natural Approach sub forum and came across this old post (August 20, 2009), in which a TIMS member recounts his experience with eczema (other members, such as Wonderfulworld, etc. later add their experiences):

http://www.thisisms.com/forum/natural-a ... tml#p65413

I just thought you might find it interesting.

[RedneckMBA]

Thanks...That was interesting about eczema and Vit D

I started on 5,000/ day Vit D at the beginning of the year after I self diagnosed MS. Frankly, I did not notice any change in my sensitivity to things. Especially contact dermatitis cause by some everyday chemicals like detergents, gasoline...... I wear gloves as much as possible, but sometimes stuff happens and you end up exposed. Also cold weather can be rough on my skin. Again, no improvement noted

However, a couple of weeks after I started to take Tecfidera at the end of February, I had hand contact with some irritants. I was amazed at the very different response of my body. I had very minimal swelling that cleared quickly. No broken skin, fissures, weeping, or itching. There was some scaling that showed up a day later. No heavy duty steroid ointments needed. Last weekend, I had another exposure due to needing to clean a chemical off my hands with gasoline. Again, minimal reaction. I fully place the improvement in the eczema on the Tecfidera's modification of my immune system's response to the irritants.

Oh, they use a close chemical relative of Tecfidera in Europe to treat psoriasis. And when I told my doctor about my experiences, he told me the drug companies were aware of the benefit and were investigating using some of the drugs we use to treat skin maladies. I wonder how many folks may be giving Vit D credit for improved eczema when it may be the result of their disease modifying medicine.

[RedneckMBA]

Scott1....The medicine was valacyclovir.

I do not understand the link between shingles/herpes and MS. Can you explain it to me???? I do know that my numb extremities started up just around the time I got the shingles.

[lyndacarol]

Oh, they use a close chemical relative of Tecfidera in Europe to treat psoriasis. And when I told my doctor about my experiences, he told me the drug companies were aware of the benefit and were investigating using some of the drugs we use to treat skin maladies. I wonder how many folks may be giving Vit D credit for improved eczema when it may be the result of their disease modifying medicine.

Ah… Psoriasis.

And then, there is this: http://www.thisisms.com/forum/coimbra-h ... ml#p238434

A pilot study assessing the effect of prolonged administration of high daily doses of vitamin D on the clinical course of vitiligo and psoriasis.

Abstract: http://www.ncbi.nlm.nih.gov/pubmed/?ter ... A+24494059
Full text: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3897595/

[RedneckMBA]

More good information. Thanks Lindacarol.

Then, perhaps, the eczema and MS suffers will benefit both from the vitamins and from the disease modifying drugs.

[Scott1]

Hi,
The link between any herpes virus and MS is unknown. However, there is a very strong correlation between infection with Epstein Barr Virus and MS. Investigations by Prof Michael Pender and many others show evidence of modifications to metabolism that are apparent in MS that are caused by EBV infection.
(http://www.nature.com/cti/journal/v3/n1 ... 1425a.html )

The infection is common in the human population so the mechanism behind controlling EBV is the issue.

All herpes viridae stay resident for life. EBV persists in the B cell, CMV (cytomegalovirus) in the white blood cell, varicella-zoster (shingles) in the ganglia (nerve cell clusters) and so on.

There are several methods by which they replicate but basically they rely on the machinery of the cell to reproduce. When you make a new cell you make a new virus along with it.

It is hard to measure herpes modifications as animal models are rare. In some cases, such as EBV, the point of infection can be years away from later stage symptoms so cause and effect are difficult to associate.

Now you know you have one variety (zoster) I think you would be wise to check for an EBV infection and modify your protocol to allow for it.

As an example of why you should, there are great benefits to maintaining adequate Vitamin D levels by gaining exposure to sunlight but Zoster and herpes simplex 1 (cold sores) are activated by sunlight. Whether they have any association with MS is unknown but they tire the immune system and are signs of inflammation. You don’t want that.

A low dose of valacyclovir (500mg morning and night) will help protect you from an outbreak.

On the matter of Tecfidera. I am pleased you are gaining benefit from it. It is dimethyl fumarate. Before it had that brand name it was called BG-12. It has a short life but can help reoxygenate hypoxic tissue. BG-12 was combined with similar esters and marketed as Fundaderm for the treatment of psoriasis in Europe. It was noted that people who also had MS responded well to it. That led to its rebranding as an MS treatment called Tecfidera.

The risk, as noted by the FDA, is after prolonged use it may trigger progressive damage of white matter in the brain through a condition called Progressive multifocal leukoencephalopathy (PML). That is the activated form of JCV (John Cunningham Virus) which is prevalent in the human population. You should be checked for that but most people don’t read the FDA notes. PML is fatal but there have only been a handful of incidences. It would be nice if you are not one of them.

Hope that helps.

Regards,

[RedneckMBA]

I went to my primary care doctor yesterday. My vitamin D blood level was 30, which was just at the lowest end of the 30 to 100 range called normal. We are going to test it again next week since I have been taking 5000 units a day since the last test.

[lyndacarol]

I went to my primary care doctor yesterday. My vitamin D blood level was 30, which was just at the lowest end of the 30 to 100 range called normal. We are going to test it again next week since I have been taking 5000 units a day since the last test.

Thank you for sharing your vitamin D test result. As you probably realize, the low end (your value of 30 ng/mL) of the reference range (30-100) is not the same as "optimal." (By the way, my first vitamin D test result was 31. Latest one was 24.)

Very possibly, in my opinion, taking 5000 IU a day since the beginning of the year skewed your test result. I think it is a good idea to re-test after at least a 2-week washout period in order to get a more accurate picture of the situation.

There are neurologists who recommend the vitamin D level should be reached and maintained at 80-100 ng/mL in people who have neurological symptoms. This recommendation may apply to you.

No doubt, you have already researched vitamin D and realize that the pathway of the supplement (or form made in the skin) requires a couple changes before the activated vitamin D form can be used inside the cells. If your cells have been lacking vitamin D for some time, it will take more time to replenish the cells and return the system to normal function.… (What I am trying to say is) Don't expect any quick symptom improvement. It may take as many months of optimal D levels as the number of months your symptoms have been present to restore yourself.