Seeking Perspective.

[Imperfectionist]

Hi everyone! I'm a 30 y/o male, and this has now been going on since either late 2014 or early 2015. 

I found this site a couple of months ago. I wanted to post immediately, but instead refrained and read what everyone else has posted. I found it exceptionally helpful, and decided to be patient and follow what leads I could so people don't have to repeat themselves. 

I want to especially thank lyndacarol for posting about vitamin deficiencies on every thread. Thank you! Your insistence gave me the motivation and direction to research more into that, which led my doctor to test for basically everything except b12.

She felt that testing for b12 was unnecessary, since she apparently helped someone who wrote a book on it do research and says she's an expert. Also I eat a lot of b12 food (steaks) and take supplements. She doesn't think it's neccessary. I tried to get her to do it anyway, but she gave me this look and that was that. 

I've researched enough to think what's happening to me is very unlikely to be MS. My vitamin D level was at 23, and that's likely the culprit. However, even though I'm taking the prescribed supplements and spending hours a day in the sun I've had new symptoms appear. I'm long past the paranoid stage, and now I just want to figure out what the problem is and either fix it or find a better way to cope. But that's proving to be incredibly difficult, a situation I'm clearly not alone in. 

The shortish version of symptoms:

-Fatigue, sometimes extreme. The worst of any symptom. Not the go to sleep kind, the kind that keeps you awake. It's just relentless.

-Pain, especially in my upper arms, that feels like someone stuck a spatula between my muscle and bone and is trying to pry the muscle off. It ranges from barely there to being migraine intense. Although, contrary to my metaphor there's no feeling of a spatula, just of the muscle trying to break free. 

-Weakness, especially in my hands, lower legs, and knees. It ranges quite a lot from day to day as well, but at it's worst I literally can't open a plastic spice container.

-Eye issues. These change in nature a lot, and they never seem to last long. Mostly it's my left eye. It's been everything from a loss of color to a large rectangular blind spot. Recently I had vertically oriented double vision for about an hour, also in my left eye. 

-Tingling in different places. Occasional sensations of shock, usually travelling from my knee or elbow to the extremity, and then a residual stabbing pain or numbness. Usually doesn't last longer than half an hour or so.

-Brain fog and immediate memory issues. Like I'll forget to turn the stove on and stand there like an idiot wondering why it's not cooking.

-Muscle spasms.

-Symptoms come and go. Life will be very difficult for three weeks or so, and then the symptoms will recede, then vanish. I'll have two to six weeks of wondering what I was so worried about and then it'll hit again like a truck. I can sense it coming or going a day or two before it does. 

Each relapse seems to develop new symptoms, although it always seems to recede completely each time. 

Symptoms I have *not* had. 
-Numb whole limbs
-L'hermette's sign
-The "MS hug"
-Balance issues not rooted in weakness/fatigue

I'm taking 2000 iu of vitamin D a day on the advice of my GP, and 1000 mg of b12 on my own initiative. I also take magnesium, zinc, and calcium supplements once or twice a week. This is basically a new thing for me- I've always been naturally healthy and had a very good diet growing up. 

Here are the relevant tests and numbers. Other than b12, I've probably been tested for it:

Potassium: 4.3
Calcium: 9.6
Magnesium: 1.8
Vitamin D: 23
Negative for Chlamydia, Ghonorroeae, and HIV
Negative for Lead poisoning
Transglutinase IGA: 4.3
TSH 0.630 (this seems low to me since the reference range is 0.4-4.0, but the doc says it's fine.)

I have a whole stack of other tests as well, in case there's something I've missed. I've decided to finally post here because I'm hoping y'all will have more information than I do and can help lead me to new sources.

Here are my main questions:

1) Does a vitamin deficiency act in a remitting relapsing way? To me that doesn't make logical sense, but I'm betting i'm ignorant of something about the body that would make it do that. I mean, if you're low on vitamin C you get scurvy and it just gets worse until you eat some or die. Have you heard of that happening or had it happen yourself?

2) Is there a word for symptoms that relapse/remit other than "relapse/remit"? I can't find anything else that does this in my googling, and I can't help but wonder if I don't know something.

3) Am I missing anything else? I realize y'all aren't doctors, but does this sound like several things together? 

I think I have more, but this is already so crazily long and I should stop here. Thanks again for the help you've already provided!

[Scott1]

Hi,

Why haven't you seen a neurologist?

What tests for other infections have you had? (eg EBV, mycoplasma, rickettsia, lyme etc) It's not clear to me why your doctor has tested you for the things you have listed. It seems haphazard.

If your doctor is so research focused, ask for a fasting amino acid test. That way you can see what you are deficient in. Also see where your uric acid level is against the range. That will indicate how you are metabolising purines and tells a lot.

I agree, there's plenty of ideas here but you need to work from being fact based and your doctors approach to date doesn't help you to establish them.

This is my take on things - http://www.thisisms.com/forum/regimens- ... 24019.html

Regards,

[NHE]

She felt that testing for b12 was unnecessary, since she apparently helped someone who wrote a book on it do research and says she's an expert. Also I eat a lot of b12 food (steaks) and take supplements. She doesn't think it's neccessary. I tried to get her to do it anyway, but she gave me this look and that was that.

So, your doctor can evaluate your B12 levels without running a test? That's amazing. She should patent that technique. Symptoms such as brain fog, fatigue, tingling and muscle weakness are consistent with low B12 or low B12 utilization, e.g., low transcobalamin.

[lyndacarol]

I've researched enough to think what's happening to me is very unlikely to be MS. My vitamin D level was at 23, and that's likely the culprit. However, even though I'm taking the prescribed supplements and spending hours a day in the sun I've had new symptoms appear. I'm taking 2000 iu of vitamin D a day on the advice of my GP (According to GrassrootsHealth, http://www.GrassrootsHealth.net your low level of 23 ng/mL would require between 5000-10,000 IU per day to reach their recommended level of 40-60 ng/mL, http://grassrootshealth.net/media/image ... single.pdf) and 1000 mg of b12 (Taking B12 supplement before testing will skew the results of a serum B12 test. Discontinuing supplements for two weeks before testing should reestablish the usual level in your blood.) on my own initiative. I also take magnesium, zinc, and calcium supplements once or twice a week. This is basically a new thing for me- I've always been naturally healthy and had a very good diet growing up. 
…
Here are my main questions:

1) Does a vitamin deficiency act in a remitting relapsing way? To me that doesn't make logical sense, but I'm betting i'm ignorant of something about the body that would make it do that. I mean, if you're low on vitamin C you get scurvy and it just gets worse until you eat some or die. Have you heard of that happening or had it happen yourself? (Vitamin D deficiency causes rickets, a bone disease, this is indisputable – there is no remitting/relapsing. But when vitamin D is low, the body compensates for while for the systems affected. AND eventually a person will die of either a vitamin D deficiency or B12 deficiency)

2) Is there a word for symptoms that relapse/remit other than "relapse/remit"? I can't find anything else that does this in my googling, and I can't help but wonder if I don't know something. (I have only heard the term relapsing/remitting used.)

3) Am I missing anything else? I realize y'all aren't doctors, but does this sound like several things together? (very possible)

Welcome to ThisIsMS, Imperfectionist. Since you have been reading here for a while, undoubtedly you have seen the following information:

I recommend this 52-minute documentary featuring Sally M. Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their second book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

@25:50 On-screen statement: "It is medically negligent not to rule out B12 malabsorption in symptomatic patients."

(@51:00)

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

You will find many of your symptoms in this list – it is not necessary to have ALL these symptoms. I don't understand your doctor's reluctance to order the 4 tests necessary to rule out a possible B12 deficiency – in my opinion, these are not expensive tests (not at all as expensive as CT scans, MRIs, and other neurological tests):


From page 156 of What's Wrong with My Child? by Sally M. Pacholok, RN, BSN and Jeffrey J. Stuart, D.O.:

Costs (approximate) of commonly used blood tests for B12 deficiency:

Serum B12 (outdated test, but may be your only option)… $50
HoloTc (newer, more reliable; not yet widely available)… $118
Serum homocysteine… $147
Methylmalonic acid test (serum or urinary form)… $150

But, like you, I suspect (I have no medical background) that your low vitamin D is the culprit. It is my understanding that vitamin D is necessary for and enables systems of the body to function properly; vitamin D deficiency does not directly cause a symptom/disease (except for rickets and bone health problems). If vitamin D has been low for a while, the weakest system will be affected (and the body will compensate as long as it can)

[Imperfectionist]

Hey! Thanks the replies!

@NHE, yeah, she's just a genius like that. Actually, when I told her I wanted to see a neurologist she said "Why the hell would you want to do that?" She relented after a ten minute argument and gave me a number. Unfortuneately they are so booked out that I haven't been able to even book an appointment. (Which also answers part of Scott1's question.)

@Scott1, dude, talk about thick! I skimmed through the top and then read from the synopsis down. I'll need to do a lot of research in medical terminology to really understand it, which is excellent. Thanks!

I have a fasting metabolic panel with fourteen tests, is that similar? Would there be overlap? As far as the ones for infections i'll write that down and ask about them next time I see her. (Or better doctor)

Also, here's an article I found by accident. I'm curious what you think:

http://www.news-medical.net/news/201210 ... Mowry.aspx

@lyndacarol, thanks for the link to the documentary! I must have missed it- I'll watch it tonight!

[Imperfectionist]

@lyndacarol: That was excellent and fascinating. Any more?

In light of this I think it's clear I need to locate a new doctor.

Also, no one answered my second question- do vitamin deficiencies often have a symptom cycle? The only reason I still wonder if MS is on the table has to do with the way the symptoms totally go away and then come back. I can't find anything else that's recorded as acting this way.

Logically, it's possible to infer that it can based on the fact that b12 deficiency can mimic MS, but I can't find anything specific.

[Scott1]

Hi,

Can you put the metabolic panel results up with the reference ranges next to them?

Regards,

[Imperfectionist]

Yeah, sure.

Sodium: 139 (136-145)
Potassium: 4.3 (3.6-5.0)
Chloride: 103 (98-107)
CO2: 28 (22-28)
BUN: 13 (6-20)
Creatinine: 0.84 (0.70-1.30)
Glucose: 84 (74-100)
Calcium: 9.6 (8.6-10.3)
Total Protein: 7.0 (6.0-8.3)
Albumin: 4.9 (3.5-5.0)
ALT/SGPT: 29 (10-35)
AST/SGOT: 23 (14-50)
Alkaline Phos: 82 (53-128)
BILI Total: 0.7 (0.3-1.2)

[Scott1]

Hi,

I think you need to be checked for the infections I listed above . The tests you did have were an unusual collection for MS. The White blood cell count may give a clue as would the uric acid level. A fasting amino acid level panel often tells a lot.
The ones you put up don't look controversial.

Regards,

[Imperfectionist]

Thanks for checking!

As I said before, I don't really think MS is my issue. I was mainly hoping for new ideas and new directions to research, which I've now got! Thanks a million for your help! I'll go away now.

[lyndacarol]

Thanks a million for your help! I'll go away now.

You are always welcome here. Please let us know how it goes with you.