Specialist thinks ms

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Specialist thinks ms

Postby rauz » Fri May 30, 2014 12:33 pm

Hi everybody. I'm a 26 year old male from Ontario Canada. Alright so I have been going through a weird and frustrating experience. It all started when I was 16 I was diagnosed with Postural orthostatic tachycardia syndrome (POTS) it's a disorder of the autonomic nervous system. I was in the hospital for one month where they did many tests including a head MRI and nothing showed. They gave me a beta blocker and that was that.
Now during that time I would get face pain that would last a day or so and go away. Now fast forward a few years ago I started getting the face pain for 5 days at a time and it would go away. Now starting late February I had the face pain 9 weeks straight before going away. When it went away I started getting the weird feelings in my groin that would shoot down to my leg. It wasn't pain it was more of a intense sensation that made me feel like I wanted to stab my leg or something. Now the odd feelings in my leg have gone down in intensity and my face pain has been back for a week again. Nothing wrong with my sinus, no tmj, they've tried me on carbamezapine, amitritpyline and now cymbalta. Nothing has helped the pain. I also get all kinda of weird tingly sensations all over my legs . Also over the years I would get tingling in my hands that would last 3 days straight before subsiding. Also I have difficulty swallowing and get random burning pains in my body . I also get weird skin sensations when being touched. If someone rubs my back I get these uncomfortable sensations down my arm etc. Another thing I noticed is when I bend my neck down sometimes I get a weird chill down my back and arms. I saw an award winning specialist last week and he said he thinks it could be ms. The MRI is on Monday .

This has been the worst experience of my life the face pain is unbearable and I have been off work for 2 months bc of all this :( .

I know I had an MRI 10 years ago and it was clear so does that mean this one will prob be clear as well or lesions could have formed in the last 10 years?
Another thing I've noticed the last few weeks is my right eye sight is terrible it wouldn't pass an eye test when it was 20/20 before as I had laser eye surgery 3 years ago. It doesn't hurt or anything just blurry . All my symptoms I've had over the years are getting worse and all coming back now at the same time. I've also had bouts of depression and anxiety in the past .
I've started taking magnesium and omega 3 supplements. My physical neuro exam is normal (reflexes etc) I know ms is an auto immune disease and both my sisters have auto immune diseases.
Any input would be appreciated, thank you .
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Re: Specialist thinks ms

Postby lyndacarol » Fri May 30, 2014 3:04 pm

Welcome to ThisIsMS, rauz.

Numbness/tingling in the arms, hands, legs, and feet is the definition of peripheral neuropathy. In the list of blood tests recommended by the University of Chicago, testing for a vitamin B12 deficiency is listed first:

http://peripheralneuropathycenter.uchic ... ndex.shtml

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
Hepatitis C and B

Many of your symptoms are common to a vitamin B12 deficiency: less-than-optimal eyehealth, tingling, pain, depression, difficulty swallowing (a.k.a. dysphasia)… the "weird chill down your back and arms when you bend your neck down" is called L'Hermitte's Sign and this can also be a symptom of a B12 deficiency .

You may find information in the following video interesting – "anxiety," "tachycardia" and "orthostatic intolerance" are in the symptom list: "Everything You Want Your Doctor to Know about Vitamin B12"


I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); 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).

A B12 deficiency can develop at any time in a person's life!
To eliminate B12 as a possible cause of your symptoms, your doctor will need to run a full panel of tests (NOT just the one blood test for B12) .

These include...

• serum B12
• RBC folate
• urinary methylmalonic acid (uMMA)
• fasting homocysteine
• unsaturated B12 binding capacity

A B12 deficiency is easily treated with supplementation (a B12 injection once a week for 10 weeks could be a useful diagnostic or therapeutic trial treatment); when it comes to MS, the cause is unknown and the "experts" have no effective treatment for it.

MS is a diagnosis of exclusion. There are many common conditions to rule out first. Start by investigating the possibility of a B12 deficiency. Good luck and let us know how it goes.
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