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


Postby Mikej » Fri May 30, 2014 12:26 pm

I have been looking for answers for 3 years , I see by some of the post some have been waiting longer .
My all started with flue like symptoms. I spent 2 days in bed when I got up I had no balance and the left side
of my face felt numb. I don’t remember much other then a lot of falling and throwing up but my wife and daughter took me to the ER
they said some kind of virus I guess. My wife made appointment with our Dr. He had no clue what was going he sent me to a ENT they had no clue .
Mean time all I can do is crawl to the bath room , if I stood up I throw up and fell down . My wife and daughter found me laying on the floor several times, burses on my face , black eyes and fat lips .
This all started in June of 2011 by November my Dr. decided I need to see a neurologist . My daughter was taking me to most of my appoints so my wife didn’t have to miss work well any way we go see the “neurologist”
I don’t know how long we waited but after I throw up they got me in pretty fast we go in to his office he is looking at my file I guess tells me I need to see a physiologists and said he can recommend one.My daughter is one that cant hold her tongue , he heard some things I'm sure he will never for get .
My daughter went to work finding neurologist and found the The University of Nebraska Medical center . I don’t remember the fist Dr. I had contact with I know she put me through a ton of test and put up with me throwing up a lot.
She finally put me in a vision I can remember the name of the place but they help you with cooping with your balance problems. They did help but a lot was done on my own . No more throwing up !
In January of 2012 The first neurologist sent me to see a Multiple Sclerosis Neurologist . Before I even got to see him I had my first MRI done and a EKG . When I did see him he told me a little about MS and symptoms and what they look for.
I had had a history of migraines and they would effect my left eye worse then my right ..well any way he told me about the spots on my brain and that he thought they were related to the migraine but he want me to see a neuro ophthalmologist because my eyes didn’t track like they should and my pulps didn’t dilate like they should. ( I DIDN’T MEAN FOR THIS TO TURN INTO A BOOK try to cut it short here ) saw the eye dr. went through a few eye exams some were not fun by any means. Eye Dr. told me I need to see a Retina eye Dr. he tells me I have cone and rods degeneration worse in my left eye and that I have color loose do to cataracts . I had told annoty body my vision had gone to hell when all this crap started , So he sent me to see another eye dr. who replaced my lenses on both eyes . I can see colors again left eye still a mess hurts all the time .
In and out of follow up appointments then in November 2013 Multiple Sclerosis Neurologist orders another MRI with contrast and spine what ever almost 3 hrs in that tube. 2 weeks later I get a call he wants to see me in his office the next day . Got me freaked out nurse not going to tell you shit ask ok is this bad or good ???? nurse You’ll have to ask the dr. ...My Daughter takes to my appointment we get in to see him pretty fast he says well the spots are still there only one looks to have got bigger or changed but I’m pretty sure you don’t have MS ....ok now what . Its May 2014 my left arm down into my hand is going numb the left side of my left foot up my leg is going numb left side off my face still feels like it sags and its tingles all the time right up into my hair . I don’t know if any of you know of a movie with Tom Hanks Joe and The Volcano??? well he's told he has a brain cloud that’s how I feel ..I forget things ...I'm constantly getting glass of water and when I get back to where I was going there might be 2 or 3 already there. I cant drive ( really sucks ) I get motions sickness never had before in my life. I don’t fall as much as I use to big pulse +++++ I don’t about anybody else but I take pills for ??? I'm not sure why I don’t have high blood pressure but a take a pill for it I'm on a anti seizure med never had seizure in my life ......

I don’t Know where to go ..
Thanks for letting me rant.

p.s. took me a hour to do this ...sometimes I forget what the hell I'm doing .
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Postby lyndacarol » Fri May 30, 2014 2:37 pm

Welcome to ThisIsMS, Mikej. We are here to listen to rants, share our experiences, and offer our opinions.

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

Any one of the doctors you have seen could have and SHOULD have ordered vitamin B12 testing! Many of your symptoms are common to a vitamin B12 deficiency: weakness, less-than-optimal eyehealth, less-than-optimal memory, less-than-optimal balance, spots on the brain… even migraines/headaches.

You (and your wife and your daughter) may find information in the following video interesting – please find time to watch : "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!
Go back to your family doctor and ask him to investigate a possible B12 deficiency. Your doctor will need to run a full panel of tests (NOT just the one blood test for B12). By the way, ask for a copy of your test results and keep your own file of them at home.

These include...

• A blood test for your B12 level
• 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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Postby Mikej » Sat May 31, 2014 8:03 am

Thank you for your response.
I have all my records here going back to the day it all started I will go through the and see just what test have been run .
I do want to add my Dr. up my Gabapentin yesterday to 2 in the morning and 2 in the evening they are 300mg tabs.
I stared them last night I did sleep all night but woke with left arm and left leg hurting like crazy and my head feel funny hard to describe like little head rushes
and my balance is way out whack.
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