Hello everyone,
I posted in MS and Vitamin boards in December and have hopefully, finally received a diagnosis. New neuro says mild case of SENSORY Guillian Barre. Here is my story.

May 08 got a nasty virus with fever and went to ER. I was very dehydrated and had to get 2 IVs with meds for stomach problems and diarrhea. I got better but two weeks later thought I was having a relapse, sore muscles and joints with muscle cramping too. Went to PCP and had a CBC which came back high WBC but it was going down from original illness and he said don't worry just effects from virus. Well, it got worse dizziness and weak legs, felt like I was drunk and sick all in one! Go back to PCP and tell him symptoms and tingling in my knee has started. He refers me to Neuro and she thinks maybe MS. She orders bloodwork for Lupus and others and all are normal, including CBC. SHe sends me to Rheumy and this Dr says maybe MS, go back to Neuro. So I go back to Neuro and she orders MRI of brain and neck and EMG and NCS, ALL NORMAL. Neuro says post viral and it will go away try not to worry and forget that your whole body is tingling, feeling numb, dizzy, lightheaded, anxious and depressed. So I was a good girl and believed her. It was about two months from beginning that my symptoms peaked and I was really sick. I had to go and stay with my Mother b/c I felt so terrible, and I was scared that something bad like paralysis or a seizure was going to happen. I quit all meds including stomach ones right before the "peak." Beginning of third month things were slowly getting better and I started to belive I would be OK. At the end of 4th month It was gone, and neuro said it will never come back you are healed.
For Sept and Oct I was good, then I got a flu shot. Three days later some tingling in my thigh but it went away. Within a month everything was back and so was I at the Neuro. She ordered another MRI of brain, neck, and this time spine. She also repeated the EMG, all were normal again. She said I am stumped, I don't think you have MS but I cannot say for sure. Crap, I was sooo scared and I thought for sure that it was MS and it was just not showing up on MRI yet. I found this site and learned about b12. I had her order it and it came back at 283. I started cyano shots 1 per 7 days and 1 per week for 4 weeks. I used this dosage from what I learned on internet, not what was prescribed so I ran out. I am supposed to continue 1 per month for life.. So I start hoping that this is all b/c low b12 from years of zantac and the protonix. I fet a lot better after the 5th shot but when I had to go to the week schedule I did not feel as good. I feel better the day after my shots??? Anyway, by this time all Dr's think I am depressed and anxious and causing these things to happen. I start wondering myself and decide to get a second opinion from new neuro. I find the chief of neurology at a very respectable hospital and saw him last week.
I brought my MRI and bloodwork and I didnt say a word about MS. I tell him my timeline and he did a more thorough exam than the 1st neuro ever did. He tells me that it is a very mild case of Sensory Guillian Barre. My reflexes in my legs and feet were diminished and he starts with the symptoms, ones that I did have but had not told him yet. It was great, I finally had a diagnosis and he knew I would get better. He said the flu shot caused a relapse and that I am not supposed to get any vaccines for 2 years. He said I should have had a LP at the beginning and the window was only a month for it to show up. Also treatment is only effective in the beginning as well. By the way he is also a professor at the medical school in my city, maybe that's why he knew so quickly and all others Dr's didn't? He ordered a list of bloodwork labeled PN and I don't know the results yet. I am so relieved that it is not MS but I am still worried about the GBS. It is very hard to find info about the sensory subset and it seems to be pretty rare.
The thing that is nagging me about him is the comments he made about b12. He said it is ridiculous that b12 could causing all my symptoms and that I could be toxic from taking too much and he wants to check my levels. This bugs me! If he is so good, which I really need him to be so I can believe the dx, then why would he say that about b12?
I am the first one to laugh at the FDA, but even their website shows no toxic level for supplemental b12! My PCP said the same thing about "don't take too much". WTH?

Anyway, I ran out of the cyano shots and I waited until I did the bloodwork to begin a new regimen. I am going to get the Methyl but I have a question.

With neuro issues and stomach issues which one is best, sublingual or what? None of my Dr's are going to give me a rx for methyl shots so I am going to have to buy OTC.

Does whole foods carry these or do I have to get on internet? Seems scary getting something on internet.

I am also going to start the fiz mag that Mrs D recommended.

I take 50,000 Vit D once a month for low levels, can I still take a multi if I am taking the other stuff too? What should I worry about as far as mixing and having too much of something?

Does someone know of a good multi that is safe to take with everything else?

Thanks for everyone on this site! I have read these blogs so many times and it helps me when new symptoms appear and I get scared. You guys are a sanity saver!

Does anyone know about sensory GBS?

Thanks Again

Michelle