Conversion of Clinically Isolated Syndrome to CDMS

[jimmylegs]

no probs. so-called 'normal' range is the worst. eg http://advances.nutrition.org/content/7/6/977.short (poss relevant to nystagmus btw)

older posts on bell's palsy:
http://www.thisisms.com/forum/post21986 ... sy#p219863
and nystagmus:
http://www.thisisms.com/forum/search.ph ... =jimmylegs

i used to be b12 deficient as well. like undetectable. i changed my diet, and used sublingual strips to get b12 straight into my bloodstream, vs injections. at the time, the injections available were only cyanocobalamin, but i wanted methylcobalamin. i could get that in a sublingual product so that's what happened. worked like a charm docs were good with it bc they considered injections and sublingual comparable. levels definitely came up nicely!

[ebrownkirkland]

So, my husband had his VEP test this morning. Now we just need someone to interpret the results of that test. They are as follows:

Right eye:
76.5
113
149
7.46

Left eye:
83/5
111
153
7.15

Looks like normal values are:
75
100
145

With that being said, I'm going to guess these results are abnormal, but I'd love it if someone would chime in here. We are still awaiting word from the doctor.

Thanks!

[ebrownkirkland]

Haven't posted for awhile because the first specialist my husband saw ended up not having the greatest bedside manner... He basically told my husband not to see him again unless he couldn't walk or couldn't see. So my husband made an appointment with a new specialist. Guy at Georgetown and a really fantastic neurologist. He saw him Friday and I accompanied him to his appointment. We had made a list of all his symptoms and within the first hour of the appointment the doctor gave the diagnosis: relapsing remitting MS. He is starting my husband on several drugs, including Tecfidera. (The other drugs will treat symptoms, basically.) I wish we had seen this doctor sooner--my husband has developed new symptoms since he saw the last specialist three months ago, but I can see that this new specialist that spent three hours with us the other day was worth the wait.

[Snoopy]

Hi ebrownkirkland,

I am sorry to hear your Husband did receive a diagnosis of MS, but at least both of you now have answers.

The Disease Modifying Drugs (DMDs)/Disease Modifying Therapies (DMTs) are to hopefully slow progression, hopefully decrease/lessen exacerbations (relapse, attack, flare-up), and hopefully decrease lesion load. Even on DMDs/DMTs your husband can still have exacerbations, new/more lesions and even progress. There is no guarantee's when dealing with MS, on or off DMDs/DMTs.

Some find their symptoms improve on DMDs/DMTs, however that's not what these treatments are meant to do. That's where the symptom management medications come in. There are many symptom management medications that can be tried/used for some of the symptoms experienced in MS. There are very few symptom management medications that were specifically FDA approved for MS. Many of the medications for symptoms are used "off label."

What is important for your husband to remember is not everything we experience is due to MS.