Need Advice

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

Need Advice

Postby zenicity » Wed Oct 07, 2015 1:43 pm

Hello all,

Let me first say that I appreciate any input that any of you can give me. I've been dealing with some various issues over the past couple of years, and while I don't necessarily think I have MS, it seems that more and more the symptoms point to a demyelinating disorder. I am a 24 year old male.

It started two years ago, when I started to get dizzy spells and had some minor clumsiness in my hands. It wasn't life-changing, but as a bartender and a Software Engineering student, I definitely notice changes in hand dexterity. After some checkups at my PCP, my doctor ordered a brain MRI. It returned clean, except for a polyp in my sinuses, which it only caught the edge of. I then went in for a CAT scan of my sinuses to confirm. It showed some 'extensive disease' in my sinuses, which I was surprised about due to a lack of symptoms that might have manifested from it, other than possibly the dizziness.

A couple months later, I had my first full-fledged 'attack' of symptoms. For the span of about a month, I was miserable. Very dizzy, extremely weak arms and legs, very clumsy hands, extreme fatigue, lots of muscle twitching, a pretty much constant essential tremor(I felt like I was vibrating at a molecular level), along with headaches, had some extreme brain fog and memory issues. I was obviously very worried, and the doctor put me on anti-depressants to try to get me at least a little less worried. I considered dropping out of school, but shortly after starting the meds, the symptoms sort of fell away. The neurologist decided it was a combination of anxiety and carpal tunnel syndrome, and gave me braces to wear, which I have since then. I had a normal, healthy summer. Got a great girlfriend, had a lot of fun, felt pretty good.

At the beginning of this month, my doctor considered taking me off my meds, as I was having some GI side-effects that were less than enjoyable. In the span of a couple weeks, I came off the meds, got a nasty head cold, and started school again. I thought I was getting better from the cold, and noticed that during an evening at work, my fingers were weak. Using a computer required much more effort from my fingers than I was used to. I also felt weak and tired, but I chalked it up to the cold. I went to sleep that night, and woke up the next morning with a very abnormal feeling headache, and some serious memory loss. I couldn't remember what day it was, what I did the previous day, and just felt like something was seriously wrong. The best way I can explain it is that I felt like I had brain damage.

Since then, the symptoms have returned. Tired arms and legs, dizziness, vertigo, cognitive and working memory issues, clumsy fingers and hands, trouble focusing my eyes at times, lots of tremors and shaking, primarily in my hands. Muscles all over my body seem to have 'twitch attacks' whenever I am laying down for bed. They just twitch a lot for 1-5 seconds, only individual muscles. When I hold my hands out the fingers twitch and shake individually, but on a small scale. Nothing extreme, but also visual to the naked eye.

Does any of this sound like what some of you went through? I apologize for the wall of text, and I'd be happy to answer any questions. I feel so isolated, because my neurologist takes MONTHS to get an appointment with, so answers are very difficult to come by. I have an appointment on October 29th, but I'm going to try to get my PCP to order a brain and/or spine MRI to have when I visit the neurologist. I went to the ER this Sunday because I was exceptionally dizzy, but they decided I wasn't having a stroke, and didn't have bleeding in my brain, so they sent me home.

Thanks again for your time.
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Re: Need Advice

Postby lyndacarol » Wed Oct 07, 2015 4:00 pm

Welcome to ThisIsMS, zenicity. Your symptoms are consistent with many conditions. MS can only be considered after other more likely possibilities have been ruled out.

I recommend that you watch this 50-minute documentary featuring Sally M. Pacholok, RN, BSN, & Jeffrey J. Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their new book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist, Yale Medical School; Ralph Green, M.D., hematologist, UC Davis; Donald Jacobsen, PhD, Cleveland Clinic (Homocysteine Research Lab):

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

Since it is estimated that 40% of the American population has suboptimal vitamin B12 levels, this seems to me to be the most logical place to start your investigation. When you see or call your PCP, request that he order the initial screening for a possible B12 deficiency; this involves 4 tests: #1 a serum B12 test (or the newer, more reliable HoloTc test, if it is available in your area); #2 RBC folate test; #3 a serum homocysteine test; and #4 a methylmalonic acid test (in either the serum or urinary form). Do not take vitamin B supplements before testing as this will skew the results.

Request your own copies of results for any tests you take – it is important to have the actual numbers and the reference ranges (memory often fails us).

Unfortunately, the diagnosis for any neurological condition is not simple – there are many possibilities. We wish you all the best; please let us know how it goes.
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Re: Need Advice

Postby ElliotB » Wed Oct 07, 2015 4:28 pm

Is your neurologist one that specializes with MS? If not, you may want to consider another.

In the mean time, there are many things you can do to improve your health with regard to diet, exercise, nutritional supplement and lifestyle, changes that may help you feel better and feel better sooner regardless of your final diagnosis.
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