If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Re: Symptoms

Postby Maledicte » Wed Jan 11, 2012 2:04 pm

Other than the headaches I,d (I'm not a Dr)
Possibly MS
Google MS Lifelines
The nurses there are very informative
I have no insurance and they gave me a # to
Ms society (or something) that gave me a free (cranial only
MRI & that's how I got dx'd w/MS
Been on rebif since October '11
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Re: Symptoms

Postby IamMel » Wed Jan 11, 2012 6:25 pm

Thanks for your replies, everyone! Just out of curiousity, does anyone know how common it is to have normal neurological testing and still have something neurological going on? The episodes of dizziness and confusion along with the pain and numbness in my back and abdomen, sensation of pins and needles in my extremeties, getting cold sensations in various spots on my body, and having my arms constantly "fall asleep" at night make me think something is going on with my neck, back, or head. I'm actually jealous of my arms falling asleep at's more than I can say for myself ;) Anyway, I'm continuing to exercise, go to yoga, eat well, and take my vitamins. I'm keeping a positive outlook, but it's just frustrating to have dismissive doctors tell you everything you're experiencing is rooted in anxiety. If it truly is anxiety, that doesn't lessen the impact the symptoms have on my life. A little empathy would go a very long way :) But maybe I just feel that way because I'm a counselor :)
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Re: Symptoms

Postby MarkLavelle » Wed Jan 11, 2012 9:43 pm

I wouldn't be satisfied with that "anxiety" biz either.

But I would also say that I or folks I know have had all of the symptoms you mentioned for purely mechanical spinal reasons (which would generally also result in normal neuro tests). If any/all of your symptoms seem position/posture dependent I'd be looking for a good back doctor...

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Symptoms

Postby IamMel » Mon Jan 30, 2012 6:14 pm

Well, I am finally getting somewhere. I have found a general nurse practitioner who is taking me and my symptoms seriously. We're covering the basics first with blood testing for anemia, vitamin b and d levels, inflammation, etc. Next is finding a way to get further neurological tests without insurance (EEG, possible MRI, etc). She has some concerns with potential seizure activity, lupus, rheumatoid arthritis (my mom has), and fibromyalgia. She has me keeping a daily journal of diet and symptoms. It is so refreshing to finally be taken seriously.
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Re: Symptoms

Postby IamMel » Wed Feb 01, 2012 5:59 pm

Some of the results are in. Looks like my vitamin D levels were definitely low. I'm not sure how low, since I wasn't able to talk to my provider. I was given an Rx for 50000 units of vitamin D/week. I've tried to do some on-line research to find out of a vitamin D deficiency could be the underlying cause of all of my symptoms. I'm hopeful that by taking this one pill a week, my symptoms will improve, as they have gotten worse recently. Does anyone know if vitamin D can help with fatigue? Despite getting adequate sleep, eating a very healthy diet, drinking lots of water, and taking supplements, I am exhausted to the point that getting through the day is becoming increasingly difficult. Could the D deficiency also explain all of the numbness/tingling, confusion, ringing in the ears, headaches, ear pain, etc? Fingers crossed :)
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Re: Symptoms

Postby blue129 » Thu Feb 02, 2012 8:00 am

Throw that Rx's probably for D2 and won't do you a bit of good (I found out for myself). I took 50000IU/week for four months (prescribed by OB/GYN) with very little change. Went to my internal medicine doc and he told me to toss it and take 2000IU/daily D3 (the OTC stuff) instead. Within a few weeks I noticed my hair and nails looked so much better. It did help a little with fatigue, but since I've got all these other symptoms going on I'm not sure that the D deficiency was my entire problem. It and B12 are at normal levels now and I still have some issues (worse during one of my "episodes"). I certainly didn't have any of the other symptoms and I'm pretty sure I was deficient for years--they started some months after I brought my levels up.
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