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Multiple Sclerosis Message Board

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Need advice!
Jan 30, 2010
I am a 32 year old female.I am relatively healthy, until the last few years. Two years ago, I started having extreme fatigue, sleeping sometimes 18 hours a day with no releif...I was diagnosed with mono (but a later Dr said the test was not conclusive) The last year or so, I have been experiencing a host of symptoms, and I don't know what to do next! Last spring, I had an episode for a few months where I would suddenly become short of breath, feel faint and have flushing on my skin (looking like a sunburn). I would also have very low bp. My physician did not know what it was, but determined my vitamen D level was ridiculously low. I felt better for a few months after taking massive doses of vitamen D. Then, in September, I noticed a strange headache off and on for a few weeks, not like any other headache I have experienced, localized above my left temple. This became increasingly worse, accompanied by facial twitches, muscle spasms, lost 14 # in 2 weeks, nausea, diarreha, vomiting, extreme dizziness, blurred vision in one eye and sometime temporary blindness (with many times of seeing "floaters", all in the eye on the side of my headache). I have now had a headache for over 4 months straight. I have had various degress of loss of balance that seem to get worse when the headache is worse. I have had a CT, MRI, blood work up. The Dr. did send my MRI (on my head only) to the MS specialist, but no lesions were found. The stomach symptoms have lessened, and the headache intensity is less, but still constant. I notice the twitching most at night, or when I am very relaxed. The blurred vision is off an on, at times I see bright orange through one eye.

I now have constant hip pain, mainly on the same side as my headache (left) but aching in both sides and constant pain right above my lower back in the middle. I had an EEG two days ago and am waiting for the results. I am wondering if hip/back pain is common in MS and if my symptoms match other people? MS is the closest diagnosis that I have found to my symptoms...are there other things I should be investigating? I am also very frustrated and fed up with the Dr's I have been too...the common sentiment seems to be "we don't know what is wrong with you, we will keep giving you drugs until you feel better" (actual quote from my dr). Is MS diagnosed through a MRI of the spine?

I have been on 9 different migraine medications, a blood pressure med (which made me violently ill)...steriods. Currently, I am taking hydrocodone about 2ce a day to take the edge off the headache. Does anyone have advice about getting a diagnosis? What should I ask for next? This is severly impacting my mental health, marriage, work and friendships (not to mention my physical symptoms). Any advice would be greatly appreciated.

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