Why is MS so extremely difficult to diagnose? I am the only one in the country so far on a federal medical disability retirement and SSDI for having 100% of the symptoms of Progressive-Relapsing MS, a classic text book case, without a diagnosis of MS or any illness or disease. The neurologists I have seen have done more then $100,000 of extensive and elaborate diagnostic and lab testing, the finest and best known today, for diagnosing any known illness or disease, but everything comes back normal. Every known neuromuscular disease, strokes, TIA's, and any known illness or disease ever discovered in the last 150 years has been ruled out, except MS. MS has not been ruled out or in. I have ringing of both ears and vertigo, without diagnosis, since tests come back normal. I have noticeable progressive neuropathy in the legs and feet, without diagnosis. Now I am home confined, largely bedridden, unable to drive, hourly relapses, monthly progression, loss of some sight and some hearing, loss of all reflexes, severe pain, loss of most swallowing, impaired breathing, and I am in an electric wheelchair, since everything begin overnight in October 2004, without diagnosis. That means I cannot be prescribed most medications or treatments, without a diagnosis. Steroids cleared up some of the hot and cold sensations but I cannot be on steroids for any length of time. I am currently not on any medications. But as a Christian, I remain very positive and I ask for no pity. It is a shame I cannot be diagnosed.
I would caution your docs to be careful how they are completing your federal paperwork. I used to be responsible for doing that in the doctor's office I work for, and when finished, the doctor would sign it. Without a diagnosis, the paperwork will not be processed, which will raise a red flag for sure. Your doctors are vulnerable for fraud charges if they are keeping you off work without a standard ICD-9 coded diagnosis recognized by the insurance bureau and hospitals.
As you probably know or suspect MS is appearing more and more to be a group of different diseases that all share similar symptoms and progression. From what I have read there is increasing evidence in the medical/academic community that the variants of this disease may be as distinctly different as lets say Melinoma and Basal Cell Carcinoma. Similar but different. From the sound of what you wrote and the rapid progression you described you probably have one of the more unusual rarer variants that are harder to treat and may not have any approved Rx for. If you have progressive I thought Novatrone was approved for that and could help you. I can't imagine why your Nuero would withhold a DX if this was the difference in getting treatment or not. You should insist on this, and understanding why. Maybe they could refer you to some clinical trials. Print this post and take it with you next time and get some answers. You're in my my prayers? BTW, where did you teach?
Many of these topics have been discussed at length with this "Professor Hall". If you read the thread called "I am very frustrated. Help! Arrrgghh!" (currently on page #4) You will get many of the answers to your questions about why his posts don't appear to make sense. We all tried to give him suggestions, but he rejected everything that was offered. Q
I was diagnosed in 2000 and put on MS meds...then in 2009 was told misdiagnosis. Last week I landed in the hospital due to a severe exacerbation causing me to fall with a shelf crashing ontop of me.
MS is the hardest to diagnosis we all agree. I also agree that MS doesn't manifest in hourly intervals...mine was fairly quiet with small flares the two years I have been off Beta-seron. For me my tests do show brain lesions so I was easier to diagnose yet they still were unsure. Until last week.
One thing I do know for sure about MS is the unpredictible nature of it.
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