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Questions posted in the
Neurology and Neurosurgery Forum have been answered by doctors from The Cleveland Clinic Foundation.
Question Title: MS...the difficult diagnosisForum: Neurology Forum
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Re: MS...the difficult diagnosisPosted by ccf neuro M.D. on April 16, 1997 at 20:00:31: In Reply to: MS...the difficult diagnosis posted by Kristi on April 10, 1997 at 13:31:46:
: Hello, I am a 22 year old female nursing student. I have been experiencing many symptoms similar to MS over the last year. At one point, I was diagnosed (clinically) with CNS Lyme Disease and treated for 30 days with Rocephin (IV). We saw no substantial improvement, so the diagnosis was questioned. I recently spent a month in a rehab hospital and regained much, but not all. My symptoms include: parasthesias (weakness, numbness, tingling) in mostly LE but some in UE(especially hands), partial paralysis in LE(at one point), tremors or spasms(mostly in LE) and stiffness(both mostly in right leg), decreased coordination in LE and hands, decreased balance and proprioception, bladder hesitancy and residual urine in bladder, shortness of breath and some pain in chest, difficulty chewing and swallowing, ringing in ears, and double vision, blurred vision and occasional floaters, speech is sometimes slurred or stuttering and difficulty getting words out, short term memory is affected and concentration, processing. I've had several setbacks since the rehab in which I fall and then my coordination is affected for several weeks. I've been told of the possibility of MS. I was wondering if you had any suggestions. Have we overlooked anything? Is it possible for MS to come and go like this? Are there any other ideas of a diagnosis to be looked into? I know this is a strange request, but I appreciate any suggestions. Thank you so much for your time and willingness to respond to these type of questions! I appreciate it greatly! The diagnosis of CNS Lyme disease is exceedingly difficult. Without knowing precisely how the conclusion was arrived at, it is impossible to give you advice regarding it. Many of your symptoms sound spinal cord level based, especially in particular the hand and lower extremity numbness, weakness, incoordination and proprioceptive loss. These symptoms and bladder dysfunction and visual disturbances are very common in multiple sclerosis. If your illness is indeed M.S., it sounds as if you are having a very rapid course. Remission and reexacerbation of symptoms is very typical of multiple sclerosis, although most often these occur over years. A subtype of multiple sclerosis called primary progressive multiple sclerosis has an aggressive course from the start of the disease. Other possible diseases that may cause similar symptoms to CNS Lyme disease and primary progressive multiple sclerosis include central nervous system vasculitis, an inflammation of blood vessels in the brain, CNS sarcoidosis, a different granulomatous type of disease that may affect the brain. From your description of your symptoms, it is clear that whatever disease process you have is affecting many different portions of your brain and spinal cord simultaneously. An accurate and PROMPT definitive diagnosis is thus mandatory in your case. Presumably you have already had a lumbar puncture/spinal tap, and MRI scans specifically of your brain and spinal cord, with contrast. Given the rapid and diffuse nature of your disease process, a reasonable search for vasculitis should be considered. Unfortunately, this may require an angiogram or even a brain biopsy (sounds horrible but isn't). If you or your doctors feel that there is significant uncertainty in your diagnosis, I would recommend that you consider an evaluation by a doctor who specializes in the treatment of neuroimmunologic diseases such as multiple sclerosis, neurosarcoidosis, CNS Lyme disease etc. At the Cleveland Clinic, we have a center known as the Mellen Center, which is the world's largest medical center devoted to the exclusive diagnosis and treatment of neuroimmunologic diseases. If you'd be interested in pursuing a second opinion with the intent of having an extremely experienced physician carefully review your workup to date and recommend any additional testing and treatment (which, by the way is very different for primary progressive multiple sclerosis than for traditional, "normal" so-called relapsing-remitting multiple sclerosis), I would strongly suggest you consider this particular center. Many people travel to it from all over the world simply because they have extremely tough to sort out cases just like yours. If this is not feasable for you, I would suggest seeking treatment at the nearest large, teaching institution hospital near you, which should have a neuroimmunologist (multiple sclerosis doctor) available to see you. I should emphasize to you that many of the conditions that may cause the symptoms you're having are to at least some extent potentially treatable, but the treatment for one disorder may be detrimental to the other, hence, again, the need for a definite diagnosis no matter what it takes to get it. The Mellen Center's phone number, if you are interested in seeking an opinion there (or asking them if they know of a competent neuroimmunologist nearer to you) is :216-444-8600.
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