Misdiagnosed for 30 years??

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Misdiagnosed for 30 years??

Postby syriusly » Mon Nov 14, 2011 3:01 pm

Amazed, confused and bewildered best describe my emotions on this. I had been diagnosed with SM in 1979 the means of said diagnosis were cat scans, sector scans and multiple myelograms. A surgical procedure called "Plugging the Obex" was preformed on me after diagnosis. This procedure is no longer considered worthwhile or beneficial and is no longer preformed. In the early 80's I had MRI scans done and though there are no "films" left of these, there are notes in my old medical records stating I had a syrinx. Knowing that there was not much more that could be done for my SM symptoms and due to lack of health insurance (Our healthcare/insurance system sucks btw!) I had gone a long period of time just dealing/coping with said symptoms until I finally noticed/convinced myself that they had gotten progressively worse. After finally getting medical insurance (at the cost of $500 per month!) I eventually get back to the same top hospital that I was 1st diagnosed at with a new Neurologist who had MRI scans done on me which ended up showing a perfect looking spinal cord with no signs of syringymyelia at all. The MRI's showed a perfect text-book health spinal cord. The neurologist looked at me like I had made the diagnosis up and requested the recovery of my old paper medical records. (I was impressed these were still available and found) He then reviewed my old records and the original pediatric neurologist I had seen years ago happened to still be working there. They review my records and both are in agreement my surgery back then was not necessary then quickly quoted "Hind sight is 20/20". Did not get much more information on or about that afterwards and the now changed/new diagnosis is "hereditary spastic paraplegia" which is an educated guess there are expensive DNA tests to prove this diagnosis however they are expensive and there is less than a 25% chance that these tests will prove said diagnosis and are not practical to do unless I have or am planning to have children.

So really I am confused I had not heard of a syrinx being there then years later miraculously vanishing and if that was or is the case then miracle aside was I that unlucky to have had 2 neurological problems with similar symptoms? I am just at a point now where I have many many more questions than answers of how to proceed both medically and or legally. Are there any legal options should I consult an lawyer or is the statute of limitations in effect here?

Any advice or information would be greatly appreciated, Thanks
Michael.
syriusly
 
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Re: Misdiagnosed for 30 years??

Postby pmaxwell » Mon Nov 14, 2011 3:07 pm

Michael,

syrinxes can decompress on their own. It is a small percentage but not unheard of especially with chilren.

Patricia
Together We Can...
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Re: Misdiagnosed for 30 years??

Postby syriusly » Mon Nov 14, 2011 5:25 pm

pmaxwell wrote:Michael,

syrinxes can decompress on their own. It is a small percentage but not unheard of especially with chilren.

Patricia


Yes so I beat those infinitesimal odds and had mine decompress yet I still have worsening similar symptoms due to yet another yet totally different neurological problem? Just find it difficult to have more questions after seeing the experts/specialists.
syriusly
 
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Re: Misdiagnosed for 30 years??

Postby Beverley » Tue Nov 15, 2011 3:45 pm

Wow, I kind of know how you feel. It is hard to believe you have had one thing all along only to find out that the correct research was never really done. HSP and PLS Primary Lateral Sclerosis (PLS) do have similar symptoms as to SM. The unfortunate thing is that most of these other neurological conditions are often diagnosed by excluding all the other possibilities. I know for myself, PLS was mentioned as a possibility as I have the rigidity, spasticity, and ataxia in my legs. I have been diagnosed with Dopa-Responsive Dystonia (DRD) another rare neurological condition that mimics CP. I was misdiagnosed with CP for 42 years only to find out that I need to take Dopamine and should have been taking it all my life.

All I can say is if your Neurologist is not a specialist in this area you need to find one that is or know that he/she is conferring with someone who is a specialist. These conditions are hard to diagnose and are often just educated guess on the part of the Doctor that is making them. It can take years sometimes to know for sure what it is.

It is frustrating not to fit into a diagnosis category. While I have Chiari, SM, and DRD my symptoms still do not all fit into one category or the other and for all intensive purposes there are days that I cannot tell you what is causing what problem. You really just have to keep plugging away at it and hope to come to some conclusion that makes some kind of sense and I cannot even tell you for sure if that is possible.

Do know though that you are not alone in your quest there are others out here finding similar issues and are just hoping to one day get off this Merry-go-Round for a little while.

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
Dopa-Responsive Dystonia (DRD)
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