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CateHarp posted:
I know that getting a diagnosis can be a tricky thing. I've done my reading. I'm very frustrated with the wait. The main problem I have is that all my symptoms are those of MS, but don't behave in a typical manner. MRI's showed lesions, spinal tap was abnormal, many of the typical symptoms listed have cropped up over the last couple of years, but they don't have patterns that are "normal". How do I decipher this? My neurologist is careful not to jump on a diagnosis without ruling it out. This I appreciate, but what do I do now? I've attributed so many things to "I'm just getting older, it's to be expected", but now take a second look at. I'm so lost and confused. Somebody please advise me on what I should be doing. I'm not asking for a diagnosis based on this brief description, but I would like an opinion or two. Is it possible that a person can have TYPICAL symptoms that behave in an ATYPICAL manner?
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Rory26312 responded:
Hi Cate

There is no typical for this disease what is true for you may not not be true for any other patient.

What I would do next is gather up all your records and get a second opinion from a neuro who specialises in MS or an MS care center if that is an option where you live.

Also keep a symptom log , what is going on and possible triggers such as weather , fatigue, stress, heat , cold etc.

It will be up to you to advocate for yourself and sometimes you cann't be polite about it. Do not let anyone tell you it's all in your head and if someone does do not walk away RUN. (assuming you are able)

Stay in touch and let us know how you are doing and if you get anymore results.

Rory
 
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swampster1952 responded:
Hello Cate,

Rory has hit the "nail on the head" (so to speak). I know it is frustrating. But do get a second opinion from a neuro that specializes in treating patients with MS.

Good hunting,

Dave
 
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CateHarp replied to swampster1952's response:
Thanks, Dave. Having someone besides me thinking there's some other route to follow is encouraging. The sit and wait school of thought has gotten old.
 
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CateHarp replied to Rory26312's response:
My biggest stopper right now is that I've become unemployed and lost my health insurance. I'm currently receiving Medicaid and just don't know how to navigate the system in order to see a MS specialist. I'm going to do more research. Thanks for speaking out, Rory.
 
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hackwriter replied to CateHarp's response:
Dear Cate,

Uninsured and indigent patients can investigate two forms of charity care: your county Health and Human Services dept. and private charity clinics, which are often funded by religious institutions.

I used both when I was uninsured and unemployed. I had better success with private clinics. The one I found gave me free access to a neurologist and a GP. A nearby Catholic hospital that had a Care for the Poor program gave me free MRIs, blood tests, and a free colonscopy. I received my MS disease-modifying drug free from the pharma company, they all offer patient assistance programs to the uninsured.

Hope this helps.

Kim


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