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Old 10-21-2019, 09:43 AM #1
Msgolden3222 Msgolden3222 is offline
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Default MS

What were your symptoms prior to being diagnosed with MS? How old were you? What type of testing did you receive? I have been having symptoms for years. I had scans years ago that were clear except for migraines and cerebral aneurysms. I had a spinal tap 10 years ago showing only 1 band. My nuero said I have all the symptoms of MS but sometimes it can take a while to show...🙄 Thanks everyone!
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Old 10-21-2019, 07:06 PM #2
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Hi Msgolden3222.

Multiple Sclerosis is a disease of the Central Nervous System. Multiple Sclerosis is a demyelinating disease and has a diagnostic criteria (The Revised McDonald Criteria).

Having symptoms that might be MS type symptoms doesn't mean it is due to MS. Many conditions have similar symptoms as those seen in MS. The diagnostic criteria requires all other possible causes for a person's symptoms must be ruled in/out and other (positive) testing indicating the possibility of MS.

Below are two links which give information about diagnosing MS and some of the other conditions that can have symptoms similar to MS

Diagnosing MS : National Multiple Sclerosis Society

Other Conditions to Rule Out : National Multiple Sclerosis Society

To know if you have MS you would need to go through the diagnostic process.
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Old 10-25-2019, 05:29 AM #3
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As Snoopy said there are certain criteria to get the diagnosis and a litany of conditions that can mimic MS. Yes your neuro is correct that sometimes it just takes a bit for it to show in the imaging, and while o-bands are fairly definitive if you have them in the range, just because you don’t doesn’t mean it’s not MS.

For my own diagnosis it was pretty much a process of elimination, yes I have hemochromatosis anemia which could explain some of my symptoms but not all of them and it’s well managed and lacking in organ involvement to have degraded to the physical and mental impairments, it could have been a brain tumor, but given the length of time for symptoms and progression it was slow growing but the parts impaired would have made it at the time inoperable. Since I didn’t have insurance at the time and copaxone was still super expensive experimental medication, it was a wait and see game. If I was still alive after 6 months and not further progressing woohoo not a brain tumor .

It could have been MD, also not much that could be done for it, but an odd ball case since if it was childhood MD I was progressing very very slowly, and if it was adult onset I was super young at the time to have it It also could have been ALS which once more nothing could be done, sooooo... treat the symptoms and hope it’s not! Or what my doctor was really betting on if he had to pick was MS. It was another 10 years before I had insurance and could get the testing done and then it was wham bam congrats you have MS . MRI showed the lesions, and spinal tap showed the o-bands and it was in the range. So it was really easy, and by then copaxone was out, covered by most all major insurance and had a co-pay assist plan.

So I’m not really sure how it would have worked if I had started the process 10 years earlier, or better still if my parents and pediatrician had started the diagnostic procedures even before then since throughout childhood I had many of the same symptoms as now just they get worse, sometimes a little better and then worse again, oh the joys of rrms
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Old 10-25-2019, 07:22 PM #4
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Quote:
Originally Posted by Starznight View Post
Since I didn’t have insurance at the time and copaxone was still super expensive experimental medication

and by then copaxone was out, covered by most all major insurance and had a co-pay assist plan.

So I’m not really sure how it would have worked if I had started the process 10 years earlier
Hi Starznight.

Just a FYI for you and others reading this thread. Betaseron was the first Disease Modifying Therapy(DMT)/Disease Modifying Drug(DMD) for the treatment of MS.

~ Betaseron was FDA approved in 1993
~ Avonex was FDA approved in 1996
~ Copaxone was FDA approved in 1997

I was 24 years old when I was diagnosed, with symptoms that went back to childhood. I was diagnosed quite some years before The DMDs/DMTs.
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