Waiting for Diagnosis?

[Joy1268]

I have been waiting for an official diagnosis for 3 years.  In late 2008, I had an MRI of the brain which showed 3 lesions on the left side.  My symptoms at that time were tingling and weakness in my legs and feet, alternating between the right and left side, occasionally my right arm.  I also was suffering from migraines and trouble sleeping, and was started on Topamax for the control of the headaches and Elavil for to help me sleep.  One of the side effects of Topamax is tingling in the extremities, so although my headaches did decrease the tingling sensation increased for a while.  Then it abated and I was fine for a couple of months, until I started experiencing the tingling again, this time accompanied by numbness and weakness in my arms and legs.  I had trouble walking and using my hands and my balance was off.  This lasted for a few weeks and my primary had my nuerologist do a spinal which came back clear.  When that episode subsided, I had another MRI, this time of my spinal column, which did not show any lesions.  Weeks went by with no symptoms, then another episode of weakness and balance problems, accompanied by vision and memory problems.  Lasted approximately a month then gradually went away over a couple of days.  Fine again for a month or so, then another "flair" of crappy health with memory, vision, balance and tingling issues.  Primary now wants to do another MRI of the brain so he can officially diagnose Multiple Sclerosis and get me started on something to slow the progression - my insurance only pays with an "official" diagnosis, not "probable".  Maybe he could put me on steriods if this MRI is negative...?  Anyone else with this problem?

[Lulu54]

Hi and welcome.  Insurance should pay for a diagnosis of CIS - clinically isolated syndrome - to be treated with drugs.  It is recognized by the FDA as the right course to take.  Your neurologist can easily make that argument.

I hope if this is MS you get a dx soon and start therapy.  Good luck with this next round of tests.

Lulu

[JaneK1975]

I don't have any sage advice for dealing with the docs, but wanted to send well wishes. I was in limboland for a brief time, and I remember that it was not a fun place to be. Sorry also about the headaches! I have migraines too, and they can be totally debilitating.

Here's to hoping you get some answers soon.

- J

[jensequitur]

I think a lot of people on this forum have the same problem - stuck in limbo without concrete test results to point toward a diagnosis.

Since you're getting another MRI, make sure it's a 3T - it'll be a higher resolution image, and will get more information.