Waiting game

[Azlemed]

Just curious as to how long the wait for diagnosis was? I had a CIS in May 2013, a few MRI since then, and now a new neuro.

I was told by him it's not MS because of my pain levels, I have daily headaches, which may be because of all the pain relief I take. I have now stopped all pain meds but am allowed Diclofenac.

My GP says not to rule out MS as I now have burning sensation in my right foot and muscles issues ( feels tight, sore, hard to move) he has prescribed orphenadrine to help this.

So am patiently waiting again and just wondering what others have done etc

[SNOOPY]

Hi Azlemed,

Sorry to hear you still don't have answers. Without meeting the criteria for diagnosing MS it is very difficult and sometimes impossible to receive a diagnosis.

Information about diagnosing MS:
http://www.msif.org/about-ms/diagnosing-ms/

I see Orphenadrine is a muscle relaxer, hopefully that will help the pain you experience.

I really don't have any experience with "limbo." In my case I went from Primary Care Physician --- Neurologist --- testing --- diagnosis. All of that was accomplished in 3 months.

Take care

[jreagan70]

Hi Azlemed:

I'm sorry you're in the position you're in. I'm completely baffled by BOTH your neurologist and your GP, who both apparently think that a determination of MS can be made based only on the amount of pain you're having.

Pain is NOT a determiner. MS is determined by your MRIs and clinical exam, and other supporting tests like evoked potentials and LP.

I'm even having some trouble believing that what you had in May 2013 was CIS. CIS requires that ALL signs and symptoms are consistent with MS, and the only thing that prevents CIS from being MS is the lack of a second attack. It has nothing to do with pain. If your doctors can't say that ALL your signs and symptoms were already consistent with MS back in 2013, then what you had didn't meet the criteria for CIS, meaning that what happened in 2013 was NOT CIS.

It was or it wasn't. CIS requires that the signs and symptoms are consistent with a demyelinating event. Pain is nonspecific and can't be used as a determiner in CIS or MS. Your docs can't be pretending about CIS/MS 2 years later by using pain as a determiner. Neither your neurologist(s) nor GP seems to have a clue about what they're talking about. No wonder you're frustrated in limbo land!

Is there anywhere else you can go to find a neurologist, and even a GP, who has a clue?

[Azlemed]

This is a new neurologist, he's a 2 hr drive from here. My GP is looking at the whole picture, he sees all the symptoms I have and says pain is just a part of it.

This was my first neuro visit in over a year so I am not expecting a diagnosis till he looks at my MRIs, and the neck X-ray he wants done. I have started writing down symptoms again so that I have a record of them for my next visit

[jreagan70]

This is a new neurologist, he's a 2 hr drive from here. ... This was my first neuro visit in over a year so I am not expecting a diagnosis till he looks at my MRIs, and the neck X-ray he wants done.

Ah, you didn't say that in your post. That's very different. I hope a fresh look at some new images gives you some information you can use to get out of limbo land and on with your life.

[Azlemed]

Thanks, it's been a long process so far with quite a few probable diagnosis, but nothing concrete yet.

I am hoping that this new neuro will look at things differently than my previous one who dismissed me because I have anxiety and depression(well controlled by medication)

I have had 3 MRI, EEG, LP done, new dr says we will probably do another LP to check pressure and o bands.

Fingers crossed we might get some answers eventually