It's been awhile....still having issues....still undiagnosed

[gigi1180]

I haven't been around in a good long while, honestly told myself to stop looking for something. To really see if it's all "just in my head" and to see if symptoms go away suddenly as they 1st appeared about 3-4 years ago.
I see my neurologist every now and again...mainly due to headaches. I do mention random symptoms that I get, like the gripping pain around upper torso, tremors that I feel, tingling sensations. Comes back to "migraines can cause these symptoms."
Which I guess may be true, but it just doesn't happen when I have a headache everytime.
Right now I'm dealing with my gripping upper torso pain and leg cramping and jerking, but NO headache.
I've had 2 MRI's and LP between 2-3 years. Going in for another visit to see what I'll hear now. Just frustrated.

[Teekybird]

Just wondering...

Is your neuro an MS Specializing Neurologist or just a regular neurologist?

It can make a huge difference in diagnosing and treatment.

My recommendation is to see an MS Specialist if you are not. If you are, I am sorry for the frustration.

Also, the MRI's that you are getting are done by MS protocol? You should have contrast and no contrast?

[gigi1180]

My neurologist isn't a MS Specialist, but he does treat patients with MS. I actually tried to find a neuro that specializes in MS, but they said they wouldn't see me unless had a clinical diagnosis.

The last MRI I did was with contrast about 1.5yrs ago.
My neuro did mention that I could have MS, but sometimes it just can take a while to diagnose. It's hard to change neurologists, especially because I really like him. He's the 3rd neurologist I've seen. Initial neurologist was just when admitted to hospital the 1st time with worst headache and numbness. After, I saw a neurologist for about a year, but then found this last one and have been going to him for about 2 years now.
I keep telling myself to just be patient....which is just really hard at times.

[Teekybird]

I'm sorry.

I don't have the torso pain or the leg jerking (as of yet, knock on wood).

I have been told that for something to be considered an actual "MS flareup" (episode) it needs to be present for 24 hours. (I do have leg pain at night sometimes that wakes me up and cramping in the legs--usually at night and sometimes when I first wake up). However, I have been told those things are just "Pseudo flare ups." I'm not quite sure how to understand that really. I feel like they are symptoms that I pretty actively am living with, that seem to be part of the MS. But, I'm not sure if they are being considered as part of MS by the docs or not.

I agree with you. Finding a good doctor is hard in general. Finding someone who knows what's going on with MS seems to be even harder. Good luck with everything.