Back again - what now?

[infiniti23]

Hi all - with my last post, I mentioned that my rheumatologist was zeroing in on an RA diagnosis due to the high inflammatory markers in my blood and a very high Anti-CCP value, which is very specific for RA.

Well, she ordered an MRI on my elbow and a repeat of the blood work, and on a followup visit, she adamantly refused to diagnose/treat for RA since I only have large joint involvement and no inflammation showing on MRI. She then referred me to UAB's neuromuscular clinic for another neurological consult.

I went to the visit at UAB - he asked me alot of questions and did a neuro exam. He rechecked my CK and aldolase which were normal. I asked him about ALS and he said I show no clinical signs of ALS or other neuro disorder and I have the same chances of having it as he does. This makes complete sense to me.

So what the hell do I do now? I've seen three neuros, all say no ALS. I have some vague inflammatory markers in my bloodwork

I could deal with my symptoms, especially the joint pain, but in the last three weaks, I have developed rapidly progressing symmterical, quadrilateral weakness in the proximal muscles and my tongue seems to be hitting my teeth on right side when talking. I don't seem to notice anything in my feet/hands. But it is taking considerable effort for me to get around and move about during my day. Need a reality check - I wouldn't think this is a typical presentation of ALS, but I am at my wits end.

Essentially, no one will treat me for anything and I am considering treating myself with high dose steroids. Just don't know what to do anymore.

 

[Nikki J]

Three neurologists agree you do not have neurological disease. You apparently have some inflammatory process. I would ask the rheumatologist what next. If you do not get a satisfactory answer get a second opinion from another rheumatologist.

 

[Atsugi]

This is not a general health forum, Infiniti23.

 

[GregK]

Infiniti, what Atsugi means is that we are familiar with MND,, for anything else (which is where you are) you'll have to seek help elsewhere, not in this forum.

 

[lgelb]

Infiniti,
Please don't treat yourself w/ high-dose steroids, as you could easily make your problems worse. They are generally reserved for flares or severe disability in established RA, as their side effects are considerable. If you really have RA, they are not first line. Anti-CCP antibodies can be present in RA with negative imaging, so your first rheum is not au courant and you should seek another. However, there are other diagnostic criteria for RA of which you should be aware as well, and I don't know what your other blood work showed. All in all, though, you are in the wrong place, thankfully, and there are more appropriate forums for you to seek out.

Best of luck.