31 years old, could this be bulbar- UPDATE

[CB1977]

Hey everyone, this is CB in Ohio. I went to a top Rheumatologist today at OSU. Bad news is , he does not think that what is wrong with me is auto-immune and said it is not Fibromyalgia for sure. I told him I was going to see an OSU Neuro on Monday and he said he thinks that is the right place for me but he will do everything to absoluitly rule out auto-immune.

He sat and talked with me for a good 45 minutes. He feels that I have something going on that is musclular but said that it doesnt fit autoimmune.

I am starting to get scared at this point because my arm is feeling weak and I still have some strange breathing issues that come and go in addition to all of my former symptoms. I hope that the neuro can tell me something...anything. Anyway, I just wanted to give an update in case anyone is following my case.

Everytime I go to a doctor and he tells me a test is negative, I feel like I am one step closer to ALS.

Have a good day everyone.


CB in Ohio

 

[Al]

Of course, quite a few are following your case. Sorry the news wasn't better but don't give up hope yet. There are lots that could be muscular that aren't ALS.

AL.

 

[CB1977]

Thanks Al

CB in Ohio

 

[rose]

CB, don't let yourself get discouraged! True, the news could have been better, but at least you've got a doctor steering you in the direction you should be going. In the interim of now and Monday, it would be a good idea to get any and all test results, etc, and to try to write out a sequence of events as you experienced them. There might also be a doctor at OSU that specializes in dry eye, by the way, (Hopkins has one) it would be worth the effort to see if the rheumatologist's office could set up for you to be seen there as well.

Please let us know how it goes on Monday,

take care

 

[BethU]

Hey, CB ... I'm sorry you didn't get the answer we all hoped you'd get, but it really sounds like you are in good hands. That makes SUCH a difference . . . so many of us have had to plod through appointments with doctors who are unresponsive or just plain uninterested. Sounds like you've hit the gold standard.

Good luck on Monday.

BethU