Brother Rock
Active member
- Joined
- May 6, 2012
- Messages
- 44
- Reason
- DX UMND/PLS
- Diagnosis
- 04/2012
- Country
- US
- State
- IN
- City
- Bloomington
I have had my second opinion and my new doctor says I do not have ALS or PLS. He said I may have a very rare genetic disorder or disease that is hard to detect so it could be a while before something is possibly known.
The plan is as follows. I had more blood taken for more test. If these too come back normal then he wants to do some intricate MRI’s of my neck to look for things that are difficult to see on MRIs so they have to be done on the most modern systems. If the MRIs do not show anything then he will try putting me on steroids for a month or two to see if they relieve the symptoms which will can help pinpoint the problem.
More wait but at lease ALS and PLS are ruled out. So I am back to having no idea what is wrong with me and no one else knows either. But at least this doctor seems challenged to try and figure it out. No other doctor has shown that much interest in my situation before and that makes me feel not so bad.
Thanks to all of you for your kind support you have shown me.
Brother Rock
The plan is as follows. I had more blood taken for more test. If these too come back normal then he wants to do some intricate MRI’s of my neck to look for things that are difficult to see on MRIs so they have to be done on the most modern systems. If the MRIs do not show anything then he will try putting me on steroids for a month or two to see if they relieve the symptoms which will can help pinpoint the problem.
More wait but at lease ALS and PLS are ruled out. So I am back to having no idea what is wrong with me and no one else knows either. But at least this doctor seems challenged to try and figure it out. No other doctor has shown that much interest in my situation before and that makes me feel not so bad.
Thanks to all of you for your kind support you have shown me.
Brother Rock