very frustrated

[susie]

this is kinda of a long story but i will try to make it as short as possible. my husb,53 yrs old now, was diagnosed with "POSSIBLE ALS" in 2005. he had muscle atrohy in his right shoulder at that time, along with fatigue, tingling, muscle spasms, fasiculations, abnormal emg, electric shock like feelings all in his extremities. in 2007 stayed in hosp 2 wks for a simple appendix removal because he could not breath after he the anesthesia. he was bitten by a tick some time ago-not sure when. we seen an infectious disease dr in feb 2008 who gave him 28 days iv rocephin and every thing seemed to stablize until dec 2010. everything started again(with a vengance) except now the muscle atrophy is in his right thigh, butt, and calf-all the atrophy took place since sept 2011. he has had severe muscle spasms that has made him unable to walk, the dr changed his muscle relaxers and he can walk again. he now is twitching all over his body. he has congestion, hoarseness, difficulty swallowing and maybe trouble breathing (not sure if this is just anxiety) but anyway has had several blood test, mri's, muscle biopsy, nerve biopsy, myelograms and all are normal. been to mayo clinic in florida (don't anyone go there-it was a joke) now to my point--his neurologist now says that he don't know what is wrong with him! went on justask last night and the dr who answered me was an oncologist but said he thinks he has als. can anyone out there enlighten me. we are so very frustrated. thanks ya'll

 

[Ms. Pie]

I'd get a new Neurologist if I were you. Wish I could help!

 

[momap53]

I saw Dr. Blaylock at Mayo in Jacksonville for my second opinion. His diagnosis of ALS was again confirmed when I was admitted to my current ALS Clinic in SE GA.

 

[susie]

ms pie, you were diagnosed in 2010? do you think from the symptoms described that he has als? we have tried to go to 2 different neurologist in our area and they say oh if your current neurologist can't help we can't either! we are christians and we are not sure of the diagnosis but we do believe in devine intervention and miracles. thank you for your reply

 

[Ms. Pie]

Since everyone is different I can't say. His symptoms are nothing like mine though. You need to see a neurologist that has a good amount of experience with ALS.

 

[susie]

what kinda of symptoms do you have? if you don't mind sharing. thanks

 

[susanf]

I go to USF ALS center in Tampa

 

[patricia1]

I think if the antibiotic helped him thats a sign away from als. Als doesn't go in remission ,lymes does and may be acting up. You should see a infectious disease doctor and a spinal tap to see if lymes back. Or if you really think its als see a neurologist specialist in als

Pat

 

[ktmj]

Gosh, sorry you had such a bad experience at Mayo-JAX - mine there (for a different reason) was much better. Does not sound like ALS but you need a really good neuromuscular specialist to figure this out. Hopefully all the FL folks can point you in the right direction. Best wishes!