15 Months of Unexplained Symptoms

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qb2y

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Wondering what you all think. I've been at this for about 15 months. Usuall presentation with calf twitching then widespread. EMG x 2 about 2 months in were negative, MRI x 2 negative. No obvious clinical weakness just the percieved. I recently saw my neuro who has referred me to a NMD specialist at a tertiary center. I was initally ok with this thinking I would get some answers but now am having second thoughts. I'm kind of at the point that I don't really want to know if something was actually wrong. I'd almost rather just try to live my life. I still have good and bad days with the anxiety and fear crap. What do you guys think???????

Patrick...
 
Hi Patrick

I just wondered why your neuro wants to send you to an NMD specialist after all this time? You've had 2 negative EMG's and no weakness so I would say there's no need to see anyone else. Why put yourself through unnecessary anxiety? I think you're right to just want to accept your situation and get on with things.
 
I think it's more for my own peace of mind, perhaps. He's just trying to find answers that he doesn't have. I normally think this is good but with this frikken thing I don't know if more is actually better, maybe less is better...I don't know...
 
Patrick

I say go. It will ease your mind. If you don't go you, and you continue to have symptoms, which you will (that is how BFS works)..I am convinced it doesn't go away. You will doubt yourself and question yourself whether you should go. I think you should go, put all your symptoms straight on the table. Have him give you the clean bill of health and you will be able to live your life much fuller. It somehow makes a difference when a MND neurologist examines you vs a regular neurologist. At least for me it did, but again I am insanely obsessive.

P.S. For sure, it can't hurt

Terri
 
Hi~~
I always wonder if I haven't had enough tests, actually I'm sure I haven't compared to most on this board. It seems like, and maybe you guys can correct me if I'm wrong, that most of you have had at least one EMG. I have mostly the same symptoms as everyone else, the twitching, weakness in some spots now and then, stiffness, etc...but my neuro only had me do the in-office exam, some bloodwork, and a sleep study that didn't work out too well. He wants me to do that one again. Anyway, he basically told me that ALS is more of a wait and see thing anyway (he said that on my first appointment)...and then on my second appointment, after seeing my bloodwork, he put that I guess together with how I looked maybe or whatever, and said he was pretty sure it wasn't anything like ALS, and wanted to look more into Metabolic syndrome, or sleep disorders. Anyway, I'm just wondering about the amount of testing, do most of you have to really push to get the EMG? I'm not saying I really want it, just wanted to know if it's the norm to get one with these symptoms, and wondering if my neuro is not being aggressive enough. His attitude was also, kind of like what would you do anyway? He says there is no treatment for it, so just to wait.
By the way, Terri Hill, if you happen to read this, I don't know if you sent me a private message or not, but my e-mail indicated that I had one from this site, and once again, when I click on the links too see my message, there is nothing there. I don't know if my computer is messing up, or what, but I am not able to see anything, and I wanted to let you know, in case it was you that sent the message. Let me know if you get a chance. Talk to you guys soon, Val
 
Val, it does seem like most people on here have had an EMG - but I haven't! Haven't even seen a neuro, so I guess that's one down from you :) . I saw my GP who also said it was a wait and see thing, but he wasn't concerned enough to refer me on. Just like your neuro, my GP had the attitude of "why would you want to know as there's no treatment?". Not very helpful!
 

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