Muscle Specialist Visit Results

[onWidgeon1989]

Today I met with the muscle specialist who was SUPPOSED to do my muscle biopsy today. His PA came in and spent an hour with me doing all kinds of tests. His feeling was that my arm problems were probably carpel tunnel. This diagnosis, although welcome doesn’t explain the cramps in my legs, nor the fasciculation’s.The specialist came in and did a few more tests, and then read my growing file for ten more minutes while I sat there looking pretty pathetic.He told me that doing the biopsy was a piece of cake, that wasn’t the issue. He didn’t want to do it because he wasn’t quite sure that it would give us the answers we needed. He wanted me to go to a THIRD Neuro <big deep sigh> his comment was “the more brains we have on this the better”. He seems to really value the guy he’s referring me to.Reading between the lines – I don’t think he was in agreement with the last Neuro I saw. He wants me to meet with the new guy, and then come back to him. He said at that time HE was going to talk to both of the other Neuro’s. Evidently he completely wrote off the first guy… THEN, he would do a biopsy if that was the best move.SO, that’s me. I’m not sure what to think anymore… I’m frustrated, and maybe just a little sad. I know my symptoms are getting worse, the cramps are worse, the heaviness is worse… now my balance seems to be getting worse when I stand on one foot…. although I still haven’t lost any strength… ACK!!– please insert a dirty word here___________ for me.Thanks for listening.Rob.

 

[paucek.sheldon1]

This might not be the answer you are looking for. But I think you are lucky you got a Dr. who gave a *beep* and was willing to disagree with another doctor.

 

[JoggingCub]

Rob, I certainly understand your frustrations, and am sorry that you are getting passed around. I don't think you should try and read between the lines, its so tough to second guess a neuro, and also probably in all reality the neuro muscle specialist just doesn't know, and they themselves are looking for another opinion. It sucks to not know. It sucks to have to wait. Keep doing the push ups (let yourself know that you are strong), balance issues are caused by so many things, your body has been through so much with the back surgery, and your mind has too, now with this crud weighing on your mind.Best, JoggingCubAlso Rob, what are your reflexes like? Sorry if you wrote this in another post, I can't remember.

 

[onWidgeon1989]

Thank you for the quick replies, they really mean a lot!Although I sound really whiney right now, I am thankful that this new guy seems to be taking charge of the situation, I really am. I don't believe that he agreed with his PA that the feeling in my arms could be an exclusive result of the carpel tunnel. He did mention that this really wasn't the time to consider surgery for that part of the equation...Last night I hit a new high water mark with the pushups - I did five more than I ever have (32). It does provide at least a modicum of relief My reflexes are actually delayed a bit.

 

[AussieSurvivor]

You have catagorically spelt out the reason why we may seek a second opinion. It sounds like this guy is good value and is taking a 'serious' interest in your concerns rather than dismiss it as just 'something unusual that wont kill you' ( that would be so frustrating) He seems very thorough. You have a 'keeper'! I hope you find the answers to the questions you ( and all of us!) have. Keep us postedcheers & good luckRodgerPS good to see you are able to handle all those push ups. I would be battling to do 10!

 

[ionyZarrion]

Hey Rob,Didnt realise until now that you were Rob.Listen man these doctors don't *beep* around.. if they thought you had als they'd say "I think you have als" but im gonna get a 2nd-3rd opinion. Don't fall into the trap of believing that they are hiding information to protect you... they don't do that...They deal with bad news daily.... Id say they just don't know what is going on with you. It could be some atypical known thing or some idiopathic thing.its *beep* hard to balance on one leg by the way...If I stand on one leg and close my eyes I fall within 5seconds sometimes...sometimes I can stand for an indefinite amount of time...maybe years even...sometimes if my eyes are open I still find it tough...sometimes not... my point is that its all meaningless. that feet together eyes closed thing..what is it romberg... they make ya do is the true test of pathological balance problems...simples... Keep on keeping on my man,You are in my prayers.Are your twitches constant by the by?Widespread?localised?small?big?any pain?

 

[AllGoodHere]

Just a summary about my experience with the neuros, specialists, etc. I was on the neuro-go-round for quite a while and if it was up to them I'd still be on it, going for tests, seeing this other super-specialist the best in the US, etc. I appreciated their concern and attention to my symptoms, its just that it was all for nothing and after a year i simply got off the ride. They knew whatever i had wasn't going to kill me but were curious of its cause and if it could be tested for, etc. It took me looking over the year's tests and medical receipts and I thought 'This is crazy! we aren't anywhere closer than we were all these $$$$$ ago!' Even if you are not there yet (and for sure I wasn't either at the start) it is just something to keep in mind. One thing I started doing (half way through - probably a bit late) was asking them to explain the basis for the test and why I need it. While this upset some of the high-and-mighties it did help them to think through it - slowed things down a bit so they weren't rushing off to the next patient passing you on to the clinic for test X. Good luck with it all.

 

[onWidgeon1989]

Thanks again for all of your responses!Today was weird... MOST of my major joints hurt - alot - My jaw, elbows, hips, knees, shoulders, fingers... each of them has hurt in the past few months, but they ALL hurt today... I'm not sure if its related or not... what are your thoughts?To answer your question - my fasiculations are pretty constant in my legs, I've come to ignore them most of the time. My shoulders started twitching about a month ago - and thats a few times a day. My forearms started twitching a few days ago, but it's infrequent. My butt & back will twitch from time to time...I didn't think to close my eyes before - I tried tonight and couldn't do it for more than a second...Peace.Rob.

 

[MovingLess]

I am stiff and sore all of the time. Don't know if that has anything to do with this or not... maybe I'm just getting older. I really think my back pain has alot to do with posture. I have a desk job and catch myself slouching all of the time. I am no doctor but I have read everything that you have posted and it sure appears to me to be classic symptoms that we all share. I'm not one to give advice because I still struggle with the feeling that something sinister lurks in my body. I do know this, when I go to a football game or spend time with my kids etc... I don't notice my sypmtoms AT ALL. Chin up.