ALS, the only thing not ruled out?

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What was his reason for not doing the EMG? What did the OTHER 3 EMGs show? Something not consistent with ALS? I'm a bit confused?
 
notme: I am confused too. He said he would do one in three months then he will see if it is worse. This is BS in my opinion. He said there is chronic damage, neuro changes, etc in my emg but from his physical examination he doesn't think I have an MND. When we first arrived his daughter called his cell and he talked to her longer than us about some sports she was involved with. He told me to take muscle relaxers, symbolta (sp?) and if everything got worse to come back. He told us not to use Igenex lab for Lyme. The second MRI stated on the dang thing: "If Neuro problems persist then it is ALS, MND." I feel like crap. My legs shake like crazy going down stairs or a hill. I have flacs, crawling under the skin, atrophy in my right trap muscle, arm and thigh. Atrophy in my left hand and twiches in fingers. I am in hell day in and day out. I was diagnosed with Parkinsons by two Neuros at one point in my life. I don't think I am getting the proper care and would go elsewhere but my Insurance will not pay for it so I will pretend I am fine. My faith is keeping me somewhat together. I need to get copies of all the work done to answer your question more clearly. This is part of the problem. I am being told certain things by several different Doctors and residents. Any help would be appreciated. Thanks.
 
Oh yeah, he also said the muscle biopsy would show the ALS. I read elsewhere muscle bio is used to rule out other issues and is not used for ALS. At the end of the day I just want to know what the heck is wrong with me. The DAT showed no Parkinsons. If I didn't have that scan I would still have Parkinsons. Now I don't know what the hell I have with new atrophy, muscle weakness and flacs.
 
Where did you go to get the "specialist's" opinion? (Forgive me if you have already posted that.) I don't think you have ALS, but I'm not a doc and of course no one can be d x d over the net. If you feel you really do have the symptoms of ALS, contact the MDA division for ALS in your area and ask them if they will pay for an exam from an ALS specialist at the center of your choice. The MDA paid for an appointment after my husband had no insurance, due to having to leave his job.

I can tell you that we never encountered a doc that would be that unprofessional, especially about something as serious as ALS.
 
You are correct. Muscle biopsy does not show ALS. It rules it out! Where did you go to have your testing, for God's sake?
 
brooksea: Yes this was the ALS specialist at AGH in Pittsburgh, PA. Said with complete confidence that it would show up on the Muscle Biop. When we first arrived and took a call from his daughter about a sports event then even left the room to talk with her made me feel like I wanted to get up and run out of the room. He then told me to take off my shirt and pants to look at the atrophy. He looked up and down, poked me with a pin, moved my arms and said 99% no als. So, that's good news but what irritated me was his diagnosis of fibromaliga (sp?) and the symbotla (sp?).

I am not taking this med. In fact, I stopped all meds except motrin 800. This started two years ago and seems to be gradually getting worse with no diagnosis at this point. A nuero at the hospital said I had symptoms that could lead to ALS? What the heck does that mean? One Doctor said it might be pinched neerves in my back but I had an MRI which showed nothing.

My wife thinks I should go to another doctor afor an emg but I am done for now. My thoughts are whatever this is will either get worse or better. Hoping for the latter. But I see this possibly getting worse and when I finally arrrive at the point where it is in their face they will then say "oh yes that's it". I give up and will try to live the best I can with this funk.

sadiemae: I am on the west side of the state but may look into that if my condition worsens. Thanks.
 
I actually read an article that said that in ALS there is something specific seen on a muscle biopsy--can't remember the site--but it was on ALS site or NIH, I'm almost sure.

Either way--I'd see a new doctor. Really. If it's NOT ALS, then many, many other things are Treatable, and it's criminal not to treat something if it's fixable.

There are very specific things also seen in an EMG with ALS--signs that the person may not see. I'd get the EMG results and ask Wright for his opinion personally.

I'm sorry you're getting the run around. I'd look into that lab where you're having your blood sent. They are being investigated by the FDA for their high rate of positives. I posted an article on it a few months ago. Not sure which forum I put it on though.
 
Notme: I have been searching on google and did see something like that too in regard to the muscle biopsy. I think it had something with seeing damage to the nerve endings.

I am near cracking up. Today I have those flaciculations in my calfs. My legs feel very strange when I am walking. I am so fatigued. I don't mean to moan and cry about my ailments but I need help! I am in "diagnosis" hell. I mean with 5 Doctors and nothing specific, it's driving me nuts and I feel horrible.

I don't know where to turn but this is affecting my life big time. I am on a downward spiral in regard to my health into the unknown. I would like to have another EMG done by someone who is competent just to make sure then who knows which way I will turn. I am not sure about the Lyme with Igenex. I understand every crackpot wacko suggests them. Nor do I want a misdiagnosis. I already had one of those with the Young Onset Parkinson's.

Sometimes I feel I shouldn't even be on this website bothering anyone. There is something wrong with me. You can see it when you look at me. This is why the last time I saw several Doctors in the hospital they took a piece of my thigh out.

I have yet for someone to call me crazy but I would even take that at this point. Just put me in a padded room and throw away the key. Oh well, I am just frustrated after two years of confusion. Thanks for your help and to everyone else on this board. God bless.
 
Jay, know it sounds cliche to say hang in there but you have to buddy. I can't imagine going through this diagnosis hell for two years. Mine has just been a few months and it's driving me nuts too. I go back to my neuro on Tuesday and fairly certain I'll be getting the full diagnosis then. I've also felt the same way at times about posting on here and feeling bad for wasting all these good folks time. All I can say is if it helps to vent or type up a long email to help get it out of your system feel free to reach out to me anytime.

All the best,

Kenny
 
I totally understand the runaround! It's frustrating and aggravating. Kenny is right though. You have to hang on. I'm in the same boat. Seeing an a l s specialist (finally) on Thurs. 13 years undiagnosed here and slowly getting worse. Last neuro said my weakness was "impressive!" I'm not impressed. Find a competent specialist and I pray you'll get some answers.
 
Yes I wouldn't be impressed either!
 
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I come on this board frequently because I present so much like an ALS patient. I have foot drop and leg drag on my left side. My left hand and arm are completely useless and atrophied, I have terrible spasticity that is painful. I have fasciculations that happen mostly on my weak side (hate them). I had four total body EMG's (no toung, no way). All were basically normal. One had some activity but not enough for ALS. Normal MRI's.

I lived in terror as I was 44 years old and have two young children. I did send my blood to Igenex against my Doctor's wishes and I came back a screaming positive for Lyme Disease. I am not one of those people who believe ALS is Lyme, I just want people who are living in terror as I was at the time to persue any avenue possible.

I am very disabled and not any better or worse after a year of antibiotics so yes, I may live longer but Lyme is (my experience) a very miserable thing to live with. Also, during my search for answers I have found many people have pain with ALS. Spasticity can cause great pain. I also have a frozen shoulder due to no use of my arm and that is some wicked pain. Best of luck to you!

P.S. I belong to MS groups, Lyme Groups, and ALS groups because of my symptoms and you will find no greater bunch of people than the ALS forums. The ALS forums have been the most helpful in there attitudes, helpfulness, and practical advice. Nough said!
 
Thanks Spring, Ed, Ken and Hi.

This is truly a great forum/message board that is out there. I appreciate the feedback and words of encouragement. It looks like I will be seeing another Neurologist at UPMC for another EMG. He wanted this done. This is a different hospital vs. the wizard that blew me off. It has been tough as I am sure it has been for others out there. Those who have been diagnosed or those that wait too. It is much more than my little condition. I feel for you all and truly have compassion for those with this disease. I know something is up with me but am not sure what the heck it is. Even my face is now pulling. My thigh is dropping over my knee cap. I am weak and my legs shake like crazy when I descend stairs. I am trying to keep a 9-5 bank job. Now everyone talks about me behind my back. I am perceived differently now. It is different.

I wish all of you the best. To brave whatever comes and to know there are other souls out there who care and pray for you. I do have faith in Christ and it pulls me through. I know he is near. I believe in redemptive suffering with Christ on the Cross. Hopefully I won't be moderated for throwing my faith in the mix but it has transcended all of this and brought me to a higher plane of possibility beyond the finiteness of this all. GOD Bless you all.
 
Well said Jay. Good luck with your next appt and EMG. I go back to my neurologist this afternoon to get the results of all the other blood work and tests he wanted done. This is the dreaded "make sure you bring your wife" appt so we'll see how it goes and what kind of news I get.

Kenny
 
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