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screwedagain

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OK, I'm a little p*ssed. Had my follow-up EMG with the quack at the ALS clinic, and he spent all of 10 minutes (I am serious - that's it) testing me, then declares that I am fine and can just go live my life. I am perfectly willing to do this, but wtf? He couldn't have been more dismissive of the fact that I can't hold a !#$%@! fork, can't hold a baby for more than 3 minutes...apparently it's not his department. He didn't offer any suggestions as to what might be wrong. When I was waiting, I swiped my chart and read in there that I have Hoffman's sign, and Babinski in my right foot...combined with my hyperreflexia, I'm fine? There's nothing else that it could be? There's nobody else I should go see? He made no suggestions, shook my hand, and left the room.

So now I have one neuro who says I have MND, and another that says, oh, you're fine, just go on and live your life with a hand that doesn't work for some reason.

So now I'm glad that I didn't get the bad diagnosis, but now what the hell do I do?
 

ltr

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Well, Jeff, that was my exact experience with Upstate Medical Center. The doctor I saw grabbed his belly fat, jumped around the room and said "people change, deal with it, I did". Unbelievable.

What I did was make an immediate appointment with Strong Neuromuscular clinic, which is only about 1 1/2 hours from you. They diagnosed me, which is a good start. Here's the link, please call ASAP. Tell them what the other docs have diagnosed you with and you will get right in.

http://stronghealth.com/services/neurology/clinicalservices/neuromuscularctr.cfm
 

screwedagain

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Well, Jeff, that was my exact experience with Upstate Medical Center. The doctor I saw grabbed his belly fat, jumped around the room and said "people change, deal with it, I did". Unbelievable.

What I did was make an immediate appointment with Strong Neuromuscular clinic, which is only about 1 1/2 hours from you. They diagnosed me, which is a good start. Here's the link, please call ASAP. Tell them what the other docs have diagnosed you with and you will get right in.

http://stronghealth.com/services/neurology/clinicalservices/neuromuscularctr.cfm
Thanks for the info. I didn't see anyone with belly fat - apparently I saw the ALS clinic director. Strangely enough, my brother saw some survey in a CNY magazine saying that this doctor is one of the most highly regarded in the area. Uh-huh.

BTW, what were you diagnosed with?
 

ltr

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The doc I saw actually wasn't fat, he just grabbed some.....really ticked me that I drove up there, sick and that's what I got.

Strong did a muscle biopsy and it came back positive for myopathy, specifically polymyositis. Now I am on long term Prednisone and hoping for the best.
 

brooksea

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Jeff,

I just don't understand, sounds like you really have something going on that is not right! Reading all this from Leslie and Jamie and now you, makes me wonder if my husband was diagnosed properly . He was diagnosed immediately and is a year into post diagnosed - still going but struggling. Where is the compassion in this world with these docs?
 

duplinwino

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I feel the same way CJ - it was so "easy" with my husband's diagnosis. I feel horrible for you all that have to endure this crap from the doctors...

Don't give up Jeff.

Ashley
 

screwedagain

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yeah, i'm not giving up. i called the first neuro i saw, and am going to try to get him to send me to strong (apparently my crappy insurance requires the referral).

thanks again to everyone for the encouragement.
 

screwedagain

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Well, Jeff, that was my exact experience with Upstate Medical Center. The doctor I saw grabbed his belly fat, jumped around the room and said "people change, deal with it, I did". Unbelievable.

What I did was make an immediate appointment with Strong Neuromuscular clinic, which is only about 1 1/2 hours from you. They diagnosed me, which is a good start. Here's the link, please call ASAP. Tell them what the other docs have diagnosed you with and you will get right in.

http://stronghealth.com/services/neurology/clinicalservices/neuromuscularctr.cfm
well, just got back from the neuro and took your advice - i'm waiting for strong memorial to contact me now. thanks for the tip......hopefully i'll receive better treatment there. it's nice to know, though, that i wasn't the only one that was treated like crap at upstate...
 

ZenArcher

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If that is a MDA funded ALS clinic I would send the specifics to the MDA. If not find the email for the hospital board of directors and send them your experiences. Better yet, do both. The guy at the 7-11 gets to be an ass every now and then; not the doctor to a patient worried about terminal illness. If you call him to task now for his behavior you may save someone else the pain and given the fact that it has happened at least twice let him have it.
 

ltr

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I am so glad that you are going to Strong. I hope you have a good experience and get to the bottom of what is going on with you. They did a muscle biopsy when my other tests were inconclusive. I did write to the coordinator at Upstate and let her know about my visit, but I never heard back from anyone. They never even scheduled my emg and sleep study that the doctor said he was going to order. I will let the MDA know about my visit.
 
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