Dr Sivak from Mt Sinai NYC

[NotALS!]

Has anyone used Dr Sivak from Mt Sinai hospital in NYC? I saw him for a second opinion on my ALS diagnosis and he just did a physical exam of me with no testing and pronounced that I didn't have ALS.

I've had testing previously but he didn't even look at the results. Can I trust his opinion or is this really unprofessional?

Believe me, I was very happy to hear I didn't have ALS but I've been on antibiotics for 2 years for suspected lyme (which never showed up in blood tests) and I'm still getting weaker.

 

[Ms. Pie]

Hmm...that's weird. I don't know him so can't give an opinion other than saying that's weird. Sorry!

 

[TedH5]

Did he point you in a direction as far as an alternate diagnosis...hopefully something that is treatable?

 

[rose]

I went to him. (and there is also a member who is no longer active, Lovelily, who went to him)

His specialty is myasthenia gravis, but, he has experience in the neuromuscular field that goes beyond just MG. I would definitely not completely discount what he has to say, but, he is known to have a bit of an ego as far as liking to contradict what other neurologists have diagnosed.

I would take it as a sign you need to continue investigating other possible causes. But (IMO) I would not count on it being him that discovers what is wrong with you if its not ALS.

When I saw him, he was the neurologist who performed the EMG on my vocal cords (with my laryngologist, she did the needle work, he and another specialist interpreted the readings as the test was performed) When the test was abnormal, and the findings were indicative of either MND or myasthenia gravis, he halted the test, even though my laryngologist (an ENT) wanted to continue with tensilon to see what result it would have. He was adamant that I did not have myasthenia, despite it being the first time he had ever met me, no exam, etc. My larygnologist brought me out into the hallway to discuss my results, and she was frustrated that he would not continue the testing looking for more signs it could be mysathenia. At the time I did not understand the significance of why she wanted it to be MG, because no one had actually broached the subject of ALS with me, and any form of MND was completely off of my radar. I was actually relieved that testing had finally turned something up. Back then I didn't really understand what the EMG was testing for. "Chronic and active denervation and reinnervation" meant nothing to me.


I remember she ordered blood labs for MG even though he said they were not necessary because he "knew" I didn't have it.

SO, that was my experience with him. (and later testing did prove that I don't have MG, so he was right, but that's beside the point in a way)

He does not have a terrific manner in how he interacts with patients, and can seem arrogant and quick to judge, but he is good, is not incompetent, at least not in my estimation.

I know I've suggested it before, but, please consider going down to Johns Hopkins.

 

[MuonOne]

You might also consider MITSUMOTO, HIROSHI of Columbia University or

ALS Association Greater New York Chapter

which suggests Beth Israel, Robert Wood Johnson and Stony Brook University Hospital have certified ALS centers.

Hyper-reflexia and positive Babinski sign are expected in ALS but their absence may not rule ALS out. A proper ALS diagnosis requires about a year to transpire.

I would suggest second opinions ought to be acquired from an M.D. specialized in the diagnosis issued.

 

[NotALS!]

Thanks for the suggestions. Rose, I appreciate hearing your experience. Right now, I'd love to to just ignore the ALS diagnosis and see if things get worse. I'm treating Grave's disease with Ticosint and the fatigue is already much better. I'm also trying other abx. I have so many other symptoms like numbness in my face, hands and feet, ringing in my ears, crawling sensations under my skin, that don't fit with ALS. I guess I could have both lyme and ALS but I'm still hoping what I have is treatable.

Dr Sivak didn't have any suggestion for getting better. He just didn't know what I had but it wasn't ALS.

 

[Toto's Dorothy]

Not,

I know Rose has told you and I will second this: Johns Hopkins is and has been nuber 1 in the nation for their neurology department for over 20 years. If I were you, I would ask for a referral.

Good luck to you and I hope they keep ALS off the table,

 

[lovelily]

Hi!

Yes, Rose is correct. I did see Dr. Sivak. I was not impressed with him....out side of the size of his ego.

I had come to him with muscle weakness and fatigue. But, he didn't give me the time of day. My Grandfather had passed from the disease, but no diced tomato's.

It turned out through my own doctors, that I have myopathy. It took 3 muscle biopsies to figure out what type. I even have some denervation thrown in the mix. The disease affects my throat with quivering.

I hope you get the answers soon.