ALS Neuros in Upstate New York

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lisa1215

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Hi everyone

Has anyone heard anything about the MDA/ALS clinic in Rochester NY? My case is being transferred there and I have a friend here who is a PA who thinks it would be better to travel to a larger clinic outside of Rochester where they see ALS more often. Has anyone found this to be the case that you ended up travelling away from your hometown for an evaluation and a diagnosis? If so- any reccomendations near upstate NY? Thanks for any suggestions!

Another quick question- has anyone had an abnormal EMG (denervated paraspinals, and other limbs) and it ended up being something other than ALS?

Lisa
 

Jamiet

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If it were me, i would go to a large, teaching facility, which is also an ALS Center and MDA approved, JMO. I don't know anything about the clinic you refer, they may be excellent..?

I drive 4 hours to the clinic i go to.

I hope things turn out ok for you. I read your symptoms, it's more likely you have a neuropathy, with the absent reflexes. Neuropathies can cause denervation.

Good luck

rgds,

jamie
 

Al

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Hi Lisa. I think Leslie goes to Rochester. She'll probably jump in here but may be doing exams still.
AL.
 

ltr

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Hi Lisa - I go to the MDA/ALS clinic in Rochester at Strong Memorial Hospital. I see Dr. Stanton and Dr. Sullivan, fellow. It is a teaching facility, so Dr. Sullivan will be leaving in June.

I had an excellent experience at this clinic. My first visit I was there 5 hours and with a doctor all but the lunch hour. They do an EMG/NVC on your first visit no matter how many you have had before, they want their own. This is an excellent clinic and actually I didn't know of one outside of Rochester, at least I didn't find it during my research. But, nonetheless, I think you will be happy with this clinic. They are very thorough and caring with three doctors included in my visit, even the medical director came in. With my "unknown" illness these docs are going to town trying to figure it out. Actually, I go June 6th for a muscle biopsy. Here is the link to their clinic. If you have any other questions, I will be glad to try and help. May I ask where you are from? Good luck. Leslie

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

Al - had graduation Saturday! I made it!
 

Al

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Congratulations. Do we have to call you by some fancy title now?
 

CindyM

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Good job Leslie! You did an very hard thing and unter very trying circumstances. Now you go celebrate, my friend! Cindy
 

ltr

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Thanks Al and Cindy---no fancy name........yet!:-D
 

lisa1215

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Hi Leslie-

Thanks for the info-I am glad to hear such good things about Strong. I have been to the Neuromuscular clinic before, but have not heard anything about the ALS division so I feel confident now. Good luck with your biopsy on the 6th, I hope it turns out well.. Also- congrats on your graduation!:smile: Where did you graduate from? I am from Rochester myself..

Lisa
 

ltr

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Wow, I'm in Elmira, so we're only about 2 hours away (1 1/2 on my good days!). I just graduated from Mansfield University with a double degree - Mass Communication and Journalism. Haven't started on the job search yet, just kind of waiting to see what's going to happen with the biopsy and my health. I'm one of those "older" students, so my job search should be interesting! Well, since I come that way periodically, if there is anything I can ever do to help you please don't hesitate to ask. I will even drive to Rochester if you ever need. Sometimes I feel bad that I can't help some people on the forum who need it, so it's nice to know someone is close enough that I can if the time ever arises. But, I hope your health improves. Keep in touch with us. Leslie
 

Jamiet

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Leslie....

Is that why you talk so much...lol....just picking....

CONGRATS on your graduation... You have made an accomplishment, in which, no one, no disease or anything can take that away from you!

You know, your looking for a job, you should look to an organization to be a journalist for neuromuscular disorders! Nothing like one who suffers to pass the message!

Take care, keep in touch ok....

We'll speak before that biopsy...

Rgds,

Jamie
 

ltr

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Have I ever told you guys how great you are?! Thanks for all the compliments and suggestions.

Jamie - when I was a little girl my family referred to me as "Chatty Cathy" after a talking doll that went on and on and on!

The funny thing about the degree I received - I left the hospital because I began a stage of my life where I felt very sad for the patients. I thought I could go into writing to help people through research and making things, even thoughts, available. I could see myself advocating for any of the things Annmarie has mentioned. Maybe me becoming ill was a sign....Have a great weekend! Leslie
 

Mark

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Lisa,

I am originally from Rochester (i.e., lived there a little over 30 years before moving to Arizona) and trained at Strong. As far as I know their neurology department is solid. The one neurologist I know well is Dr. Richard Barbano. However, I am not sure if he specializes in neuromuscular diseases but is certainly knowledgeable in this area. I've corresponded with him about my situation and previously, while living there saw him for headaches. As you probably know Strong is a university hospital with training programs in neurology and other medical specialties and as far as I know has an excellent reputation.

Good luck,



Mark
 

lisa1215

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Leslie- Congratulations- what an accomplishment! And you are close! Likewise- if you are ever in the area and need a friendly ear, and maybe a bite to eat after an appointment, please let me know. Just PM me anytime you are in the area! It sounds like we have some similar symptoms going on. I also decided to make a career change last year from auditing and I just finished my first year of nursing school. This whole crap has made me feel like I need to reconsider my career choice, but I have decided to stick it out until I know for sure what is going on. I never would have suspected ALS until the EMG I had, so for the time being I have chosen the route of complete denial until someone tells me otherwise:) Anyhoo- thanks again for the info on Strong and good luck on the 6th..

Mark- thank you too- you must miss the weather here and all that goes with it, like brushing off your car every day for a month straight:-D Take care and I wish you well..

Lisa
 
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