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ltr

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Hi everybody

I thought I would share my very good experience at the MDA ALS clinic in Rochester, NY on Thursday.

My appt lasted from 9:30 am until 2:30 pm with a lunch break from 11-12! I had a doctor entering the neuromuscular specialty and two specialists. The fellow (meaning finished med school, finished interning, finished everything and now finishing his specialty, neuromuscular) spent every minute except lunch with me. The other two docs checked in from time to time and one of them even repeated the exam.

My EMG was clean! Great news! The only negatives were brisk eye reflex (something I had never heard of). The doc mentioned it as they kept shutting off the lights and doing it over. No jaw reflex (have no idea what that means as far as diagnosing someone and was too happy to ask).

At the end I was given medication for neuropathy and an appt. to come back in 6 weeks. I think they want to recheck the eye reflexes. They did note the muscle spasms. I had an excruciating cramp when they inserted the needle into my calf muscle. It took a good ten minutes to calm it down. I had a 2 1/2 hour EMG/NCV because they checked my "channels." Someone on this forum, I think it was Conrad, mentioned Isaac's syndrome to me and by gosh that was what the doctor was suspicious of. The nerves did not show this, but they are going to check blood tests for it when I go back.

I have never been tazzer gunned, poked and electrocuted so much in my life! But, so far I am happy. I don't have a diagnosis, but I don't think I am going to die from whatever is happening to me. My life is different, it is sick, but it isn't going anywhere as far as I know! And this great group of docs, I really believe, will find out what is going on. What a caring group. I hope all of you will find docs like this sometime during your illnesses. I hope these docs see it through and really find what is going on with me, not only so I can get treated, but so none of my kids ever have to suffer from whatever it is. Leslie
 

paula-jane

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that is great news. It is good to know that your experiences with the doctors were positive. We too have been blessed with a wonderful ALS clinic and fabulous doctors. It truly gives you some peace of mind (even if the news is not great). I wish you luck as you continue to learn how to cope and deal with your illness. Cheers!
paula
 

Al

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Good news Leslie. I just love it when someone has some encouraging news and shares it with us. It makes it all worthwhile.
AL.
 

Paty

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Hi Leslie:

I am so glad for you, congratulations, I wish we had thisMD ALS Centers in my country.


Paty :-D
 

ltr

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Thanks for all your positive thoughts! I hope these docs keep up the trend.
 

Jamiet

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LTR,

It was me who was previously thought to have Isaac's. Hopefully, that's what you have, because if it is, they should be giving you Tegretol (Seizuire Meds) and it should go away. Your twitches should look like "worms" rather than "pops". You should have "myokomia" and when you grip a pencil or something in the palm of your hand really tight, it should be difficult to open your hand quickly.

I wish you the best of luck and it sounds as if you have a good doc.

There is a very specalized blood test they do for Isaacs, something like a potassium gated something.... I had it and it takes a few weeks to come back.

The seizure meds should help, keep us informed.

Rgds,

Jamie
 

ltr

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Hi Jamie,

Thank you so much, I'm sorry I couldn't remember. I didn't even have to mention thinking about Isaac's and the doc said it. How good are you! As far as the pencil grip, I do have that. And when I lay in bed or sit on the couch, I get extremely stiff, sore, cramped, fascics (they began as pops, but then as I looked at them more they were worms) and feel like I could start to groan. The way he checked, though, was to have me hold my hand out, fingers out and ten times quickly make a fist, then put my fingers out. I could do this, so I think he was iffy about it. He told me there was a way to check channels on the NCV, which they did, that's why mine took 2 1/2 hours! After they did the test, he came in the room with an rx for Neurontin. I read the leaflet that came with it and it says for seizures. I took one last night and slept through the night! I am hoping when I go back they will do the blood test to confirm whether this is it or not. I think it is. My grandmother had these symptoms and my 9-year-old can't stand in church, sitting for a long time causes his back and neck to stiffen and hurt.

Anyway, I thank you soooo much for helping me with this. Your research was right on the money. My son has a neuro because he has parasomnia, so I am calling him today and getting him tested.

I hope this is what you have, too Jamie. It's something we can live with. Please be sure to let me know. Leslie
 
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