Strong Memorial Appt

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screwedagain

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I tried sending this to your private mailbox Leslie (my first attempt at doing this), but it didn't work...something about it being full or something...but I haven't posted in a while, so I thought I might as well pop in and say "hi" to everyone...

My appointment at Strong is Wednesday (thanks again for the tip Leslie). I'm seeing Dr. Rabi Tawil - does he sound familiar? Who did you see there?

My appointment is at 10:00, with yet another !#$!& EMG scheduled for 1:00. This will be #4. At what point do I say "hey guys, obviously the EMG's aren't telling you anything - how about we do a biopsy?" Anyway...hopefully they will be more thorough than the jack*ss at Upstate.

BTW, has anybody heard from annmarie lately? I was thinking about her the other day.

Thanks again...
Jeff
 

ltr

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Hi Jeff, I will be thinking about you on Wed. so let us know how things go. Dr. Tawil, I believe is in charge. I saw Dr. Stanton who switched me to Dr. Ciafaloni after my biopsy results. I received a letter from Strong that the neuromuscular clinic has moved, so make sure you have the updated info! Also, don't let them skimp on the EMG. Mine from there didn't show anything either, but yet the biopsy was positive. Then my next EMG was positive. The reason it was negative, I think, is because the resident who did it only did 2 needle sticks and did not have me move my muscles at all. I know you will get more out of this visit than you did at Upstate....By the way, how have you been feeling and have your symptoms changed any? Good luck Wed. ~Leslie
 

screwedagain

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I hope you are right about tomorrow - but based on my experience with doctors so far, I can only count myself as "cautiously" optimisitc...

I've been feeling about the same. My left hand seems to be stiff now, which stinks because it's the only one that works. My joints are now popping constantly, too, especially in the morning. What's even worse is my newest source of anxiety - I'm graduating next month, and am going to lose my health insurance in January. I can take the COBRA at $350/month, but I'm not sure how I'm going to pay for that.

You had 2 EMGs at Strong? God, I hope that doesn't happen to me - I'm sick of EMGs, and they always seem to show something different (which makes one wonder what the point is in doing them). How much time passed between your initial visit and the biopsy? As unpleasant as it sounds, at this point I think I would prefer to go through that torture than wait another 3 months for another appointment for yet another EMG.

How have you been feeling lately, Leslie?

Jeff
 

ltr

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My illness began in my 3rd year of college....though I am an older graduate! So, I know how worried you are about graduating and not having resources. I have had to go on disability, but I still have faith I will be able to go to work and make a decent living. Maybe you should think about that and that will also give you health care coverage.

After my EMG it was the next visit that the doc said let's do a biopsy, so probably about 6 weeks. I was definitely willing to do through that to get an answer. Paul Twydell did mine and was great, though I was a little worried about him using the Lidocaine because most info I read about biopsies said the muscle should no be anesthetized. I go to Hopkins next month so I will see what they say about that biopsy.

I have my good days and bad days and have lost all my muscle tone, but I don't feel any weaker than before. I hope that is real!

I wish you the best of luck tomorrow and let us know how it goes.
 

mamaoftwo

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Leslie - tried to pm you

Your message box is full.
 

ltr

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I cleared that up!

Jeff, good luck today and please let us know how it goes. I am praying for something treatable.
 

Kevinski

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Emg tests

I am up in Calgary Canada,from what I am hearing from down south I am glad I live in Canada.I had 3 emg tests along with nerve conduction tests,the neurologist at the Foothills Hospital spent 4 hrs on every test I had before he finally gave me the bad news unfortunatly.But he was very thourough,with every test .So I feel I have had good medical care.I feel for the people in the US ,something has to change with the health care system there.Ours in Canada is not perfect ,but at least we do not have to pay for tests if you have something seriously wrong.Take care to all...Kev
 

screwedagain

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Well, I am a bit more impressed with Strong than I was with Upstate (but not much). They were, I must say, very thorough (but not very personable).

I went in this morning, and got an exam from one of the fellows, followed by a quick exam by the attending. Basically, he said that it doesn't look like whatever I have is neuromuscular in nature (good news), and that I should go back to my primary care doctor and see about a referral to a rheumatologist (I have no idea what this is). He said that the EMG would show definitively what is going on, and if it is normal then we can check the box for "not neuromuscular."

Apparently, the EMG was normal. They went through and did their things, and then checked the specific muscles that my original neurologist found abnormalities in, and they found none. As for the twitching, brisk reflexes, and troubles with my hand and inability to hold a baby for more than 2 minutes - well, they don't know about that, other than the twitching is benign, and didn't seem to care much. At this point I was pretty pissed off, and I got a little porky with them - I bluntly asked the guy, "well, where the hell do I go now?" He said that he didn't know, and that maybe I should try the Mayo Clinic. At that point, I thanked him for his time and got up and left.

I'm a bit more confident in this place than the last one, if only because they seemed to be a bit more thorough with the EMG. Other than that, in terms of finding out what is actually wrong with me - they couldn't seem to care less. So that's that. Now I guess my choices are to ignore it, or go see a rheumatologist.

Thanks for the positive thoughts everyone -

Jeff
 

ltr

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OMG Jeff....that is a lot of the way it went for me. My first doc, Dr. Stanton, was very caring. After my normal EMG he went the extra mile and did a muscle biopsy. Thank God because that showed my illness even though everything else that should have been positive was negative. Then he sent me "across the hall" to a different doc that handled my illness. There is where I encountered the very uncaring attitude of "here's a prescription of steroids. If this doesn't work I don't know what else we can do for you. And your rheumatologist should take care of you". But, they got to the bottom of my problem anyway.

Jeff, please get to a rheumatologist. They are probably saying that you have an autoimmune problem causing your symptoms. This is good news because they are treatable, but any damage caused from the illness usually cannot be reversed. My polymyositis is probably caused from an autoimmune problem. I cannot understand why they didn't set you up with one. Rheumos are just as bad as neuros, so it will be a rocky road to diagnose you.

Other than feeling crappy you can at least be happy for the clean emg. Good luck.
 

crystalkk

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Jeff,

I totally understand where you are coming from. Ask a dr now what and they say I don't know?
I am going through the same thing.
Please take the later choice and see a rheumatologist.
You should also look into seeing and enocrinoligist.
Hang in there....
If the mayo clinic is near you try them. I here they are excellent.
I know you said in one of your post your hand is totally weak you can barely hold a fork, do you have atrophy as well?
 

ltr

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Jeff, I forgot to ask....did you mention a muscle biopsy? Dr. Tawil does those and maybe he would be willing to do one for you for diagnostic purposes.
 

screwedagain

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Jeff, I forgot to ask....did you mention a muscle biopsy? Dr. Tawil does those and maybe he would be willing to do one for you for diagnostic purposes.
no, i didn't bother - they seemed to just want to get rid of me, and were pretty insistent that my EMG results (or non-results) were conclusive. besides, i only saw tawil for about 3 minutes. after my EMG, one of the fellows came to talk to me (not tawil), and i just wanted to get out of there anyway. i probably should have though. in any event, i'm dead tired of neurologists.

i called my primary care doc and asked for a referral to a rheumatologist. naturally, he refused until he gets the reports from strong - another 2 weeks probably. it's nice that he appreciates my desire to move quickly, no?

no atrophy on the hand that i can appreciate, which is a good thing i guess!
 

ltr

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Wow, your primary care doc is a hard -ss. I can't believe he needs to see the reports for a lousy referral. Can you make the appt. yourself? I know what you mean about being tired of neuro's. I have polymyositis and though it mimics als....I know I don't have it, but still have to see numerous docs often. I get sick of seeing any of them! Think about the biopsy though, it could be the answer for you.
 
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