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Active member
Jan 29, 2009
Center Moriches
Hi, Thanks for the support and posts. I really appreciate them. I called the neurology department at Stony Brook on Long Island, NY and I explained my symptoms and they fit me in today. I am a mess. I hope I explain things right. It's a one hour evaluation. Can someone tell me what to expect? Any words of wisdom or advice. I am beside myself with worry.

Thank you.
Hey girl, glad they worked you in. Please calm down, if you go in like this, being a women, they are going to blame it on stress. The number one cause of death in women is heart disease and DR'S miss it because they think every thing we have is stress related. I know you will do fine and I am praying for good news, give that kid a hug for me.

I agree with Renee.
I went to my first appt almost a year ago in the start of all this and I was so worried and stressed about it that you could feel it in the room. AND, with that all my sx were then related to stress and anxiety and I was told to go on an anti depressent for twitching and weakness. Good luck today.

All VERY good points!

I am not sure I can stop myself, but I will try my best.
V,also DO NOT mention you think you have a specific disease. It is hard not to I know, but then they automatically assume you are being illogical.
Some of the things you may expect them to do is a clinical evaluation of your reflexes, your walk, speech and manual dexterity (fingers to nose, eyes following the doc's moving finger, etc...).

They will perform strength tests where they will have you resist to pulling and then have you push against them.

They may or may not do an NCV/EMG. I think this is more suited for a 2 hour appointment but I could be wrong. It may depend on what they think of your physical presentation.

And, last but not least, they will probably take blood from you to send to the lab for work-ups.

Thanks. I won't mention a specific disease, good pt. They actually gave me the ALS specialist. I didn't say anything but describe my symptoms. I guess he'll know what he's doing so I am going to trust in that.
I'm happy to learn you will get to see someone today and get the process started. You probably won't get any real answers today, but getting in that quickly to such a good facility is great! Try not to feel too disappointed if you come away not knowing enough, it takes time for testing to be done, and results to be read by the correct people. Good luck and big ((HUGS!))

p.s. I'd suggest steering away from any medical jargon you've picked up, and just using plain language to explain what you're experiencing.
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Please let us know how the appt goes. We are a big family here and want to know. Do not be concerned if the neorologist orders further testing. Sometimes this can be a long road as many here have discovered. It can be stressful but your mindset plays a big part in how you handle it. The diagnosed and undiagnosed'ed will both tell you that. Try to focus on the blessings in your life and not the negative

That is easier said than done I know, but time will give you the answers. Nothing else will.

Best wishes!

Just got back from the appointment. I followed all of your advice. I wasn't stressed out, at least not on the outside, I was all business and I didn't tell him what I thought I might have or use any big words :)

He said that my neuro exam was unremarkable and he scheduled me for an EMG, which he said he'd do himself, for March 4. He said he thinks this may be a virus. I did mention ALS at the very end, after the exam, and he said he was 99.9% sure that I didn't have that right now. Yes, he said RIGHT NOW. Drs, gotta love 'em. I also mentioned Isaac's and he said, I will definitely test your blood for that. I am going for that tomorrow. morning. THanks, ktmj for that!

He said that my twiches were begnin, just by me explaining them. He said he couldn't see any, but there are times when I don't twitch. Anyway, I won't second guess him now, I will go to the EMG and go from there.

Well, that has to be a bit of load off for now! Thanks for the update!
Viral makes sense to me! I'm really happy to learn that not only did your doctor not give you the impression he felt you had some awful condition, but also took your symptoms seriously. I hope you get some answers that have the best of prognosis's. Keep us posted. :)

Frustration is really starting to set in. If he does think it might be a virus, they why isn't he exploring that? Why no spinal tap? I will go for the emg, but it kind of just wrote me off. He was repeating things that I said back to me and he was getting it all wrong. He said my twitches were benign before seeing them or testing me?

My Dr. wants me to go see someone else. Like I said, I know it's early in the game, but I am not happy.
I left a messege on your home page, but I will ask again. Did you he or you comment on that your doc said you had hyper reflexes and he said your exam was normal? jUst wondering. He may have been blowing it off, doctors are just people too.

I understand your your frustration,
He probably thinks it is a virus because of the way it suddenly came on. Most of the time a virus goes away on its own.
He didn't just write you off he is going to do an EMG himself. IF he was writing you off he would have dismissed you today and told you are fine. Please take it easy, get your emg and take it from there. You called this morning and got an appointment today, you are pretty lucky.
most people have to wait 3 months to see a specialist.

Please hang in there,
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