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ltr

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Hi all you caring readers! I had my appointment yesterday at Upstate Medical Neurology. Since we all need to hear some good news about one another, I will tell you that first!

The doc said my reflexes were great! He said my weakness wasn't too bad. But, after the exam he ordered EMG, blood work and a sleep study to see fasics.

The bad news is......the whole visit was very strange. BEFORE he examined me he asked me what I was worried about. When I told him about the weakness, muscle twitching, muscle cramping, he stopped me in mid sentence and said, "I know your symptoms, now what are you worried about?" This went on twice until one of my family members stopped him, since it seemed a little weird, awkward and I didn't know what he was looking for. She asked him if I had an MND. He said, "common things are common. Rare things are rare." He jumped up, grabbed his mid section and said, "I used to be 25 pounds lighter. I have to live with this now. You don't see me obsessing over it." This was all BEFORE he examined me! I was kind of in a daze watching this man. Then he said, "you're a single mom of 3, go to school, does that cause you a lot of stress?" Oh my God! Yea it causes stress, so does the muscle twitching, weakness and cramping I told him.

He said he couldn't see any muscle twitching, so was I sure I was having it. Then he said maybe I have chronic fatigue syndrome where a virus or infection has done something.

Even though it was strange and I was disillusioned with the appt., at least he ordered the tests. He just didn't hear much of anything I said.

Please wish me the best with the EMG and hope they come up with something! If any of you have suggestions for my next appt. with him, I would really, really appreciate it. He told me he has an anxiety disorder and takes meds for it, so I am thinking that may have been why he was so hyper, jokester and not hearing me talk. He didn't reply when I told him I couldn't button a shirt. It was just weird! Thanks for any help. Leslie
 

Jamiet

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typical neuro....I've been to 5 of them, beating around the bush....an ALS center shouldn't do that to you, is he in an MDA ALS center?

If i were you, i would formulate my own opinions...and start being your own doctor.

If you cannot button your shirt, you need to be at an ALS center....sorry to be so honest with you, but that is alarming.


Rgds,

Jamie
 

ltr

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Hi Jamie,

I remember from some of your posts that you too are having a hard time. I was not seen in the ALS clinic, though there is one related to the neurology center I was seen at. I needed to be seen by the regular neurologist before being sent to the als clinic. Like I said, at least he is doing an EMG. That's all I need to get started, I think. I have written him a very nice letter, but I will sit on it for a little while. I get the feeling that they are only interested in profound cases in any specialty. I just hope they figure something out before it is profound.

I find many of my symptoms alarming. This last week my jaw has begun to feel weak, as if I have been eating something extremely tough and it is tired out. That went in the neuro's ear and out the other! Maybe these things just don't matter to him. I think he had the whatever it is, it is mentality. Diagnosis does matter because I can't prepare, get any help, meds for symptoms without it. Maybe it will work out, we'll see. Leslie
 

liz

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Wow, Leslie. That neuro sounds like a real odd duck. I don't think having an anxiety disorder is enough to explain such behavior. Why would he even be telling you about his own medical concerns during an appointment that is supposed to be about you? I wonder how he'd react if someone treated one of his family like that.

Anyway, you're right that at least you have the right tests scheduled. Since the diagnosis phase can take time and repeated neurological testing, you may want to ask to be switched to a different doc at that practice. If you're not comfortable with the guy you saw (and why would you be?) don't put up with him. Even if you don't mind his strange behavior, you really need to be seeing someone who will listen to you.

Just my opinion,

Liz
 

Jamiet

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Been down the same road...i've got an appt. monday withe the ALS specalist i've been seeing. Once she sees my tongue again, i'm almost positive she will not be 100% sure it's not ALS now...

You can start the ALS vitamin regimen (antioxidants). I did and the first day into them, i feel better.....i guess it's the B 12.

Anyway....

Vitamin C - 3000 mg per day
Vitamin E - 2000 IU per day
Vitamin B 12 - 3000 mg per day (sublingual)
Co CQ 10 - 300 mg per day
Beta Carotine - two per day (50000 IU)
B complex if you want...


Split taking them up into at least 3 doses...i divided them all into two or three doses.

Good Luck and be persistent with the Neuros. I would not sit back and wait on them. I'm like you, if i got ALS, i want to know now.

Rgds,

Jamie
 

Al

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Just off the top of my head here I'd say the guy sounds like a bit of a whacko BUT some of what he said about the CFS and viral problems could be true. Symptoms of these disorders can look like ALS and are confusing even to a trained Neurologist. If he's right we'll all be so happy for you. You're not keeping that positive attitude are you? Think Chronic Fatigue. It's curable. Think positive. Have a good weekend with the kids. You may not be as sick as you think. I'd be thinking he gave me hope not that he's nuts. At least wait for the tests and then call him a nutbar.
AL.
 

CBowman

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Leslie,

Can you get another doctor, this guy seems like a real ass. You can get you EMG and blood work (have them make you copies) and see someone else. Is there anyway you can go to an ALS center or Mayo Clinic. You have real problems and need answers. I know diagnosing these rare diseases takes time, but you don't need the funny business.

Thats my 2 cents

Chad
 

ltr

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I know you are right Al. And the one thing that I did bring home with me is my good reflexes. That means a lot, right? He didn't say anything after he checked my muscle weakness, but I was able to perform the tests that he did (he had me lift my arms in the air 20 times and then hold my arms out straight and push his hands toward the ceiling). Though my muscles felt fatigued and cramped after doing the maneuvers, I could still do them. Thanks so much for your positive and caring outlook!

I can think chronic fatigue, something viral that went haywire. I put a call into that rheumo. I saw to discuss this with her.

I will keep the positive attitude, and I went away happy because he ordered the tests. So, even if he has eaten too much fruitcake, the tests can't lie! Thanks al......Leslie

Jamie,
I really appreciate the regimen. That can't hurt, so I will definitely do it. How do you split it up, breakfast, lunch, dinner type thing? Thanks again.......Leslie
 

MagnusD

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What are your reflexes supposed to be like? When my GP did mine she told me it seemed like I didnt have any....
Just curious what they are looking for when doing the tapping
 

shannonme

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MagnusD said:
What are your reflexes supposed to be like? When my GP did mine she told me it seemed like I didnt have any....
Just curious what they are looking for when doing the tapping
People with ALS have exagerated reflexes. When the doc taps my mom's knees she pratically kicks herself in the head.
 

ltr

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When the PCP checked my reflexes last month I almost kicked into the next room, but when I went to the neuro last week they seemed normal. Last year the neuro nurse practitioner couldn't get a reflex on the right. Very weird. Has anyone heard of them changing?
 

CindyM

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Sometimes my leg doens't move when they tap me with that little hammer and other times I jump a mile.
 

patricia1

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sounds like its time to look for a new neuro However most of them are wacky Ive been to 7 and there was one normal one and he didnt know what I had go figure Pat:smile:
 

hopingforthebest

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Dear Leslie

I work for a very professional neurosurgeon and this neurologist that you saw, by what you have told us in your post, is not very professional.

If this doctor ordered tests that you are going through with, make sure you request a copy so to have your own records for the next specialist that you see. It is your right to have the copies and this way a repeat test can be a comparison test to your next EMG.

Use your gut feelings when seeing an MD and remember there are alot out there willing to help you and give you the respect you deserve.

Will pray right now for you to have the wisdom to know what to do!

Patty :)
 

ltr

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Thanks so much for your advise Patty. I have already considered changing the neuro, before I waste too much time with him. Not only was he weird, but he made me feel silly for having the symptoms I am having, so I came home with the same symptoms, unable to sleep well, cramps, etc. I was really hoping for something to relieve some of this. The only problem I am facing with switchin is that I have to travel 2 hours in one direction or the other to see a neuro. I not only chose this neuro because it is a teaching facility, but because it was close to a relative. I am considering, though going 2 hours in the opposite direction for better ins. coverage and a different doc. I would like to find a neuro and stick with him. After working in the hospital for 15 years I know it isn't good to switch doctors a lot, but what are people supposed to do when they aren't comfortable with their care. He can't misread an EMG, right?
 
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