PDA

View Full Version : I read the Neuro's private report... I wasnt meant to.



giggle
09-19-2011, 09:26 PM
As you know I have been trying to find out whats wrong with me. Im sick of it already.

But just the other day I read the report from the Neuro I went to... I wasn't meant to read this report, it was meant to stay on my file and be between the neuro and my other doctors.

What the neuro said directly to me, was he was considering a plaquenil issue. What he said to my GP, was he was tossing up between plaquenil and myasthenia. I assume he meant myasthenia gravis?
He also went on to say he doesnt know what is wrong with me and that my story just doesn't match up with what he was seeing!!! He was calling me a liar? About what? The only thing he couldn't see is my tremor but that doesnt happen when I am in a doctors office because it requires me to relax. He confirmed I had muscle weakness and virtually no sense of smell. He made no attempt to test my cognitive function and his test for my balance did not test according to my complaint that if I see an obstacle I can not stop myself from walking into it and that I randomly fall to the side on occasion while stationary. He was too weak and shaky himself to test my weakness, he is about 80years old. I need to get a new, younger Neuro but I am really cranky I spent a fortune on this guy and will have to spend a fortune on the next one. He wanted me to call his office to make an immediate appointment to have an EMG. I think I might go to my doctor at the end of the month and ask for a referral to a new neuro.

MG makes a fair bit of sense except for a couple of things... why is my digestion ridiculously slow so that I am existing on mush or having a stomach blockage and my BMs are once a week? why do I have a resting tremor? and why have I been having rather severe cognitive issues?

If it is either, it means giving up plaquenil. My Rheumy is very reluctant to do this. Dont know what to do. If I go off the plaquenil I wont do it until I move.

I dont know, any thoughts guys? I still havent been to the ENT to have my sinus drained, really its a matter of time and with the move coming up in a month or so I wanted to be able to continue on with the same ENT as this will certainly be an ongoing issue.

I'd like to be able to eat properly before I can smell properly though... because I think not being able to smell delicious food is making my mush diet easier. : )

Anyone with experience with MG I would love your advice. : )

tgal
09-19-2011, 10:20 PM
Hey There,

When I was being tossed around from doctor to doctor and getting no answers I went and got copies of my records from every doctor. I then read over them and you will be surprised how many things are not true. I am not saying that they are lying but they have so many patients that things get mixed up in their notes.

I made a copy so that I had two sets. I went through every note and every set of test results and on one of the copies I marked things that were inaccurate. It also gave me a feeling of being active in my illness. When I knew, i mean really knew, what they were thinking then I could study up on that before our next appointment. I felt armed when I went in. I really knew what questions to ask and therefore I couldn't be brushed off and I was able to be my best advocate.

I also would get updated copies of everything when I went to a new doctor. I hand them the clean copy (not the ones I made notes on) so can make a copy from their file. Often times one doctor doesn't get the tests or pictures from the other doctor but they can't use that as an excuse for not not working with me that day. I found it helped wonders and it was even better when one neuro wanted to brush me off because he didn't have the pictures from the MRI. Needless to say he was rather surprised when I pulled out a CD of those images. LOL He had to go to his office and look them over.

You need to get the eating issues taken care of quickly. I will keep my fingers crossed

Linda From Australia
09-20-2011, 02:33 AM
Who is going to do the EMG? If you don't feel confident with your Neuro, then go to your GP and ask to be referred to another Neuro so you can get an EMG as soon as possible. Don't worry about if the EMG is negative, they can be repeated at a later date.

I had abnormal readings for my right bicept, but I noticed in the notes for my muscle biopsy, it was mentioned that the EMG was normal. It was abnormal for the right upper arm, the other places were all normal. Now that was 1 place out of 12 that was abnormal. They test your hands and feet as well. Unfortunately they found plenty of abnormal things on my arm and leg biopsies.

I really hope they either find noting wrong, or if they do they can fix it up soon, so you will be as good as new.

giggle
09-20-2011, 09:03 PM
thanks guys for the replies : )
I didnt have the energy to reply yesterday but lets hope I can get through a response today lol

Tgal... of all the things I started doing right this year... it would be all the paperwork I have now : ) So I have a folder full of everything I collect. I neglected that for a few years. I have never seen something like this before... he discounted ANYTHING I told him that he hadnt seen for himself. Very disapointing. My partner was there with me and confirmed everything I said... what would he have to gain from lying even if I were a hypochondriac?

Linda... the EMG was meant to be done by the Neuro I saw... but I dont want to go back to him because it was his belief that nothing I said was true, he had to see it himself. So yeah, I guess I have a bit of ringing around to do. Waiting to see my GP next week to get another referral.

tgal
09-21-2011, 12:51 AM
Who is going to do the EMG? If you don't feel confident with your Neuro, then go to your GP and ask to be referred to another Neuro so you can get an EMG as soon as possible. Don't worry about if the EMG is negative, they can be repeated at a later date.

I had abnormal readings for my right bicept, but I noticed in the notes for my muscle biopsy, it was mentioned that the EMG was normal. It was abnormal for the right upper arm, the other places were all normal. Now that was 1 place out of 12 that was abnormal. They test your hands and feet as well. Unfortunately they found plenty of abnormal things on my arm and leg biopsies.

I really hope they either find noting wrong, or if they do they can fix it up soon, so you will be as good as new.

OK it may simply be a case of brain fog butnwhat is an EMG?

Desleywr
09-21-2011, 02:54 AM
I am a few stages ahead of you with dra looking at the same thing. With the EMG my gp said that it is best tested when the flare is in full flight as even in the early stage of easing it will not read clearly for EmG. Also there is a blood test forMG which is the Musk antibody test which does have a small percentage of not registering for all MG people. In a flare I lose all strength to walk up stairs, I can not pass a cup of coffe to people as when I pass it if they don't grab it quickly my arm lowers and they think I am joking. The strength I have lost over the past four years is increasingly residual as when not in a flare I still have more and more loss of strength. After each flare. When in a flare I can't open anything and fingers lose coordination to the point I can not wash my hair as I can't hold up my arms and when I try I lose more strength and then painful muscles. MG is difficult to diag and often is done through elimination from other conditions and can take some time. Hope this helps I also have been treated by some Drs like you all I can say move until you find one who is willing to listen.
Desley

Linda From Australia
09-21-2011, 03:29 AM
I am copying the information for you about EMG from:
http://www.emedicinehealth.com/electromyography_emg/article_em.htm

Electromyography, or EMG, involves testing the electrical activity of muscles. Often, EMG testing is performed with another test that measures the conducting function of nerves. This is called a nerve conduction study.

EMG may aid with the diagnosis of nerve compression or injury (such as carpal tunnel syndrome), nerve root injury (such as sciatica), and with other problems of the muscles or nerves. Less common medical conditions include amyotrophic lateral sclerosis, myasthenia gravis, and muscular dystrophy.

People usually have a small amount of discomfort during EMG testing because of pin insertion. Disposable needles are used so there is no risk of infection.
During nerve conduction studies, small electrodes are taped to the skin or placed around fingers. You typically experience a brief and mild shock, which may be a bit unpleasant. Most people find it only slightly annoying.

tgal
09-21-2011, 06:30 AM
I am copying the information for you about EMG from:
http://www.emedicinehealth.com/electromyography_emg/article_em.htm

Electromyography, or EMG, involves testing the electrical activity of muscles. Often, EMG testing is performed with another test that measures the conducting function of nerves. This is called a nerve conduction study.

EMG may aid with the diagnosis of nerve compression or injury (such as carpal tunnel syndrome), nerve root injury (such as sciatica), and with other problems of the muscles or nerves. Less common medical conditions include amyotrophic lateral sclerosis, myasthenia gravis, and muscular dystrophy.

People usually have a small amount of discomfort during EMG testing because of pin insertion. Disposable needles are used so there is no risk of infection.
During nerve conduction studies, small electrodes are taped to the skin or placed around fingers. You typically experience a brief and mild shock, which may be a bit unpleasant. Most people find it only slightly annoying.


OHHH I had that! My first neuro did that. I was thinking that it was a type of doctor. They did it on my legs.

As Always... thanks for the information Ms Linda!

BonusMom
09-21-2011, 03:31 PM
I had an EMG of my legs done earlier this summer. It was negative, but my neuro still diagnosed me with Polymyosistis. The treatment is basically the same as a flare of SLE and Sjogren's.

giggle
09-21-2011, 07:48 PM
Thanks heaps for the explanation Linda :D its a little worrying, but its no muscle biopsy thats for sure!

Desley... thank you for the response! This is exactly what I am starting to experience... it used to be the kettle I had trouble lifting... now I cant lift a full cup of tea to my mouth. But the majority of movements I make dont make my muscles give in... they mostly burn but large movements such as holding my arms up in the air I can push through. Small movement makes my muscles give in, like lifting tea to my mouth, trying to keep my eyes open, trying to focus my eyes, trying to move and click my mouse, trying to push the button on a keyboard.
But my muscles start to burn immediately and constantly, in fact just sitting makes my arm muscles burn and im starting to wonder if my head tremor was from muscle weakness. I really want to talk to someone who has a lot of experience with MG cause i have things that dont seem to ad up, like my digestion stopping etc.

lupyme
09-22-2011, 01:23 PM
It's a waste of time trying to get a doc to believe you that already believes you're a liar. Check your insurance or whatever medical coverage you're under for the docs in that field. Do an online research of them to choose and then ask your primary provider for a reference. These people work for you. If they ignore you or don't believe you, fire them!