[Annie59]

I have a couple questions:

Do any of you document symptoms, more specifically activity level for your doctor and in what format do you do it so it is easily readable and isnt a turn off from being to long, wordy.

Has a doctor even asked or noticed that you react to the drugs that make people with MG worse as part of your profile? I have never been asked this but do have some. For instance Plaquinel and Cipro family drug.

Annie59

[AnnieB3]

Doctors do not look at drug reactions BEFORE you have a diagnosis of MG. There are drugs to be cautious of if you have MG.

They diagnose MG with a clinical exam, hopefully thorough, antibody tests, EMG, RNS or SFEMG, sometimes with an exercise EMG, muscle biopsy and, sometimes, breathing tests. Antibody tests are specific to MG. EMG's are not and a positive result can be from a number of diseases. A muscle biopsy often looks for inflammatory diseases or mitochondrial cytopathies. What is sort of funny is that they "claim" not to be able to see the neuromuscular junction in many adults.

I know you are grasping at straws to get some help but this approach won't help you. I honestly believe that you need to simply write a simple list of what your symptoms are, when they occur and the severity or not of them.

A reaction to a drug does not necessarily mean you have MG. You could be having an adverse response that anyone could get or an allergic reaction. Drugs and the reaction to them does not help doctors diagnose MG. Only the MG-specific drugs of Tensilon and Mestinon, etc.

Let your doctors be the doctors. Don't "profile" yourself as this or that - it won't help you. Simply find nice, caring doctors who will do what they can to help and go from there.

Annie

[Annie59]

Guess I was murky in how I explained the medication reaction. I didnt mean just garden variety reactions. There are certain medications that increase the symptoms of myasthenia gravis and some even have that in the drug the warning like cipro. I have read this is taken as a valid history point by more thororugh docs who can take the time and do take history as a seroius measure of a diagnosis. This is a general note tho I have seen more specific on meds. Maybe a better word is features a doctor could look for that wouldnt exist in a healthy person or someone with another disease.

http://www.mayoclinic.com/health/mya...SECTION=causes

I am trying to help my pulmo and myself. I'll grasp at straws if that is what it takes. It was me asking my pulmo by letter to do a mestinon challenge during my normal pulmonary function lab tests. He did it and thankfully it happened when it did as I has seen the 2nd neuro about autonomic dysfuntion and he unfortuntely got licks in on the muscle subject and put some other blows in the report making it blaming me for some of my symptoms. But thanks to the very real results of that challenge my pulmy is squarely on my side. But he can only suggest that other things get done that neuros have to order. He got the neuro to order the biopsy but honestly if it comes back negative at this place which can happen even if you have MG I could be in worse shape. Biopsies have such a need for the right person doing them and the right person reading tthe biopsy. I could do it when it was first ordered because as usual my young neuro has no clue how dis abled I am. I told her I had to get more help at home for recovery period esp since I live on the second floor. Getting that aid in place took over a year from the dept of human services. Unfortuntely she didnt document that I was waiting for this help so my other docs thought that I was avoiding the test.

So are you saying you feel a biopsy can show MG? It sounded like you didnt think so. And of course you are right about a good doc. But the university is tainted by the exsisting records and my doc and peds doc that saw me recently are the only muscle neuros. The local neuro office knows I was seen at university and wouldnt do a true fresh look as we have discussed. They wanted to know what thhey said and a copy of the records. I declined and said I wanted a fresh look causing the office to say I would not bee seen again until that happened. Traveling to Kansas or another good place when I am on disability only is not gonna happen soon. So I spend alot of time trying not to end up in the hosp.

Annie59

[scrubbs]

Between neuro visits I make notes of of everything I feel is signifcant I want to bring up to him and print it out and he adds it to my file.

I keep it short and then elaborate in conversation.

One of my notes for this months visit is: Numbness in feet worse.

I have mentioned to him before that I had numbnes in my feet before and he told me it was not a symptom of MG.

Now the problem is getting more severe and even painful and I know it must be neuorological. I will let him know that I would like him to try diagnose the problem and try to do something to help me but "numbness in feet worse" note is all I need to make sure I do not forget to bring it up.

If you save these notes on your computer or file them if you hand write them, then you will have a record of the dates that were significant in changes or anything else that need to refer back to.

I think record keeping is very important. I hope this help you.

Tony

[roguepuppet]

to the point of record keeping, i find it is particularly important, especially in light of the holes in my memory that keep developing. I use evernote, which is free electronic tool.. can get to it from any computer, ipod, cell phone, etc.. which maks it easy for me to jot notes. Also taking pictures of all dr test orders and uploading there, to track what is done when.
For less verbage, I have been experimenting with a symptom rating spreadsheet to track meds and levels of symptoms during the day. want to do some statistical analysis on it, eventually and look for correlations

[Annie59]

Tony , thank you for the example. Good illustration. I like this idea.

And Roguep my oldest daughter wanted me to try speadsheeting but I am just not well enough to manage that. I am good with computers but the brain fog and vision have me at minimal levels of use these days.

I keep a journal with symptoms as part of my day and I keep a notebook size college calendar for tracking symptoms in an easier more organized way to access way.

I get so lost in appointments these days as my brain fog is alot worse. My daughter tries to help. I am grateful for that for sure but she can do it all. I feel I need to follow up some visits with a brief note of things that were missed, that I didnt make clear. I know that the last 2 appointments I either would lost my voice cause of breathing issues or even go blank at times.

Originally Posted by roguepuppet

to the point of record keeping, i find it is ...... want to do some statistical analysis on it, eventually and look for correlations

Annie59