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twinmommie72

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Hi there... I've been in a whirlwind of docs/testing since May and wanted to see if someone could shed some light on a few things. I began with slurring words back in feb/march this year and saw a Neuro that said it was merely stress from a horrible divorce I was going through. Saw another Neuro that says its his belief that it is ALS. So many crazy factors began weighing in like the Mirena IUD I had placed back in Nov 2009. I researched and found so many women with the same symptoms as me. The 2nd Neuro not believing it has anything to do with what his belief is.
I had an extended member of my family send me a letter wishing me well and also giving me a glimpse into my Fathers childhood. My father passed 7 years ago. His mother passed away when he was 5 back in the 1950's. I always heard she died from Pneumonia, but in the letter she stated that she was diagnosed with Myasthenia Gravis and died with complications that lead to Pneumonia.
I guess my question is how is the testing different in diagnosing both. Could this be a genetic cause? Just like her I began with speech problems. I had a swallowing test that was normal but swallowing piils tends to be a stresser. Also found the the Mirena has been releasing silicone into the bloodstream.
I just have to wonder had I never had the Mirena placed would this be happening, or is my findings of my grandmother whom I never knew be a clue to all of this.
Sorry to be long winded....thank you for reading.
Hugs
 

rose

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Specific tests, beyond the standard blood labs for the antibodies, are the Repetitive Nerve Stimulation (RNS), similar to the NCV (but its repetitive, hence the name) where, with repetitions, the conduction response slows . and the Single Fiber EMG. From what I understand, if the single fiber emg is normal, a person just does not have Myasthenia Gravis. However, this test cannot distinguish between MG and ALS. An abnormal one is seen with both diseases. The RNS would be normal with someone who has ALS though, and usually not normal for someone with MG.

I do not know if MG runs in families, but regardless of that, the possibility should be explored.

Have you had any sort of course of meds for immune modulation therapy? If what you have is inflammatory, whether it be MG, or some other sort of immune response, this is a method of determining something of this nature exists, if a person shows improvement from the medications. Also, the drug Mestinon, although not actually making a person with MG healthier, will make a person with MG feel better, and stronger while the drug is active in their system.

I hope this helps, good luck to you.
 

Jellycat

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Perhaps you should ask for tests to see if it is MG? My understanding is that blood tests can help determine this. There is also a chemical that they can inject into your bloodstream. You are asked to read or count while this is happening. If your slurring improves during this test, it is an indicator of MG.

Sorry you are having such trouble. Hope you get some answers soon
 

Zaphoon

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When I had the NCV, the person performing it did the RNS routine towards the end. Several quick, short, jolts of voltage in succession. This was done, as you stated Rose, as part of a test for MG. No sleeping through that one!
 

twinmommie72

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They haven't tried any Rx treatment. I'm trying to get in with a Spec for Myasthenia gravis. I understand there are more test that they can perform to further evaluate it. All this is such a mystery to me as it is to everyone with the diagnosis. Its amazing how one can go from healthy to not in a split moment.
The tests that I have done were EMG/MRI/blood work/spinal tap.
All I can say is I pray for everyone here. I pray there is a miracle breakthrough so we can all restore our bodies prior to the diagnosis.
I was told by the first Neuro is was basically impossible for me to have ALS. Wondering how he came to that conclusion. He offered to do my EMG for free to prove it was all in my head. I declined and saw the second Neuro. Anyway...there I go rambling again. Haha.
 

Alyoop

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Hi There
MG is fairly simple to get tested for. Its just an IV injection of a drug. I will paste the info so that you get it correctly

A drug called Tensilon (also called edrophonium) or a dummy medicine (inactive placebo) is given during this test. The health care provider gives the appropriate one through one of your veins (intravenously, through an IV). You may also be given a medication called atropine before receiving Tensilon so that you do not know you are receiving the drug.

You will be asked to perform some repetitive muscular movements such as crossing and uncrossing your legs or getting up from a sitting position in a chair. Particular attention will be paid to whether your muscle strength is improved by the Tensilon.

The test may be repeated and additional Tensilon may be given to help tell the difference between myasthenia gravis and other conditions.


I was tested for it by having a tablet that is used for treatment of MG that apparently would make a difference almost straight away. It didn't, but boy did I have a cramping stomach. "oh yes" came my Neuro hubbys replY. "I forgot to say thata side effect of the tablet can be severe stomach cramps" don't you just love men?

Seems being told you have ALS from a slurred voice is a bit OTT.

Best of luck
Aly
 

rose

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The Tensilon test, I remember when I had my first EMG, and it showed problems, my doctor, the ENT wanted to do the Tensilon part at the end of the session, but the neuro present refused. Someone here on the forum had said it was not done any longer, but I think it is, at least from a web search it is still practiced.

here is a link I found demonstrating how effective it is for a golden retriever :)

YouTube - Positive tensilon test
 

twinmommie72

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Joined
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Messages
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Reason
PALS
Diagnosis
08/2010
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Southern
Thank you all so much for the info! Hopefully I can get in soon.
Big Hugs!
 

athurart09

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Joined
Sep 14, 2010
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CALS
Diagnosis
10/2010
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US
State
USA
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USA
Thank you for the information.
 
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