Myasthenia gravis or cfs

[Jpac]

It appears there is a bunch of symptom and treatment overlap for these conditions. I guess it’s possible to have both. Is there any crystal clear symptoms that seperate the 2. I understand ocular involvement seems to be a primary symptom for most.

I’m just puzzled. I seem to have every MG symptom except ptosis. The one symptom that effects my life more than others is muscle loss. The more I do(physically), the more I contribute to muscle loss, as well as fatigue and CNS symptoms.

Has anyone tried myasthenia gravis type treatments for cfs? Any input here would be greatly appreciated.

Joe

 

[Dechi]

I’m in the exact same boat. I am trying to convince my GP to test me for it. It is apparently hard to diagnose, there are a lot of false negatives.

Why does everything always have to be so complicated ? Sigh.

 

[Jpac]

I’m in the exact same boat. I am trying to convince my GP to test me for it. It is apparently hard to diagnose, there are a lot of false negatives.

Why does everything always have to be so complicated ? Sigh.

Yep, just from some casual conversation with docs I know they don’t seem to recognize a mild version of this. I have an appointment with a neurologist next week. More to come...

 

[Dechi]

@Jpac Here is something I gathered somewhere on an MG forum.

« I understand from my neurologist that when SFEMG is negative in combination with negative antibody blood tests, you can be quite confident its not MG ».

I want to start with the antibody test myself.

 

[nanonug]

I seem to have every MG symptom except ptosis.

You can get tested for MG as there are specific tests for this conditions. Talk to your family doctor about this or, if you can, go directly to a neurologist.

EDIT: Whoops, just noticed you already have an appointment...

 

[Alexi]

I’ve jumped through this particular hoop three times now...
Seen three different neuros. Had blood tests and MRI scans each time. In the absence of positive tests I am stuck with M.E. label.

 

[Jpac]

I’ve jumped through this particular hoop three times now...
Seen three different neuros. Had blood tests and MRI scans each time. In the absence of positive tests I am stuck with M.E. label.

I guess this means you believe it’s MG?
What about trying one of the drugs anti-chlor(something) which supposedly alleviates some symptoms.

 

[tiredowl]

I'm going to ask for tests for this condition, as I have severe muscle weakness.
Does MG cause brain fog and viral sick feeling too?

 

[Gingergrrl]

If you are getting tested for MG, I would get tested for LEMS (Lambert Eaton Myasthenic Syndrome) as well if you can.

 

[Alexi]

I’ve jumped through this particular hoop three times now...
Seen three different neuros. Had blood tests and MRI scans each time. In the absence of positive tests I am stuck with M.E. label.

No I don’t ! But it seems to be the preferred option for my Doctors ! Thing is.....if you don’t fit neatly into one of their boxes you get dropped and passed on to somebody else, and so it begins all over again. Personally I’m not interested in giving the symptoms a name....but I do think urgent research and funding is needed to find causes and treatments for this debilitating illness, whatever it’s called !

 

[rel8ted]

An optometrist I worked for wrote a detailed letter to my then GP asking that I be screened for MG. I wish I had recorded his response for the "idiot hall of fame!" He said, "she's just a power hungry woman who couldn't get into med school masquerading as a doctor and sending out ludicrous referrals. If you had MG, your voice would sound like Donald Duck, and you don't sound like Donald Duck." He was so mad he was actually spitting. My neurologist, however DID take it seriously and ruled it out. When I have a really bad few days, my husband stills says, "well, at least you don't sound like Donald Duck." That was the last time I saw that GP and he is thankfully retired from making women's lives miserable. I still wonder what med school taught their students that MG = Donald Duck voice and how we could make a lab test to verify that.

 

[Gingergrrl]

An optometrist I worked for wrote a detailed letter to my then GP asking that I be screened for MG. I wish I had recorded his response for the "idiot hall of fame!" He said, "she's just a power hungry woman who couldn't get into med school masquerading as a doctor and sending out ludicrous referrals. If you had MG, your voice would sound like Donald Duck, and you don't sound like Donald Duck."

This is one of the stupidest things I have ever heard (your former GP) and definitely belongs in the idiot hall of fame like you said. I have many "words of wisdom" from former doctors to add to the hall of fame but that is another thread. Glad you pursued it and saw a Neuro. In my case, the top contenders for the IHOF, were mostly Neuros!

 

[kangaSue]

The system must work differently here in Australia. I think that any G.P. can order an ANA panel and a blood test to detect antibodies to the acetylcholine receptor (AChR) or MuSK (the majority of patients have antibodies to one of these proteins) if you have symptoms that can fit for MG or LEMS, then refer you on to a specialist if required.

Mine did for me anyway. I don't have ME/CFS and wasn't looking for MG, the test for it was mistakenly done in looking for enteric autoantibodies that are known to cause GI dysmotilty where I was actually after a different acetylcholine antibody, ganglionic AChR. I only found out later that the test I wanted was only done in the U.K or U.S.A.

Voltage gated calcium channel antibodies are another antibody found in both enteric autoantibody GI dysmotility and MG or LEMS too and my G.P. ordered this antibody test as well.

 

[Gingergrrl]

The system must work differently here in Australia. I think that any G.P. can order an ANA panel and a blood test to detect antibodies to the acetylcholine receptor (AChR) or MuSK (the majority of patients have antibodies to one of these proteins) if you have symptoms that can fit for MG or LEMS, then refer you on to a specialist if required.

I think any GP in the US can order these autoantibody tests as well but some lack the background to know what to order, some just don't want to be bothered, and in other cases, insurance will not cover the tests. I was tested for the AChR and MuSK panels and was negative (in 2016).

I don't have ME/CFS and wasn't looking for MG, the test for it was mistakenly done in looking for enteric autoantibodies that are known to cause GI dysmotilty where I was actually after a different acetylcholine antibody, ganglionic AChR. I only found out later that the test I wanted was only done in the U.K or U.S.A.

I am sure I've asked you this before and have forgotten the answer but can you ship a blood sample to the UK or US for testing (like I shipped one to Cell Trend in Germany from the US for tests that I wanted).

Voltage gated calcium channel antibodies are another antibody found in both enteric autoantibody GI dysmotility and MG or LEMS too and my G.P. ordered this antibody test as well.

This was the autoantibody (VGCC CA+ Channel) being positive that started the whole process for me. The Neuro who ordered it expected it to be negative and was shocked when it was positive, along with anti GAD65 (but that one is totally separate to this thread). He did not take any of it seriously but luckily my main doctor did and felt that it played a role in my symptoms even if we were not sure what at that time.

Also (in case it has not been mentioned in this thread yet?), the VGCC CA+ Channel autoantibodies not only can link with LEMS, they are linked to lung cancer so if you test positive for one of them, your doctor should order a high resolution lung cat scan (which the average GP here would never do so you have to be your own advocate). I am speaking in general and not addressing this to @kangaSue who already knows my whole saga!

 

[jpcv]

A voice resembling Donald Duck`s is one clinical feature of MG.
I learned it at medical school too.

 

[Gingergrrl]

A voice resembling Donald Duck`s is one clinical feature of MG. I learned it at medical school too.

Would this be in all cases or just in some? I am just curious.

 

[jpcv]

not all, but many have this feature

 

[Dan_USAAZ]

A voice resembling Donald Duck`s is one clinical feature of MG.

I’ve heard it referred to as a nasally voice, rather then DD.

 

[Dechi]

Funny this morning for a few hours I had a voice resembling Donald duck. Maybe I noticed it because I had read this thread, lol.

I will have blood work soon for acetylcholine antibodies.

 

[kangaSue]

I think any GP in the US can order these autoantibody tests as well but some lack the background to know what to order, some just don't want to be bothered, and in other cases, insurance will not cover the tests. I was tested for the AChR and MuSK panels and was negative (in 2016).

Ah, ok.

I am sure I've asked you this before and have forgotten the answer but can you ship a blood sample to the UK or US for testing (like I shipped one to Cell Trend in Germany from the US for tests that I wanted).

Yes, absolutely but I don't know what the protocol as the arrangements to send my blood sample to Oxford Uni in the U.K. was all handled by my tertiary hospitals' Pathology Dept.

Also (in case it has not been mentioned in this thread yet?), the VGCC CA+ Channel autoantibodies not only can link with LEMS, they are linked to lung cancer

Most of the literature just mentions the link to small cell lung cancer but the VGCC Ab's can be linked to any lung cancer and wide variety of other cancers including breast cancer.

A voice resembling Donald Duck`s is one clinical feature of MG.
I learned it at medical school too.

As with my cancer comment here, this is a major failing in medicine where doctors will easily dismiss you when they don't find the more common symptoms as repeated in the literature.