Fork in the road...

[Jpac]

Is it CFS, is it myasthenia Gravis...is it neither or so new curse that fell upon me. I just can’t find a bucket I fit best in so I thought I would try again here.

Prior to 2016- couldn’t build muscle, would have to reach to find a satisfying breath every once in a while and dealt with anxiety but nothing crippling. Normal life by all account.

Virus in 2016- flu or mono or something but I was down for over a month with fever and fatigue. The fever eventually subsided by the fatigue didn’t. What I’m left with is muscle wasting, generalized fatigue, voice gets hoarse easily, and post exertional fatigue/anxiety. Definitely related to my cns.

Blood work- mostly normal. Low vitamin D, Slightly elevated ggt and alt...but just barely. And my creatinine was a little high. Neurologist checked me out with more blood, emg and sfe...all normal.

I’m functional but dissappearing. Need a track to run on...what type of specialist should I be working with? Lost and sad.

J

 

[Rebeccare]

Dr. Systrom in Boston often prescribes Mestinon to CFS patients--interestingly, that drug's original purpose was to treat Myasthenia Gravis. Given that you have so much overlap in your symptoms, I wonder if it would be worth talking with your doctor about? Mestinon has been around a while and is generally well tolerated (generally--it made me feel exhausted and out of breath, but I guess I'm an odd duck). Here's a link to an article on the topic.

 

[Jpac]

Dr. Systrom in Boston often prescribes Mestinon to CFS patients--interestingly, that drug's original purpose was to treat Myasthenia Gravis. Given that you have so much overlap in your symptoms, I wonder if it would be worth talking with your doctor about? Mestinon has been around a while and is generally well tolerated (generally--it made me feel exhausted and out of breath, but I guess I'm an odd duck). Here's a link to an article on the topic.

Great article...thx! I have been considering mestinon but really have no doc that would feel good about prescribing. Will try this route...I’m reaching but who knows.

 

[Mel9]

Is it CFS, is it myasthenia Gravis...is it neither or so new curse that fell upon me. I just can’t find a bucket I fit best in so I thought I would try again here.

Prior to 2016- couldn’t build muscle, would have to reach to find a satisfying breath every once in a while and dealt with anxiety but nothing crippling. Normal life by all account.

Virus in 2016- flu or mono or something but I was down for over a month with fever and fatigue. The fever eventually subsided by the fatigue didn’t. What I’m left with is muscle wasting, generalized fatigue, voice gets hoarse easily, and post exertional fatigue/anxiety. Definitely related to my cns.

Blood work- mostly normal. Low vitamin D, Slightly elevated ggt and alt...but just barely. And my creatinine was a little high. Neurologist checked me out with more blood, emg and sfe...all normal.

I’m functional but dissappearing. Need a track to run on...what type of specialist should I be working with? Lost and sad.

J

Were you able to try Mestinon? If so, did it relieve your symptoms?

 

[Gingergrrl]

Is it CFS, is it myasthenia Gravis...is it neither or so new curse that fell upon me. I just can’t find a bucket I fit best in so I thought I would try again here.

Have you tested for autoantibodies for MG, MuSK, and LEMS? It is so frustrating not to know what bucket you fit into and I really related to that! Just curious, do you also have POTS and autonomic problems?

 

[Wolfcub]

@Jpac
You've probably already got this checked....but have you had a Thyroid panel run?
Just a thought when you mentioned hoarse voice...

 

[Jpac]

@Jpac
You've probably already got this checked....but have you had a Thyroid panel run?
Just a thought when you mentioned hoarse voice...

I did...it’s been normal every time kinda crazy because sometimes I want it be something someone has heard of...

 

[Jpac]

Have you tested for autoantibodies for MG, MuSK, and LEMS? It is so frustrating not to know what bucket you fit into and I really related to that! Just curious, do you also have POTS and autonomic problems?

Yep, well the neurolgist said he did...everything he did came back normal. Not sure which ones were for what.

 

[rel8ted]

Yep, well the neurologist said he did...everything he did came back normal. Not sure which ones were for what

You absolutely can have seronegative MG. My primary believes I do and will be traveling to see a seronegative friendly neuro for a second opinion.

 

[Desertstorm]

I did...it’s been normal every time kinda crazy because sometimes I want it be something someone has heard of...

No shit! Not crazy at all, very common with this.