Anyone also have myasthenia?

[ariella]

Hi everyone

POTS only explains part of my symptoms. POTS doc wants me on top of the other part of dx. One of the angles we're exploring is myesthenia gravis (original antibody test was negative, but I had been on steroids, so that is not unreasonable) The neuro I had last seen to figure out what is going on was at least man enough to say that he is not familiar with autonomic dysfunction. Probably need to go back to same doctor for whatever buerocratic reasons. Anyone have any useful info? Can myesthenia worsen autonomic dysfunction? I have an appointment with my primary tomorrow. For now, fishing around on google. thanks!

Ariella

[khudsonwv]

Ariella - I have been tested three times for it - all came back negative but neuro still feels I fit the diagnosis.. not sure what your symptoms are but - mine are extreme muscle fatigue that comes on with very little physical activity - muscle biopsy showed progressive muscle loss.... i have a foot drop once i walk too far and i have become quite the clutz - falling all the time because my legs just give way. this with the POTS symptoms have totally wiped me out...... i dont know how one dx effects the other but i feel they are definately related - all of my symptoms hit at the same time. not sure if this answers your questions but you are the first to mention this so I was a little surprised.... best of luck to you

Kim

[Ernie]

Hi,

I did an EMG and they concluded that I don't have Myastenia Gravis. They don't know what is causing the muscle weakness.

Ernie

[DawnA]

I have been tested for Myasthania several times also. All tests neg. The more that I do the weaker my muscles get. I start to walk funky and have footdrop. Also my eyes get droppy.

I had a muscle biopsy which show some abnormalities with my mitochondria. Mitochondria are the power houses in our cell...they make energy. This is not enough information to diagnosis me with a primary mitochodrial disease. You can have mitochondrial abnormalities with other diseases such as lupus. They have not been able to fiqure out what I have . So far I am diagnosed with Metabolic disease, NOS. In order to know if my problems are caused from a primary mito disease, I would have to have a biopsy done fresh, which can only done in at a few hospitals.

I am now taking CoQ10 and other supplements, which helps with energy production. This has helped me quite a bit with my symptoms...muscle, gastroparesis, fatique... You might want to give Co Q 10 a try if you have not already. Nature made is a good source, but even better is Q-gel from tishcon over the internet. I hope you can get some answers or relief.

Dawn A

[ramakentesh]

SInce Pots is a manifestion of a variety of different disorders, and even the most researched doctor on dysautonomia suggests that their understanding of the varied symptoms and mechanisms in pots aare still in their infancy, perhaps its POTS that is causing this symptom as well.

Although i havent had this symptom, i have had many other strange ones since i became ill with pots, so i am quite certain that they are POTS related.

[DawnA]

POTS is a syndrome( a group of symptoms) not a disease. THe POTS is caused by something. Whatever is causing the POTS is probably causing the other symptoms. Therefore whatever is going on is more thatn POTS and the symptoms are out of the POTS range.

Dawn A

[joyrose]

That weakness can be absolutely overwhelming. With POTS and dysautonomia one may not move around much and your muscles atrophy.

Or, if it's myasthenia, there is the weakness and then the muscle weakens.

Either way the blood pressure often drops and

You feel like cooked spaghetti

Enter Mestinon (pyridostigmine bromide), a drug that's been used for myasthenia to boost the endurance of muscles. It is now being used for dysautonomia too.

Now you can just eat spaghetti, not feel like it!

[DawnA]

Joyrose, Thanks for the information on Mestinon. I amy give it a try. Yes...I would rather eat spaggetti than feel llike it!!!

DawnA

[ariella]

hi guys, I'd love to eat spaghetti too, but it destroys my blood pressure!

have to wait another 6 weeks for my appt with the neuro. No one here is going to prescribe mestinon unless i get a positive result for myesthenia. What freaks me out is that the muscle weakness is also in breathing (I know breathing stuff comes with pots, but i even have it laying down)

Ernie, check with your doc, but I read that a regular EMG is usually negative in myasthenia, the appropriate test is a single fiber EMG. I hate EMG's.

Will try to get a hold of CoQ12 in the meantime

Pots doc convinced that the progressively weaker and slow walking can't be from the pots. I thought it made sense it is if blood isn't getting to different muscles, that would make them weak, right? What's interesting is that I had a horrific reaction to florinef, which is one of the drugs myasthenics are not allowed to have.

thanks for all the advice

Ariella