I am in an awkward position. For over a year now, my doctors have been going back and forth about whether I have myasthenia gravis. I have a lot of symptoms that seem like myasthenia gravis, including ptosis, weakness in my limbs, trouble swallowing, choking on food/saliva, drooling, and especially difficulty with breathing. I have significant weakness in my chest wall. I also have trouble with my eyes. Two of my doctors think I have myasthenia gravis, my pulmonologist and my ophthalmologist. However, the neurologists do not think I have myasthenia gravis, and this is a problem, because they are the ones who need to prescribe treatment. They think I have some sort of a neuromuscular problem, but they don't know what it is. For some reason, my tests have all been negative except for the various breathing tests, which all show significant problems with the muscles of my chest and my breathing function. I will be getting a non-invasive home ventilator soon.

Also, I take Mestinon, and my symptoms respond to Mestinon, but I think the dose needs to be raised. I also think I need to take it more frequently, but the neurologist won't consider it because I don't have myasthenia gravis. It's like being on a roller coaster. I get partial relief for a few hours, three times a day. Then it wears off and I'm back in the same mess again.

I wonder if other people have run into similar problems, and if there was any resolution to it. Over the past few weeks, my breathing was so bad that I wondered if I should go to the hospital, but I didn't know that they could help me since there is no myasthenia gravis diagnosis and thus no treatment they could offer.

Thanks to everyone here for this forum. I wish everyone strength and peace for the challenges you are facing each day.

Take care,
Erin

Hi Erin,

Yes I have run into the same sort of problems. Blood tests are negative, Neuros therefore say it isn't Myasthenia, but accept that there is some sort of a neuromuscular problem, but they don't know what it is, but it is not their speciality (Myasthenia) so back to the local GP.

Mestinon helps but I do have to keep increasing the dosage, which is a worry, since it says to me that the underlying problem is getting worse.

Breathing was a problem through the warm summer months, is better now.

But the Mestinon rollercoaster must be common to many people. Relief for a few hours, then just when you think you feel "normal" again, it tapers off and back in the same mess, then another dose and around we go again.

Take care and feel free to ask any questions that you have... someone here will probably have been there before.

Julie

Dear juliejayne,

Thank you so much for your reply. I'm sorry, though, that you have had similar problems with trying to get a diagnosis. It's good that you've been able to get enough Mestinon somehow to increase the dosage as needed, but as you say, it's a worry that the symptoms seem to worsen to that you've had to change the dose.

I'm glad that you are breathing better now that the summer weather is going away. We are still having very hot weather here. Today is 41C/107F where I am! We are having a heat wave. It is making all of my symptoms worse. I'll be glad when we get cooler weather again.

Thanks again for writing back to me. Wishing you well from across the miles.

Take care,
Erin

Erin, 41C is hot. I am in serious breathing problems over 30C. If you already have evidence of breathing problems and have a home ventilator, then yes, if it gets bad, go to the ER. Advise them that is suspected MG... take your Mestinon meds with you. They may not be able to treat the MG, but if your breathing worsens, they may be able to confirm MG from your breathing problems.

I have same set of symptoms with improvement on Mestonin. All labs and nerve tests are negative per neuromuscular neurologist at Mayo. Suggested improvement on Mestonin is placebo effect, but told me not to stop med. Nothing he can do for me. No suggestions, nothing. Referring local neurologist diagnosed MG 5 mos ago, started Mestonin and increased dose with significant improvement. He does not deal with MG on regular basis so he recommended Mayo for their MG clinic. He is disappointed in dr's conclusion as well. Discouraging.

Also have CVID and adrenal insufficiency, so get oral steroids and IV Ig which are also treatments for MG. Tired of seeing drs, being put through tests and being told nothing. Ready to quit trying to get an answer and just put up with being sick more days than not. Has had an enormous impact on my life, my husband's, who has been through all the disappointments with me. We have had to stop doing most any social activities at least ones that require advance commitment because we never know how weak I will be tomorrow much less in a week.

Sorry to see others are in similar circumstances, but encouraging in that we are not alone.

Amazingly sad that modern medical experts can give up so easily. Mestinon as a placebo!

Is it possible to have a placebo effect whilst you are sleeping?

And what I find even more disappointing is that these "so called" experts, can turn people away, with no further suggestions. Just... not my department! Can't we please have doctors who want to find out what is wrong with us?

If I couldn't get a prescription for enough Mestinon, I would try huperzine-a. It can be bought without a prescription, and it works like Mestinon. That is what I personally would do. It may or may not be safe, so please do your own research.

Because huperzine and Mestinon both work by allowing acetylcholine to build up in your system, it's important to know that if you take them both together, you're risking overdosing. Too much acetylcholine is very dangerous. For that reason, if I were taking huperzine, I would only take it when I had no Mestinon in my system. I have seen huperzine recommended as a supplement for MG without this warning, which is very irresponsible.

Abby

InaGirl, I am so sorry to hear about all that you are going through. I am glad that you have been able to get a prescription for Mestinon, even if the doctors are confused about the diagnosis somehow. I've been lucky about that, too, as initially I wasn't able to get the prescription, even when we already knew it helped me. They really wanted a positive diagnosis.

I've just spent a week in the hospital with something that was something like a myasthenic crisis. I was in the ICU for three days, then on the regular ward of the hospital for four days. I narrowly escaped being intubated. I had five days of IVIG treatment, and made some improvement thankfully, although I hope I'll make more improvement. I see my local neurologist on Tuesday. I hope we can come up with a different treatment plan, so that hopefully this won't happen again. That was scary!

I send out good wishes to everyone here for all that you are facing.

Take care,
Erin

Abby, the use of "alternative" cholinesterase inhibitors, must be done with care. Caffeine is also in that group, but to have a similar level of effect as Mestinon, with Caffeine, would cause far, far more side effects.

I do not know how effective huperzine is, or if it is possible to find a pure source thereof. But it will without doubt have its own list of side effects. So if taking a large enough dose, causes other problems, then it is not really a help.

Just be careful.

juliejayne • just a quick tag-a-long. Should myasthenics avoid caffeine?

Thanks, anyone, for responding.