My husband was diagnosed with Myasthenia 2 years ago. mainly it is just they eye closing that gives him problems. He has been on Mestinon and it has worked really well. 3 weeks ago he went for his check up. All the test results were better than previously and everyone was happy. Suddenly about 3 days later he has had a relapse. Its as if the pills just overnight stopped working. None seems interested in why the sudden change. H has been given a much stronger Mestinon dose to add at bedtime but so far the results are not good, plus it is too expensive for us to keep up permanently. i asked about tests for vitamin deficiency because he often doesn't want to eat but I was told they couldn't justify the test so we would have to pay for it!
Has anyone had a similar problem? Any ideas at all?

Thanks

Hi, Rhod! I'm so sorry that your husband is having a relapse.

When that happens, they need to check out reasons for it. Is he overdoing things, and being too hot (like being outside in the hot weather)? He could have another issue, such as a thyroid problem.

And please school those doctors!!! When an MGer isn't eating well, they can have electrolyte or fluid imbalance. And, yes, nutritional deficiencies. A low B12 and D are common. They should do a comprehensive metabolic panel to see if he has an electrolyte imbalance. That test also looks at albumin, another indicator of nutritional status. CO2 is also checked, and can show a trend of worsening of MG if too high.

Good grief. Do we have to beg for sensible tests?

There is a REASON that your husband is worse. And test results don't mean squat. According to MG experts, a person with MG can have negative antibodies and SFEMG, and be unable to sit up. They can have highly positive antibodies and SFEMG, and be doing well. What is important is how a MG patient feels, not tests. And those antibodies can be busy attacking muscle receptors and not show up on the test (called "tissue bound" antibodies).

The justification for more tests? He is worse, and there are usually logical reasons for that. Duh.

Might be time for a 2nd opinion. OR, go to a primary care physician or internist for basic testing. Was it a neurologist who wouldn't do more testing or a primary doctor? Work the system!

If you have insurance, you should not have to pay for a reasonable test. That's nonsense.

What can I do to help? How is feeling now? Don't mess with a downward trend in symptoms. Is he having trouble breathing? Walking? What are his symptoms?

Please let us know if we can help.


Annie

Hi Annie,
Thanks for your reply. We are still trying to figure out what is going on. The extra Mestinon was giving him an upset stomach and also causing his throat to close up so that he chokes. We have cut it back to half the dose, so he now takes 60mg 3 times a day and 90mg at bedtime. He has improved but I don't really think it is the extra dose doing the trick, it seems more like a gradual settling down and Mestinon usually works very fast.
It's hard to get to see the Neurologist himself, he is the only MG specialist in our area, but we do have an appointment scheduled in a few weeks and I will insist on an electrolyte check. It was his new primary care doc who will not send him for tests but he is quite happy to tinker with his existing medications. 6 weeks before he had taken him off the Potassium that he had been prescribed. I did have my husband take some again for a couple of days to see if there was a difference but without any noticeable change. However I have no idea how long it would take to get your levels back up, maybe 2 days wasn't enough.
Do you know anything about magnesium? There seems to be some controversy about it's use. Strangely coffee seems to have a positive effect if only for a short while.
He has been a bit stressed lately, perhaps more than he lets on so maybe that is all it is. It's just good to talk about it. Thank you.

Rhod, They took him off of Potassium? Why? Why was it prescribed to begin with? Did he have low levels? Did you know that a low level of potassium not only makes muscles weak but can cause the heart to fail?

Someone needs to check a metabolic panel immediately. In a clinic or a hospital.

He should not take magnesium supplements, which can also make MG worse.

You can't solve a problem until you know what the problem is. Find another primary doctor for a 2nd opinion. He needs help right away. This is just crazy!!!

Coffee has potassium in it, as well as caffeine (a cholinesterase inhibitor like Mestinon—to some degree).

That stupid primary doctor, if your husband has a low potassium, could have killed him. Geez, is money more important than health to that doctor?

Please, get him help now.


Annie

He was put on potassium a long time ago after he had a stent put in. All his tests had been normal for years so we have kept using it because he does get muscle cramps.
Earlier this year he had surgery for kidney cancer, he had a kidney removed and the other one is not yet functioning as well as it could, that's why the doctor decided to stop the potassium. It's a tricky balance between the kidney meds and MG meds. His potassium level was on the high side but not above the limit. I don't think the primary care doctor should have been getting involved in the first place, we have specialists for this. My husband liked him but I think he's an idiot. You know he actually told him he would not recover, that he was "on the way out"!! contrary to what the specialist said. He came home and went to bed and stayed there for 3 days. They keep telling you to watch out for suicidal tendencies after surgery and this idiot makes him worse.I got him back to the specialist who sorted out his worries.
The good news is that he does seem to be doing better.

I know all about the lovely associated factors of kidney issues. My Dad had kidney failure/transplant (due to rheumatic fever/high BP). Potassium balance is tricky.

If he hasn't had an ECG and echocardiogram, that would be a good idea.

Discuss the potassium issue with the nephrologist. But having small amounts of potassium in foods throughout the day might help with the leg cramps. Keeping the calves warm will help as well, especially while sleeping. Staying hydrated does too, but the balance is so delicate with kidney problems.

That was a really awful thing for that doctor to say, obviously out of ignorance. No one can tell what the course of someone's life will be. Unless a person has a terminal illness. But MG is not a death sentence.

A BiPap or APAP (newest machine) would probably help him while sleeping. A pulmonologist/sleep specialist could get him one. An oximeter can also help to monitor trends in breathing over time. But go by symptoms most of all with MG.

I'm glad he is better. He just can't overdo physical activities, or become too hot. If he goes anywhere near a clinic or hospital, make sure he wears a mask. Sounds silly, but I got pneumonia just being in a hospital and not touching anything.

I hope things continue to go well. I would still push for those other basic tests.

Annie

Hi Annie,
I just want to thank you for your feedback and support. It really does help.
In my opinion the doctor was just trying to make himself feel important and clever. He's only been in practice 4 years. I did consider making a formal complaint but others have told me that it will be never ending aggravation and we have enough things to concern ourselves with. I will find him a new doctor. His longtime doctor had just retired so we just accepted the replacement.
Meanwhile I will follow your advice. It really has been a hot summer!

Hi Guys!

I don't understand why there is such a reluctancy to put people on Immune Globulin for this, an autoimmune issue. I treated a patient for 7+yrs. with ocular MG. I'm sure it was in her other muscles as she had difficulty swallowing and ambulating.

I am in the early stages of diagnosis of Ocular MG. I am on 60mg. Mestinon x3/day and need more as I wake up with diplopia and go to sleep with it. I am having a CAT scan Wed. to check my thymus. As an infusion nurse I've given over 100,000 GMs of IVIG. I know my way around that drug. It works and he side effects I've seen with my patients have been minuscule.

I will probably reject steroids as I had to take them with my chemo before Stem Cell TP for Multiple Myeloma. I can't hardly stand them! I'm willing to do plasmapheresis.

Annie is so right, you can't make an informed decision without correct information. It is difficult for nonmedical people to navigate for themselves because it is difficult for me, a 40yr+ RN & CRNI, to navigate for myself & this is my speciality.

Wishing everyone here dealing with any medical issue all the best!

Lin