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