Has anyone had physical therapy after being diagnosed with MG? My Dr. has prescribed physical therapy twice a week for my legs. He is very concerned about the weakness and loss of muscle in my legs. My concern is how much exertion this is going to take and will that affect my MG? I also have cramps at night in my feet and legs, so will this get worse with the physical therapy?
Mike

I had shoulder problems about 4 years ago and my doc prescribed PT. At first, I had the same feelings you do. However, I made sure my PT knew about the mg and we discussed my concerns. She actually researched mg and drew up a plan to strengthen my shoulder without causing problems with my mg. It worked!

It may have helped that my daughter is a PT and has worked with mg in the past. I called her and found out what questions to ask and how to make sure I wasn't going to have more problems with the mg.

I did about 20 sessions and continued the exercises at home for several months. Here's hoping you get a good PT who will learn what she needs to do about the mg.

Thanks that makes me feel better. I hope I get a PT as understanding as yours. My wife is already on the internet researching. My main concern is the cramps. I may not notice anything during the exercise but that night it may make the cramps worse. Cramps will wake me 3-4 times a night.
Mike

Mike, have you had any bloodwork done recently? Some of the meds that we take can lower our potassium levels to the point that they cause cramping.

Having said that, my doctor prescribed potassium (in the form of Potassium Chloride) for me, and that was when the cramping STARTED! I just went off of it and the cramping went away. (And yes, the pain from the cramping was waking me up at night)

DO NOT increase the amount of potassium you are taking without consulting your doctor, though - too much potassium can be just as bad as too little....

Yes just had bloodwork checked. I am on potassium because I am on meds for fluid in my right leg. I think the cramps might be from muscle wasting.
Mike

I did as part of my back to work program. Like everything else with MG, the exertion will be up to you. Any physical therapist worth going to is going to look into your health issues and concerns and build a program to help you. If you feel you're being pushed too hard, tell him/her and they will adjust for you. Physical therapists are not personal trainers (although I'm sure some do that too) ... they're not there to push you in the same way.

Best of luck.

Brian

This may sound strange, but I put a bar of soap under the bottom sheet near my feet to help keep the feet/leg cramps away. I read about this a few years ago and it really helps.

I had heard this guess I had better try it nothing else works.
Thanks
Mike

Mike, I'm not sure that this is a simple case of muscle fatigue.

First, yes, I've had PT for my MG. It does help. My neuro has PT in their clinic and so they understand NM diseases.

The fact that you have one-sided fluid retention and leg cramps is concerning. Have you gone to your primary doctor about this or only your neuro? I think having some tests done by your primary doctor would be a very good idea.

You can't entirely rule out a circulatory issue. Has anyone done a D-Dimer? You wouldn't be the first MGer to get a clot due to MG or APS (antiphospholipid antibody syndrome). Have you recently had clotting tests (ProTime/INR) done, including antibody tests?

When was the last time you saw a cardiologist? If it has been longer than the time you've had the cramps and one-sided fluid retention, you should see one as soon as possible. The combination of your age (no offense!), the amount of drugs you are on, your MG and probably other factors I'm unaware of, make a cardiac appt. truly important.

One thing some doctors don't think about with hypertension and fluid retention is renal artery stenosis. It can cause hypertension too.

You are on a few drugs, right? Has your primary doctor done an evaluation of what interactions or possible complications you could be having due to them? Has a pharmacist? Any new symptoms should always prompt a look at drugs!

Another reason to see your primary doctor is to get a FASTING chem panel plus a urinalysis done. I think it would be important to get a look at how your kidneys and liver are handling the drugs you're on. They both filter waste in the body. And whenever there is a fluid imbalance, there will be an electrolyte imbalance. They may want to check both serum and urine osmolality too, to see with tests what your fluid balance is up to.

Are you hydrated enough? A lack of it can cause leg cramps too.

I think it's VERY important for you to not assume this is MG - especially with the red flags of one-sided fluid retention plus leg cramps - and get to the bottom of what is causing this to happen first. What if all that massaging of legs helps to send a clot into the lungs? No, I'm not saying that's what is going on! But it's always wise to figure out why something is happening.

I don't know if you want to share but diet is an important issue too. Salt is not good for anyone with edema. We need a certain amount but not very much.

Potassium, which works in concert with sodium, can be an issue, especially if you eat foods high in it before bedtime/at dinner time. It might be a good idea to keep track of the foods you have.

I'm giving you these lists from kidney disease sites because they do a better job of listing foods than most other sites.

http://www.kidney.org/atoz/content/potassium.cfm

http://www.nephinc.com/food-lists.asp

Have you ever gone to urgent care while you're having those muscle cramps? The thing with a symptom that happens at night only is that no one is around to test for it! Have you had a sleep study? They can do ones where they test your blood too.

And I'm wondering if you aren't getting oxygen to your limbs while sleeping. Are you a side sleeper or back sleeper? Have you tried sleeping in a recliner to see if it helps with the leg cramps?

I honestly believe there's more "thinking" to do here. I hope you'll see your primary doctor and a cardiologist to assess this more. Please don't just chalk it up to MG. I hope it will improve. I've had some leg cramps from time to time but I knew what mine were from. It is so painful and it makes it hard to want to sleep!

Annie