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Old 04-08-2012, 04:48 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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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
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pingpongman (04-08-2012)