MG and RSD
 

I have been recently diagnosed with Myasthenia gravis. I developed RSD 25 years ago after foot surgery. It took 10 years to get it under control. In the last 15 years I have had several incidences with a mild re-occurence of RSD that was relieved with ice, elevation and rest.

I was reading that now they think RSD is an auto-immune disease too. Do your doctors consider it an auto-immune disease and treat it with steroids too? Does anyone here have RSD and another neuromuscular autoimmune disease like Myasthenia gravis or MS?

The reason I am asking Is my MG has been getting worse and today, I had the return of the RSD like symptoms in my left foot. I find it hard to believe that it is a coincidence. What is the likelihood of 1 person have RSD and MG? I was wondering If my increase immune response related to MG reactivated my RSD since it may be autoimmune too.

Thanks,
kathie

Hi,

My friend JustDeb, who passed in January, had bad RSD/CRPS following an injury from a blood pressure cuff from a stay in ICU several years ago. :( Deb also had several other autoimmune conditions, so it's not hard to make the leap in thinking that RSD could have an AI component as well, although I'd not heard that before today. Unfortunately, she never really got relief.

I noticed you said you treat the RSD pain with ice. Have you ever been told that ice is contraindicated for RSD? Warm water baths or paraffin treatments are usually recommended, along with other modalities. I think there is a fairly active RSD forum on NeuroTalk.

I would suggest you see a CRPS specialist as soon as possible, so you can get a handle on the RSD. Maybe you can find someone who can guide you more on the AI aspect, too.

Good luck and sorry you have pain again.

Kathie, I know you live in PA but have you thought of a consult to the Cleveland Clinic?

http://www.rsdfoundation.org/en_foundnews2.htm

http://my.clevelandclinic.org/anesth...plex_pain.aspx

It's not like you can push to be more active!

The endo/CNS system is complex and you do need an expert to help you out.

The problem with steroids is that you can actually get a pain syndrome from them and it can get worse when you try to go off of them.

I have a neuropathy in my feet, especially the one that got mucked up in a car accident. Whenever I have tomatoes or citric acid foods (i.e., lemons), that can kick it up.

Anything like MSG, which naturally occurs in foods like tomatoes, can make peripheral nerve pain worse. So can too much B6, not enough circulation, dehydration and so many other things.

Have you thought about seeing a pulmonologist to make sure that your overnight oximetry is okay? It sounds like your MG is getting worse.

Annie

Thanks, I posted on the MG, MS and RSD forum to see if anyone had RSD and another autoimmune disease or if they are treating RSD as auto-immune now. It seems that considering RSD as auto-immune is relatively new and controversial. I just hope that the MG treatment either steroids or thymectomy makes the RSD go away too. It is better today.

Annie, thanks for the info. Yes, the MG is getting worse. I was having a lot of shortness of breath with very little activity. They have added the overnight timespan mestinon and mornings are better now. I still have throat and chest tightness as the doses wear off. But since I am out on disability now, I can control it with a lot of rest.

I have a referral for a pulmonologist and will work on getting an appointment on Monday



thanks
kathie