Hello All! Was just wondering if any of you have both MG and RSD/CRPS? How do you handle and treat both? Do you know if there is any relation between the two? I have had RSD/CRPS for a little more than 23 years. I saw a neuro ophthamologist last week because of my right eye drooping and vision problems in that same eye. He sent me for an EMG, the result was "abnormal" and next week I am having the single fiber EMG (I think that is what it is called). It is looking more and more like MG and if it is, I need to learn more about it. Any info is appreciated.

Thanks!!
Nanc

I do, I do!!! I developed RSD 30 years ago after a fall down the stairs. It was mostly the left foot, but I did start experiencing the pain sensation in all my extremeties (not as bad as the foot) and dystrophy on my left side. I spent 10 years making the rounds of specialists, meds and treatments. i finally found a neuro who put me on Tegretol high dose for 6 months, I could barely function, but when I came off 6 months later the awful vicious cycle of constant pain was gone. My foot was dystrophied. I was never able to ride a bike, run or walk far since, but most days I am pain free and do not walk with a limp. Fast forward to 2 years ago, I woke up after a hysterectomy with a retrocele and cystocele repair and have never been the same since. 9 months later I was diagnosed with MG by SFEMG. It has steadily progressed despite immunsupressants and affects all areas of my body including my breathing. I have since researched it and know they think RSD has an autoimmune component too. MG controls my life and since my mobility is so limited, it does not kick off the RSD too much. The only exception is the summer heat. I need to stay out of the sun and heat and rest and keep my legs up or the MG and RSD will both exaccerbate. I also have autoimmune hypothyroid and another autoimmune thing going on which no one has put a name on that include skin rashes, anemia, muscle, joint and nerve pain as well as severe diarrhea. Not so much fun right now. I am on 20mg prednisone, 2000 cellcept and around 720 of mestinon a day. I work full time while working partially from home, taking a lot of sick days and the occasion disability leave.

Sorry you are going through this too. Let me know if I can help.

kathie

Thanks for your reply Kathie! Sorry you are dealing with all this mess! As I am researching MG, I am realizing that I have had many of the symptoms and didn't know what it was...like choking, difficulty swallowing and breathing, fatigue and this is on top of my drooping eye and vision issues. I was really chalking it all up to RSD.

Six months ago I was diagnosed with interstitial cystitis and pelvic floor dysfunction. I have some other issues going on too. Now possible MG too?? I will have to look up the meds used for MG. I cannot tolerate any of the meds used for RSD/CRPS or IC. Yeah, I am a little bummed today. I stopped working at the end of Dec 2012. I am on LTD and SSD, thank goodness, because there is no way I could work!

Can you tell me more about the SFEMG? I am a tough person, but the EMG yesterday made my face (RSD) flare up big time. That EMG was only done on my right side. I am a little concerned about the SFEMG because of my RSD...I have it in my face, hands, feet, shoulders, left arm and left leg. How does the SFEMG differ from the first one they do?

Thanks a million!
Nanc

I think my MG actually started when I was pregnant 17 years ago. It is very common with women to start with autoimmune issues when they are pregnant. The theory being the baby cells sensitize you. I ended up with terrible hip pain and weakness, they chalked it up to sciatica. It took years to get my leg strength back and had intermittant MG symptoms ever since, misdiagnosed as stress, fatigue, depression, etc. When I had the abdominal surgery, MG hit like a ton on bricks. Gynecologist thick the pelvic floor prolapse with herniated bladder and rectum was actually the MG muscle weakness in retrospect. Maybe you are experiencing similar issue.

When the MG started, I actually thought it was the RSD returning. I am having a lot of autonomic dysfunction too. Don't know if it is another autoimmune disease or the RSD. Rheumotologist, gastroenterologist, neurologist and primary DR think it is another autoimmune issue. They ran a bunch of other antibodies and all are negative. Sed rate and CRP are high. I was wondering if it was systemic RSD. I have constant tinnitus, rapid bowel transit, dizziness and off equilbrium, i get tingling and stabbing pains, red rash on my face, fevers, you can see every vein and capillary in my body. I am getting the flushed face on and off all day with fevers. It looks like a butterfly shape and I think everyone was thinking Lupus. After speaking with you, I am almost convinced it is the systemic RSD.

The EMG was brutal. I remembering having dozens of them 30 years ago when they diagnosed the RSD. THe good leg would be fine, some tingling and buzzing. The bad leg was like being tortured by electricution. The SFEMG was not as bad as the emg. I do not think it is near as much voltage, or at least it did not seem so. It did hurt, but the area affected was so much smaller. I tried to meditate through it, my coping technique with the RSD.
They did the SFEMG on the muscle under my eye on both side. It is like an emg but every thing is smaller and they use a single isolated muscle and repetitively stimulate it to see a decreases response. They do not up the voltage as with the emg.

I could not tolerate any of the RSD meds. Thank God Tegretol got my RSD in a stable state. I do not think anyone with RSD really goes into remission. They usually start with Prednisone and mestinon for MG. Prednisone should help the RSD. Do you have the muscle fatigue with the MG. Mestinon does give some short-term symptomatic relief. I have all-over muscle weakness and get the chewing, swallowing, choking and breathing issues. I have a bipap machine to help with breathing at night. I am not sure how much longer I will be working, but I would bet not long.

What symptoms do you have with RSD in the face? I have the red rash and flushing, fever, sweats. Sometimes my face goes so white. I have buzzing and electric zaps and intense itching on my face. My eyebrows have almost fallen out. In fact most of my hair on my body has fallen out except my head. My hair was getting very thin on my head, but then when they put me on cellcept and that stopped.

Good luck with everything. And ask any questions if you are scared. This is a very supportive group. They are the best.
kathie

Thanks again for the info Kathie!!! That is very interesting about the pelvic floor. If it does turn out that I have MG, I will certainly tell my urogynocologist right away!!

I also have constant tinnitus...it is awful and annoying! I do have muscle weakness, but always thought it was RSD. Like we would go to out to run a couple errands and after the first store, I am exhausted and done, can't make it to the next store. I do have a walker (one with wheels and a seat), that helps me out. I do get easily fatigued! I kinda pushed the issue with my PCP because of my right eye drooping so much. I took pictures on my iphone and showed her, she finally got that it was a problem! She did the blood test for antibodies and it was negative, but after seeing the pictures she wanted to pursue it further. The ophthalmologist and the neuro ophthalmologist both told me that the blood test is only 50% accurate. I have a rash all over both arms, it has been there for at least a couple of years, nothing will get rid of it. My neck and face break out in rashes a lot! I do not get fevers though. I have GI issues and lose my balance often. Several years ago, I was diagnosed borderline gastroparesis. I tested negative for celiac, but cannot tolerate any gluten at all!

When the RSD in my face flares up, aside from the pain, it swells and gets flushed. Oh, it also is sensitive to touch. Glad Tegretol helped you, that is one I cannot tolerate. I cannot tolerate prednisone either, well I can take a tiny dose for a couple days and then that is it. One of the things it does is makes my heart feel like it is gonna jump out of my chest. I had to stop getting nerve blocks because of the bad reactions to those steroids. Talking about hair...ugh! Mine is growing and way too much everywhere

I have had many EMG's in the past too, they are truly brutal! I am happy to hear that the SFEMG is not as bad!

Thank you again for talking me through this. I am at a loss right now and you are shedding new light on some things.

Nanc

Happy to help. You are also shedding light on what all my DRs thought was my other autoimmune issue, which is looking more like systemic RSD ( now thought autoimmune too).

I could not tolerate the nerve blocks either, but do fairly well with prednisone pills. It is a quick fix when my MG gets bad.

I am double seronegative MG, that means ACHR and Musk antibody negative. But there are a lot of newly discovered antibodies that are associated with MG, like LRP4, rapsyn, titin, actnin, ryanodine, striational, VCkc, and VGCC for LEMS. Don't think because they tested 2 antibodies, that you don't have MG . There are not any commercial test for them yet, except if you go to a large research hospital like Mayo, and John Hopkins. My SFEMG was very abnormal so none of my neuros have any doubt about MG. I also respond well to Mestinon. Before Mestinon in the morning, I have no bladder control, and my right side of the face is so droppy, almost stroke-like. 20 minutes after taking Mestinon, my smile is back and I am much more functional for 3-4 hours. I time all my activities around my mestinon. If you do not find a good treatment plan with your local neuro, go to a large teaching hospital. Most neuros have never seen MG. Be careful with the breathing issue. Ask your primary for a pulmonary evaluation. I use a BIPAP at night. If the breathing get really bad, get to the ER ASAP and let them know they suspect MG. There are a list of meds that MGers should not take that you should carry with you. There is a lot of useful info on the MG of America website and MDA. MGers are included under the MDA umbrella.

Keep me updated with your progress.
kathie

Thank you, thank you, thank you! Kathie you have given me so much great info and it is so much appreciated. Not only have you helped with MG, but you have me thinking about systemic RSD as well. I really need to pay closer attention to ALL of my symptoms.

I will pay closer attention to the breathing issues and talk to my PCP about the pulmonary evaluation, I see her in a couple of weeks. I will also look up those meds and other info on the MG of America website.

I will keep you updated! The good thing is that I will have this SFEMG next week, before I go back to my PCP.

Hope you have a great weekend!
Nanc

Nanc (and Kathie), I don't have RSD/CRPS. It must be very difficult to live with.

I have heard that some people are having relief from biofeedback.

http://www.mayoclinic.org/diseases-c...t/con-20022844

Nanc, Some of your symptoms sound like lupus. Have you been seen by a rheumatologist or been tested for that?

There's a level of inflammation with RSD, too.

Anything that adversely affects the nerves (central or peripheral) has the potential to affect MG. It's not as if you can disconnect one system in the body from any other.

Have either of you tried adjunct therapies such as acupuncture? Revamp of your diets? Have you spoken to any Eastern medicine practitioners?

http://www.rsds.org/pdfsall/acm-2010.pdf

This is a short video, but one thing they briefly touch on is staying away from things that increase any nerve/RNS sensitivity, such as caffeine. The doctor on the show is Joshua Prager, MD from UCLA.

http://www.youtube.com/watch?v=kkUVGKUAc8w

I think when you have something like RSD, you really need to pull out all of the tools possible. Certainly do not give up hope!

Also, have you been fully assessed for oxygen saturation at night? A BiPap can help but you really need to know if your oxygen is dropping at night. A pulmonologist can do an overnight oximetry (done at home).

Since you're gluten sensitive (or possibly have CD since they dropped the Reticulin antibody test!), have you been tested for any deficiencies? Iron, calcium, B12, D, zinc, etc.?

What questions do you have about MG? Or do you want to wait until you know you have it? If you do have MG, try not to let your body get hot, since that will make MG worse. Extremes of cold can do it, too. If you can't breathe well, swallow, or move well, you should go to the ER.

I think it's important not to chalk up any new symptoms to the RSD. As so many of us know, you can have multiple problems at one time!

It's the hormone changes during and after pregnancy that can affect the "neuro-endocrine" system, as they now like to call it.

This is a very complex issue, so I hope you both have good doctors helping you. It sounds like you do.


Annie

Hi Annie!
Thank you for your reply and info! I have not tried biofeedback yet. My PT for my pelvic floor dysfunction was going to start that next for me, but I had to take a break from PT because of having both of my spinal cord stimulators removed in January. They are hiring another PT so hopefully I can get back into it, at least for that part. If it works there, I thought I could try it for RSD as well. I am not able to drive so my husband has to drive me and he works an hour away from home. Transportation is an issue right now. I am not going to even try acupuncture. I have thought about it, but when a single needle stick can cause RSD to spread, it is not something I am willing to risk (especially when the RSD in my upper left arm was caused by venipuncture injury).

I was tested for lupus, lyme's, fibromyalgia, etc. Interesting fact about the CD antibody test, did not know that. I have been tested for CD, well I don't remember exactly how many times, but it has been a lot. I went GF several years ago and noticed a huge difference! My PCP checks levels pretty often - I am severely deficient in vit D. I am also low in potassium and vit b12. I take D drops, potassium supplements and get b12 injections (in my non-RSD upper arm). I cannot get out in the sun, I break out in a horrible rash even with a few minutes exposure. It is not caused from any meds that I take or have taken - we ruled everything out.

In addition to the gluten issue, I am deathly allergic to pork, fish and shellfish I have interstitial cystitis and gastroparesis. All of this limits my diet incredibly!! My urogynocologist has me following the IC and low oxalate diets - boy is that tough!!!

I am certainly trying not to chalk up everything to RSD any longer. And I am trying to pay more attention to my symptoms. I will definitely follow yours (and Kathie's) advice on when it is important to go to the ER and what to discuss with my dr (oxygen, etc).

I am sure I will have more questions, but will wait until I know for sure. If I do, then I will need to find a good neuro. I have a great PCP, but need a new neuro and pain management dr (working on that). You would think that being in a town with a medical college/teaching hospital, that there would be some great doctors...not so much!

Oh, I have never been pregnant. Unfortunately I had a hysterectomy and o-rectomy (EVERYTHING removed) when I was 29, I am now 47. I know that is a huge hormonal change...that was when I developed all those food allergies.

Thank you again for the info and links, I will check them out later today.
Nanc

Nanc, Boy, do I have questions!

First, you do NOT have to have B12 injections. You can take sublingual methylcobalamin daily, along with folic acid. HOWEVER, if your doctors have not tested you for the MTHFR mutation, they should. If you have it, depending upon if you have one or two copies and what gene, that will depend upon what you supplement with. It's a common mutation, and can affect what type of B12 you can absorb/use.

Are the B12 shots you're being given cyanocobalamin? If so, and you have the MTHFR, you might not be getting any B12 to your tissues right now!

Lupus waxes and wanes, as do the blood tests. FYI. Did a rheumatologist test you? Do you have copies of your labs?

You should find a dermatologist at a University. Make an appt. and discuss the rash. Develop a rash and get a biopsy. There is a lot they can tell by doing that! And they might want to do an immunofluorescent test to see if it is subcutaneous lupus. AND they might want to rerun the lupus tests. SCLE is not as easy to diagnose, that's why you need a dermatologist. Did they do the Anti-Ro antibody test?

Do you mean to say that you have a gynecologist who is also a urologist? They're two completely different specialties. I hope you don't have a gyno acting like a uro!! Not ethical.

Have you been evaluated by an endocrinologist? A low potassium would prompt me to see one. Or do you know why it's low?

Acupuncture is not the same situation as an injectable needle. At least research it. It might sound counterintuitive, but it helps to realign the abnormal nerve reaction.

I cannot stress enough that you need to have the MTHFR test. Have they tested your homocysteine or methylmalonic acid? Either or both can be increased if B12 is not making it to your tissues.

And since you are 47, you might be running low on stomach acid. It is thought that many allergies occur due to undigested food/proteins. The body doesn't recognize the proteins that aren't broken down and might see them as invaders. I haven't had any more since figuring out that I had no stomach acid for along time (I'm 55).

Undigested food basically rots in the large intestine, creating inflammation, etc. and can lead to a leaky gut, causing even more immune problems.

I suspect why, but why a low oxalate diet? Did they give a specific reason? Have you gotten kidney stones?

Sorry for the onslaught, but doctoring is about how you think about what's going on, and questions are very helpful.

I really hope you get more answers soon!

Annie