Anyone here with MG and RSD/CRPS??
 

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
:hug:

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.:grouphug:
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
:hug:

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
:hug:

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.

:hug:
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
:hug:

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

I would also ask for your thyroid to be tested. A lot of people with MG and RSD have untreated thyroid issue. I did. I had a partial thyroidectomy a few years before the onset of RSD due to nodules (Hashimotos thyroiditis, another autoimmune issue). I was never put on supplement TSH. Simultaneously with the MG diagnosis, I was diagnosed with hypothyroidism and put on synthroid.

Try not to get overwhelmed. MG is manageable but it does take lifestyle accommodations but you probably are well acquainted having to manage your life around the RSD. Lupus is also common with MGers and anemia (pernicious).

I agree with Annie that you should have your Vitamin D, B12, TSH, T3, T4, ANA as well as CBC with differential and a Chem 20 panel. Stay away from anything with Magnesium, it makes MG worse.

I have MG, RSD (under control), hypothyroidism, anemia and another autoimmune issue not labelled yet. All these disease separately cause muscle weakness. Having them together makes me even weaker. You often need to get them all under control to see dramatic improvement. It is hard for me to figure out sometimes if it is MG weakness or hypothyroid or am I anemic again.

Keep us posted and good luck
kathie

Hi Annie -
I tried sublingial B and they gave me an instant bad headache. What I am doing now does not cause adverse reactions. I cannot take much in supplements, eetc due to allergies and IC. I do not know if my B12 are cyanocobalamin, I will have to check. I do not know what MTHFR is, I will have to look that up.

My PCP in an internal medicine doc, she does majority of my bloodwork, I will ask her about these things when I see her in a couple of weeks. I cannot remember if she or a rhumetologist did the lupus test. I haven't seen a rhum in quite a while...I will have to look back thru my records.

I do have a University dermatologist that I see every 6 months, and have talked to her about this rash many times. She says it is the hair folicles, which is a crock...if you saw it, you would know what I am talking about.

My dr is a urogynocologist. He runs the Female Pelvic Medicine Institute of VA...he is a fantastic dr!! I know they are two specialties, but a urogynocologist is what he is. He completed a dual residency in OB/GYN and family medicine and then did a three-year fellowship at Cleveland Clinic in urogynocology and pelvic reconstructive surgery. He has served as director, asst professor and associate program director at many university hospitals. Urogynocology is not an uncommon practice, and better when dealing with IC and PFD.

I have not seen an endocrinologist in many years, actually it was before I had my hysterectomy in 1996. I have malabsorbion issues, have for many years. My low d, b12 and potassium have been issue for many, many years.

I have researched acupuncture, believe me I have! It is split as far as RSD sufferers and how it has affected them. Many have had spread because of it, some have not. My mother-in-law is going thru accupuncture now and I see the bruises on her. There is no way in the world I could take that chance, it might not be the same as an injectable needle, but it is still a needle...lots of them. And right now, my RSD is so flared up and out of control, I just can't risk it.

Homocysteine or methylmalonic acid tested?? I don't know, doubt it. I will add all of this to the list for my PCP when I see her, and I will talk to her about the stomach acid...and the other tests you mentioned. Thank you for all this stuff to check on...I never would have thought of it all.

Why a low oxalate diet?? Urogyno said that he has found that that works best for IC patients. Said high oxaolate foods create these little crystals that are like daggers continuously stabbing the bladder lining - which is already inflammed and irritated. I have asked him sooooo many questions about both diets and he said that I need to follow them both and eliminate all the "avoid" foods and fiigure out what my triggers are. So hopefully I can add some stuff back.

I am so overwhelmed....whew! I will be happy when this SFEMG is over so I know more. And it looks like I will have a big ol list for my PCP! I am hesitant to jump and make appointments with all these other drs until I know more. I cannot drive any longer because of my RSD so my husband has to drive me everywhere and he works fulltime an hour away from home. I do not have family or friends here to help me out.

Anyway, thank you again for this info. I will research these things you mentioned that I have never heard of. This will help me when I see my PCP.
Nanc

Hi Kathie!
I have had my thyroid tested numerous times, the last time was fairly recent. Looks like I may need to talk to my dr about lupus again...

I will go back and look at my last couple of blood work reports to see what all was checked. Thanks for the tip on magnesium. I have a big bottle of it that a neurologist recommended that I try for my migraines. I had my PCP check my magnesium levels and they were fine so I didn't take it. It is apparently a bladder irritant, so not too good for IC. There are actually a lot of vitamins and supplements not good to IC either.

Thanks for the reassurance, I am getting a little overwhelmed. I will be happy when the SFEMG is over and I know for sure about MG. My RSD is out of control and has been for quite some time. My IC is awful right now, last week and this week have been especially bad. My urogyno thinks that if we can get my RSD a little better controlled then maybe one of the IC treatments would help me more. Did I mention that I now have RSD down there? It is taking over :( I am glad yours is under control :) I am trying to find a new pain management dr and I need a new neurologist (the neuro ophthalmologist is the one ordering these EMG's and my PCP sent me to him).

Thanks for all the info and I will definitely keep you posted!
Nanc

I know what you mean about RSD and needles. I was very nervous when they did the emg and was afraid it would kick off the RSD again. I had to keep my leg elevated for a day and take it easy. I know the sensations that proceeds the RSD pain. If I stop everything, rest, get my leg elevated, takes something to reduce the inflammation and do no activity, I can overt the onset. I still do not want anyone to touch or do anything to my lower left leg. I do not even like to touch it myself or wear socks. I only wear clogs so it is easy to get shoes on and off without having to move or touch my foot. The RSD moved to my backs and hips while I was pregnant, so I understand some of your pain. It took years for my body to recover from my pregnancy. Aqua therapy was the only thing I could do. It is still the only exercise/activity I am able to do with my foot.

You have the strength to get through this. I have to say there is no pain like RSD pain, nothing compares. And if you have managed that, you have the strength to handle MG if that what it turns out to be. Stay calm and try not to stress. I will be sending a few prayers your way.

kathie

Nanc, Thanks for the answers! ;)

I hope this article helps to explain the MTHFR mutation. It's like having a kink in the biochemical pathway of B12. If you don't get the right sort of treatment, you continue to be B12 deficient.

http://mthfr.net/mthfr-c677t-mutatio...ol/2012/02/24/

The sun causing clogged pores? Time to find a better, more knowledgeable dermatologist AND rheumatologist. It seems that you have some sort of overriding "itis" and a cause should be found, as well as solutions (i.e., low oxalate diet).

BTW, They don't know what caused my reaction to the sun, but they thought it might be polymorphous light eruption. The only way to determine what it might be is to have a biopsy of the rash.

Do you have copies of the lupus labs? If not, get them and check to make sure Anti-Ro was done.

I have allergies, too, Nanc, but many supplements are free of most allergens. Was the sublingual B12 you tried methylcobalamin? Did you try a different brand (such as Jarrow)?

Please don't be overwhelmed! I'm sorry if I contributed to that. You have a lot going on, and I certainly know what that's like. Just take one thing at a time.

Did you go gluten free? If not, see if your doc can find someone (maybe ARUP labs) who still does the Reticulin antibody.

I'm really sorry you are so limited in what you can do. I totally get that. It's very frustrating to have a body that dictates your life! I hope you will get answers soon.

:hug:
Annie

Yeah, i was really concerned before having that last EMG. It did cause me to flare up, especially in my face. Did I tell you that I have RSD in my face, hands, feet, shoulders, left arm and left leg...oh, and my girly parts? You are so right, no pain is like RSD pain. I can only wear certain shoes (slip ons) and certain socks...but not always. I bet being pregnant with RSD was rough.

I'd say that 23 years with RSD and all of the other things I have dealt with along the way has toughened me up. Thanks for all the info and support, it helps a lot. Also, thanks for the prayers!
Nanc

Thanks for the link, I will look at it tomorrow when my vision will hopefully be a little better than it is at this moment.

I agree about the drs, but at the moment I am focusing on finding a new pain management dr and a neurologist. Good drs are so hard to find. I have had the rashes covering both arms for several years...hair follicles??? Come on!

I don't think I have a copy of lupus labs, I will have to look thru my records and ask my PCP if I don't.

You know, I cannot remember the sublingual B12 that I tried, been a while. I am super sensitive to pretty much everything I take, or try to take. This makes it a huge challenge for the drs trying to treat me...for anything. You should see the medication allergy list I carry with me...:eek:

I went 100% gluten free around 4-5 years ago. I was tested so many times for celiac. The last GI dr I saw was after I went GF, he said he couldn't do a biopsy at that point because I was already GF, and the biopsy is not 100% accurate anyway. My PCP and I decided to try it and it made a huge difference!

Don't worry, you have not overwhelmed me. You have given me a lot to think about and talk to my dr about. I just have moments when it all catches up to me and today was one of them...very high pain levels too!

It is hard for people to understand, but yes, I am limited...very limited in what I can do. Would like to try water therapy, but have that transportation issue.

Well, I need to try to sleep a bit.
Thanks for everything!
Nanc
:hug:

And my eyes were buggy from having an eye appt. today. And obviously my brain, too, because I forgot something.

When nerves are damaged from a B12 deficiency, and they encounter B12, it's not necessarily going to pleasant.

As nerves heal, they can HURT. Go to the peripheral neuropathy forum here and talk to those guys about the process of healing peripheral nerves. Nerve sensations can be anywhere from paralyzed (can't feel anything) to hypersensitive (nerves overstimulated) to numbness to pain, etc.

So perhaps the "pain" or headache you felt was simply the brain responding to having something it needs.

Annie

Hi Annie!
I have been getting B12 injections for several years now. My PCP checks all my levels regularly. My B12 will go up and we will skip a month or two and it will drop. At last check it was in the middle of the range. I really do not think this headache was related to my B12 levels as it was more that a month since my last injection and I know my level is ok at the moment, but some others might be related. Definitely something to think about and pay closer attention to. I will check out the peripheral neuropathy forum, thanks for the tip.

Nanc
:hug:

Nanc, I think there was a misunderstanding.

You said: I tried sublingial B and they gave me an instant bad headache.

I'll try to be more clear.

If you have the MTHFR mutation, cyanocobalamin shots are doing nothing for you. Your body can't use it. They are not HEALING your nerves and other tissues. B12 is stored in the liver. The cyano is probably being stored in your liver but not helping your tissues.

Cyano needs to be converted by the liver into methyl before it is "sent out" and is used by your body.

That's why I thought you could either have a MTHFR issue or your liver isn't converting cyano to methyl.

And that is why I wondered if the methyl B12 you took caused a headache, due to your body finally getting the B12 it needs to the tissues and causing healing, which can come across as pain.

Is that more clear? I hope so!

Annie

Yes, that was clearer. I completely misunderstood what you were saying. I was thinking you were talking about the awful headache I have been having for the past few days...did I even mention that?? It has been an awful RSD pain day, just awful, so my mind isn't all the way there.

I will talk to my dr about MTHFR. How would I know if my liver isn't converting correctly?

By seeing your doctor! ;)

http://www.els.net/WileyCDA/ElsArtic...-a0002267.html

The body is a complex system of biochemical reactions. Getting B12 to your tissues involves conversion from one thing to another.

Leave all of this up to your docs. I'm sure they can figure it out.

Sorry about the confusion.

Annie

So, now I am really confused. As I told you guys earlier, the first EMG I had for the MG test was abnormal, both times they did it. That is why they sent me for the SFEMG. The nurse called me this morning and told me that the SFEMG was normal and the dr said I do not have a neuromuscular problem, no MG. Well that is great, but what is the problem since the first EMG was abnormal?? The nurse tells me that they send people for the SFEMG if the first test is normal...but mine wasn't. She said she would have to talk to the dr about that. She also told me that dr said the breathing issues would not be related since I do not have MG and that I need to address it with my primary dr.

I just don't know...maybe this is all just RSD and they odd way it is effecting me.

Well, tests can be positive and negative. A negative test is useless, as if a negative proves a positive. Duh.

My thoughts . . .

Go see a pulmonologist. Get concrete answers on what your breathing pattern is. Ask them to do MIP and MEP, and ask for ALL of the MIP and MEP readings, not only the highest ones.

See your internist and have the MTHFR done. Ask to having morning, fasting cortisol and electrolytes.

Consult with a different endocrinologist to assess if there is any endo reason for your potassium levels.

And get copies of the results of both SFEMGs, if you don't have them already.

A negative SFEMG after a positive one doesn't mean that it negates the first one. MG is a clinical diagnosis, backed up with tests. You may or may not have it, but, if you do, you HAVE TO KNOW! It can be life-threatening.

I have positive ACh antibodies. I had a highly positive Tensilon test and dramatic response to Mestinon. I've had an MG crisis where my O2 went down to 66% while sleeping and 70s to 80s while awake. And my SFEMG? ONLY borderline. And I've had MG my entire life, but only figured that out in 2006 (misdiagnosed as lazy eye at age 10). And you don't think doctors can miss MG? Yeah, right. Not one eye doctor even noticed that I had binocular, bilateral ptosis that was fatigable. Not even when I had bad double vision in college—which they couldn't figure out a reason for!

I also have permanent damage to my peripheral nerves from my B12 deficiency. I cannot find specific articles (yet) that address how that might affect a SFEMG. It might, however.

There are a lot of things that can affect a SFEMG: hydration level, body warmth, a technician's experience, accuracy of equipment, bias while analyzing results, etc. Subcutaneous fat of 9mm can reduce an EMG signal by 80 percent. Yeah, 80. Some studies show that men's muscles fatigue more rapidly than women's do, so women might need a longer test.

Trust your instincts. If your muscles fatigue after activities, that would indicate MG. If you have a "static" weakness, that might be from RSD. As you said, it's not nothing and is impacting your life significantly.

I'm really sorry you are going through all of this. What else can we do to help?

:grouphug:
Annie

Who do you see for your RSD? Is it the same neuro that is evaluating the MG? I would ask him what is the cause of your symptoms. Is it dystrophy from the RSD or possible systemic RSD? If your symptoms progress I would ask for a repeat on the SFEMG.

My emg on my legs has been abnormal since the injury that started the RSD 30 years ago.

Some doctors try mestinon to see if it improves symptoms. Responsiveness to mestinon is used as an indication of MG in seronegative patients. Getting diagnosed with MG can be a long process. It took me 2 years. There are many others here that took even longer. There are some here being treated with MG treatments (mestinon, prednisone, IVIG) that still do not have an official MG diagnosis. MG is rare and most neuros have never seen it and will not commit to a diagnosis unless they are absolutely certain.
Hang in there
kathie

Thanks for your reply and recommendations Annie! I really appreciate it. As you can imagine, I am very frustrated with it all!

My PCP (who is also an internist) is gonna run all my "regular" blood work on my next visit. I will talk to her about adding all this other stuff, which I am sure she will have no problem with it. She was certain that she tested me for lupus before, but couldn't put her fingers on it when we were talking. She said she would add it to the next tests when I go back. She did not refer me to a pulmologist at this time because all that I have been through lately, she wanted to see what else the neuro-ophthamologist had to say. If I ask her to refer to one, she will do it for me no problem. We do have a great relationship, been seeing her for around 7 years. Anyway, the info that you and Kathie have given me is very, very helpful. Otherwise I would have no idea what to ask for.

I am thinking that I picked the wrong neuro-ophthamologist. I was given two names to choose from (from the ophthamologist I saw first). I think I should have seen the other one. I heard great things about him AFTER I saw the other one :( I guess I could still go to him for a second opinion huh?!? I do not have any of the test results, but I will get a copy. The dr's asst called me just after the SFEMG dr finished dictating the report. Again, I will get a copy of everything. I like to have all of my medical records because of being on LTD and SSD...easier to update them when they request and easier when I need to go to a new dr.

Anyway, you are right! I do need to trust my instincts. I am also trying to pay closer attention to things and write them down so I don't forget. Like how easily I get fatigued, how do I feel after so much time standing or doing something. I was moving dishes, etc around in the kitchen cabinets last night, you know rearranging things, and after just a minute or two of having my arms up reaching just a little, I could not do it any longer. They were so friggin weak. My PCP wants me to keep track of the breathing issues, like what I am doing, what position I am in, etc.

Well, so much typing...need a break. Thank you again!!
Nanc
:hug:

Hi Kathie! Thanks for responding. I was hoping that you and Annie would see my post :)

I am looking for a new pain management dr, the last one I was with is useless! He moved to a new practice and changed drastically. He doesn't have the same care and compassion he used to. He was a physical pain and rehabilitation dr (and spine guy). He was the one that implanted my two SCS's and I got someone else (neurosurgeon) to remove both of them in January. I do not really have a neurologist at the moment. The one who sent me for MG EMG's is a neuro-ophthalmologist. I saw a neuro in that practice in the past, well she was a NP, and she got really mean so I didn't go back. I switched to the Medical College here (MCV/VCU) and LOVED the guy I saw there, then his residency ended and he left. The guys I saw after him were horrible, idiots and they will not put me in with who the first guys recommended or an attending. So, I need to find a new neuro too.

My PCP wants me to ask this neuro-ophthalmologist that I saw if it is not MG, then can my RSD be causing this problem with my eye. Will the RSD affect the nerves so much that over time it will cause my eye to be so weak and droop? She told me "you ask him that because I want to know!" I saw her yesterday morning and the RSD in my face was flared up, my face was more swollen on that side and my eye was drooping. She hasn't seen my eye like that much so I showed her pictures on last visit. She agrees that something is definitely going on, we need to find out what so it can be treated accordingly.

I have been thinking about that IVIG stuff. I see that some with RSD have benefited from it as well.

I have a question - do they check numerous areas when doing the SFEMG?? This dr did two spots on my forehead. It was on my right side, which is the drooping eye side and the RSD side. It was hell!! OMG - torture!! My RSD flared up instantly, big time!! I cannot imagine having that done again :eek:

Thanks again for the info!!
Nanc
:hug:

Nanc, If you pull up on the droopy eyelid for ten seconds, does your other eyelid then droop while the droopy one goes up? If so, that's called "enhanced ptosis" and is indicative of MG.

A GOOD neuro-ophthalmologist will look for things like that!

Why are some doctors so dense?

Annie

I will have to try that and let you know! I am just not too sure about this neuro-ophthalmologist I saw! I seem to have a special gift in picking the worst drs, the wrong line in the grocery store, all things like that. It took me a long time to find my PCP, love her! I wonder how some of them even graduated from med school!

It took me 3 neuros to find a good one. DOn't get frustrated and give up. You know your body best.

My MG has already started to flare with the heat. i know you are in a cooler area, but are you worse in the heat? Do you get weak in hot showers or standing over a hot stove? Does an ice pack make you ptsosis better? These are all indicative of MG too.

kathie

I am trying not to give up, but these idiot drs make it so difficult and frustrating.

The heat is very hard on me, most definitely, I have zero energy when it is hot. The heat from the stove bugs me too, but I don't cook a lot because of my RSD in hands, arm, shoulders, feet, etc. A hot shower does take a lot of me...never really thought about that before. I never put ice on my eye since I have RSD on that same side of my face and ice is a no-no with RSD, it is one of the worst things you can put on RSD. That is why I have been hesitant to try the ice on ptosis test.

Sorry, I forgot you had RSD in the eye. Yes, ice is a definite no-no. I had to take a break in the specialist rounds and redirect my approach to get a diagnosis. I know how frustrating the rounds of undecided doctors is. You might try suggesting to the neuro-optomologist to try mestinon to see if it helps. Many doctors do this an aid in confirming MG. I am sure the RSD symptoms are complicating the diagnosis. Try to hang in there.

Sending prayers your way,
kathie

I am scheduled for a follow-up on June 13 and will talk to the neuro-ophthamologist about the mestinon. You are right, my RSD symptoms do complicate things...they like to just chalk everything up to RSD, as do I, but we can't really do that.

Something odd happened yesterday morning when I took a shower. My husband showers first and it is pretty hot when he finishes, I usually adjust the temp when I turn it on but this time it got a little too hot in the shower. All of the sudden I had zero energy and had a hard time catching my breath! I could barely finish my shower. Once I finished, I had to sit down (luckily we have a bench in the shower) and open the door to let some cool air in. I had to sit there for a while before I could even dry off.

The night before that, we were at the store and I got hot and had to sit down, it was like I just couldn't go. Weird feeling...

MG will do that. Before all the MG meds, I would be very weak and breathing very heavy after showers. If I washed my hair, it would take 2 hours to recover from the shortness of breath. So now I only was my hair once a week on my day off. I bought a Coleman watch, it measure the temp with the time. that way I can monitor the temp where ever I go, sometimes you don't realize how much heat you are exposing your body too and with MG you will pay for it later.

good luck
kathie

I read lots of comments about heat affecting MG. But what sort of temperature are we talking about. Yes I need a rest after showering, and it takes me longer to get dressed, resting, in between each sock etc. than it takes to shower.

But the shower is not that hot. Outside, in this country it is rarely over 25C. But if it reaches 30C, I enjoy the warmth, but my breathing becomes worse and I feel fatigued.

The same thing happened again this morning when I took a shower :( But I know it wasn't as hot in there as it was the other day. That is a good idea about the watch, didn't know they made those. Unfortunately I cannot wear a watch...or necklaces, or rings, or bracelets. Bums me out with RSD everywhere, the only thing I can wear jewelry wise is earrings...my husband likes it only because I never ask for jewelry anymore :rolleyes:

My shower was around an hour ago, I am sitting in the recliner now and my right eye is droopy and blurry. I don't even fell like eating breakfast. I really need to find out what is going on huh??

OK, I am just a little angry at the moment. I went to pick up my records from the neruo-ophthamologist office, which includes my first (and only) visit with him and the EMG and SFEMG (two different drs).

What angers me is the first guy's notes. He noted in there that he reviewed the cell phone pictures that I was advised to take by the previous ophthamologist I saw, to document the ptosis. He noted "they reveal variably open or completely closed right eye. When right eye closed, RLL up and RUL down as though actively closed rather than passive pttosis." That, to me, sound like he is saying I am closing it myself...REALLY??? Why would I do that?? You know when you are taking a selfie, there is an angle to it too...Then there was just a bunch of misstated mess in there.

I have no clue how to read the actual tests, but the first EMG where the dr told me it was abnormal put in the records as his impression: "this abnormal study demonstrated significant compound action motor potential decrement upoon repetitive stimulation of the right spinal accessory nerve. The study failed to demonstrate decrement of amplitude. The study is consistent with a diagnosis of a neuromuscular junction defect however single-fiber is suggested." The interpretation on the SFEMG is: "This is a normal single fiber EMG of the right frontalis muscle. There is no electrophysiologic evidence to suggest a disorder of neuromuscular transmission."

Thanks for listening...just so frustrated right now.
Nanc

Nanc,

I am very sorry you are going through such unscientific doctoring. A negative SFEMG does not negate the positive EMG/RNS.

It helps to learn exactly what a diagnosis of MG looks like. ;)

http://neuromuscular.wustl.edu/mtime/mgdx.html

Maybe you should print the page out and give it to your docs!

So, they only did the SFEMG on the right side of your forehead. Wow. They didn't do your forearm or shoulder? They should have done at least the area that was positive the first time! Geez, guys, what are these doctors thinking?!!!

What that doctor is describing is ENHANCED PTOSIS! He doesn't even know what it is. When you pull up on a droopy eyelid, it then goes up while the other side goes down. It can seesaw like that for a bit. So, his PERCEPTION shows his ignorance, and your REALITY is a sign of MG.

I'm angry for you. You more than likely have a disease that is serious if not treated appropriately or soon enough. They're approaching your situation unscientifically and keeping you from treatment.

Do you think you can find a neuro for another opinion?

I'm really sorry, Nanc. There's no excuse for this shoddy doctoring.

:hug:
Annie

Hi Annie!

Thanks for your reply, I will print that info out. I plan on seeing a different neuro or I guess, neuro-ophthamologist?? I do have the name of another one that I can call. I am canceling my follow-up appointment with this idiot, not gonna waste any more time or money on him.

Yeah, the dr only did the SFEMG on the right side of my forehead....he stuck me in two spots there and that's it!

I have been trying to pay close attention to what is going on with me, physically, symptomatically, and I have noticed all this weakness and more breathing issues. I do not know if it is MG or what it is, all I know is that I do need to know what it is.

WHY do these drs have to be so friggin stupid??? This first appt with this guy lasted like 3 hours. HE was 30 minutes late getting there. I had a 8:00 am appt and of course had to arrive at 7:45. They called me back at 8:00 and my husband said he saw him arrive at 8:30. Then he took a while getting into see me and took FOREVER typing up everything. My notes are ridiculous. There are all these "quotes" that he put in there...she stated "..." So bizarre!

Sorry for my little rant there...I am just so over this guy...ugh!!

Nanc

Two spots? Well, that was the second mistake. He was obviously not well-trained in doing the SFEMG. I have so many areas on my forehead that got stuck, that I now have "damage" in those areas, showing up as tiny bumps. Electromagnetic fields that are "manmade" can kill cells.

You obviously have symptoms of MG, plus positive signs and test results. Don't lose faith in your instincts.

I feel your anger. Been there.

Annie