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?


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

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

Thanks again for the info!!
Nanc

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