Quote:
Originally Posted by AnnieB3
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 |
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
