Hi, I just had an EMG yesterday as part of a battery of tests for polymyositis. I was baffled because the neurologist did NOT test my thigh muscles at all, only inserted the electrode into the muscles from the knee down (the calves) Then he said my tests were normal and I did NOT have polymyositis. He was very abrupt and in a big hurry and it wasn't until after he'd ushered me out of there that it occurred to me to ask why he didn't test the muscles that were bothering me (I have pain and weakness in my hips and thighs).
Can you share your experiences? I can find nothing on the web to address this, all say that EMG is part of the diagnostic procedure but there are no specifics about what muscles are tested. I just can't believe they can call this a valid test if they don't test the affected muscles! Also all that I've researched says that a normal EMG is present in 15% of PM so he was wrong in that regard.
I was diagnosed with myositis through muscle biopsy. THAT is the DEFINITIVE Diagnosis. All other testing was negative with ME. All labs, EMG/NCS negative. It took a major medical facility who believed in me to not stop at that testing and go further with a muscle biopsy.
If this Doctor your seeing isnt "right" for you, dont stop there. Everyone diserves the best medical care, and it seems this Doctor isnt willing to give that to you. GO "DOC SHOPPING", if you cant find a Doctor to go ahead with a muscle biopsy, then if at all possible get to a major medical facility.
Just dont give up. If you KNOW something isnt right, then you have to push for answers. GOne are the days where ALL doctors do the right thing. Good Doctors are out there, just few and far between. Dont stop with the answers you were given, I was given the same answers you were a little over a year ago.
Please let us know how you make out.
I wish you the best.
Take care, stay strong,
and GOd bless.
I am diagnosed with myositis and polyneuropathy and have nerve damage in all of my extemities. Mine is very painfull with my left upper thigh having sharp burning pain that makes me leap out of bed at night, not to mention sometimes can not move my leg to get out of bed sometimes because movement caused severe pain. They give me neurontin, and methadone , it helps some but I have degenerative back disease and several discs that are candidates for replacement and unfotunately the neurontin causes back pain as a side effect. So I can only take so much. My biggest problem is the doctors in my area dont seem to care about the pain. When I ask what caused myositis and polyneuropathy I just get a blank look and the doc says " could be a lot of things" this dont do nobody any good. They never try to find a better treatment , when I mention discomfort I basicaly just get ignored and told to keep taking my meds and see you in 4 mths for another rushed through 10 min. office visit and $25 copay not to mention the other $125 they see for the ins. co. It helps to vent, just wish it helped more. Hannibal
Mom, what were your symptoms that led your docs to "believe" in you and continue with the testing? Mine are weakness and pain, mostly in my pelvic girdle area and a shuffling, waddling gait that gets progressivly worse with exercise. I am unable to walk normally for any distance and climbing or descending stairs or any kind of incline is very hard. I also have some joint pain in my shoulders (though not any real weakness, other than my arms tire a bit more quickly than they used to when fixing my hair) and now my knees hurt when I squat or bend them deeply. I used to do a lot of hiking and this is a big change for me. My labs were normal except for a urine creatine that was twice the normal high limit.
My PCP is a PA at a family practice and she suspects PM but she was unable to get her recommended rheumy to see me because of my "normal" labs (I also was seronegative for RA, RF, ANA, and AChR) and EMG. Now I'm scheduled to see another neurologist (who can't see me until mid July) but I feel I'm casting around in the dark at this point. I think I can convince my PCP to order up an MRI of my pelvis and thighs in the meantime-- did your doc do this prior to doing the muscle biopsy and was this helpful? And do your symptoms get worse with exercise? Hard to find this info online...
Sorry for not responding sooner but I was on vacation. As I had said, ALL my labs were also negative. Except a slightly elevated RA.
I too was very physical person, and had a very physical job, so I do totaly understand your frustration in that respect.
I never had an MRI of my thighs or pelvis(I have a cardiac implant so No MRI's for me at this point) but will be sent soon to a orthopedic doc for evaluation of those because I too am having real issues with them and still EMG, and NCS still normal dispite possitive muscle biospy. My neuro thinks possible another conective tissue disorder which can happen and may be coming into play now. But wants me evaluated to have my tendons and ligaments checked. Also having issues with my knees where IF I attempt to get down on my knees they have that swollen feeling. And of course have a difficult time getting back up.
My shoulders is where mine started, with severe pain and felt like my arm was broken! Then the weakness started, with as you mentioned while doing my hair or working with my arms over my head. The pain in my shoulders is less now as long as I dont try to lift anything heavy. What I do feel in them is like a swollen feeling, like they are pumped up as though you have worked out, but feels it never goes away. If that makes since. My hips then followed this same process, but the pain issues with them is taken its time going away.
It sounds like the Rheumy that your PCP was going to refer you to is too closed minded and probably wouldnt be a good choice for you. NOT EVERYONE is text book symptoms or testing results..and it seem he may have forgotten that! Thats not what you need.
Hopfully you will have better results with this new neurologist, and at the very least send you to a major medical facility or order a muscle biospy. These diseases can be very difficult to diagnose, and you need a Doctor that WONT quit and will believe in you. Try to push for a muscle biospy as I said that is the definitive diagnosis!
I do recomend you do something which I did when I went to this major medical facility. I sat down, and I typed EVERY symptom I have from my head, to my toes! EVERYTHING! How I "used" to be VERY active, and had a very physical job. I also wrote my concerns of needing to know whether this was genitic in any way for my children, that I had researched until I feel that I would explode, and needed "help" figuring this all out. That I was'nt a "drug seeking" person, and actually believe that when there is pain, its the bodies way of telling you something is wrong, Im NOT interested in masking that, I want to KNOW WHAT it is not just cover up the pain. After that neuro finished reading what I had written, she looked at me and asked, if I felt that ALL my symptoms were related to ONE entity. I replied, probably NOT but I needed help figuring that out. She told me then that they may not be able to find all the answers but they would do their best to figure this out. Basicaly you need to show them YOU are and ADVOCATE in YOUR Healthcare! That YOU are part of this TEAM.
This being a major medical facility she spanned me out to a total of 13 different doctors, GI doc, Pain managment Doc, Rheumy, GYN, Neuro Phsyc evaluation, Neuros, Oto-neurologist, Nephrologist, Allergist, Pulmonologist, Endochronolgist..ect..Covering ALL my symptoms. As far as the Neuro part of it they did the EMG/NCS, then did a test for periodic paralysis, all negative, repeated labs, all neg, went to pain managment, for evaluation, they felt possibly I have suffered from "Deconditioning" given the several surgeries, and injuries in the past year, Rheumy agreed with them. Neuro phsyc evaluation deemed me totaly "sain"..lol and was suprised I "had'nt lost it" for what I had been through. Neurology pressed on, and ordered the muscle biospy, and about 4 weeks later I had the answer to the muscle issues. I was diagnosed with something else totaly unrelated that were causing my balance issues, and ended up needing brain surgery, I was diagnosed with a malabsorbsion issue. Also ended up needing lung surgery for suspected cancer, but turned out to be a rare type of infection called MAC.
There is a saying that seems to fall in MY COURT all the time and it goes like this...Just because you hear hoof beats, dosent always mean its a horse...It just MAY Be a ZEBRA. I happen to be a ZEBRA with SPOTS! Nothing is typical with me, and even the Major Medical Facility has gotten some education with ME...lol
The bottom line is as I have said before.. WE ALL diserve the BEST healthcare, and to be taken seriously. If you are getting no where with a Doctor then Fire them, and Move on! You Have that right! Your PCP sounds like they may be willing to work with you, THEY CAN refer you to a major medical facility if this new neuro dosent pan out. Just DONT give up, you ARE worth it, don't ever forget that!
I wish you the best, and PLEASE let us know how things go with this new Doctor.