Doctors Have Dismissed My Symptoms - Please advise!!
Hi ~ well had the EMG/NCV and it showed nothing. Brain MRI clean. Bloodwork is getting back within normal levels with only a slightly elevated Sed rate.
I have twitches or tremors or fasciculations or all of the above! I swear I do! I see them, I feel them and my friends and family see them as well. This is real. Of course it could be from my meds, which is something I am currently pursuing; however - how can the emg/ncv come up clean?
I smile and my face twitches. My legs jump around like crazy when I am applying pressure to the area below the toes, either sitting or standing and no matter how I try - I can't get them to stop! My hand has obvious fasciculations outside the pinky finger and sometimes those muscles tense for so long that they hurt and burn and I need to rub them.
I get random twitches from left leg to right leg to upper body to even my private areas where the muscles all contract and jerk. I feel these bubbling sensations that last about 5 seconds under my skin around my thighs and ankles and it is starting now in my rib cage and left arm. My legs can tremble so much at times that I cannot walk down the stairs without holding on for dear life. Sometimes my hands tremble so much the food flings off the utensils. These things are intermittent but they are really happening - this isn't just in my head!!
If I try to bend over and touch my toes - my spine ratchets like a cogwheel as do my arms, legs and every other joint; however they do not cogwheel on PASSIVE movements, so I can't find anything on the web about that. If I stay down near my toes, my legs and back begin to tremble with such velocity that I fall over.
In EMG test, doctor did small neuro exam and asked me to walk heel to toe. I couldn't get my leg to go forward as the other leg was shaking so badly I couldn't support myself. I finally did it and fell over once I reached the position. I asked him why my muscles trembled so much upon use and he looked dumbfounded but callously dismissed me because the tests showed no tremors of fascics on the test. In fact, he only did a partial test because early on he decided it was going to prove to be senseless.
Yet, neurologist yesterday did not test ANY of my symptoms other than having me draw a spiral on a piece of paper to note that I wasn't trembling. I had a good day yesterday - I didn't tremor. Now I look like a fool. He sent me out suggesting a sleep study test. I came home and wanted to punch my fist through a wall after all these pokes, prods and tests that show nothing when something is there! I can't believe the neuro didn't do any of the tests that I thought he would do. Some Resident tested my strength and looked into my eyes and said everything looked good.
I questioned if it could be BFS (benign fasciculation syndrome) or Essential tremor, (as I think that is what my mother may have had) - they looked at me as if I were insane claiming the EMG/NCV shows NO SIGNS OF TREMOR, so I couldn't possibly be having them. I couldn't demonstrate any of my symptoms as yesterday, as I said, was a good day for me with little or no tremor. (so it can't be stress related because just seeing doctors wigs me out!)
I asked if my blood sugar could be dropping or blood pressure and they laughed... yes, they laughed - and held up my blood results from my pcp claiming that all looked good. Heavens to Pete - what is the deal here?????
I don't get it. This isn't just some figment of my imagination and as much as I would love to chalk it all up to being some demented hypochondriac, the symptoms come upon me and I know that they are real. Confirmed by others as REAL.
What should I do? I cancelled the appt. with my pcp after the neurologist because I was just so ticked off. I mean, why continue this if no one is going to help me find an answer? Why keep forking out the co-pay that I desperately need if I want to even dish out menial christmas cards to my family, as I am broker than broke. I am sick of this. I am just furious!!
Please, please someone - if you have ever had this happen and had a diagnosis... please share with me.
Last edited by peanutgal; 12-08-2004 at 12:55 PM.