Reassurance: DId you stop with neuro or demand EMG?
Hi everyone, I am just wondering what level of reassurance you all feel you need to move on with your lives.
Im 45 (female) and have been experiencing weird symptoms since August. Feeling of adrenaline and racing heart stirring in my chest, back of head pressure and aches, "head rushes" where I feel like blood rushing to my head, neck spasms, burning stiff trapezius and neck, facial pains, palate pains, jaw pains, and terrible earaches when the pain comes on, sometimes dizzy and nauseu too. The "attacks" came in waves with palpitations. Neuro sure if they were migraines or seizures. My tongue is also slightly atrophied on one side and it has some pain. About two weeks agoi, I developed muscle twitching (more like muscle jumps and pops) and light toe and finger cramping and a burning sensation down my neck, shoulders, arms and back. Sometimes in my entire head. Like painful sore muscles the next day. No weakness. I also have tingly feelings and pulling sensations in the arches of my feet and balls of feet.
Well, after 6 months of mri's, bloodwork, lumbar punctures, CT scans etc, I google my newest symptoms, and I stumble upon ALS. Thats all I need is another disease to worry about after excluding almost everything else. Ive worried about 5 terminal diseases in the past 6 months. Very very anxious and hellish time.
So I go BACK to my neuro who has been following me for the past 6 months and ask him what about ALS and he says you have had head issues for 6 months thats not ALS, your symptoms keep changing. And I suggest, well what about the stiff neck maybe that is the spascitiy and cramping of ALS and maybe the migraines/headaches and ear/jaw/tongue pain were part of the all over ALS nervous systems dysfunction and bulbar ALS. He stops dead in his tracks and looks at me like Im crazy (I know it sounds crazy) and said "its not ALS." And I said "maybe too early to diagnose?" and he looked at me condescendingly and said, "I don't think so." He would not order an EMG that I requested for my "peace of mind." He said I could talk to one of his colleagues for a second opinion if I wanted.
So what to do? My family thinks I am crazy. They said I should have been doing cartwheels in his office for the reassurance that its not ALS. I feel like he short shrifted me this time (he barely examined me) because its the 4th time I've been to see him but I JUST developed the muscle twitching and cramping. Im sure he thinks Im "one of those" patients now.
I have to say, he is pompous, but he has an excellent reputation and spent over 2.5 hours with me right before Christmas when I really wasn't feeling good. He is uber thorough and has been practicing for over 20 years. Is his reassurance enough? I would not have even thought of ALS but I never had widespread muscle twitching and cramps. As one of the PALS said, I just may have to wait to see how it progresses (not really what I want to hear. not good at the waiting and worrying game, it will consume me).
Could the whole headache thing have been a precursor? More logically it sounds like I just have too much adrenaline in my body from the stress and thats the problem, but theres no way to measure that ....
I also just went on a benzo (klonopin) (xanax) - can they give you muscle twitching and cramping.... i thought they control them?
Do I demand the EMG or should his word be enough for you? He said I see no clinical evidence of UMN of ALS.
