what to do?

[myooshka]

Hi to all, I'm at a loss for what to do and I need some advice. I have been ill for 16 months. Despite having, brisk reflexes, clonus that nerologists have commented on and said was from anxiety I have never been given an emg. I have been given mri, spinal tap,and nerve conduction studies. No doctor would believe me something was wrong because I had just lost my parents, was pregant so they kept trying to say it was anxiety, I never heard of anxiety causing brisk reflexes, clonus. I finally found an excellent gp he does not see this major anxiety only worry for my health. He had sent me to the neurologist in Calagary who teaches the neurology students because he figured this neuro would figure out my problem, they ordered all my files it has been two months and still no answer back from this guy for more tests or anything. I am now at the point my hands and fingers are crippling, my shoulders are rounded, my hips feel like they are seizing up, but the most worrysome is my swallowing and now my jaw won't open as wide as it normally does and gets so tired just from talking, I'm concerned because I need things in place if these things go soon. Really I think I have been lost in the shuffle, I've gone to so many doc's neuro's with them telling me nothing was wrong despite showing brisk reflexes and clonus because they didn't know what was wrong. On al's advice I am going to my Dr. and demand being sent to als/mnd clinic. I am at the point I need these resources in place, my family needs answers so we can make decisions. I just am at a loss, does it take long to get into these clinics? Is it my resposibility to research and tell these neuro's what tests to run, why would I not have been given an emg, I don't understand. I am just starting to panic a little bit with the way my face muscles swallowing are getting. Should I walk into a hospital and say someone help me. I'm just at a loss as to the way I've been treated and I need help from people who are trained to deal with the physical issues I'm having.

 

[Peg B]

Hi,

A lot of people have suggested others to go directly to the ALS Center, call them and get a reccommendation. and always take Al's advice. This sounds awful so please do those two things right away. Take Good Care, Peg

 

[crystalkk]

Hi mooshka,

I feel for you I am going through the same thing, are symtoms seem very similar.
I have been told aniexty can cause brisk reflexes also, or too much caffine . I was told alot of women have brisk reflexes by a male als specialist.
I would be calling every day if my drs have taken 2 months and did not get back too me. You need to be demanding this is your life.
And the drs wonder why we are having anxiety.
I always say god for bid it is something treatable and we are missing out because of drs neglect.
I can't believe they did not do a EMG yet.
My problem is my EMG's keep coming back normal.
My ALS specialist keeps telling me my hands and feet are atrophied because of lack of use.
I am a 38 year mother of a 4 yr old and 7 year old I don't think it is because lack of use, when did I stop using my hands and feet. (LOL).
I have had numerous drs say if it's ALS why would you even want to know. Like you say you need to make
a plan for your family.