Thanks, AL, Cindy, and Beth........ Al you are right, i actually hold back at the doctor's because i do not want to come across as a hypochondriac. When i first was having stiffness and spasms on my left side it was occurring during a time that i kept getting very ill, strep, bronchitis, sinuses etc.. I could not shake them. My doctor thought i had a neuralgie due to chronic mono as the mono virus i got when i was twelve reactivated and cause lymphadenopathy. Then after observation of my body my surgeon said i had muscle wasting. That was the very first time i heard of that. He was sure i had Vasculitis as i was sick all the time also. He referred to me to the best doc at Duke for it. I went to Chapel Hill first because Duke could not see me for three months. Anyways after many blood test Rheumatology and Immunology started doing other tests related to neurology, they then referred me to neurology and that is how i started on that track. MS was ruled out and i was very shocked because by now i had started researching my signs and symptoms. Literally every other thing it could be was checked, lyme, MS, lead mercury toxicity, amyloid, calcium, immunological and even leukemia. The only thing left was ALS..... Which i still did not think i had until i was referred to neuromuscular division after first EMG. Now that i have had abnormal and normal EMG's my neurolgist takes all my signs with a grain of salt, like the development of brisk reflexes, the foot and wrist drop. I was led into neurology by the doctors and not by anything i complained about. Now that i am here they dont want me and they certainly do not want to know about any problems i am having.... They dont say that but i can tell, i am so young and i am a mother. I am like you Beth, i dont have any fight left in me, i gave it to God a long time ago.... My GP says i have a neuromuscular disorder and my neurologist says that i have so many other illness's going on that it is confusing.... Meanwhile i am still getting no help...... The only help i get is from this website......... I never claim to have ALS and nor do i want to, but i cant help that i am having all these signs and symptoms and i rather discuss them here then with my doc... The level of professionalism i am at right now with the whole neurology thing, the docs do not take in account anything you say really, they just want the facts, the tests and what they see.... My neuro did not take the mouth thing seriously until i started developing recurring thrush from chronic dry mouth. My Gp is like, tell him i did another Aids test and i did another immunoglobin test and they are negative! I am so tired of being tested and proving things i dont want to be proven really. This is why i come here looking for answers and validation... I am not looking to be told i have ALS, i just cant help that my experiences are similar and it is nice to talk to people that are going through the same things rather they have ALS or not. When and if my neurologist says, NO you cant possibly have ALS or MND i will let everyone know..... We will celebrate and ya'all can refer me as the girl who chimes in about problems even though she has no business being here!
ps... can you tell i have anxiety about being considered a hypohchondriac!? I have to get advice about a simple question before i bring it up to my doc.... I have never been called or labeled a hypochondriac but if it were not for the progression and some tests then that is all that they could say.... The nuerolgist says, You definetly have medical issues going on, we just dont know what is causing them. I would be happy to leave it at that and just talk on this forum.......because ultimately there is nothing they can do for ALS or myself, because if they could it would have been done a long time ago.
Al, i bet you are the best Grandpa in the world, the way you give advice and take care of so many on here......