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Old 08-12-2009, 07:05 PM #1 (permalink)
keegansmommy4
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keegansmommy4
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Default new here and very scared!

Hello everyone,

I have not been diagnosed with als but am very scared that i have it. I have a long story but I will try to shorten it as much as possible. i got the swine flu back in april and have been having weird neurological symptoms ever since. It first started out with my arm feeling weak and progressed to my leg within a week. I went to the dr and they stated that I was not weak in any way. I then started feeling twitches all over my body and that really freaked me out so I googled the sxs and of course als came up which scared the u know what out of me because my uncle just passed away from it last SEpt. i immediately went to my dr who told me I was fine but referred me to a neuro to ease my mind. He ended up being kind of a jerk and said taht I am way to young(26) and that there is no way I have als after a clinical exam. I asked for an emg and eventually he agreed and that came back normal. The sxs kept on and would not get better so I ended up seeing a neuro at the naval base (husbands a marine) and based on his and an internists exam they both said 100% no als. I was still scared so I went to the er and ended seeing the neuro oncall who decided to admit me for observation. She did a full body mri and blood work and didn't find much except I do have Chiari malformation which has to do with the brain. Anyway besides some other minor things they didn't think that they were causing my symptoms so she did an emg. She tested the arm that was bothering me and said that she saw a couple positive sharp waves and then redid and changed her mind so she stated normal and no als. At this point everyone is starting to chalk it up to anxiety which I admit at this point was high but because of the physical symptoms that I was having. I called my pcp and she decided that she wanted to send me to a friend of hers that was a neuro who she thought would be great. She was right he was wonderful listened to me and fully looked me over and said taht I was fine possibly fibro. I asked him to do an emg and he has done 3 since last month all being normal and I also had one by the naval hospital that came back normal. granted all these were in my limbs because that is where I was having my problems. Well I have been feeling really weird in my throat are for the last month and a half and chalked it up to anxiety but then I started noticing that my tongue was changing as though it was losing bulk and thinning out. I also noticed that I have been slurring my words but no one else seems to hear it except for one friend and i was crying when I talked to her. Anyway I had the wonderful neuro do a tongue emg and i could'nt get it to relax- it finally did as much as I could and he said that it looked good. Forgot to mention that in the last four months I have lost about 45 pounds but have not been eating very much at all. Fast forward to now- I am still having the twitching my voice to me sounds slurred I have trouble taking deep breaths and my face and neck feel extremely tight and its harder to make facial expressions not to mention it looks as though my tongue is getting smaller and thinner by the day. I am completely fatigued and feel horrible. Sorry so long but my questions are: if I had the symptoms start in my legs and all my emgs came back fine shouldn't it have shown something and if it was bulbar onset then wouldn't those symptoms have started first not the limb symptoms? can anyone explain tongue atrophy? Could my face feel tight from straining it so much by looking constantly at my tongue all the time and could there be any other explainations for these ssymptoms. I am at my witts end my life has changed so much in the last 3 months physically and mentally and I don't know what to do I just want some answers. I kind of feel like the dr's arent taking me seriously becuase I am so young and the tests have come back fine. I have a four year old and a wonderful husband and all I can think about it leaving them. Please any input would be sooo appreciated. I thank you from the bottom of my heart and my heart goes out to all of you as even if I don't have it my uncle who was a father to me did and it killed me to watch him go through it. Thank you so much.
Emma