Erica
Distinguished member
- Joined
- Jun 3, 2009
- Messages
- 252
- Reason
- PALS
- Diagnosis
- 07/0009
- Country
- US
- State
- XXX
- City
- XXX
Hi Judy, thank you for sharing your story.
I've atrophy of my arm and shoulder muscles, weakness and positive EMG. Was sent by 2nd neuro to ALS specialist.
Also, have pain on swallowing, pain in the throat and some neck muscle atrophy on the same side as my troubled arm. Been to ENT 3 times within last 6mo, they don't find any ENT problems except deviated septum.
Is it likely to have pain on swallowing with ALS?
Are they considering bulbar ALS with you? Are any of my symptoms sound familiar?
Thank you,Cookie.
I've atrophy of my arm and shoulder muscles, weakness and positive EMG. Was sent by 2nd neuro to ALS specialist.
Also, have pain on swallowing, pain in the throat and some neck muscle atrophy on the same side as my troubled arm. Been to ENT 3 times within last 6mo, they don't find any ENT problems except deviated septum.
Is it likely to have pain on swallowing with ALS?
Are they considering bulbar ALS with you? Are any of my symptoms sound familiar?
Thank you,Cookie.
Haha that is a good one on how I was diagnosed! It all began in 7/08 I could not speak or breath properly after doing some dry wall work, ended up it the er had inhalers all kinds of med. Sent to allergist, ent x4 then to the neuro. My first Neuro sent me for blood work, swallowing tests, tyroid biopsy an MRI with and without contrast 2x. After 3 trips to his office and negative results on my tests with the exception of white spots on my brain. He said I was a medical mysery and sent me for a second opinion thinking I had MS. The next neuro said it was not MS because the spots on my brain were not that of a person with MS and thought I had myastemia gravis and gave me a 2 week med trial and then sent me to a 3rd neuro. The med trial made me worse and was thankful when it was over I can still feel the effects from it. The 3rd neuro looked at all my tests which were all negative to that point but my symptoms were of bulbar palsy so he sent me for an emg which showed a correct diagnosis of the bulbar/als it took 10 months to get to this point. So being one to not accept the final diagnosis my husband called neuro #1 we had the emg results sent to him to read. He said neuro #3 diagnosis is correct but just to be sure he is sending me to a highly known asl specialist or to the Cleveland clinic for a second opinion. I also am getting a lymes test just to make sure. If anything all my doctors that I have seen to date 13 total all have different opinions of what was initially wrong with me. I now know I have allergies at the age of 56, a deviated septum, and now als. Can't even tell how much money went to all these co-pays and medications just to finally hear I have als. So on the bright side I know what I am dealing with and do not have faith in the medical profession at this point except for neuro #1 he speaks to us personally we don't have to make an appointment to ask a questionI am thankful for the ALS forum because I now can get answers before saying yes to any doctors recommendations. I currently take no prescribed meds only chinese and herbal and do stretching in the hot tub. I feel better and have decreased my symptoms in regard to muscel tightness/cramping/spasisity and my swallowing and speech have improved too since starting this a month ago. Well thats the whole story thanks for asking.
Judy