New and confused

[jlquebec]

Re: Is it ALS?

They tell me ALS is hard to detect BUT in two weeks two doctors have said that I have it. I did have the EMG, and they said it was elevated. I had the shingles in Feb. and since then I have not felt good at all. The shingles are the nerve ending too. BUT no doctor wants to listen to me on that subject. I am scared. I plan on going to other doctors. I am not satisfied with the results.

 

[trfogey]

Re: Is it ALS?

kmendsley, the other post by this person in this forum was originally posted in the General Discussion About ALS/MND forum and was moved to this forum later by one of the moderators. This thread was opened in response to my request that a thread be opened here in DIHA. No double post was intended by the original poster, so no harm, no foul, but it would remove the confusion if one of the moderators could merge the two threads.

jlquebec, could you open a new thread to talk about your situation. It gets very confusing to all when two different cases are being discussed in a single thread.

 

[grandmommyk]

You have every right to your records. However, if you are not up to debating with your doctor for them, just find a new doctor. The new doctor will have you sign a form, and they will request the records. I had this happen once. The doctor was going to charge us an exorbitant fee for the MRIs or something. They wanted so much for each film. The new doctor said when one doctor requests records from another there is no charge. It is considered a courtesy.

 

[kmendsley]

Re: Is it ALS?

trfogey, thanks for clearing that up. Just saw from the forum page of the two posts at different times with different titles, but same description on top. Good idea, hopefully moderator will merge the two.

 

[Vonzuber]

Thank you for merging the two. A newbie mistake.

On the one hand, my current neurologist seems to be taking a slow process and working through alternatives to rule out other diseases or issues that could be causing my symptoms. (rheumatologist, sleep doctor, nerve biopsy, MRI, EMG) However, on the other had, I feel as though the neurologist is perplexed. The last comment was, "Do worry you will be fine." I am not fine, but if there is no cure, what does a diagnose do for me. I am learning to be careful with walking on steps. When I get fatigued, I rest. The fasciculations, random muscle aches, and tremors have just become a way of life. I feel a slow downward progression. Should I press for a new neuro or just wait a another year or two to see how this all goes? My GP is perplexed and has me on anti-depression and sleep medication. It helps, some