Amylife

Hi Amy thanks for posting in such great detail. I have all the same symptoms and until I read your posts I lost most of my hope. Hope your doing well , just wanted to say thanks for not giving up.

Continuing from last message:
....Swallowing difficulty is a big first symptom in many people, as is joint/muscle weakness. These disorders can be difficult to diagnose, but are manageable and treatable once found. I know you are going to get another EMG this week and I am hopeful that it will go well. I am going to offer my email to you and if you would like we can correspond that way. It is [email protected]. As always I am sending support and positivity Amy.

Hi Amy,
Thank you so much for the support. I wanted to share something I have come across this week. My Mother stated to me that on my Father's side of the family there was a connective tissue/muscle type autoimmune disorder. Many of them apparently had to have intermittent treatment for it. I started doing research on these types of autoimmune disorders and they carry many of both our symptoms. There is overlap in muscles weakness and pain/lung issues/weakness/neurological inflammation. Many of the lab tests and clinical tests can be inconclusive because of the overlap affect of these disorders. I was shocked to read how many people experienced similar symptoms with no explanation and were unable to get a firm diagnosis despite seeing multiple specialists for long periods.

I'm sorry to hear about your Father in law, stress on top of all of what's going on is overwhelming I'm sure. I am trying to do the same thing, I have seen quite a few specialists in the last month. I am going to a neurologist next week at Barrow Institute in Phoenix. I also am seeing a second Pulmonologist. I am hoping for a different perspective and some different testing. I also have my swallow study next week. No MRI yet, but I will ask the new Neuro to order it. I am finding I am still off balance, can't swallow well, short of breath as always too.
The muscle pain and cramping is constant, and I am finding that my hands just aren't as strong in most things now. I am hoping I get some answers soon. I absolutely understand, I am so glad you aren't willing to give up. I am about to get married next weekend and am trying my hardest to keep smiling and hoping. Sending my support from here Amy.

Hi Amy,
Just wanted to check on you, how are you doing? Any news? I am currently trying to find another Neurologist because I am now having hand coordination and strength issues as well when using my hands. Still progressing. Sending good thoughts your way.

Hi,
Thank you Amy, I am trying to not give up and keep on forcing the issue with medical providers. I'm just hoping I get answers before something worse occurs. I really appreciate the support. I am sending good vibes your way.

I am being sent for the same swallowing test. What was the conclusion of your test once they found there to be issues with swallowing?