Recent content by thatscooper2u2

Still in denial ..... This has been incredibly rough on me as I am sure for everyone. Still holding out hope it's something else as I am not getting worse per say. Can't bring myself to go to clinic, not ready to give up...that's what it feels like.

Thank you Tillie. I am just numb to be honest. Really don't know what to do next. There is a ALS clinic this Friday at my Nuero and I probably should go. He says the first is the hardest to do because you see so many in different states of progression so I am a little scared to go but think...

He is wonderful

Nope not related.

Hey Mart Sorry that we are in the same boat. This blows! I really hope mine goes slow. My son gets married next year and I wanna see that for sure. I hate this sentence and don't understand how I was so unlucky to win the medical rare disease lottery. I am still trying to come to terms with...

I wish we could afford not working. We will figure it out. Just terrified right now.

He did settle on that DX today. I will get the letter and EMG and start working on Medicare and SSN benefits. I am still working so need to figure all that out as well? I make quite a bit so we are in for a lifestyle change I think.

Hi, its me. Got the bad news today from Dr Heitzman in Dallas. I am in shock, was somewhat ready for this but praying and hoping that the lab work would find something else, it didn't. Don't know where to start or what to do next, a day at a time I guess. I am hoping since it seems my...

I saw that some of my labs were back but decided to wait until 12-1 for the neuro to give them to me. I am afraid they may be all normal and the road will become narrower and narrower ( I truly pray it does not). Here are some things happening with me since my last update Right knee ache as...

thank you skipper. It is scary, the unknown but I have to believe its something else, what I don't know but anything else. I really appreciate you and everyone else lifting me up.

Yes, I cant really get by without it right now.

Dr Heitzman. He doesn't say a whole lot, I think because my anxiety levels are soooo high at this point. This is such a scary thing to have over you and not know. Even with the blood work coming back, which I hope they find something there, but if they don't, the road I think may start...

He is running blood work looking for mimicers of ALS to try and rule out that I don't have it. The EMG is abnormal and shows ALS as a concern now. I am praying its something autoimmune or MNN, something - anything other the ALS or PLS. In my favor and what I hold on to: Only in my hands and...

I had 18 tested this past week. I did not answer because I had a repeat emg. He has not shared the report with us yet. Just says it was abnormal and falls within the setting of ALS. I don't know why I am not being told more than that. That's what makes it worse I think. I hope to get the...

I emailed the doctor and he said nothing more then my results were in the setting of ALS and suggested I could have a muscle biopsy in the mean time if my worry was so overwhelming. My test results should be back in a couple of weeks, I think they are trying to see if this is MMN or something...