Your Replies
-
GH, nope, still no follow up spinal tab, or NCS or EMG!
She is a neurologist. Her reason for muscular disease is that my weakness is more apparent in large proximal muscles than distal. I tried to tell her CIDP is like that but of course she wouldn’t listen to me. I told her my numerous nerve symptoms and she wouldn’t hear of them either. She asked me to walk, tested my limbs’ strength, tested my reflexes (still there), did a blood test. Nothing else. I spent a whole night waiting and nothing useful came out of it in the end.
I still can walk but at this rate I don’t think I will be able to for very long. And I may need to go to ER again if it comes to that.
Just want to give everyone an update:
Went to ER. The doctor tested me and insisted the weakness was more muscular than nerves, despite me telling her again and again and again I had burning nerve pain, numbness, prickling and involuntary muscle twitches, all signs of nerve involvement. She sent me for yet another blood test and of course it came back normal. Shen then sent me back home saying I am just fine and dandy.
So frustrated!! I want to tear my hair out! Except I can’t even do that …
I still can walk but my feet feel so heavy and I am worried that I will develop feet drop soon. My hands are so weak and shaky, typing is hard and my iphone feels like a ton.
Jim-LA, thank you so much for the information. By any chance you know other doctors in Florida (preferably Miami) who is good with CIDP? It’s so hard to try to schedule a timely appt at this point and I would like to try as many neurologists as possible and see if I can get in earlier than end of Jan.
JudithKay1, thank you.
I desperately try to hold on to the thought that life might still be semi-normal. But after reading this forum, I know better. From the posts here (I have done nothing else this past holiday week) I see the deep hardship and struggling faced by the vast majority. Those who do well are far and in between.
Never in a million years would I have dreamed a flu shot would ruin the rest of my life. But here I am. I will try my best to at least stay strong mentally.
Jim, I sincerely hope you can get into the Seattle trial and the roadblock$ are removed.
BTW, could you elaborate why you think the Seattle trial is more promising?
Jim-LA, thank you for the info.
From what I heard, the nw sct is doing very well and I think a phase 3 probably will happen. Just a matter of time. What do you think? Am I being too optimistic about it?
Btw, do you have a link to the Seattle trial? I wasn’t aware of it.
Bob, thank you so much for your post. How I hope I will be able to have some normalcy again.
I would love to know when phase 3 clinic trial of the stem cell transplant will begin. Anyone has any insight?
Thank you everyone for your support.
I don’t know what will happen but I am just hoping there will be some normal life left for me.
I have been reading this site all day today. So many helpful posts.
However, reading the posts, I also realize most CIDP people are struggling and declining despite of treatments. It is scary but I hope I will be strong.
GH, I will definitely find another neuro. I am doing research right now to find one in Miami area who is familiar with CIDP.
I am so stressed out lately that I completely forgot today is Christmas Eve. I really appreciated everyone who is taking time to patiently help me. You are my guardian angels. Happy holidays!
Jim, thank you for the kind words. I truly appreciate your help.
I would love to try the sct but I know I won’t qualify by a long mile. I don’t even have a firm diagnosis yet, very frustrating. I hope the sct will be a success and the treatment becomes available eventually.
Thank you both! I pray one of these treatments will work well for me. if not, I will be looking into the NW SCT.
Thank you so much GH and Jim-LA. You have no idea how much your posts have helped me in the past couple of days. I begin to think I can still lead a near normal life with CIDP.
I will definitely pursue a new neurologist. Just need to know who is the right one. I want to go with a proven doctor/center because I think if I go with a “trial and error” approach with finding the right neurologist, it will likely delay my diagnosis.
Another question: I know there is no Center of Excellence in Florida, but anyone knows a hospital in Florida that’s relatively good with CIDP?
I am in limbo and need a firm and accurate diagnosis.
GH, thank you for the reminder. Just when my career is going well, I have to lose it. What a terrible disease!
Mine is not GBS, but CIDP. Now I am trapped in this situation, having to wait till my tests get worse before my neurologist calls it, all the while knowing early treatment is the best. What if my tests continue to show “inconclusive” for a long time? Will I receive treatment too late? This stresses me out more than anything.