Reply To: Droopy Face!
PattyO: WOW it is great to hear you say all of that!!! TO hear someone who has been diagnosed as CIDP with so many of my symptoms brings my anxiety down a lot! You mention your three boys.. it’s my kids and me wanting to be there for their futures that makes me fear ALS so much.. among many many many other reasons of course! the hot water thing is so simliar to mine as well!! So why did one dr think you should continue to get tested for ALS? Did you have the typical findings of CIDP? (emg, LP, decreased reflexes etc?) …. I also hear you on the aseptic meningitis – i’m 8 days post infusion and my head and spine is sstill pounding.. we tried barely increasing my rate last time and got good ol meningitis again! but SOOOO worth it if it works and can watch and be there for my kids! You mention your meds kicking in to tie your shoe laces… are you on other meds besides IVIG? Though I can tell the IVIG is working, it does seem short lived and and it worked so much better at first….The slurred speech thing is defintely what urks me the most.. it really worries me.. though no one has heard me slur yet.. I can just tell, but I have no doubts its there! I also have this awful brain fog!! Do yall? It has been worse this week, though my head has been pounding, so i know that doesnt’ help!
Dawn- thank you so much for the info! I am definently going to think about goign there.. and If i have any further decline then there won’t be any question at all if we try that option! oh what a roller coaster this all is! I think once enough time passes when and if my symptoms stablize more I will be able to relax more, but until then I just am so worried.. Dawn – what was the thing you were going to mention about being a hard stick?
Thank yall so much!