Reply To: Droopy Face!

Thank you all soooo very much for all of your help!!!! I REALLY appreciate it!!! My hips and hands have defintely improved with this last round of IVIG- thank goodness!!!!! however my swallowing and all over/every single muscle fatigue is pretty bad… I have that AWFUL skin crawling/ need to escape my own skin sensation all over, which is driving me crazy.. and started to have difficulty breathing again… I feel like I am headed in the direction I was before I got admitted into the hospital…. however I am WAY better in other ways though still…

Shellbones- WOW.. i’m SOO glad to hear that you are a success story as far as scarey symptoms are!!! I thought I have seen a tongue fasiculation or two.. but when i fully rest it I don’t.. and after the IVIG my tongue had much more strength.. as did everything- thank Goodness… I do have facial fasics every once in a while.. but more so every single muscle is just weak and trembly! The IVIG resolves all my fasiculations.. for at least two weeks, which is nice!!! 🙂 I agree.. I think only time will truely let me relax about the whole ALS thing.. even though I know it just doesn’t make sense, especially with THREE emg’s being completely clean and all neuros (12+ of them) saying no way.. it’s still scarey!

I went to see a rheumatologist two days ago (I have had an appointment at the university with this one for over four months- she is supposed to be amazing- comes highly recommended from many different sources)… anyhow she thinks it is sjogrens.. with neuro involvement.. possibly causing CIDP (which I have heard there is a correlation).. I have awful joint pains- definely had some before IVIG, but it has dramatically worsened in the past few months..Anyhow,, she wants me to start plaquenil, and then in 2-3 months depending how it is going add Immuran (has anyone on here tried that for CIDP? I know myasthenia people use it).. and continue my IVIG… SOOO I hope they are right!! I would be SOOO relieved if they are right! 🙂

Thanks Dawn… I’m deifntely thinking a port might be a good idea.. I would ideally like to wait a few months and just see how the new meds affect me.. I would LOVE to just take those and no IVIG>. but I know that likely won’t be the case..

Lori- Thank you! If we decide to go that route I will defintely be asking you more than a few questions!! thank you! 🙂

thanks again so much for yalls help!!! Hope yall are all doing well