Reply To: Droopy Face!

March 31, 2012 at 8:11 pm

Shellbones- WOW, we do have a lot in common!!! I am starting the plaquenil today, so I hope I too see a differnece with the joint pain and energy!! That is one thing I kept thinking when it came to the whole ALS thing.. i kept telling myself that I feel too bad all over/joint pains/ overall feeling of unwellness that it just didn’t seem like that could be it, since from what I have read that is usually not the case with MND. Was your whole body/every muscle seemed to be affected, or was it more lower extremity etc? I can’t remember (have I mentioned that I have this awful brain fog thing too! ๐Ÿ™‚ They are also saying I have reynauds as well, and as far as the scleroderma thing goes.. i’m not sure if devleoping calus like feelings on the ends of all your fingers would be related to that or just dryness from sjogrens, but I have suddenly developed thick/calus like skin on the tips of every fingertip!!! And it’s not like I’m doing more physical activity/hand work than normal!
What made them make the decision to add on the immuran in addition to the IVIG? Your dosing sounds nice too – as inconvient as going every 10 days would be, to have a smaller dose like that woudln’t take as long or hopefully have as many adverse effects!
As far as rest goes, that is defintely my biggest problem, first of all two kids 2 years and under, then a demanading job, which is shiftwork (I go from nights to days and days to nights etc all the time – so my internal clock is messed up)! I have always been on the go, so this whole body forcing me to slow down thing is difficult, and I defintely don’t get enough rest..

Funny you mention the gluten free diet!! Since this whole thing started after my IUD/transfusion debacle and was followed by some major GI symptoms the GI dr thought I had a gluten intolerance/autoimmune issue triggered by the IUD trauma, so I went gluten free- i would have done ANYTHING to feel better! I have been very strictly gluten free since (a year now almost!) In fact last night we had a long over due date night and went to our favorite resturant and I broke my gluten free streak just by having a little soy sauce.. I haven’t decided if I should continue gluten free or not.. I probably will for a while until all of my symptoms stablize.. it’s just not worth it, no matter how much I want a REAL cookie! ๐Ÿ™‚
Thanks again for all of your help! It REALLY helps to hear a success story of someone who had so many of my symptoms!!!