deedee- hope late reply better than none…
i so appreciate yr response. i had asked about some of these with no answers so to know it’s part of this makes all the difference. i am sorry you, or anyone, has to deal w/it but, at the same time i can know it’s not just me and the symptoms fit. the veins one and feet/hands discolorations are the bizarre for me b/c it looks like it’s out of some horror movie. sounds like ivig’s been really beneficial for you also. it’s great feedback to have b/c it will help keep me motivated to keep on them or find another way.
yea, been giving serious thought to trying to find a different specialist. if i can get some type of insurance squared away it will make all the difference. unfortunately i’ve found that to be the reality of it all.
haven’t found any support groups near me. not yet anyway. u hang onto yr hubby – he sounds like a keeper. im glad he’s there for you. dj
[QUOTE=deedee43]Sorry you are so down right now. I know what you mean when you say there are days that you just want it to stop. I found that when I was totally symptomatic that was exactly how I felt. This disease not only debilitates your body, but your mind as well. It seems almost hopeless when you are symptomatic, but after IVIG my spirits really buck up! Don’t take no for an answer. If this neuro isn’t meeting your needs, find one who will. Yes, I find speech doesn’t come easily when I am symptomatic. Think it is because I feel so awful that my brain just can’t keep up with everything that is happening in my body! I also have fatigue (better about 2-3 weeks after IVIG), temp changes (I used to be cold all the time, now I find I get really warm/flushed), and I notice as the symptoms increase that the veins in my hands get really big – almost as if the rest of my hands are “deflating” but the veins get bigger. As for muscle atrophy – I was told by neuro that it comes with this disease and physical therapy should be done to build up strength. I broke my leg during my first bout, so really had a problem with atrophy. Now (3 months later) my leg is 80% healed and I am doing exercises and working with hand weights to build my muscles. Hang in there! I find that I wax and wane in emotions and symptoms. Have you tried finding a local support group? This discussion forum really helps me, but I also have a GREAT husband who supports me 100%. Best of luck, and good health![/QUOTE]