May 25, 2012 at 1:40 am
I wish they had the search option on here still, as I’m sure there has been discussion in the past.. but those of you with autonomic involvement what are your symptoms with that? And do they fluctuate when your other cidp symptoms do?
Everytime I get sick, run down or get an exacerbation, it seems that it “hits” a different area harder each time.. one time it’s my hips, the next my knee, the next face – etc.. I have been sick with a bad cough/cold/fever from my kids and it seemed to hit my hands (floppy fingers again- that had TOTALLY resolved for months) and my swallowing.. ugh.. swallowing felt difficult and felt like i was going to choke until this last IVIG kicked in.. also my heart rate went sky high, lightheaded with exertion and standing (my autonomic testing was positive).. anyhow.. it makes me have some pretty good shortness of breath and exhaustion feeling my heart race etc… oh also it makes my GI symptoms return too with pretty good upper abdominal pain!!! It’s so crazy!! can’t believe this affects EVERYTHING in my body! I keep feeling like they are msising something!
May 25, 2012 at 2:27 am
Honestly, after about 2.5 years most of those things stayed away permanently. The first year palpatations, urinary and bowel issues were constant. Tremors in hands gone by 3rd year. The only constant that flares with common cold/virus, is spinal pain and of course our headache issues.
May 25, 2012 at 6:44 pm
bny–sorry to hear you are sick 🙁 I do not have autonomic involvement myself. It makes sense that if you have tested positive for autonomic involvement that it would get worse if you get sick. Do you think maybe an extra ivig infusion when you get sick since it seems to work good for you? what about adding some prednisone to your ivig schedule to see if it will help?
I know what you mean about the missing something—even my dr keeps telling me “I feel like we are missing something” mainly due to my “atypical” cidp diagnosis. An entire week at Mayo and every cidp test available turned nothing else up, now all these head to toe cancer screenings they are putting me through. Then she considered sending me to Brigham in MA for a third opinion!! I finally said –enough–lets just work on treatment plans for what we do know…..which is how we got to the rituxin point.
So i dont know—you could go someplace like mayo or one of the centers of excellence for cidp, but in the end, if the ivig is working for you, it has the least longterm side effects–would they really change your treatment plan? On the other hand if you do not feel you are receiving a good treatment plan–you can get all of your testing in a week and a second opinion from one of these places. hope you are feeling better. Lori
May 26, 2012 at 3:20 am
Thank yall so much!! Sorry that you ever feel that way too Lori- it’s frustrating!!! I have seen SOOO many dr’s about this whole thing that the thought of more time, money etc to go up to mayo or similar right now doens’t sound very tempting.. As you said as long as the IVIG is working then I don’t have to have a name to this mess..I would think with 12 or so neuros that I”ve seen that if they can’t find an answer, it just might not be out there haha.. though new things/possibilites do keep popping up I feel like.. I still need to go get my chest scanned.. but between a seriously heavy work schedule recently, the kids and frequent ivig.. the LAST thing I want to do is go get more testing/dr’s appointments.. ugh.. but I will in the coming weeks. If EVER i start slipping, and it’s not working well, ill be calling probably MAYO asap!!!
The one thing (well i have lots actually) that freaks me out.. my finger tips were all jello/floppy before the IVIG. I had no pincer grip at all, couldn’t take a band aid off (wanna see a Mama get frustrated and get into tears- me trying to get a bandaid off for minutes and not able to do it, not able to hold the mascara wand etc), that freaks me out is my hands have been back to normal since that 2nd round of IVIG..I have my dexterity back 100% since then.. however the wasting has gotten a little worse .. can this be delayed?? Do people with GBS that get hit hard and fast (mine was prettty fast), get function back, but then the wasting shows up afterwards?? I worry that physically it looks worse, but I have NO increased weakness there at all, its all normal!?
May 26, 2012 at 7:19 pm
I have had to have several chest x-rays due to a “nodule” on my thymus gland. In the end nothing has come of them. I had 3 ct scans of the chest,a MRI and a pet scan—I finally had enough , told them they were going to end up creating cancer from all the dyes, contrasts and radiation if they continued. I dont know why you would get muscle atrophy after you start regaining use of your muscles???? I thought the muscle atrophy occured when it wasnt getting the message from the nerve to function, therefore it atrophied due to not being used and would be weak. My inner calves are atrophied and weak.
Yours is the opposite of mine, where you got hit hard and fast, mine has been slow and progressive. I dont think there is any “normal” with this disease. Seems every case is different.
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