Back around again!!!!
AnonymousOctober 6, 2011 at 12:07 am
So I have been missing for awhile…. Lots going on with my health and had to get it all sorted out, go thru ALOT of doctors to find the right one and them come to terms with it, so here are the final outcomes:
I am now classified as a CIDP patient 😮 .
I have a heart condition called SVT or Surper Ventrical Tachacardia which IS directly caused by the CIDP. There is nothing wrong with the heart muscle itself, it is directly related to the electrical side which is controlled by the nerves which are damaged. So my heart likes to beat at around 220 at rest instead of the 80’s which was my normal before first GBS attack.
I also have something called Myokymia. I was having severe problems with my legs that just didn’t fit with the GBS or CIDP. Lots of pain and my muscles cramping up so bad I couldn’t walk. The pain was worse than GBS if you can believe that! Finally after a horrific episode the diagnosis was made. Of course this was after many visits to doctors and ER’s who thought I was crazy and just looking for drugs!!!
So, life is undercontrol at this point!! I am on less medications than ever before, the pain is under control, the weight is down, and the family is happy to have mom back after a long hiatus. I just have to deal with knowing the CIDP will get to me one day:mad: ….Thank God I have a great neurologist that stays on top of everything and tests whenever there is any little change.
So hopefully I will be around a little bit more and will get to know and “reknow” everyone…..
AnonymousOctober 8, 2011 at 1:13 pm
I think I remember you… I’ve been off and on this forum for years. It’s interesting to see over time what happens to many of us. Hopefully there are some that aren’t posting anymore because they are mostly recovered. I’ve had a fairly rough ride the past few years and getting older (53) hasn’t helped anything. I recently got SSDI which helps my mental status a lot!
Also, I went yesterday to a pain management doctor. He is going to get an MRI of my back to see if he can figure out what is neuropathic pain vs. bone problems. He gave me shots in my butt cheeks and I go back in 3 weeks after the MRI is done. Duh… I don’t remember what the shots were.
Keep us posted and stick around some to help some of the newer members that need our insight 🙂
AnonymousNovember 1, 2011 at 11:42 pm
Thanks Chrissy. How were your MRI’s?? I hate the tube….. I wish we had an open one already…..
I was around when Dawn Lynn was here. She is recovered and busy with life last I heard. I have also realized that many others from my time have passed away….. Quiet the shock…. It saddens the heart…. Especially the caregivers that lost loved ones..
There are still alot of good ones around!! Lots of good info. Thought of all of them over the years also. Hope to get aquainted again with alot of them and of course help out the new ones that have to deal with this “thing”……
AnonymousNovember 2, 2011 at 7:02 pm
The MRI went fine – I took a half Xanax and almost went to sleep in the 20 minutes of the loud noise and it really helped with it being an open ended MRI. The results from my new pain doc show spinal stenosis. So now he and I are going to try to figure out which pain is from my back and which pain is from nerve damage from GBS. Finally some affirmations on my back!
I’m waiting for insurance to approved physical therapy and maybe have the shot the doc recommended to see if it helps at all. I’ve got bad kidneys so I have to watch the pain meds but I think I’m getting desperate to get some relief ASAP!!!
Yes, years go by and we lose some on this forum for a variety of reasons and it always saddens me so much when one of us dies. I would like to tell newbies that everything will be fine but for some of us it isn’t and here we still are. I am so grateful to have this forum – even though participation goes through cycles.
Looking forward to more chats with you 😀
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