AnonymousMay 21, 2012 at 8:13 am
My neuro thinks GBS and will know for sure early June. I was very lucky – the parylysis only affected one side and it was missed at hospital as I have remained able to walk/stagger. I realised a couple days something was really wrong and got a good neuro. This episode started for me mid March 2012, so I am aware that it is early days as he has warned me that this may take months to recover from.
I feel the last week or so I feel i have gone backwards, and cannot bear to put weight on my ankles. I used to have a period in the morning after forst getting up where I could potter round a bit – that seems to be gone. In addition, the pains in my elbow and wrist is difficult to bear.
i’m taking 1800mg per day Gabapentin with 20mg Amitryptyline at night, with additional co-codomol on the top as required. I can raise the Gabapentin but that seems to be a massive help with the DEEP llimb pain but doesn’t seem to help with this arthritic feeling in joints.
I am new and it seemsto be a lonely path even though my family are being incredible….anyone that can help or had a similar experience please chat.
Thanks to all reading and even if you cannot help I wish you peace.
May 21, 2012 at 1:09 pm
It sounds like you are saying your symptoms are worsening, which might make it cidp not gbs. If so, you should ask the new doc to start from scratch. Have you had a spinal, ncv/emg? If you have had a ncv/emg, maybe you could get another to see if there is additional demylienation which would be indicative of a continuing demylienation process. The arthritic type pain sounds like inflamatory pain which is typical of cidp. Have you had any treatment? ivig, pp steroids etc.? The first step would be to figure out if the additional symptoms or diminished stregnth is due to gbsresiduals or cidp. Keep us posted.
May 21, 2012 at 2:13 pm
Both GBS and CIDP are typically bilaterally symmetric. Has your neurologist discussed this point with you?
AnonymousMay 21, 2012 at 2:51 pm
guys thanks for responding so quickly.
Dawn’s mom – I had NC/emg done very early so neuro wants them repeated next week, and he should have results of anti-gangliosides blood tests…(this illness has a vocabulary all of it’s own 🙄 ) I do agree it feels like inflammatory pain, I have had no ivg, pp or steroids as yet, but I can see your thought process with cidp. To be honest I’d hate to be greedy, a single bout of GBS would be more than enough for me, lol.
GH – I think it is considered unusual to have asymetrical GBS but not impossible and hence can be even trickier to get diagnosed than symmetrical GBS.
Anybody got any tips on how to manage/relieve the joint pain till I get back to the neuro ?
AnonymousJune 4, 2012 at 3:19 am
Dixie, my left side has been affected far worse than my right…and to make matters more confusing, I don’t think I am that weak. I had a buckling episode during the acute phase but haven’t since. My muscles though go through several days each week (so far) of intense aching and burning…and now twitching. I do feel better overall, especially the fatigue and dizziness and blurred vision. I am still tingling all the time. Patience is not my friend. Please keep me posted on your healing! You are in my thoughts! Heather
AnonymousJune 4, 2012 at 11:14 am
Thanks Heather. I still have some buckling of anlke joint. What has been odd since I left the original post is that the pain has been very bilateral in the muscles and joints. I guess at 12 weeks since the onset of this for me it’s early days….Heather when this start for you? Patience is not my friend either…though I think it will be on this journey, or we will only make pain etc tougher on ourselves. Keep in touch I find it very lonely being off work. Dixie
AnonymousJune 4, 2012 at 5:59 pm
Dixie, I would love to keep in touch as this is a very frightening lonely process. I go Monday for nerve and muscle testing. I too should know more soon…I hope anyway! What are your symptoms now? Are the medications helping? Nice to go through this with someone! Heather
AnonymousJune 5, 2012 at 1:43 am
Thanks Haynes…sometimes when the pain is more excruciating I think how lucky not to have it blasting equally on both sides…then I wake up the next day and the pain is uniformly even on both sides. Heather good luck with the testing I didn’t find it too bad….but am going for the same test (again) myself on wednesday as the neuro thinks they might have been done too early. Heather its the pain that I find difficult to bear, particularly when it comes on near bedtime and you cant shut it out sufficiently to get to sleep. The other think is the weakness, people think u look ok….I put on my make up every day and think they know best and a nice walk will be good for you……..I am very careful what trips I save my energy for now…has to be urgent and important…..keep chatting guys x
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