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20 hours ago, Clb75 said:

I have CIDP which some consider to be a chronic form of GBS. The symptoms you describe sound similar but the paralysis is usually symmetric on both sides of the body not just one side. There are a lot of variants though, some forms of neuropathy only affect one side. Have you seen a neuromuscular neurologist? They may have more specialty knowledge about neuropathy than a regular neurologist would. You mentioned being treated for GBS, did you get ivig or plasmapheresis? How did you respond? If you responded well, it could be an autoimmune process similar to GBS. I had to go to an academic center that specialized in neuromuscular disorders before I got diagnosed. I know it’s challenging, but keep trying different doctors and hopefully you’ll find some answers. 

I haven't seen a neuromuscular neurologist but I am definitely going to make an appointment with one. I was given 5 days worth of IVIG in the hospital and about 2 days after the treatment was done, my symptoms reversed. But for the last two times that the paralysis occurred, I did not go to the hospital and the symptoms reversed after about a week to two weeks so I am not sure if the IVIG would speed up the reversal or not. As for this episode ( which started Saturday) I am having a lot more pain and I have been getting rashes and burning sensations all over my left side so bennadryl has become my best friend.

38 minutes ago, toomanyproblems said:

Your case sounds extremely challenging. It peaked my interest because I have CRPS. I was curious why they thought you might have it. I mean, it's one weird a** disease for sure. Even as a biochemist with medical background I can't wrap my head around it and all the strange things it can do to your body. Why did they tell you CRPS might be causing your problems?

They thought i might have CRPS because of the pain I have every day and they think it might have been caused by surgical trauma to my legs. But the paralysis seems to confuse everyone so they’ve been throwing out diagnoses for every single symptom but nothing seems to fit for all of them. I’m sorry you have to deal with CRPS 

3 hours ago, toomanyproblems said:

How old are you, if you don't mind saying? And are you very active?

I am 20 years old and I haven’t been able to be as active because of the syncopes but I try to do at least a little exercise every day. 

2 hours ago, JimL said:

Have you have brain and spine imaging and any neurological studies? Spinal tap? That's not good. 

I had a MRIs on my spine and brain several times to rule out MS which all came back normal. I also had a spinal tap and that was ruled normal 

No, i was never diagnosed with Guillain Barre, but my symptoms are very similar

I was hospitalized for this last June, where i was tested for Guillian Barre syndrome and treated accordingly, but they were not able to come up with a definitive diagnosis. Just that I may have complex regional pain syndrome. 

Hi everyone,

I have been dealing with dysautonomia for about a year now and have been diagnosed with Neurocardiogenic Syndrome, Innapropriate Sinus Tachycardia, Orthostasis, and syncope (usually between 5- 10 complete syncopes a day and pretty much always being in presyncope). Along with all of the symptoms I have been dealing with related to those conditions, I have also been dealing with periods of temporary paralysis that lasts for about one week to 10 days and occurs about every 3-4 months. The periods of temporary paralysis start with leg weakness and muscle fasciculations and cramping which progress to loss of reflexes and paralysis on my left side . The paralysis is ascending and can go up to my waist but every time is slightly different . Has anyone else experienced anything similar to this? I am asking this while in the beginning of another episode