cal Posted March 24, 2019 Report Share Posted March 24, 2019 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 Quote Link to comment Share on other sites More sharing options...
Shepard1 Posted March 24, 2019 Report Share Posted March 24, 2019 I would speak to your doctor about this intermittent, temporary paralysis and if not already see a neurologist. If you develop this paralysis again before seeing your doctor then I would recommend to seek treatment at your hospital. This may speed up a diagnosis. I have had a form of paralysis and numbness of my face that has been fleeting - only lasting a couple of minutes. I do get twitching in the check muscle prior to paralysis I don't have any other neurological symptoms with this. Quote Link to comment Share on other sites More sharing options...
cal Posted March 24, 2019 Author Report Share Posted March 24, 2019 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. Quote Link to comment Share on other sites More sharing options...
JimL Posted March 24, 2019 Report Share Posted March 24, 2019 Have you have brain and spine imaging and any neurological studies? Spinal tap? That's not good. Quote Link to comment Share on other sites More sharing options...
JimL Posted March 24, 2019 Report Share Posted March 24, 2019 1 minute ago, cal said: 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. Did you have Guillain Barre? Quote Link to comment Share on other sites More sharing options...
cal Posted March 24, 2019 Author Report Share Posted March 24, 2019 No, i was never diagnosed with Guillain Barre, but my symptoms are very similar Quote Link to comment Share on other sites More sharing options...
cal Posted March 24, 2019 Author Report Share Posted March 24, 2019 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 Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted March 24, 2019 Report Share Posted March 24, 2019 How old are you, if you don't mind saying? And are you very active? Quote Link to comment Share on other sites More sharing options...
cal Posted March 24, 2019 Author Report Share Posted March 24, 2019 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. Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted March 24, 2019 Report Share Posted March 24, 2019 9 minutes ago, cal said: 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. 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? Quote Link to comment Share on other sites More sharing options...
cal Posted March 24, 2019 Author Report Share Posted March 24, 2019 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 Quote Link to comment Share on other sites More sharing options...
Clb75 Posted March 24, 2019 Report Share Posted March 24, 2019 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. Quote Link to comment Share on other sites More sharing options...
cal Posted March 25, 2019 Author Report Share Posted March 25, 2019 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. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted March 26, 2019 Report Share Posted March 26, 2019 I’m not sure about the rashes, but the burning could be part of the neuropathy. GBS is usually pretty sudden, but some of the others can come and go in the beginning. I think it’s because the nerves demyelinate, which causes symptoms, then they remyelinate and the symptoms temporarily go away. If you responded to ivig it may be a diagnostic clue to help rule in or out some diagnoses. I understand though if it comes and go, you can’t really be sure if it was ivig that helped or not. A neuromuscular neurologist can do nerve conduction tests to see if it’s large fiber damage and which nerve is affected. Small fiber damage doesn’t show on those tests so you may have to do a biopsy. If it is a neuropathy variant, I would try to get tested sooner rather than later to help prevent further nerve damage. Good luck. Quote Link to comment Share on other sites More sharing options...
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