Jan Grizzel
Forum Replies Created
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I am P/Q positive – negative SFEMG
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Hi all.
I had my Zoom appt with the armory Neurologist today who has agreed to give me a go on the Mestonin even though not officially dx with LEMS. She also is sending labs to Mayo – one panel is Dysautonomia panel and another specialized test checking for neuropathies I think she said. The side effects of this med she mentioned sounds like it would benefit me as one was more saliva (I have dry mouth) and the other Diarrhea (I have severe constipation)
My VGCC was 151.2 from the Arup labs
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Thanks Price for that info. I did wonder about that. I just read through @Carmens post on the AIP and have been thinking about that as well. If you see this @Carmen Willings I would be interested in seeing how this is going for you
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Wow  So sorry you are having to use all of that for control – yet so thankful it is available and helpful.  Does anyone ever get to wean off the IVIG and Plasmapheresis?  Are you using the Propranolol for your Dysautonomia?  I am still awaiting my P/Q result.  My virtual appt. with the Emory Neurologist is next Tuesday the 27th.  trying to write down my questions and helpful meds I’ve seen on here. She has actually published an article in Medical Journals about LEMS, but can’t recall the name at the moment.
I noticed while reading through your back posts Tesha that you have vocal cord problems also. Â My voice too gets very hoarse and weak after a busy day of talking or visiting and complete exhaustion. Â I actually went through voice training at my ENT office several years ago to try to strengthen but it didn’t last.
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Hey Tescha
Interesting. May I ask what your P/Q’s were and did you finally test positive on the EMG as well?  Are you taking any treatment now?
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Thank you both for responses. Ehlers Danlos is a connective tissue disorder as it affects the collagen with which our bodies are made up of. I didn’t realize that about the result staying the same (even though mine have thus far). I should hear back this week. I was curious if the result would climb upward without treatment. My result last year was 150.
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<p style=”text-align: center;”>I have P/Q type and as of yet have not been diagnosed with LEMS which I understand is very rare according to my Emory Neurologist. I do have Dysautonomia and Ehlers Danlos and Chiari Malformation along with some yet unidentified inflammatory process going on. I’ve just had my P/Q testing again yesterday to see if changed</p>