alex.jones
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Dr Rane,
once again I appreciate your prompt response and your expertise.
The neurologist I have seen is not even remotely considering the possibility of Myastenia Gravis as - in his words - I do not display any symptoms indicative of this. Also he has not mentioned any intentions to perform further tests. He simply stated that a low AChR level such as mine is not uncommon in POTS patients and that I should be continuing the propranolol, while gradually discontinuing the other meds in the hope that I will see some more symptoms disappear.
The other possibility he mentioned aside from my current POTS diagnosis was autoimmune autonomic neuropathy - but again he didn't feel that would be the case as ...again, I don't have the symptoms normally associated with that (he mentioned dry eyes and mouth, GI problems, sweating, impaired pupilary reflexes, or sexual disfunction as being typical symptoms with such a diagnosis - and I do not have any such issues). He stated that given that I don't have the symptoms he won't push for any form of treatment now, but wait until February and see if anything new develops, and then decide which way to go.
In terms of my symptoms: I have never experienced double vision. I did have some transient, random episodes of blurred vision because of the mestinon I was prescribed off label for POTS - they have gone once I reduced the mestinon intake. Also, I do not have any problems with my eyelids muscles whatsoever. The muscle weakness I used to have mainly in my upper chest arms has also subsided once I lowered my mestinon dose, and I seem to actually "thrive" in hot/warm temperature environments - hot showers and a heated blanket are my "best friends" lately as they help relieve the muscle aches and joint pains that bother me.
I have looked up Myastenia Gravis online (apologies, as I don't really trust "dr google" but I had no better resource available) and I do not feel that I fit the profile at all. I don't display any of those symptoms. Moreover, my mom worked for 7 years as a neurologist's nurse, and she has dealt with a lot of MG patients. I know she might not be objective, but she doesn't believe that MG is my problem whatsoever.
I've never had a muscle stimulation test, or a Tensilon test, and again the dr is not - to the best of my knowledge - going to conduct further tests, but I can definitely bring these to his attention in February when I will see him again.
The symptoms I am still complaining about - it's a long list, so please bear with me: isolated episodes of tachycardia that I have learned to manage/ignore - I don't believe there is any arrhythmia involved - I've been extensively tested and even if I get occasional PVC's they don't bother me anymore. I still experience quite considerable levels of muscle aches and joint pains - my arms and legs, my entire rib-cage at times, and sometimes even the internal and external oblique muscles; interrupted, non-refreshing sleep, vivid dreams and occasional nightmares, pins and needles particularly in my hands, forearms, feet and lower legs, occasional episodes of whole body itching, what I assume to be short lived ardenaline surges (usually when I drift off to sleep, or when I am about to wake up in the morning), chest pain, waves of pain originating in my abdominal area and spreading outwards into my limbs from there, vibrating sensations mainly in my legs, but I feel those in my entire body at times, and a generalized feeling of weakness/tiredness - as if I'm coming down with a flu, but there is no flu, anxiety, depression, irritability, nervousness, restlessness at times, and I could go on...
So far it looks to me that some of the symptoms I was complaining about have started to diminish and even disappear once I started reducing the meds intake. The muscle weakness is all gone, so are the shortness of breath, the muscle twitches, and the stomach and intestinal cramps - this has happened almost as soon as I decreased my mestinon doses. Also, I haven't had any spikes in BP ever since I halved my florinef intake. Which makes me wonder - could the remainder of my symptoms be due to the meds I am still taking? Again I am still on propranolol, clonazepam, florinef and mestinon, with the intent to wean off all but propranolol- again as agreed upon with my neurologist.
Would any of the drugs I'm taking be able to "induce" the positive blood tests I've had - particularly the positive ANA, slightly elevated RNP-A, and the more recent AChR?
I might be misinterpreting things, but most of my problems started soon after I was put on beta-blockers last July. (I'm most likely grossly speculating here, but I was looking at some test results - in Sept of last year my ANA was 1:160 - that was after 2.5 mo of bisoprolol, in Nov of last year the titre increased to 1:640 - after 5 mo on bisoprolol, soon after that I started weaning off the beta blocker, and in January shortly after my taper was complete, the same ANA titre was back to 1:160).
Also, and this might be a stupid question - given that I do not fit the profile for MG or that for the Autonomic Neuropathy - what might be the risks of not treating this slightly elevated AChR level at all?
Thank you for taking the time to read yet another long post.
Looking forward to hearing from you.
Best,
Alex
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