Dr Rane,
as always, I appreciate your taking the time to reply to my message and to address my concerns.
I will definitely try to pursue the avenue you have suggested. It is my "gut feeling" as well that some of my most recent symptoms are side effects of meds, so hopefully my specialist will figure out a way out of this and will adjust my treatment plan accordingly.
Many thanks for all your help and insight, and with your permission, I will drop a line on the forum now and then to let you know how things are.
All the best,
Alex

I've observed patients presenting at the ER with hypertensive episodes of the parameters you describe. The BP values, while considered high, are generally insufficient to result in a cerebrovascular insult so your concerns in that regard should be withdrawn.

Based upon my experience with patients demonstrating similar patterns, the episodes appeared to be associated with panic threshold and yet did not manifest the characteristic hyperventilation and other well-documented features of the disorder. Most all of the cases were also initiated by a singular stressful incident, which led to the awareness of rather remarkable instances of increased cardiac force which is sensed as pounding heart, sometimes accompanied by sinus tachycardia. The sensations were typically enough to induce the requisite fear to seek emergent care.

In virtually all those cases, no underlying cause was identified and the use of antihypertensive agents and anxiolytics brought all instances under control within 30 minutes to several hours at most. No evidence of heart disease was revealed on subsequent testing.

As for your test results and symptoms, a positive ANA doesn't really mean much and in the absence of other supporting lab values and other tests, is fairly insignificant. A low CRP would also argue against the presence of an inflammatory response to an autoimmune disorder.

With respect to your muscular symptoms, has your physician performed an EMG study and lactic acid test? This would be important to determine whether there is an underlying neurological cause. Any history of disease in your family and if so, what type? Not that something neurological can be entirely ruled out, but your symptom pattern doesn't bear the sort of recognition markers typically observed in such pathology.

Do keep me posted and I'll do what I can to assist you.

Best regards,

Rutheford Rane, MD (ret.)

Dr Rane,
I have some updates and I was wondering if you could shed some light onto this as I am now more confused than ever.
I've seen a neuro doctor in the summer and he ran a test for the ganglionic AChR antibodies. That test came back positive - the normal values are under 0.05 nmol/l, mine is 0.11 nmol/l. He suggested 3 treatment options: prednisone, IVIG, or some form of chemotherapy (immuno modulatory something - I apologize, I can't recall his exact words).
Also since I am still complaining about headaches, joint and muscle pains, pins and needles, generalized weakness and the whole plethora of symptoms I've listed in my previous messages he suggested I should try to discontinue the mestinon, florinef and clonazepam. Meaning my only med would be propranolol.
As if my list of symptoms was not long enough, I have a new one to add to the list, which to me is quite strange, for a lack of better description. On top of everything else, I've recently developed a burning mouth/tongue sensation that only subsides at night or while I'm eating. There are no sores in my mouth, just a burning sensation affecting mostly my tongue. Also my tongue is slightly swollen and there are teeth marks on its edges.
The dr also said that I do not have a typical presentation for someone with a positive AChR -  he mentioned that I have no dryness of eyes/mouth, no impaired pupilary reflexes, no GI complaints...and I can't recall what else.
Bottom line - he stated that there is definitely something going on with my autonomic nervous system, and that when we meet again, in February, he would like to get me started on one of the therapies mentioned above.
I am pretty much at a loss here. I have no clue as to what is going on with me anymore, and frankly I am terrified at the thought of starting an aggressive course of treatment that might or might not help me.
I'd really appreciate if you could offer some advice. Right now I feel that with every test I have I just keep adding to the list of health issues I have, plus whatever treatment I try makes me worse rather than improve my condition.
Thank you.
Alex

"I've had several episodes of spiking blood pressure - quite nasty in terms of the numbers (highest numbers I ever recorded 165/115) and symptoms"

Hi Alex.  I too had episodes of blood pressure spikes.  Normally, my BP is good - under 120/80.  I quit smoking and started having episodes where I would feel completely out of it.  During these episodes my BP would skyrocket for 10 minutes to an hour.  The highest my BP got was at a Dr's offce recorded at 172/121.  My pulse during these episodes was steady at 70-80 beats per minute.

My doctor's best guess was that I was having panic/anxiety attacks, possibly PTSD from the military.  Eventually, after a few months, the episodes became less severe and futher apart.  I haven't had a BP spike in over a month.  For me, it took realizing what was going on, recognizing what was going on, taking time to de-stress and calm myself down.

Before I was able to get it under control, it was scary, and I thought I would have a stroke.  In the end, my numbers were higher than yours and no damage was done.  

A friend suggested that I should take my BP while exercising.  It was 210/100 - which is a completely normal reading while exercising intensely.  The human body can take that pressure just fine for a period of time while excersing, certainly it can take it for a period of time at rest.  I hope that makes you feel a little better.

I found some things to help me de-stress, if you want some more info, let me know.

Two things:  I am not a doctor, and I just wanted to share my info in hopes of helping you out.  Also, my BP spikes were of a short duration and not every day.  99% of the time my BP was normal.  If you have high BP on a regular basis , instead of a few short episodes, that could lead to serious issues.

Hi bababooey,
thank you for your input.
It turns out that my BP spikes were due to one of the medications I was taking (florinef) plus salt and fluid loading - as per my dr's suggestions (up to 10 g salt and 4 liters of water daily).
My BP was never elevated for a long time, if I get an episode of high BP it is usually short lived and it self terminates.
I haven't had any such episodes ever since I decreased the amount of florinef I was taking. Hopefully I won't have any issues with that anymore. My main concern in terms of the BP was/is the fact that I take after my grandmother - she always had low-ish BP, then one day had a spike that led to a stroke and she never recovered after that.
I'd be more than interested in learning about what has helped you de-stress. Thank you for your offer, and I'd really appreciate if you could share that info. I believe a lot of people on this forum would be able to benefit from that.

richie,
I'm not sure I fully understand your comment, but my symptoms were not entirely attributed to anxiety. I have a POTS (postural orthostatic tachycardia syndrome) diagnosis and I know that my ANS is malfunctioning. Is there an underlying anxiety issue?- yes, definitely. Is anxiety the only reason for my current symptoms? No one ever claimed that. Could it be that my POTS was triggered by meds I took that I didn't need to take? Well, there is quite a high chance. Could those same meds, or the meds I am currently taking be responsible for some of my current symptoms and test results? Again it's quite possible. Why did I end up taking all these pills? Simply because I didn't want to believe that I'm fine, because in my mind I was sick and all the drs I saw didn't want to acknowledge that. I have come to regret my decisions and my "medical" quest, and right now all I want is to safely get off the meds I once thought would cure me. Unfortunately that's easier said than done, and it might take quite some time for my body to re-adjust to being meds free. No one holds the absolute truth though, yet I can't help but wonder though if I did the right thing by searching for answers, for a disease, rather than focus on ways of reducing my anxiety and stress levels. It's as if I wanted to be sick...well, now I am.

Alex

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