rdslots

My husband is a scientist -- chemist, actually -- and he has asked me to post this, out of his own curiosity. I'm too new at all of this to even think along these lines. We have two close friends, as well as a relative, who have MS, and have explored stem cell treatment in Mexico and abroad. He is curious as to whether any research along those lines has been done, or is on-going, as dysautonomias seem to parallel other auto-immune disorders the like of lupus and CFS, Parkinson's, and MS. Is there any data on such research, re: dysautonomias? Because he is an A+ personality, a driver, and a scientist, he is incredibly frustrated with the regimen of 'treating symptoms' as opposed to looking for cures.

Newbie or not, I had to jump in here. Growing up with a mother who had polio as a child, and had issues of her own I always appreciated the good in life. The family was so dysfunctional for a number of different reasons, until I carried the weight of trying to provide stability/normalcy for two younger sisters. Stayed in a marriage that was not physically bad or abusive, but e-m-p-t-y, for the sake of a beautiful child I adore (now grown). Had a job that often did not provide all of the satisfaction in the world, but I realized that, for whatever reason, I had a talent for, and so stayed with it for 25 years. I think hitting the floor like I did 2 1/2 years ago was perhaps Nature's way of telling me to take time out for myself, and it's such a shame because this is NOT how I ever saw myself "retired." My lovely husband, who should've been the first and only one, is a driver-type, and when he made his fortune, so to speak, we wanted to take off on a boat for parts unknown. I fight depression when I realize all that this disorder (I won't give it the satisfaction of 'illness' or disease!) has cost me but I work very hard at not becoming bitter. I have always had a weird sense of humor so I can always find something to laugh about -- thank God! -- otherwise, I'd have jumped off a bridge in the coastal area where I lived (and there were plenty that looked attractive from time to time, you know). I miss almost everything about my life just three short years ago, and I ask "why?" more often than I care to recall, but if there's good, it's that I've had to become a little self-centered and I've never been that before, always giving to others (and much prefer that to this). Most days I hate my life and I blame this disorder on it. My goal is to get back to where I was, like Patton, come **** or high water (and ****** be he who gets in my way!). Maybe this is the wrong mindset, but hey!, I am being honest here. The good? Well, aside from being forced into focusing on me for a change, I have stumbled onto sites like this and feel incredibly validated by the online friends I've made. Thank you all. Beth

Toughie. Little like riding a roller coaster with its peaks and valleys, or a hobby horse that I get flung off from time to time.

Lurking, as the lingo goes, because like you, Laura, I am a little hesitant to jump in too -- you know, is the swimming pool safe? clean? Another online chum calls it a "sandbox" and just asks that we play nice. Actually, I think I keep my mouth shut because I feel I may learn more that way. I was only originally dx in Fall 2003 so I am just now getting the ride of my life on this @#$%*&& roller coaster! What a ride! I want off, myself.

LOL. The neuro asking, 'what medicines would you like to try?'

I went out cold in November 2003 -- no warning, no nothing, except for a fleeting feeling I was going to faint. I actually had been feeling "on top of the world." Dx was NCS, and I have struggled with it ever since. I too have very low BP and very slow HR, but then, I have all of my life, and seem to have inherited this from my Dad. My normal BP runs 90/60. When it is 110/70 or 120/80, it is high. Likewise, my resting HR all of my life has been 60 or so. I have also been aware of the arrythmias since I was a child and used to just find them 'amusing.' I've also been told I have a murmur. Lately, as I've gotten older, and since the initial episode, HR runs in the mid 50s, and dips into the 40s. Following surgery in January, my husband watched it dip into the 30s and freaked out. Like you too, I think, 'well hey! I'm walking around.' I did not tolerate midodrine or fluodrocortisone, and while I have nowhere to go with BP and HR, I have had some success with beta blockers -- esp. the extended release types that I take at bedtime. They keep me from feeling lows and highs throughout the day. The concern naturally is b/c beta blockers lower BP and HR too. I left the hospital in 2003 after a week's stay and every test imaginable, wearing a Holter monitor for a month and making phone calls. It gave the cardiologist enough info evidently to want to do an EP study that December, at which time he implanted a continuous loop monitor that lasted until this past Fall. Several arrythmias show up, and I still do best with beta blockers, although his concern is for the bradycardia (slow HR). At this point, I've heard 'pacemaker' twice from two different cardiologists, but I have read such mixed reports and findings. My cardiologist explained to me that what he thinks happens in my case is that 1) my BP drops, 2) the HR slows, and if 3) the arrthmia(s) kick in, then I find myself 'compromised.' Only on a very rare occasion have I ever felt the racing beat and then it was 117 beats or better, off and on all day. I also had a lot of chest tightness and significant aching in my left arm. Another trip to the ER, overnight stay, and now a different cardio is looking for mitral valve prolapse. All of this is enough to drive you crazy. Sorry I went on so. I think I was trying to respond to what sounds a lot like my history these past 2 1/2 years, and I wish you all the best. I will be incredibly happy when they get me back on an even keel as I have felt so 'in limbo' while this all gets sorted through.

Hey Laila. I am by NO means any kind of help as I am new to this, too, but I can assure you that asking questions of others helps. I think being informed and proactive helps when you meet with your DRs anyway. I was dx with NCS after a major episode/weeklong stay in the hospital. The initial course of treatment was the midodrine, followed by Florinef (fluodrocortisone), and I understand completely the DR's attempts to raise the BP and keep you on your feet. Unfortunately, I tolerted neither well, and the Florinef is listed as an allergy now, but it was really more of a severe reaction/side effect. There have been good results with midodrine and/or fluodrocortisone, but I am very sensitive to meds. I was too dizzy and retained too much water (I always have). Adding salt and staying well-hydrated helps me, and I take an extended-release beta blocker for arrythmias -- unfortunately, I have to watch for too low BP and way too slow HR. I may be a candidate for a pacemaker but I have real mixed feelings about that, too. Good luck with the meds. I'm not sure, but I think a lot of people have good luck with the midodrine. To put the stuff at the bottom of your response(s), go to My Controls and play around with the profile stuff. It's called a signature, and you'll find it there. I'm NO computer expert, either, but I managed to do that much.

I have had scoliosis since I was a child. If I bend over at the waist, or am in a swimsuit or other backless attire, it is evident. I've even had people comment/ask -- can you imagine? but then, I grew up with kids who'd mimic my mother's polio limp. All I have ever noticed is that sometimes my right shoulder blade will really hurt, but lying as flat as I can get on the floor and on top of a tennis ball (under the shoulder blade) relieves it. I notice the pain especially after prolonged sitting at a desk, or the sewing machine. After years of abuse, I guess, I required back surgery for a herniated/ruptured disk at L4-5, S-1, and after about a year and a half, would never have known I had hurt my lower back (unless I do too much or something stupid, which is hardly likely these days). I have been curious about the connection between polio and dysautonomias in the offspring of polio patients. My mother came down with polio when she was 8, and I was her first child. I can't help but wonder what genes got passed down that may have impacted the ANS.

New here too, and frustrated as well, but I find I am benefitting from surfing some here -- hey, I can stand on this board! LOL. -- and from the suggestions from others. Originally dx with NCS in November 2003, it has been a continual struggle to put all the puzzle pieces together. I am supposed to go 3 -6 months w/o an episode before I even drive, but I've yet to go 3 mos. Newest DR is looking for MVPS, and I should hear something from the cardio this week, re: stress test. I have been through it. You'd think those of us 'newer' to this could benefit from those before us, but most DRs have no clue what this mess is all about. A lot seems to be, unfortunately, trial and error. It made me feel so much better to learn somewhere that these disorders are as unique as the individuals who get them. Knew I was special . If I've learned anything just recently, it's that you, the patient, must get well-informed (knowledge is a powerful weapon), and be proactive; a good, compassionate DR -- whether a PCP, neurologist, cardiologist, or other specialist (heck! at this point I'll settle for a psychiatrist!) -- is worth his/her weight in gold, and you've got to inform/educate others. Good luck, Claire and Amby. I am SO with you.