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Liffa

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  1. Thanks @Pistol and @MomtoGiuliana for replying. Last evening I found a really good website from the National Institute of Neurological Disorders and Stroke: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Multiple-System-Atrophy According to this I should be having some more severe and unusual symptoms from early on (which would have been 7 years ago) that I am not having such as tremor and rigidity, abnormal eye movements, contractures, Pisa syndrome (leaning to one side) and many others, and needing an assistive device like a cane or walker pretty early on - which I did have to use a cane and the motorized scooter in the grocery store after my 2013 "meltdown," but now only need a cane for occasional hip bursitis flare-ups so that is a sign of recovery and improvement which MSA doesn't have as it is progressive and doesn't go into remission. I also took my BP lying down and it is low, and gets higher when sitting up in bed and then falls just a few points when standing - when I had my meltdown it fell as much as 30 points on standing. Through the years that has improved with my protocol which has never included any of the usual drugs, but only diet, salt, and magnesium. I think after 7 years that would be degrading and by now the high BP when lying down would be showing. I'll keep an eye on that for the next week and see if there are any fluctuations. So I'm feeling better about not having MSA, but PAF could still be in the mix. I'm going to talk to my doctor about it. Maybe I can be referred to a larger city where they would be able to do some of the dysautonomia tests. Where I live, nothing is available.
  2. So I'm new here, but I've had dysautonomia symptoms my whole life - everything from panic attacks as a kid to not being able to breathe because my diaphragm would "lock" to heat intolerance to palpitations to cold feet/hands (Raynaud's) to wonky BP to unexplained fatigue to IBS to you name it. I've always been weird and it's been pretty rough at times. I had a big meltdown in 2013 when I was 55 after a dental episode and there were lots of theories such as mercury toxicity to adrenal fatigue to chronic fatigue to MVP/Dysautonomia. Things like brain tumors and Addison's Disease were ruled out and I was pretty much left on my own to figure it out with my family doc who was amazing. I started researching dysautonomia more and reached out to Dr. Grubb's office, but at that time there was a two year waiting list, but his PA was great and sent a lot of info to me and my doctor. I had an echo cardiogram which did not show MVP, but if I go to a doc in a.m. without drinking enough water they always hear a click. I never had a ttt or any other dysautonomia tests, but she created a protocol based on Dr. Grubb's info and her own research etc. that has worked pretty well. I was able to return to work after about 9 month on the couch, but have never regained all my strength back. I can control the BP/HR pretty well with salt water and magnesium, too. I also have fibromyalgia/trigger points so that is also a part of the picture and it makes it hard to tease out sometimes the source and and the remedy for a symptom. So this winter I got a virus and lost my voice for 4 days. The hoarseness has been stubborn and a speech pathologist dx me with Muscle Tension Dysphonia and I'm currently in speech therapy, but its NOT getting better, but I have to admit that I'm not doing everything I'm supposed to, and I'm a music teacher and have used my voice improperly for decades, so maybe she is right and it is what I have? I happened to stumble onto the Vanderbilt page on dysautonomia this evening and read about Multiple System Atrophy and one of the symptoms is hoarseness. And most of the other symptoms are so similar to POTS and MVP/Dysautonomia. It also says difficulty in swallowing, and I've had that all my life, too - can never swallow pills, my husband has always teased me about that. And it mentions sleep apnea which I was just dx with, but my mom had it and my sis has it with CNS episodes along with obstructive episodes. In a sleep study about 25 years ago I was dx with a mild level mixed CNS/OSA and I declined to get a CPAP, so it's not really a new thing, although I now have moderate to severe mixed CNS/OSA and am using an oral appliance that is working really well. (My sleep dentist has found that CNS apneas greatly decrease when the OSA's are corrected by the appliance, and says the brain starts to figure it out again.) MSA has a terrible prognosis and says life expectancy of 7-10 years. My meltdown was almost 7 years ago and I've had so many of these symptoms since my earliest memories. One thing I do not seem to have is the high blood pressure while laying down, which everything I read seems to list as a hallmark symptom. I'm freaking out - but the timing on all of this doesn't seem to match up with a 7-10 year survival rate since almost everything it lists has been with me all my life. Has anyone else compared POTS to MSA or Pure Autonomic Failure (PAF) and thought they have a heck of a lot in common?
  3. JaneEyre9 thanks for replying!! The next symptoms that occurred were fatigue and IBS, which didn't concern me too much because that is supposed to be common. But this morning I woke up at 5:30 with muscle twitches on left side of body from eye to lips to leg to foot. My husband has been checking my reflexes all along, and they are still strong. So I took some magnesium and calcium lactate, drank some salt water and went back to sleep. When I woke up the twitches were less (but are on both sides) and the paresthesia waxes and wanes, but my BP/HR started going bonkers, so I did more fluids and salt, plus compression leggings, and the BP/HR is now stabilized. My doc has been texting to check on me and we think the vaccine just lit up my dysautonomia and made the POTS symptoms much worse. We are keeping an eye on the pins and needles and twitches which have never completely abated. It's been 72+ hours since the shot - don't know how long this could go on. It's very disconcerting. Do you remember how long it lasted with you? I'm taking a long nap this afternoon, I just can't get anything done with all this going on anyway. Good idea about reporting to VAERS. I'll ask my doc to do that. She is great about understanding how things affect me that don't affect others.
  4. Actually WinterSown, my post was about side effects that I am having from the shot which I already got yesterday. But, I didn't know benadryl had an affect on paresthesia. Unfortunately I can't tolerate it, or I would try it. Thanks for the information. 😊
  5. I had the Tdap shot yesterday because I cut my finger. Within an hour of getting the shot I started having prickly (parethesia) sensations in my hand and then throughout the day the were fleeting in various parts of my body - a prick on my back then a few minutes later a prick in my wrist then a few minutes later a few on my knee, etc etc. I called the urgent care just before they closed and they said I could go to the ER if I wanted. I did one of those "ask a doc" online services and we spoke on the phone. He said there was almost 0 chance I had tetanus because of the nature of the cut and that the anxiety of the whole thing could be causing pins and needles as that is a common symptom of anxiety. I have also started some new physical therapy exercises for my neck and he said to do those when I got home. So I did. My husband is a nurse and did a deep dive and his research came up that Tdap is not associated with Guillian-Barre - there was a huge study and only one case associated with it and that was less than the 2.2 that should have had it based on just statistical random chance. But on all the side effects lists for this vaccine it says if you have numbness and tingling in both hands and feet to seek emergency care - they don't come right out and say G-B though as the possibility. He thinks it's a CYA thing for the vaccine companies because of the belief that the flu vaccine caused an uptick in cases several years ago. So this morning I woke up and there are increased symptoms. There is more numbness and tingling and it is on both sides of my body. I called my doc and she said that Tdap is not associated with G-B, but with my dysautonomia she said I should watchfully wait and see if things get worse. She did not want me going to the ER at this point because they would do a spinal tap with all the risks involved with that, and our little rural hospital ain't the best. I'm supposed to call in later today and keep her posted. She also said my neck problems could be causing it, but without an exam she couldn't tell. (She's an osteopath and can do manipulations, too.) I read where electrolyte imbalance can cause this, so I'm drinking some coconut water, eating avocado and adding salt to water. Has anyone had a Tdap or other type of tetanus shot and had any dysautonomia type side effects? I had a real meltdown in 2013 from dental work that left me unable to walk for about 6 weeks and I laid on the couch for about 9 months and had to miss work. I'm fearful that the preservatives in the shot may be causing the problem. Any insights would be so appreciated.
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