Freaking Out

[Liffa]

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? 

 

 

[Pistol]

Dear @Liffa - I am so sorry you have to deal with all of these issues and understand your anxiety. One of the most obvious symptoms of developing MSA is orthostatic hypotension with dizziness/ lightheadedness upon standing according to this website:

https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/symptoms-causes/syc-20356153

Do you suffer from this? You might want to see a neurologist about your concerns, many of your symptoms sound like a neurological problem and a neurologist should be able to confirm or rule out MSA. From what I understand MSA develops rather fast and most of your symptoms have been life long - that might be a good thing. 

You mentioned they at some time considered mercury toxicity. My mother ( now 87 years old ) had POTS symptoms since her 50's and also had a reaction to dental work. They thought she had mercury toxicity from all of her old fillings so she had them all removed - later they found out that she did NOT have mercury toxicity!!! 

I hope you find some answers - best wishes! 

 

[MomtoGiuliana]

So sorry you are having such a hard time.

Here is information about PAF that may be helpful:

https://www.dinet.org/info/paf/

There is overlap of symptoms with these different conditions.  Hope you can find a specialist who can diagnose and treat you properly.

[Liffa]

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.

 

[bombsh3ll]

I am a doctor although no longer able to work due to POTS. I had not heard of POTS until I got it, and at the time I remember my mind going to the worst possible case scenario of what can cause a person to be unable to stand without fainting. For a while back then I had myself terrified I had MSA. I was 34 at onset so it would have been very unlikely! To make matters worse I tried a few SSRI antidepressants (as I had read they helped with OI, not because I believed I had anxiety or depression), and they made me jerk whilst asleep. Well, then I read about RBD, and you can imagine...

I now know that I don't have that, although I remain very disabled with POTS. Just wanted to say most people with our symptoms have at some point come across MSA and been worried.

MSA is very rare and you are right it would have almost certainly shown itself with motor features by now. 

Have you had an ENT examination with a nasendoscope to check your vocal cords?

B xxx