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Old 02-07-2016, 08:03 AM #21
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Originally Posted by SylvieM View Post
My baseline BP is very high...so Florinef and salt are out. DX is neurocardiogenic syncope and POTS....you understand the relationship!

And yes, my BP is all over the place...even with three meds. Lots of tachycardia too.
As noted, this is why I feel so sick. I also think I'm now deconditioned...My muscles are a shadow of what they were just 18 months ago. But I am stronger in yoga, and my balance is good....

I'll know a lot more on Tuesday when I meet with the cardiologist.

Thanks!
OK. I had written this reply in follow-up to stillhoping's comment about the trying the Florinef and salt...yet I thought she said she didn't have BP problems, only POTS. I was a bit confused for why she would be Rx'd this med if she didn't have BP problems, as that it why it is used.

But, now I know more about your condition. I now realize my PM to you probably made no sense, given your high BP. So, I will rethink this with the more info I have and get back to you.
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Old 02-07-2016, 09:33 AM #22
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OK. I had written this reply in follow-up to stillhoping's comment about the trying the Florinef and salt...yet I thought she said she didn't have BP problems, only POTS. I was a bit confused for why she would be Rx'd this med if she didn't have BP problems, as that it why it is used.

But, now I know more about your condition. I now realize my PM to you probably made no sense, given your high BP. So, I will rethink this with the more info I have and get back to you.
Thank you so much!
S
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Old 02-07-2016, 09:33 AM #23
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Florinef (Fludrocortisone) is to help increase BP by retaining fluids...as is the high salt diet. So I guess you had (at one point, at least) some drops in BP to warrant trying these. Are you not having any problems now with BP?

Were you ever Dx with NMH/OH?
I don't have NMH/OH, just POTS.
I tried this treatment twice. The first time was when my POTS was just diagnosed, I had normal BP and the Florinef, salt and water raised my BP so I had to add propranolol. I am very sensitive to medication so it took a few months to find the exact combination, and I continued for about 2 years.

I tried to return to this treatment recently, my BP now is lower (100-80/60-70), probably because I hardly eat salt or processed food. So this time I didn't need the propranolol. I couldn't tolerate the salt because of GI and iron issues, so I stopped it.
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Old 02-07-2016, 10:18 AM #24
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I don't have NMH/OH, just POTS.
I tried this treatment twice. The first time was when my POTS was just diagnosed, I had normal BP and the Florinef, salt and water raised my BP so I had to add propranolol. I am very sensitive to medication so it took a few months to find the exact combination, and I continued for about 2 years.

I tried to return to this treatment recently, my BP now is lower (100-80/60-70), probably because I hardly eat salt or processed food. So this time I didn't need the propranolol. I couldn't tolerate the salt because of GI and iron issues, so I stopped it.

That's what I thought you said (that you DIDN'T have NMH). That's why I was confused because Florinef is used the treat NMH and to increase BP. Not sure why they would have Rx that for you if you didn't have NMH or low BP. The medicine is designed to retain fluids to raise BP...that is all it does, so it made no sense why they would Rx this for you.
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Old 02-07-2016, 10:54 AM #25
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That's what I thought you said (that you DIDN'T have NMH). That's why I was confused because Florinef is used the treat NMH and to increase BP. Not sure why they would have Rx that for you if you didn't have NMH or low BP. The medicine is designed to retain fluids to raise BP...that is all it does, so it made no sense why they would Rx this for you.
This is also a treatment to POTS, two doctors recommended it to me even without NMH or low BP, and I know others with POTS without NMH who got it.

The goal of this and other treatments for POTS is to increase the amount of blood reaching the head when standing. Either by increasing the blood volume or the vasoconstriction.

Have you used Florinef and salt ?
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Old 02-07-2016, 11:37 AM #26
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I have used Florinef, Midodrine (vaso-constrictor) and salt for 19 years.

The sole purpose of Florinef, is as you said, to increase blood flow to the head. it does this by helping the body retain fluids and increase BP. The reason your BP increased when you took it is because that's exactly what the medication is supposed to do.

That goal you mentioned is exactly what those with NMH also need. Because that is what is needed when BP drops too.
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Old 02-07-2016, 12:45 PM #27
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Hi Sylvie,

Thank you for this information. I may have found a local specialist who knows Afrin too, so that's good. I'll definitely update this thread when/if I proceed. In all honesty, I want to pursue this path because I want to know the etiology of it all, it's who I am, not because I think it will help cure or heal me. My guess at this point is that I had some sort of infection, whether bacterial, fungal, etc. via the gut that became systematic eventually and has caused autoimmunity. I have no problem believing all sorts of things may have gone wrong in my body and to say that one intermediary mechanism of action was my mast cells going off the rails, so to speak. I want to know and if I can figure it out, I will. Diet is the key here and it is what has made the immense difference for me. I will continue to heal my gut and go from there. But I wish to look into this among other things, and though I may have inspired you to post about MCAS, you inspired or motivated me to look into this. It makes sense. Thanks again.

Also, the article I posted is actually Mastocytosis, well per se, it's about systematic mast cell diseases, and deals quite extensively with MCAS too. One thing that may have to be done for anyone who has issues indicating MCAS, especially after preliminary blood tests and depending on what they indicate, is testing for Mastocytosis. Regardless, if you read on, the meeting concerns primarily MCAS.

I would say it's as bad as it gets for women, given sexism, and older women due to sexism and ageism, for sure. But I can't tell you the number of times physicians will not look into things or take me seriously despite my complaints and when I've already been diagnoses with SFN and other problems with unknown etiology, because I'm young and I "look good", whatever the hell that means. But I can hold my own, and no doubt it's definitely easier for a young male, who doesn't have to deal with sexism and ageism.

Thanks again for your kind words and the information. And good luck on finding competent and empathetic physicians. They exist here and there...


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Hi David,


Here are some contacts for you: please look up full addresses, for I don't have them ..sorry.

The two I contacted:

Lawrence Afrin
University of Minnesota -Hematology
Afrinl@umm.edu
His assistant is Georgio Walberg
612-625-9604

I wrote Afrin and Walberg wrote me back--stated Afrin read my letter...nice.

Cem Akin
Brigham and Women's Hospital, Boston
617-278-0300
(I called and assistant returned call)

Other docs:

Maria C. Castells
Brigham and Womens
Colleague of Akin

Theoharis Theoharides
Also writes with the two above
716-636-6898

And by the way, you know the Afrin article you posted up is on Mastocytosis, a far more serious disorder than MCAS?...I just skimmed it, but will check out page 149. You know you inspired my post...I really hope MCAS is the answer for you. I also had to smile at your sense of ageism (although I get it...how can a big, healthy man complain about obscure, subjective symptoms? ) Yet it ain't easy being a 60-year-old woman who flings around medical jargon. (I'm still working on my patient persona.) I'm so lucky I found a couple of smart, open doctors. My cardiologist is a peach. Yet, I'm still hunting for the elusive smart and empathetic neurologist!

En Bloc,

Speaking of smart....I again have to thank you. Is your neuro/rheumy Julius Birmbaum at Hopkins' Sjogrens center? My rheumatologist suggested I go there, and I know another patient of his from another forum (perhaps it's you....forum aliases are confounding!). My sister is in Baltimore, so it could be an easy stay for me. I'm eager to see if he'll test you ...perhaps I should see him?
.
...I look forward to your message (no rush!).

Sylvie
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Old 02-07-2016, 01:55 PM #28
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Dear David,

Thank you so much for your letter....Lovely and supportive in every way.

I'm sure your great energy and drive will lead to a diagnosis and effective treatment for you. Meanwhile, I and everyone here will continue to learn much from your voyage!
Now I'll read the article you posted for me.

Again, thanks so much.

S
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Old 02-07-2016, 02:07 PM #29
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David,

I think this really may have an impact for you based upon some of your specific symptoms and reactions.

Autoimmune disorders are typically triggered by something and infections are at the top of the list. They don't have to be in the gut (mine was upper respiratory infection, same as many others I've talked to with Sjogren's), but it really doesn't make a difference 'where' it took place. It's the action in the immune system triggered by the infection that matters.
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Old 02-08-2016, 05:37 PM #30
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Thank you, Sylvie. You're too kind. I appreciate the kind words and encouragement. I hope you're right, and I'll do what I can on my end. In the meantime, I've found a real expert in the field and will be referred to him in the next few weeks. It may be months before I see him, but he is an expert in allergy and immunology, with MD and PhD, and diagnoses MCAS too. Let's see what happens. I'll also write Dr. Afrin in the meantime.

Let me know what you think, once you've read it. The case I referred you too - and I recommend it for anyone interested - is one where one of the symptoms is PN, and one other, extremely bizarre symptom. It's fascinating, if nothing else.

Be well!


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Originally Posted by SylvieM View Post
Dear David,

Thank you so much for your letter....Lovely and supportive in every way.

I'm sure your great energy and drive will lead to a diagnosis and effective treatment for you. Meanwhile, I and everyone here will continue to learn much from your voyage!
Now I'll read the article you posted for me.

Again, thanks so much.

S
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