[Silverlady]

Hi folks,
I'm here too. I was on the old BT on the Peripheral Neuropathy forum and the Sjogrens Forum. I have Sjogrens with neurological complications, Rheumatoid Arthritis, and I'm freezing all the time. Just thought I'd throw that in too. I wish we had some way to know what each person was suffering from when we read a post from them. I suspect we will forget as the forum grows. Maybe we could put a - after the thread title?

Billye

[loisba]

Welcome, Billye! I only belong on this forum by virtue of once having had Graves' Disease. I'm currently underactive, on Synthroid for several years now. I can't say I'm freezing all of the time, the hot flashes take care of that!!! But my normal temp is anywhere from 1 to 2 degrees below the average. I suppose that is from the thyroid. I remember when I had Graves' as a child, I sweated constantly. Now I try not to get too hot, despite my slightly lower normal body temp, since I have myasthenia gravis, which tends to get aggravated by heat. I usually post on the MG forum, but like to keep on eye on this one as well.
Which of your conditions causes you to be freezing all of the time?
Hugs,

[Silverlady]

I'm not sure at this point. I have sensory neuropathy and it may be that, it is currently undiagnosed. I see the doctor on Monday. I was anemic 2 months ago and haven't been treated for it. So it could have something to do with that. Will see that doctor in two weeks. Lot of things up in the air right now.

Billye

[shari]

Hi everyone!

I see I should have introduced myself better: I am 44, joyously married, mother of 4,
living in Israel (I moved here four years ago). And in case you were wondering, yes, living in a bomb shelter isn't really good for people who flare from stress...

Thank God, we're OK for the time being. And not to talk politics, but any and all prayers for peace are welcome -- especially for peace on top of the ground rather than under!

And Chemar -- I LOVE your quote!

[Chemar]

adding my welcome to Billye

and to Shari........prayers for peace are always flowing here for your part of the world!

thanks for the comment on my signature quote.........I found it on an "unknown author" list of quotes and it sooooooo resonated with me

re Auto-immunity, I am learning more each and every day since my son's dx with Crohn's this past summer. Because of his also having tourette syndrome, we cant have him on corticosteroids, as they cause TS to wax, but we are really amazed at how his Crohn's symptoms are being kept subdued by the natural anti-inflammatories that he takes, primarily a mix of boswellin/curcumin(turmeric) and white willow bark, plus Omega 3 EFA (he takes flaxseed not fishoil as the latter makes him tic more) In addition, specific to GIT healing, he takes Slippery Elm and DGL liquorice, plus other calminative and healing herbs and vitmain/minerals

[fmichael]

Hi there. I too think its great this forum is up. (I posted last night on the R.A and Crohn's disease thread.)

What I find so frustrating in all of this is the degree to which the neurology establishment has really shown a particular disinclination to the consideration of autoimmune roots until it's pushed in their face, condition by condition. By example, I know that in the case of my ailment - RSD/CRPS - even though there is solid peer review evidence linking it to elevated levels of a particularly nasty pro-immune cytokine, IL-6, I couldn't even get in to be seen by a neuro-immunologist when I went through the Mayo Clinic in Rochester MN this summer.

And I had only a little better luck a few weeks later at Johns Hopkins Bayview. Where the very kindly and senior clinical immunologist who did agree to see me said that in his view it was potentially “unethical” to even try a therapy one someone whose specific condition hadn’t yet been shown to be amenable to the therapy, in the absence of a double-blind placebo controlled trial. Otherwise any results would be just anecdotal. Then the very junior neurologist who had finally been handed my file got me the name of an outside lab that could test blood serum and CSF for IL-6 levels, and I was sent on my way, along with the admonition that sometimes it takes 15 to 20 years to get from research results to patient trieatment.

Has anyone here had the experience of running into that particular wall? This sense of come back in X years when we can help you?

Mike

[Silverlady]

The one I dread is the one where they say, "Oh neurological complications from Sjogrens Syndrome huh?..well...there is no cure or treatment. Enjoy what's left of your life. It's progressive.".

[fmichael]

Originally Posted by Silverlady

The one I dread is the one where they say, "Oh neurological complications from Sjogrens Syndrome huh?..well...there is no cure or treatment. Enjoy what's left of your life. It's progressive.".

The one I heard, from someone who at the time was the first person brave enough to tell me the truth, was that "your condition is lifelong and progressive. It will get worse."

It's my hope - and that's all it is - that the development of the new anti-IL6 medications will (happily) prove him wrong.

[loisba]

Originally Posted by Silverlady

The one I dread is the one where they say, "Oh neurological complications from Sjogrens Syndrome huh?..well...there is no cure or treatment. Enjoy what's left of your life. It's progressive.".

Well, fortunately I've not had anyone tell me anything quite that bad about my MG. However, last year I went to a gastroenterologist about radiation damage to the bowel from treatment for cancer. He said: "Yep, you've got radiation proctitis. And it'll only get worse!" And it has! Oh, well, grin and bear it! The alternative is worse. I could have been dead of cancer.
Hugs,

[maryeliza]

Hi Liz,

Just want to let you know that you are not alone. I have a connective tissue disorder and now it seems I am coping with myasthenia gravis.

I am not a doctor or any kind of health care professional. So, do not take anything I say here as "medical advice". But, you may want to do your own research as I have done on the effects of environmental toxins. Which ones? Specifically two....1. Copper Copper causes a host of connective tissue disorders. If you have ever been raised by smokers, smoked, lived in an old house with copper piping, cooked in copper clad cookware or been on the birth control pill or under long term trauma or stress, been a vegan or vegetarian..... a hair mineral analysis may be in order to determine if you have an excess of this metal in your system. 2. If you routinely brush and rinse your mouth with fluoridated water and drink unfiltered tap water, that too can cause connective tissue disorders as that fluoride kills lysl-hydroxylase, a key enzyme in the synthesis of collagen tissue. If these two are not your case, there is a rare chance you may have ehler's danlos, a genetic syndrome that alters the connective tissue causing hypermobililty, joint dislocations and easy bruising and fragile organs. Lucky me, I have suffered from all three!

I found this forum while looking for info on how to calm myasthenia gravis down. My lungs are on the verge of crisis as I type this but I have no medical insurance. I am able to go to the university clinic but my appointment with the pulmonologist is not until the end of the year. I am counting the days and every breath I take.

If you wish to talk outside of here about this more, please feel free to contact me.

Originally Posted by Wittesea

BIG thanks to DocJohn for adding an Autoimmune forum.

Hello to the other autoimmune folks...

I'm Liz (30-something, female, married, no kids, 3 cats) with a Dx of UCTD - Undifferentiated Connective Tissue Disease.

Big mouthfull of words meaning it's something autoimune and it's something wrong with your connective tissue, but we don't know exactly what it is, so we'll just give you a big mouthful of words as your diagnosis.


I also have a few of the so-called "minor" autoimmune problems... Sicca syndrome, Raynauds, etc...

To top everything off is fibromyalgia, chronic myofascial pain, anxiety, hypermobility with chronic tendon injuries, TMJ, endometriosis, blah, blah, blah, etc....

Persoanlly, I think there is a bigger picture - one main medical issue that has yet to be diagnosed that will explain why I have so many diagnoses. I think all my current diagnoses are all meant to explain symptoms, not a diagnosis that will explain the problem.... and without knowing the big picture diagnosis I am stuck treating symptoms instead of treating the source.

So that's me in a nutshell. Anyone else care to introduce themselves?

Liz