[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

[Chemar]

Hiya Liz

I am soooo pleased to see this forum has been added too.

I originally found Braintalk while learning about Tourette Syndrome, which my youngest son was dx with almost 7 years ago
Well, this past year he has been having some wierd abdominal pains and we had a real run around with misdiagnosis until this summer when a colonoscopy showed he has Crohn's Disease

so,
now I have had to start researching ways to help him all over again!

One of the biggest probs is, my son reacts very severely to most prescription meds and if there is a potential side effect..........he seems to get it!
That was why I got involved in alternative treatment research for Tourette's

Anyway, sure enough, my son had really bad reactions to the ant-inflammatory and immunosuppressive drugs for Crohn's that they tried him on, and so I am thankful to have found excellent info re natural things to help him and we are seeing really good results, as evidenced by his most recent blood tests

I will post more about just what is working for him if anyone is interested.

But I am nevertheless pretty ignorant on the vast area of autoimmune illness and so I am here to be a sponge and soak up as much info as I can

Hey Curious! Could ya stock up this room with yer coffee and choccy goodies too pleeeeeez

[stumps]

Hi, can I tip-toe quietly into this forum as well please, autoimmune thyroiditis, autoimmune atrophic gastritis, pernicious anaemia with postive rheumatoid antibody stuff as well with an 'umberella diagnosis of mitochondrial cytopathy..

Gillian

[Gabe]

Hi...
I have Myasthenia Gravis, so I guess this is where I shall hang out too..
Gabe

[turner]

My names Patricia, I was on the old Bt I have probable MG, gluten intolerent, and lots of other stuff that know one cares to figure out.
Gabe I remember you, how are you doing?
Thanks Liz for getting this forum added, great to be here.
Nice to met you all. Patricia

[Gabe]

Hey Patricia...
I'm doing ok...due for IVIg on Wednesday and I am way ready! I had a crappy day at work and it was good to see a familiar name!
Gabe

[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

[jconner]

my daughter,now almost 20, has suffered from autoimmune disease like me. Although hers is different from my RA, she beagan at age 2 with a hypocalcemic seizure, followed by Hashimotos Throiditis at age 7 and autoimmune hepatitis at age 16.( we thought birth control pills brought on hepatitis). shes a rare one,in all ways. my love for her is so strong, shes really a trooper. Now in nursing school brought on by living the hospital life, hopefully her disease will not take her down like mine has. Pray for her to do great things and live a healthy painfree active life. joyce

[Idealist]

How cool! I just picked auto-immune last week as one of the forums I wanted to moderate, and I wanted to get better aquainted with the forum, and voila! Here it is! Sort of a history of the forum from the very first day!

I suffer from a weakened auto-immune sysem, as part of a larger systemic illness which includes neuragia, neuropathy, muscle weakness & pain, and a host of other symptoms. I really look forward to getting a better grasp of this aspect of my condition. I'm tired of all the aggraviting skin-infections, and the overgrowths of "healthy" bacteria.

I hope to get to know you all a lot better!

[pearl girl]

Hello! I was happy to see your face when I just 'happened' upon this spot. I want to wish you well in your new endeavor. I know we will all be better for your involvement! Life is interesting. Never did I think I would be posting a message on an autoimmune disease forum. I've read all the messages and I too think there is a link, a bigger issue involved than has been discovered -- YET! Even my recent diagnosis of Pernicious Anemia is considered to be autoimmune due to the intrinsic factor antibodies I produce. It's all devastating and yet amazing. The world needs more Idealists to lead the way... all the best and a big hug from your new friend, NancyLynne. PS I consider this discovery of your site a 'good omen' for I was quite upset today because of the discovery of further brain damage due to the very late diagnosis of PA. Now I'm getting back on the right foot mentally !