Yeah! an autoimmune forum
 

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

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:p

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:D

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

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

Hi everyone
 

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:)

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

Hi everyone~

Hashimoto's and Pernicious anemia here...with gluten sensitivity in the family~

Cara

Chemar~

I'm curious to hear more about the The Makers Diet. I've heard of the book, but I'm curious about what dietary changes are recommended? From what I've read, both yeast and gluten may have possible implications in Crohn's disease. Has your son been tested for Celiac Disease?

I've got a few entries about Crohn's in TGF.

I also wonder how the The Maker's Diet compares to the Specific Carbohydrate Diet, which also helps some with Crohn's.

It is great to hear your son is having positive changes in response to dietary changes!

Cara

This is a wonderful forum!

Autoimmune illness here too... Asthma, Celiac Disease, Pernicious Anemia and a bunch of antibody stuff... they want me to have some more tests because they say there are red flags for Lupus... depression and axiety as well.

It's nice not to feel like I'm alone with all of this... thanks everyone. :)

interesting fact about auto-immune disease
 

What correlates with giftedness in children? According to Ellen Winner at Boston college, here are the qualities and features that tend to be exhibited by gifted children: strong right-hemisphere development, language-related difficulties, autoimmune disorders, high levels of motivation, and social and emotional difficulties. American Psychologist, January 2000 Vol. 55, No. 1, 159-169.

So we are genius', just like we've been telling our families all along :)
Joanne
lupus, APS

Hi Cara
I posted a bit more on the thread that I started about the Maker's Diet

Yes, my son has been tested for celiac but it is not a problem. He did have candidiasis tho (GIT yeast infection) which we have successfully used the diet and Candida Clear by NOW to eradicate

it is really hard to explain the Maker's Diet in comparison to others as it is very much a whole foods diet and, dependent on individual allergies, all pure and natural foods are ok, with the emphasis on ancient Biblical dietary guidelines. The premise being, these guidelines werent merely for ritualistic religious purposes, but because God, the Maker, knows best what is good for us to eat!
The emphasis of the intitial 40 day diet is to balance insulin, and reduce infection and inflammation. Foods are eliminated and added to the diet via three 2 week phases, and there are also three levels of following the diet...basic, intermediate and advanced, with advanced being recommended for those with chronic health issues.

Once one has completed the 40 day plan, one's diet is maintained as per specific health needs

I cannot emphasize enough how beneficial it has been for my son, and how helpful the recipes are.:)

HI Liz, It's nice to "see" a familar face.
HI to the rest of you all too!!
I was told last year that the drs believes I have lupus with symptoms suggestive off FM, okay whatever that is suppose to mean.
I have however spent the past 7yrs mostly dealing with spinal disorders and chronic pain and after taken things as far as I can in dealing with those problems for the time I feel I need to learn as much as possible about these things now. I in some way have to find a means to take back some of my life!!
I feel like I have been living in a very small box and need to do some extensive remodeling!!
Looking forward to getting to know you all and hope that even though I don't know anything about these things that I will at least be able to help by being here and as supportive as possible for you all.
LindaM(suede)

Hi, everyone! Just realized I should have posted to this thread as soon as I joined in order to introduce myself. I had Graves Disease as a young teen, which wasn't diagnosed and treated until age 21. Am now (for the last 5 plus years) hypothyroidic as a result of the partial thyroidectomy (and my age, but we won't go there) and on Synthroid. Was diagnosed with Myasthenia Gravis in the 1970's, and take Mestinon for it. I'm currently between neurologists, the last two wouldn't accept the original diagnosis of MG (though it was made by one of the premier MG specialists of the 70's), but my GP believes it is MG, and keeps me in Mestinon. Nice to meet you all, and I look forward to a long and fruitful association.

Hi to everyone
 

I am happy to find you all. I have had Myasthenia Gravis since 2000. I used to be healthy and energetic. Due to MG, I had to retire from my job (which I really liked) this past January. Now, I am at home enjoying my family and grand daughter and resting whenever I feel fatigued.

I am also dealing with feeling cold all the time. My doctor has given me all the Thyroid tests which show I am ok. Even tried some thyroid medicine (Levothroid). It only gave me this BIG headache so I quit. I might look into seeing an Endocrinologist.

Glad to be here.

Cindy

Hi, I am new (sorta).

I used to be a part of the Braintalk forum many years ago when I was doing with "Multiple Sclerosis". Well, turns out I did not have MS. After several years of taking Copaxone and the Rebif, I found someone on another forum (Rose) who suggested B12 deficiency. I got checked and guess what, I was extremely deficient. My blood test came back 100. The neuro did not believe it and had me retested. This time the test came back 86. Neurologist decided I had both MS and B12 deficiency and continued pushine the drugs.

I have severe allergic reactions to the MS drugs and severe depression. After several trips to the ER because my eyes, lips, hands, tongue, etc. swelled up I decided I had enough. I asked for alternatives. He had none to offer me. So I went to a MS specialist.

One look at my chart and the specialist questioned my MS diagnosis. He sent me off for another spinal, MRI and blood tests. Conclusion...no MS.

At some point I was also diagnosed with Crohn's disease. I was on lots of meds for it also, but have found that changing my diet provides a much better solution.

I continue to give myself B12 once a month and continue to be MUCH better than I ever was. My husband tells people that he married one person and a year later she started taking B12 and turned into a completely different person.

The MS Specialist sent me to an immunologist. He was not able to pinpoint exactly what is happening with me (like many of you seem to have heard also). But he did tell me something that has helped me... he said I definately have an autoimmune problem, but that I needed to stop focusing on naming it or fitting it into a specific category. Instead he told me to focus on living the best life I can.

I have done that. For me that has meant, less doctors and less drugs. I found that if I took the drugs, they would maybe resolve one issue, but would cause another issue (fatigue, depression, etc).

Oh...btw, a little about me: I am 32, married for 3 years. My husband is 27. We have 2 Yorkshire Terriers. We recently purchased a house and decided to start trying to have a child.

I look forward to chatting with all of you.

M

Guess I go here too
 

Hi everyone. I'm glad to see I don't need a pigeonhole Dx to fit in here.:)

All I have is a bunch of confusing symptoms and a lot of normal blood tests -- so much normalcy I am beginning to think I'm nuts!

I really need some new ideas. :confused:

The only demonstrable signs of illness have been: swollen thyroid (no longer swollen, euthyroid), Raynaud's, persistent positive anti-thyroid peroxidase, a single mildly positive anti-cardiolipin, and positive IgM for EBV (since at least fall 2002). Amennhorea, unkown cause, resumed on its own after two years. Also mild sensory-neural hearing loss, nystagmus and coloric deficit on ENG. The face rash, I am told, is not Lupus -- it doesn't avoid the nasal folds and doesn't react to sun. The color changes and pins-and-needles in my hands and feet are triggered sometimes by cold, but more often by exercise and fatigue -- if I walk too far, my hands go blue and white! And while we know from direct observation that my hoarseness is caused by the non-functioning of my anterior vocalis muscle, no one can explain why it works when I am not flaring but becomes non-functional when I am more symptomatic.

At one point we wondered about myasthenia, since my eyes and face droop when I get tired, and my eye muscles and voice also get fatigued and stop working properly. When the doctor here observed that my neck muscles were weak, he sent me for an EMG and antibody test, but both were normal.

The rheumatologist here is prepared to let me stay on the plaquinil, and I also take an SSRI, anti-inflammatory, and Provigil. I sleep OK, and my sore points don’t bother me if I don’t touch them. Pain isn’t really a major facet of this, as long as I sleep enough.

All in all, I am very confused. I feel uncomfortable with the lack of a diagnosis -- it doesn't change the treatment, but emotionally it is hard to be sick for so long and not be able to say "this is what it is." Meanwhile I am working to increase my exercise gradually, I’m trying to lose the weight I gained from the prednisone, and it is coming down slowly. Other than that, I don’t know anything else I can or should do. If you have any ideas, I would be very appreciative. I don’t think my doctors here have any left.

Sorry this went on so long. I guess I needed to complain a little -- and this was the edited version! :o

Hope everyone has a good day -- if you can't have one, try to give someone else one!:D Hey, these smileys are fun!

Hi Shari
 

I think you've come to the right place for ideas. :D No normal people here :D :D

Lots of things to learn, like you I've struggled with figuring out why I'm sick.

The best thing that I have done that has showed some improvement in how I feel is, to alter my diet. Now gluten, dairey, soy free. This helped alot with energy as well as pain. Also extra vitimines (B12). Still not 100% but shooting for it. :D Nice to meet you, Patricia :)

Hi Shari and welcome to our eclectic membership :D

Hello there everyone.

I just thought I'd throw my hat in the ring as well.

I'm Noong, Aussie, Live in the middle of nowhere on a farm and have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

I've been around for a while. Don't tend to post much, but I'm here ;)


Noong

Hi Noong :) Nice to meet you

isnt cyberspace amazing where someone in the "middle of nowhere" Australia can be talking to folks from all over everywhere :D

I'm here too
 

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

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!!! :D 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,

loisba
 

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

Do over
 

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...:rolleyes:

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!:D

And Chemar -- I LOVE your quote!

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:p

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

neuroimmunology
 

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

Not that experience
 

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.

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. :D
Hugs,

Connective Tissue
 

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.

amyopathic dermatomyositis!
 

that is my diagnosis since aug 2005

Still waiting
 

I'm still waiting for a name for my Auto Immune issues (I have neurological pain attached to them)... I'm just glad they decided to start treating them with Methotrexate.

I was lucky that my Neurologist kept pushing to have me go to all kinds of specialists to figure out the problem, and he sent me to 3 Rheumatologists (My Neuro seemed to suspect I really needed one of these, as he never sent me to any other specialist more than once... maybe he felt this way because my inflammatory markers were high, and because of my history?) before they decided I def. had an Autoimmune Disease.

I just wish they has a name for what I had, as without one some people and Dr's don't think you have anything, and have a hard time dealing with you.

MG
 

My 9 year old son was diagnosed with Graves Disease 1 1/2 years ago and Myasthenia Gravis 11 months ago. Nice to meet ya'll. :hug:

Heidi

Hi! Autoimmune Goddess
 

Yes, it's great to have this forum. If you have an issue with another forum, you find yourself talking about your autoimmune disease anyway...
I've had Hashimoto's Thyroiditis since I was 15, vitiligo, glaucoma, Fibromyalgia (that was diagnosed by a specialist) I didn't think they believed in Firbomyalgia-glad they do now. Mixed connective tissue disorder which encompasses Lupus, Sjogren's syndrome. Oh! This is something I find interesting. A couple of years ago the endrinologist asked if I had ever had an ultrasound on my thyroid. I said no, and so he did one. He said, "Guess what? You don't have a thyroid anymore. There's not even a shred of tissue left!" So that meant that those mighty antibodies had eaten all of my thyroid. The good part - I won't have to worry about malignant nodules anymore. But it still feels strange to know that it is your own body that is attacking perfectly healthy cells that are yours. It's very strange to me. Fascinating but strange.

Sjogren's
 

Hi, I am glad to have found this forum too. I have Sjogren's (they think - seems certainty is hard to come by) and neuropathy so I have been monitoring the neuropathy forum but it seems that neuropathy is probably as a result of Sjogren's, so I guess this is where I really belong!

hypoparathyroidism since age 2
 

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

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! :p

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! :)

Congrats, Richie
 

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 :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 ! ;)

Myasthenia gravis here, with neuropathy & myopathy due to connective tissue disease, left temporal lobe lesions, Raynauds, optic neurits.
Mary

Hi Mary, Pearl, JC! :) Auto-immune issues are still something I'm learning about. I don't recognize many of the names, yet. You see, for me it is a "secondary" issue. Whatever is attacking my body (still no dx yet :o) has weakened my immune-system and made me susceptiple to otherwise harmless invaders. It also seems to have begun targeting me in certain instances! :eek: Talk about a major rebellion! :p I hope you are all finding ways to help control your auto-immune issues, and any other problems you have! And I would sure appreciate any basic insights which life has taught you about dealing with this kind of thing. Good luck and best wishes to you all! :)

Richie