Autoimmune bingo?

[hedgehog]

Last edited Tue May 15, 2012, 04:04 PM - Edit history (1)

So right now I'm waiting for the results on 20 (twenty) blood tests to figure out what's going on. The exact diagnosis will be based on which tests line up as positives.


I don't mind that - I'm just glad there's empirical proof something is wrong. Here's the rub - the GP did two sets of preliminary tests that showed something was going on. Wouldn't it be nice if we lived in a world where the Rheumotologist could order the blood work ahead of time based on the GP's observations? As it is now, I had to wait 3 weeks to get the first appointment, and now another 3 weeks to get the results of the bloodwork before any treatment plan is started!

On edit: I'm not a doctor, but I knew that nothing was going to happen without further bloodwork. In fact, at the appointment , I had to ask the nurse who took the pre-history if they wanted a urine specimen, and he had to ask the doctor. I knew they'd be checking that because some of the original tests suggested possible kidney involvement! (I'm not sure which is worse, waiting so you can contribute for a UA, or being asked to supply one and coming up dry because you went before the appointment!)

[NightWatcher]

1. I avoided the long drawn out test/wait/result/test game

I showed up in an ambulance at the ER back in the end of March presenting all kinds of crazy symptoms. 50 lbs weight loss in one month, inability to move upper legs and upper arms, fatigue, protein in urine, swollen feet....

I was in there for a week while the hospitologist ran 50+ tests (a la an episode of House). Everyone suspected an autoimmune disease, but we/they found even more. SLE (lupus), Lupus Nephritis (lupus in the kidneys and in my liver), Raynauds, and my fav... Dermatomyositis, a neuromuscular autoimmune degenerative that attacks the upper legs and upper arms as well as making swallowing difficult.

Enough about me, what I meant to say was that I was lucky because everything got done at once without the waiting games that everyone else had to deal with. I hope your tests come out well and give you the info that you need to treat yourself. If you wanna commiserate, I'll be around, bored to death because now I can't even work.

Good luck, take care.

[unapatriciated]

10. So sorry to hear of your diagnoses.

Dermatomyositis is sometimes overlapped by Lupus and other disorders. My son was diagnosed in 1991 with Dermatomyositis. His symptoms were a very slow progression of muscle weakness, fatigue and rash. It took me six months to get the blood test I requested in the beginning, by that time he was in the same condition you describe. I have Lupus in the family and the rash was what made me request specific blood test only to be denied until it was almost to late. Early diagnoses and treatment can limit the severity and the disabling effects of this disease. Physical Therapy are just as important as the medication in treating Dermato.

I wanted to let you know that Dermato also causes vasculitis and your doctors should be treating for this.

[brzysunset]

11. Lupus

That is a scary threat. I was diagnosed with Polymyalgia a rhumatoid/auto immune condition. I am also diabetic, thankfully I refused to take the 1 yr treatment with Predisone. I read it could make my controlled blood sugar uncontrollable. I took predisone for a couple 10 day terms and with occasional Naproxen I am doing mostly ok. But Lupus was a mentioned possibility. Still could be??

I have a problem today greater than the medical problem. As a Native American Indian, wherever a tribe is located, another tribal member can generally use their facility unless it is an expensive test or specialist outside of that tribal clinic. Then we have to go to our own tribe or have them make arrangements.

And it is not always the US Government that does the oppressing!! The Seminole Tribe of Florida is denying tribal members of other tribes to use their health facilities as of 7-1-12 for any chronic problem if your are not Seminole, yet my tribe the Choctaw Nation of Oklahoma tribe sees every person of Native American heritage with a Indian card (CDIB). So who is the oppressor? Indian Health Services meant long ago for Indians to have access to medical care. The Seminole Health states they will no longer treat anyone not Seminole for chronic conditions. Diabetes is a chronic condition and is prevalent in all our Indian families. They will see us for acute condition- short term duration like the flue and Indians living in Florida with Diabetes or other chronic illness patients are now uninsurable and thrown to the wolves. If you can help by faxing or sending letters stating this is unfair treatment, I would appreciate it. I am Choctaw and my tribe Choctaw Nation of Oklahoma treats all Indians of all tribes in clinics across Okla.
Connie Whidden is the Seminole Health Director- Her Fax [phone]-Phone [phone] address Seminole Tribe of Florida 3006 Josie Billie Ave., Hollywood, Fl. 33024

Thank you for allowing me to address this issue on your thread. Today is my first day as a member at DU, and they won't allow me to start my own thread yet. I am in tears, I was insurable when I started going to the Seminole clinic 7 years ago. Now that I have diabetes I can no longer buy affordable insurance. The govt insurance is $370.00 per month for one person my age (55).If the Seminoles can do this to me, it can be done to any Indian anywhere. If I can't find a job with health insurance, I may have to move back to Oklahoma for my needed diabetes care. I have lived in Florida for over 20 years.

[ProfessorGAC]

2. I Know The Feeling, Double H

I got hit with an arthralgia storm. They think that's autoimmune related, just like my MS. I'm on a corticosteroid right now and it is helping a lot, but that's treating symptoms, not causes.

Have to wait an extra week to see the next doc.
GAC

[hedgehog]

3. Thanks for the support, it really does help!

[hedgehog]

4. And the winner is: Sjorgen's!

Last edited Tue Jun 5, 2012, 06:40 PM - Edit history (1)

Not the worst possibility!

But now I have to get more tests!

It's the waiting I hate!

[mopinko]

6. is it an ssa/b thing?

i am ssb pos but not ssa. it would be lupus if it were both, but sjogrens is what they have said. trouble is i have no other symptoms of that, and passed the tear test and all that with flying colors. all i know is that i have a big case of fibro. they are watching for lupus to appear, but so far it hasn't.
so much technology, so much information, but still so many questions.

[hedgehog]

7. I have to admit, I'm not comfortable enough with the specialist

to demand to see copies of my lab work. I'm hoping my GP has them so I can look at them the next time I'm there.

I have family members that have brushed up against the auto-immune spectrum, so I'm not surprised to be running into this. I'm not entirely convinced that the many different syndromes are actually all that different. I suspect it's the same process focused on different organs. Unless the treatments vary, I'm uncertain of the utility of considering them as separate entities. What would be sweet is if someone could develop methods of measuring some of the more subjective symptoms such as muscle pain and fatigue. A lot of the stress would go away if I knew for sure when to push myself and when to take it easy!

[mopinko]

8. when to push myself and when to take it easy!

if you can find the answer to this, you could get rich beyond your wildest dreams.

[ProfessorGAC]

5. Going Through It Too

Diffuse arthralgia. This is symptomatic of lupus, scleroderma, Lyme disease, parvovirus, and a few others.

Well, the ANA test came back negative suggesting it's not the first too. The Lyme and parvo test are very specific and those are negative.

So, i've got swollen fingers, sore knuckles, wrists, forearms, elbows, shoulders and knees, and so far we have no idea why.

This on top of having MS for 18 years. Geez, i can't catch a freakin' break.
GAC

[hedgehog]

9. Well, that was interesting -

I was dubious about the diagnosis because if I have the hall mark signs - dry eyes and dry mouth - it's very early stages yet. However, reading through the handbook that listed associated problems such as high incidence of GERD,itchy skin, itchy ears, etc. I was nodding my head. What really tickled me is that over the years, I've been taking the recommended prescriptions and OTC supplements to address these associated problems.