Undifferentiated Autoimmune Disorder

although I have been newly diagnosed, I feel like I know this disease very well. My (several) doctors have explained it to me (as well as several web sites, and other professionals and lots of good people who have shared what their MCTD is like) that this is a real disease. It can become life threatening and should be carefully monitored by your doctor(s). Mostly what it is is having an autoimmune disease that is probably pronounced such as raynauds, or maybe a thyroid problem, but also have the underlying symptoms of lupus, RA, or scleroderma, and possibly others. Any one of these diseases can become full blown, and more than likely if you are having serious symptoms like i am, one of them will. however, if your symptoms are mild, they may not progress! Or you may go into remission indefinitely.
I have every RA symptom there is, and some lupus and scleroderma symptoms. I take plaquenil, prednisone and a host of other meds for autonomic neuropathy.
I find there is no telling from day to day what will happen...Undifferentiated only means there is not yet a full blown disease named which would be causing the symptoms...it does NOT mean there is no disease...there is...WILL it develop into a full blown NEW disease is the question.
Today, unilaterally, every joint in my body from my head to my toes is inflammed, sore, clicking and popping in and out of place..my fingers feel like they are broken. I am SO tired and even my pelvic bones are clicking.
I am writing this because I KNOW there are more out there like me...more who need to know what this means...every case will be different, but every case should be taken seriously as every autoimmune problem is exactly that...a problem. my wish is not to scare anyone, but to shed some light....
I do not know how this happened, but I have had autonomic neuropathy for 11 years....it could have been a virus, a surgery, a flu shot...anything that triggered what was underlying. I have ALWAYS had raynauds symptoms, but never like I have now.
I am not trying to alarm anyone, but to me, knowledge is power.
Good luck to all of us!
Laura

Report post

30 replies. Join the discussion

I totally agree. I get so disheartened because no one seems to take my "undifferentiated" diagnosis seriously, except my Rheumatologist--thank goodness he does!

I met with a new primary care provider, and frankly was unimpressed. Basically said he had no idea what to do with me. He did request my records from my Rheumatologist, which is encouraging. My old PCP has not once talked to my Rheumatologist.

He did say maybe you have a milder cousin of sjogren's. I let him know that calling what I am going through "mild" really made me feel as though he is disregarding my symptoms.

I have started a UCTD forum, dedicated to just UCTD. I also believe knowledge is power and there just wasn't a whole lot out there for me to glean a bunch of info on. I do have a thread of links that I put UCTD info on, so if you have any you'd like to share I would love to put them up there. More knowledge the better! http://uctdsupport.forumotion.com

I am struggling with severe pain, that can be crippling some days, gastrointestinal issues and autonomic neuropathy. I am completely deficient of B2 (Riboflavin) which is very odd according to all of my doctors. Some folks are low, but I am completely deficient. The only info I found on complete deficiency was a study they did on dogs and riboflavin free diet, the dogs went into a coma and died. I hardly think that whatever this is, is mild... URGH!

You are not alone in this undifferentiated diagnosis and I look forward to sharing information!

-AKR

Report post

THANK YOU! I am going to go to your link forum. This is a very serious disease as something (or THINGS) are trying to fight your body, it's just hard to say which one is doing it.
I do infusion as I have very low hemoglobulin and can't fight colds, let alone anything worse.
It isn't going up much, so they will be increasing my dose. I am ALWAYS VERY low in D3, and sometimes B1...I take potassium every day. My muscles ache, twitch and I have a hard time walking some days because my hips feel like they have been jackhammered. I wear arthritic gloves to keep the swelling down in my hands...three of my fingers look like witch fingers.
I am always so bundled up and still feel cold but can suddenly feel like I am burning up.
Can't wait to get to the thread! Thanks for doing that!
Laura

Report post

WOW!!! It sounds like you are going through a lot of the same things I am!!!!!

I have swelling in my arms tonight, feels like a hardened area under the skin. My ankles and wrists often feel like they have been jackhammered! Crazy!

At least WE can take each other seriously since we both are going through some of the same things!!!

WOW!!!!

-AKR

Report post

I agree! I know I have autonomic neuropathy...I see you do, too. Mine is iodiopathic. Is yours?
My hips and hands are the hardest for me. How long have you been diagnosed? and I am sorry you're hurting. Do they give you anything for the pain?
Did you have another illness before being diagnosed with this?
Laura

Report post

Hi
I have been treated for SLE - Sjogren's crossover with features of Scleroderma for 15 years. Over time, I have seen six rheumatologists. One was a famous consult, one I ditched, and I have a new one now. The rest all left their practices. Until this new guy, none have ever questioned the diagnosis. He ordered new labs, and a whole body bone scan. I read the scan order....UDCT. What? There is no cure for SLE, so how did this happen? I have been through some mighty toxic treatments, one producing remissions. Still, symptoms always return eventually. Now, I wonder if he just wrote UDCT to avoid having the radiologist look at his scan with some prejudice of a prior diagnosis. Or, is this what he really thinks? To say the least, I am confused.

Autoimmunity really stinks.

Fran

Report post

You said it, fran! Scleroderma is usually a part of UCTD, as well as lupus and RA and a couple of others...undifferentiated only means one of the diseases hasn't tipped the scale over the others yet, but scleroderma would usually be the one, esp. if you have RA symptoms.
There is no cure for UCTD either and the symptoms can and usually are just as bad as any full blown disease.
Sometimes worse as you can have symptoms from SO MANY autoimmune disorders at the same time!
THIS is why we need to be seen regularly, esp. if any new symptoms arrive..
Some days I have full blown lupus symptoms, sometimes full blown sjogrens, and ALWAYS RA symptoms.
This whole disease is a meshing of several autoimmune disorders, so I am not sure how to answer your question...
Am I making it more clear to you what this is? or more confusing.?
Laura

Report post

I think that my neuropathies are a result of vitamin deficiencies. Mostly I believe my gastrointestinal system is affected and so is my temperature regulator. It is just broken I think LOL. I have been deficient in B2, B12, D and Iron. In particular my B2, which doesn't not seem to respond to supplementation at all. The other levels have gone up. But am not really sure of the causal factor, which I am trying to get my doctors to figure out now.

My hands and my ankles/feet are the most painful for me. I was just diagnosed 1.5 months ago. I take Plaquenil 400 mg, just discontinued 1500 mg of Neurontin as I didn't see any positive result. I take 200 mg Extended Release Tramadol and 100 mg of Instant release Tramadol (2 50 mg) per day. They don't help, at all. My biggest problem is that none of the medical professionals seem to understand here in the small city I live in. I just wrote a letter to my Rheumatologist and hope he can help me further.

What helps with your pain issues?

I am glad we connected.

-AKR

Report post

We'll see what he comes up with. Appointment is tomorrow afternoon to review the labs and scan. To his credit, he ordered labs I haven't had before (didn't know that was possible!) In spite of the UCTD mention on the lab order, he was talking about re-treating with rituximab which was very successful when the diagnosis was SLE.. or seeing how long it will take to obtain the new Benlysta. If the wait is not too long, he wants to treat with high dose prednisone. Blech. :(

Should be an interesting appointment. Whatever his "diagnosis" is, I am staying with this group. It makes sense with the multiple autoimmune problems.

Fran

Report post

I know! It's the only thing that has made sense at all to me!
Good luck today and let me know how it goes....
what is Benylista?
Laura

Report post

Benlysta is almost approved for SLE. It's the first treatment FDA approved for SLE in over 50 years. It went through trials several years ago as Lymphostat B, but didn't fly. Now it is back with a new name and new successful trials. It's a biologic that quiets a B-cell / T-cell regulator. That's all I know about it. :) Fran

Report post

well I hope whatever should happen for you does! Fingers are crossed. Let me know.
Laura

Report post

Well, neurontin made me walk into walls, and i do have tramadol, but vicodin seems to work for me.
I used to wear fentanyl patches when the pain was unbearable, but i don't anymore. Oxycontin doesn't really help with this kind of pain, I found, so I stick with the things i have and the plaquenil. I does help.
Maybe you need to see a pain specialist?
Laura

Report post

P.S. nothing ever TAKES al the pain away...it just makes it more bearable.

Report post

I just want bearable.... I requested my Rheumatologist send me to a pain specialist down in Seattle. I really just want to be able to tolerate the pain. So far the pain just leaves me exhausted and miserable. I'd settle for being able to tolerate it.

On top of my body pains, I have been struggling with a headache the past week. Not sure if it is a response to stopping the Neurontin.

I sure would like to find a doctor who will address my pain issues. I don't feel good at all today... weak, a tad nauseous and really sore in my right ankle/foot. Just wish it was easier, just a little bit. I feel like if it is my lot in life to struggle with this, well, that's what it is. I just want a bit of relief... I mean a whole cure would be great LOL but I am trying to be realistic.

-AKR

Report post

A cure would be AWESOME!
Well, can you ask for vicodin? It seems to have a more relaxing effect without making me sleepy...also, I take klonopin at night to sleep and without that, I am SURE I would be in a lot more pain.
I am sorry you're hurting today! :(
Laura

Report post

I have used Vicodin, but the doctor is extremely leery handing it out. I understand their hesitation and caution, as I was a drug and alcohol counselor for most of my career.

I have been fighting insomnia, mostly from pain waking me for a while now. I don't want to take the SSRI's they keep trying to force upon me, as I did not respond well to them in the past.

I am frustrated!

Report post

How weird! i was in CD and psych for 10 years myself!
I am not recovering from anything, but my daughter is and is currently IN a dual DX facility...I was the director of intake and marketing, but went to school for both psych and CD and was allowed to do assessments and do some groups while i was in school.

What about asking for a low dose of klonopin?
I take the lowest dose before bed and it USUALLY allows me to sleep through the night, or at least something like sleep which is better than NO sleep which is what i was getting before!

Report post

I am not recovering either (except from a rough divorce with my ex-husband LOL)! I was an assessment counselor for most of my years in CD treatment! I also worked in a residential facility for seriously mentally ill adults. I loved doing the work but over the last 2 years it really just was too tiring. I think I have realized after switching to a part-time job (that I resigned from in September) that anything was too tiring! So I hope that some day I will be able to return to some form of social service, I have a lot of hope in the Plaquenil!

Anyhow, how odd...

I have missed a lot of sleep as of late, and I know that is not helping!

-AKR

Report post

That is certainly odd that we have such similar backgrounds (I, too had a messy divorce but have been happily re-married for 11 years now)
I also worked with seriously mentally ill, and both my children have schizoaffective disorder as well.
You need sleep. i can't function w/o it and my pain level is always much higher when i don't.
Any chance they would give you something for sleep?
I have not been able to work because of the autonomic neuropathy and because I suction from my peg tube and just never know how I am going to be minute to minute some days...are you like that?
L
L

Report post

Just out of curiosity...is there a significance to your pink rose? it's lovely and one of my faves.
Laura

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Advertisement

Advertisement

Discussion topics

Community leaders