New Rheumy New Diagnosis?

[SjoGirl]

Seriously, this is my fourth, fifth or sixth rheumatologist and now she maybe has a different diagnosis.

I was originally diagnosed with SjS based on bloodwork and symptoms. Then I was diagnosed with undifferentiated tissue disease when I went to Hopkins for a second opinion and had a negative lip biopsy. Then I was told by another rheumy that I probably had lupus when I first saw them (they were the first and missed everything) and the last one said SJS and seronegative RA.

Now the new one, who I saw today for whirlwind visit, said maybe it's SjS, maybe osteoarthritis (and maybe erosive) or maybe SjS and RA .  . .

I was examined by a fellow and then the rheumy came in (very late by the way)and talked a mile a minute, ordered new sonograms of my hands, then took off.   

Soooooooooo frustrated!!!!!! Thanks for listening.

[irish]

Well, it seems like the diagnosis is getting narrowed down. Still possible Sjogrens and osteoarthritis is very common and is miserable when it is active. I have had it in my hands and feet for several years and it comes and goes. RA goes with Sjogrens very often and the reverse can be said. Sjogrens can go with RA. They seem to run together very often.

I would bet that you are getting close to getting thing more together. Remember that just because you get a diagnosis things don't suddenly improve. New meds may help both of these items but they are both diseases that wane and ebb. One has to learn to live with chronic diseases and find ways to deal with discomfort and limit activity to decrease flares, etc. It also helps to take classes on meditation to help decrease stress which in turn decreases our pain. Don't forget the heat and cold packs for comfort along with a blanket. Things sound like they could be improving.

You will probably be able to cut down on the doctors visits with the info you have found. The sad ting about autoimmune disease is that is has so many symptoms that are different in everyone. This makes it really hard for doctors to make a diagnosis that they can always be absolute sure about. So, every time we go to a doctor looking for a diagnosis the good doctors will do all the tests and blood work, etc and come up with a diagnosis. They feel good that they have made a decision. Then if one goes toy another doctor a new diagnosis can show up.

This is part of the autoimmune disease situation. It makes one not trust doctors and think no one is listening to us. I have hard so many cat scans and blood work and all these things were done over and over and over. I could never believe that my insurance would keep on paying. The problem is that we could refuse more scans and blood work when we see a new doctor but this could be detrimental to our health as our blood work can change as can scans. It took me from 1964 to 2003 to get diagnosed with Sjogrens.

Sometimes we just have to find a way to quit running to the doctor and rest and think about a new way to approach our issues.  It really is exhausting getting diagnosed and sometimes we have to wait so long and there is not a darned thing we can do about it but accept what is happening. Again an optimistic outlook does help keep us from loosing our cool--hard to do but necessary. Good luck. Irish

[katie1111]

I read somewhere - don't remember where except it was written by a doctor and on the internet- that we (autoimmune sufferers) should quit worrying about the specific autoimmune disease and remember that it is our autoimmune system and not the organ(s) affected that is disease.  It depends each day on what the autoimmune system targets that determines our symptoms.  That is why we have so many weird symptom and trouble getting a diagnosis or proper treatment.

Katie1111

[Carolina]

Dear SjoGirl,

Sadly, your experience is very common, especially for us.  I've been dealing with my Immune Disorder all of my life, so that's 77 years.  My immune problems began within months after I was born.

Irish explains how we are both affected by our myriad of 'conditions' and our experiences with the medical profession.

I thought I had learned to accept my Immune Disorder(s), but the sudden 'rampage' that started 20 years ago, drove me back into the arms of the medical community, in pure desperation.  Every year something 'new' has happened, and I'm left disabled, in constant pain, and exhausted.     

The good news is that medical science is making some progress in the areas of diagnosis and treatment.  The bad news is that delivery of medical care has become so expensive, that doctors never have time to get to know their patients.

And of course, a really bright, well trained and compassionate doctor is almost impossible to find.

So, I accept AND persist.  I Accept that what's 'wrong' with me cannot be fixed.  Medical science does not have enough answers. I Persist in seeking what is available to give me some relief.

And it is always something!

Regards, Elaine

[SjoGirl]

Thanks all for the information and inspiration given via your stories.

I'm not sure how you've stood it all for so very long! It's been about a dozen years for me and I understand and accept many of the things that you all have said. I do realize that this is a journey, I just am at another turning point and have enough going on in my life without this. I'm going to lose my job in eight months (at least I have that much notice) so am trying to decide what next.

This potential shift leaves me more unsure about that "what next". I could potentially retire but I don't feel ready. I could consult but am not sure how much income that will bring in and whether it can keep me paying the doctor bills. I don't want to rely on my husband to make those payments, we married later in life and he's gotten a bum deal because I got sick not long after we married.

I walk every morning and thank god for each day. I saved up my CC points and got an Apple watch to help me learn to breathe and be calm. When I was awake in the middle of last night angry about this I almost turned on my calm app but said, I need to be my own calm app, I was and I went to sleep.

Yes, maybe this will provide some clarity. Maybe it won't but will at least let me know how I need to adjust my life and thinking going forward. Thanks again for listening.

[SjoGirl]

One more thing, I was mad because both the fellow and the doc made me feel like a freak because I can't tolerate Plaquenil. The fellow kept saying that it's so well-tolerated by so many people. Well, not by me, I had headaches, night terrors (not just nightmares), night-time seizures, and more.

[Deb 27]

Sjogirl, yes, probably all of us have unfortunately been through this diagnosis dilemma. They try to tell us that the diagnosis doesn't matter but it really does.  I've been told I have RA, I don't have RA, and sometimes by the same doctor!!! Until I had an MRI on my L knee my current rheumy said he felt I didn't have RA, now he says I do........... I believe also your diagnosis matters because of what drugs your insurance will cover for your treatment. I was also told that by my current MD.

During the visit that the doctor told me I didn't have RA, on my insurance documents filed, it was it was a visit for RA! Really frustrating. I miss my former rheumy who retired and the one I had when living in the last town where I lived.

Bottom line, we want to feel better!!! I hope you can find another job. It sounds like you are doing well and want to continue working. That's a good sign, you must be doing well.

[irish]

Sometimes the people taking care of us are just full of it aren't they. They forget that they don't walk in our shoes and they haven't read "all" the literature on autoimmune. Irish

[eye2dry]

To katie111

Sounds like my doctor said that.

Shelly

[Linda196]

Eye2dry and Katie, I've heard a couple of doctors refer to Autoimmunity as a spectrum disorder, and I can see that, since in my case it seems to swing through symptoms from Sjogren's to MS, with some Lupus tossed in for bad measure, probably from the Sarcoidosis.

There are a few diagnoses that actually incorporate that thinking, like Mixed Connective Tissue Disease (MCTD) and CREST syndrome; and probably Undifferentiated Autoimmune Response as a symptom.

[SjoGirl]

Hi all,

Thanks for your continued posts.

The way we're supposed to really find out what is going on is that I'm going to have sonograms done on my hands again later this month. I have to have them done at the medical center which is two hours from here (where the doctor is) because no one locally does the sort of sonograms that are needed (I checked), I want to say intra-muscular was the term that she used.

She said that RA never affects the finger joints closest to your fingertips so if those are affected it's probably OA. Even if there are erosions it could be erosive OA (which I never heard of until she mentioned it).

Here's one piece I found about trying to determine the difference between RA and OA https://www.rheumatoidarthritis.org/ra/ra-vs-oa/. I agree with the comment that all of this could be on a spectrum and we seem to slide around it depending on what is happening, e.g., are we in a flare or not.

The good news is that I can still function, though I have to grip carefully or I drop things.

Thanks again all, you are sparing my hubby from listening to too much of this!

SjoGirl