On the rollercoaster of diagnoses again.

[Stm252]

Hi Folks. I need some advise. I am very anxious and feeling bummed. About 1.5 years ago I fell ill (about 1 year after the delivery of my first born). The whole host of sxs (e.g., joint pain, muscle cramping and pain and locking, fatigue, significant weight loss, hair loss, diarrhea, conjunctivitis, vaginal ulcers, headaches). Over time, I have become sensitive to the sun, I now have spinal pain and I cant use my hip. Various rheumatologoists have said lupus, lupus-rheumatoid, autoinflammatory disease, Behcets, and "you have a rare disease." Today I switched rheumatologists and she debunked what I have been treated for, for the past 1.5 years which was autoinflammatory disease with Bechets features (flat out debunked it). And said I have "features of connective disease and inflammatory arthritis). I have never had positive blood work which makes this more complicated. She is starting all the blood work over again and basically said she isn't sure where to go with this. I am on some heavy duty meds as well, and recently titrated off prednisone after 1.5 years. I just don't know what to think now and where to go. Anyone have this experience. I feel like I am on a rollercoaster that never ends. Thanks for any advice.

[thestorm]

Hi Stm, Whats it all about. My heart truly feels for you, and sending you cyber hugs!!! If you can, I have been here posting for some time on many symptoms that have surfaced in my lupus and such nightmare too. Feel free to look me up here and read what I have experienced. Sooo many truly good, smart, caring well informed people in this wonderful hub are helping me sort threw the web of similar experiences. Everyone here is of tremendous help and support. I cannot say it enough. We all have very big mountains to climb. Pains that have no rime or reason, symptoms that just don't jive with modern medicine, and I think I can say, Dr encounters that just leave our heads spinning at times. I may not have the answers you seek, but I have learned through the tears, and from good people here, to be diligent, ask your Dr alot of questions, write them down, Do not leave there office if you feel unassured of your experience. Continue to pick there minds. Do some of your own research, in this hub there are many links to good information.!!! Take pictures of symptoms. Get other Dr's opinions, and be mindful of yourself. You know yourself best, If it doesn't feel right, keep pressing on, as many of us here do. We are here for you. I hope my rant helps you a little. sending peace blessings, thestorm

[Stm252 in reply to thestorm]

Thanks so much! The reason I changed from my previous rheum was I actually couldn't ask questions so moving to this new rheum was my hope and dream to be able to. So today I was ready with my list! But they all became moot when she basically scrated the dx and started from scratch. But I agree it's a good approach to keep the dialogue open. That's really one of the primary reasons for my change in physician. I just hope she can come to a new conclusion and get me new/different help. I feel so anxious now that she may throw her hands up.

[sbkris1]

Congrats on finding this group! So sorry you’re feeling anxious and going through all of that. I’ve had similar symptoms that kicked in after my last born...16 yrs ago. Been searching for answers ever since. Glad that you found this forum it’s very helpful and will hopefully help you find some answers. What labs have you had done so far? My diagnosis ended up being hashimotos, MCTD and CLL . Took many years to get answers. Hang in there!🎢

[Stm252 in reply to sbkris1]

Hi there. Basically all my labs have been normal which has stumped everyone except for a very slightly elevated ana and chrommagranin a (highly elevated).

[Oshgosh]

Hi, I totally agree with you about the never ending roller coaster.

I have a new diagnosis of lupus,also have diagnosis if CTD NSIP.

WAS IN hospital last November when everything came to a head and I couldn’t breathe.. I as in the local hospital,they I had waited for appointments for months,but they really messed me about( appointments dept)

A month before my admission,I saw a consultant,she ordered loads of bloods,scans,tests.

On admission they said that her work up had been very thorough.

SO onwards 8 months.

I have the diagnoses above,can’t write the complete diagnosis in so early!

Counting my blessings,sort of.

I have a good rheumatologist,she tells me loads and asks my questions.

See her along with the lung consultant.this is good because it means I’m getting a balanced picture.

Write questions down,tick when answered. Put the answer on the opposite page.works for me, I think.

Anyway to the point, I asked her why my diagnosis was a bit obscure.

She said that in auto immune disease,things are not always clear cut,so they aim to treat the symptoms,rather than just put a label on them.! Did make sense to me.

Auto immune disease is really hard to cope with,it’s so sneaky and throws up loads of random symptoms.

I do hope you get some help with looking after your child.we toddler proofed our house and garden when my 3 were younger,made it as safe as poss.

I hope that all your blood work and tests have been started .

I find that just when I think it’s all running smoothly,they. Need more bloods tests.

I’m slowly coming to terms with it.take care