Join the Conversation on
63 people
0 stories
10 posts
Explore Our Newsletters
What's New in

Searching for good doctors

Does anyone know of a rheumatologist that is good at treating rheumatological and autoimmune conditions specifically in women?

#Lupus #AutoimmuneDisease #Rheumatology


First Rheumatology Appointment

So my first rheumatology appointment is tomorrow. I suspect EDS or there's a few other possibilities in my brain, including just plain arthritis - but seemingly ankles constantly rolling and pinkies going in and out of line is atypical. And I have Pots.

Any advice? What do I need to expect? I have papers with documentation of symptoms and such of pain and types already. But I need to know what else to know.

#lookingfordiagnosis #EhlersDanlosSyndrome #Rheumatology #Fibromyalgia #POTS

6 reactions 6 comments
See full photo

Polymyalgia at 42 years of age

#Arthritis #LowMuscleTone
#Depression #axiety
#Rare disease #Rare disease #Rheumatology #ChronicPain #Disability #Colectomy

My thought: I am 42 year old female from Middle Europe. I have had recurrent inflammatory reaction in my whole body, they usually start after a common cold
My inflammatory levels sometimes went up to 25000 Leucizystes and C-reaction Protein(CRP) 140.

I got into Burnout depression in February 2019. I was too often soooo sick , and the CEO was terrible, that I had to take a day 3 days, once 3 weeks off.

Then I fell........... Into a black hole ⚫️⚫️⚫️
I asked for disability benefits.
Didnt get anything so far.

Now 3 Years later I work part-time again (3 days per week, 11-12 hour per day)
But I have money problems. Cant pay my tax bills. Living costs are just enormously high, so I sometimes dont know how to get food at the end of the month.
And I still dont get monetary benefits from anywhere.

I almost died a month ago, due to inflammatory reaction, recurrent throwing up and salt deficiency.
After the near-death I needed a wheelchair for the first time in my life.

About Wheelchair use in our public State hospitals : it is not like in the US netflix shows, when patients are taken anywhere by wheelchair.
It is more like, "oh, hello nurse, I want to get some fresh air but I am too able to walk, so mayyyybe might I borrow a wheelchair?"
Nurses were really good. Professional and so friendly. So they gave me a wheelchair.
2 days later the doctor took it away from me.

When I entered hospital, I way already soporous and always fell "asleep " - due to severly low sodium.
I survived.
I am so glad to have survived

But I have the next flare. Spent the morning in a fancy private hospital in the City. They were so nice with me, and still totally professionals, so I feel good to get treatment in this hospital for my recurrent inflammatory reaction.

If my body gets better within 10 days, when my 2 week vacation starts, I want to go wild camping in the woods. It is free of charge, generally accepted as libg as you dont behave like a wild boar. I can walk quite well on flat streets and paths , and I just live walking in the nature a lot. And sleeping outside, away from daily life. I want to do that .... hope my body will be better by then.

So now I am waiting for my blood results. I guess they do some pretty upspaced lab tests. And I see my rheumatologist next week. There is hope that I can get on "Biologicals "/ monoclonal antibodies.

So actually my question to you Mighties.
Does any of you have inflammatory body reactions with muscle pain, fever, Night sweats, fatigue / malaise, loss of apetite/ loss of weight?


Visit website for recently discovered PAN Vasculitis.

This type of Vasculitis is thought to affect 1/3 of those affected by PAN Vasculitis. The genetic links to what is termed DADA2 were discovered in 2014. Very interesting story about the discovery and the hundreds of patients (most young children), families, physicians, and researchers internationally affected. There is much interest that other forms of Vasculitis may be genetic as well. New cases of DADA2 are discovered regularly.

This new field may be of interest to many current Vasculitis patients and medical professionals. Read the story of how a Nashville doctor discovered that two of his daughters are affected and his subsequent work in medicine and advocacy around the world. Read about the interesting patients, families and researchers involved and how they advocate for the benefit of all. This is inspirational for all of us suffering with rare diseases.

New research appears often - symptoms range widely as do the age groups and types of genetic abnormalities affected. There are both early onset and late onset disease.

The website for dada2.org is http://www.dada2.org. There is a group for patients and families on Facebook. #DADA2 , #RareDiseases , #Vasculitis , #GeneticDisorder , #GeneticCounselors , #GeneticDisorder , #GeneticTesting , #Rheumatology , #PolyarteritisNodosa , #PediatricStroke , #PediatricHypertension , #PediatricLiverDisease , #ADAdeficiency , # adenosine deaminase2 deficiency

See full photo

what to expect at your first #Rheumatology appointment?

I finally got in to see a #Rheumatologist and im terrified they won't believe me either... this was what my doc sent to the rheumatology clinic...

basically... what happens at your first rheumatology appointment? #whattoexpect #Anxiety #Arthritis #myalgias


Has anyone gone through the complaints process against NHS Scotland? #NHS #scotland #complaints #Rheumatology

3 months after sending in a complaint about my rheumatology appointment and how I feel I was treated, I receive a letter today telling me it will not be upheld.
They have gone through my points and the doctor in question 'does not recall' the things I was complaining about so therefore I am lying, right?!
I don't know if I should go through the Ombudsman or just get a 2nd opinion and cross my fingers for a better experience next time?
Anybody else have a similar experience? Is there an official body out there who could help me? Citizen's advice doesn't seem to be much help.


what is normal? #EhlersDanlosSyndrome

I’m in the progress of being diagnosed officially with EDS and I’m having a tough time figuring out what is normal and what isn’t. I dislocated my wrist stretching my arms behind my back and my chiro told me not to stretch beyond a normal range, but I don’t know what that is! All of these symptoms I’ve had all of my life I’m just now starting to realize they’re not “normal”. How do I know what is and isn’t normal with my body? #EhlersDanlosSyndrome #ChronicPain #Rheumatology #Jointpain #hypermobile


How do you guys stay positive on the long wrong to getting a diagnosis?

I’m 24 and over the past 2 years my pain has gotten progressively worse, so my dr keeps ordering tests. Unfortunately it seems that most of my tests or unremarkable. Has this ever happened to you? If so, how did you stay positive? I’m struggling with staying hopeful because, while I know it sounds dramatic, but at this point it seems like I’m never going to get a diagnosis. #ChronicIllness #Diagnosis #help #ChronicPain #Rheumatology #Positivity


More Unremarkable Tests, Still the Same Amount of Pain

Today I finally had my nuclear bone scan. While getting that test done I was able to see the results myself. Obviously I am no radiologist, but my joints and spine were much brighter than the rest, so I was wondering if that’s significant at all?

My doctor had originally told me it was, however, the radiologist wrote “unremarkable” - a word I’m getting very sick of reading. I’m definitely struggling to stay hopeful. I obviously don’t want bad results, but on the other hand I want them to find something during one of my tests, that way I receive an actual diagnosis and can figure out a proper treatment plan. I know that sounds dramatic. I’m just getting very frustrated with the constant doctor’s appointments and continuous lab work/tests just to find out they aren’t finding anything.

Has anyone else gone through this?

#nuclearimaging #Pain #ChronicIllness #ChronicPain #ChronicSpinePain #Jointpain #Rheumatology #Radiology #frustrated


What should I expect? #Fibromyalgia #Rheumatology

At my doctors appointment today we discussed that we believe I have fibromyalgia, but she wants me to get a second more “concrete” diagnosis from a rheumatologist. Any idea what I would expect from this? I kind of thought we were basically done already. She had prescribed me medication and given me lifestyle changes to make, but now she wants a second opinion? I’m confused.