Status as promised - not PMR

[krillemy]

After a new neurological examination including EMG (ei. not ALS) I am back with the reumatologists. Now referred to the national special hospital department for a.o. autoimmune inflammatory diseases. I keep myself on 10 mg, and fell accordingly tired and stiff, pain in hips,elbows, shoulders, knees, feet, wrists, and thighs ect. but also a lot involuntary muscle twisting in the waisted muscles (not from PMR I guess). I really hope to be back with a diagnoses - any guesses are welcome

[DorsetLady PMRGCAuk volunteer]

No suggestions I’m afraid, just wanted to say hope you get a definite diagnosis soon.

It’s the not knowing that makes us worry - once you know what you’ve got you can deal with it.

[Whitner in reply to DorsetLady]

DorsetLady do you mean muscle twitching, like the feeling of a lot of little light touches in your legs? I have that sometimes and I think it’s a result of poor circulation from PMR.

[SheffieldJane]

Good luck with this krillemy! Your doctors certainly want to get this right. 🌷

[PMRpro Ambassador]

Which hospital?

[krillemy in reply to PMRpro]

Rigshospitalet - do you know something about them?

[PMRpro Ambassador in reply to krillemy]

Just wondered if anyone I know of was there ...

[miss-philosopher in reply to PMRpro]

I was there, still am. Some of the doctors are almost ok, some are complete idiots. Sorry ! Some of the idiots are trainees and not a real reumatologist. ... Like ... my pmr/gca should be long gone after 5 yrs. Yes I wish, but sadly it´s not.

[PMRpro Ambassador in reply to miss-philosopher]

Sounds a common story internationally!!!

[krillemy in reply to miss-philosopher]

so you live here in Denmark?

[miss-philosopher in reply to krillemy]

Yes !

[PMRpro Ambassador in reply to miss-philosopher]

So you can't be that far apart - unless you happen to live at extreme opposite ends!

[miss-philosopher in reply to PMRpro]

Yes, I think we both live in or near Copenhagen because Rigshospitalet is in the center of Copenhagen. It is considered the top nudge specialized teaching hospital. All difficult cases are send there, also casulties and other ...they have a helicopterlanding on top of one of the Buildings. Just hope thy can live up to the reputation.

[krillemy in reply to miss-philosopher]

I live 5 minutes from the hospital. Do you speak danish? I am danish

[miss-philosopher in reply to krillemy]

Yes I´m Danih and speak Danish. I live in Lyngby. send me a pm, and we can talk on the phone if you wish.

[krillemy in reply to miss-philosopher]

Sent you a pm

[Blearyeyed]

Good that it's not PMR but its frustrating that you still need to find the right diagnosis .

Be prepared that you may be some time and have a number of appointments and tests done to find out what is going on.

If it isn't one of the illnesses at the top of the check list like Arthritis , Lupus , Lyme's , Epstein Barr , then the Connective Tissue and Nerve related conditions until they reach more uncommon or multi system conditions. The method of finding out what is wrong does get frustrating .

As a Patient you wish they would just do all the blood tests and scans needed at once , as Doctors they will tell you blood tests and scans are expensive so they prefer to test in chunks hoping you may end up with something from the top of the list ( or something with the cheapest tests first ).

So , be prepared to be calm , be run about a bit over a number of months and even when they find the diagnosis you will have trial and error with medications until you find the right dose or combo of drugs for you.

One positive for you at present is that they have you on Steroids , although Tapering , and as it turns out Prednisone is part of the treatment for most of the more common Chronic Autoinflammatory or Autoimmune conditions , so in essence your steroids have been treating you , even if you don't know what it's treating yet.

If you find you taper to a point that pain begins to rebound , you can remind the Doctors if the above fact and request to remain on your steroid dose until they have finished your diagnosis , they may not need to you off steroids , or at least until they know what DMARD you are allowed to take.

Keep both a written and photo Diary of your symptoms from now on as you never know if those little rashes , mouth sores , spots , stomach issues even swellings or bruises , headaches , dry eyes , twitches and alike could be that final key to the jigsaw that they need to get the answer quicker. Doctors like the photos , plus it proves that you are being accurate at appointments and makes working with them easier.

Let us know the outcome .

[krillemy]

Thank you so much. I will try to continue being prepared and patient. I do have photos, however they never want to see them, not even videos of muscle twitching. Anyway, I am finished with the neurologist now, and apart from the appointment with the inflammatory/Rheuma doctors I have an appointment with a dermatologist (hospital unit) who is an expert in as you say connective tissue disorders. This is through a professional connection, so hopefully she will be very helpful.

[Jackoh]

All the best !

[Whitner]

Hi Krillemy. This must be difficult and I hope you have an answer sooner than later. Please keep us informed.

[tazman3]

Are you 100% sure that you do not have RA? After years of feeling ill and a sudden worsening of crippling symptoms of PMR, I was put on pred and it took a week to start working. Had been to blood clinic multiple times. Then I had an urgent call from the Specialist in Rheumatology and had an immediate appointment. My markers for RA were as high as a kite. The inflammation is still running wild in my body, but I'm seeing Specialist again next week to assess the meds.

I'll probably get shouted at for this, but just thought it might help?

[PMRpro Ambassador in reply to tazman3]

Why would you get shouted at? At our age, late onset RA is one of the things that should be ruled out in making a PMR diagnosis, it is a diagnosis of exclusion. A few inflammatory arthritides may have a polymyalgic presentation with no joint issues inititally. You can have a raised RF and no evidence of inflammatory arthritis - or signs of RA with a normal level of RF. Nothing is clear cut - but should always be considered.

[krillemy in reply to PMRpro]

I was tested for RA markers in may 2019. So that´s the story. Very relevant to look into again, however I just go a mail from the hospital (who has never seen me) that they again are refusing the referral from the neurological department as there is no signs of inflammation!!! I am about to give up. 2 neurologist, 2 rheumatologists and my own PP has written 7 referrals to that department and they refuse to see me ...