Much needed feedback

[Alliswellforever]

Hello dear PMR’rs...

I have been having PMR like symptoms for four years now. I moved 5 years ago and needed a new doctor here in Utah ( if someone from Utah is here I would love to talk!!! ) It was an exhausting process to find a Dr. Needed referral from primary care and since I didn’t have one being new to the area, it was a little nightmare. Well, fast forward to my actual visit four months later ( actually WITHOUT medication because my old doctor declined my new insurance the Rx for Humira, because they thought I have seronegative RA) the person who was assigned to me is a nurse. She is under a Rheumatologist. But the contact I make is with nurse. She sent me to a rabbit hole of tests, that obviously came back crazy since I don’t have medication, supposing I have RA. I have spent $3,000.00 US dollars in all those tests to be told that I don’t have a Rheumatoid disease. She did a referral to Hematologist but they said they are not concerned. My tests really does not show M proteins. She, in my third visit still doesn’t think I have RA, or PMR. I have inflammation markers high and IgG and IgA elevated , etc. I am expected to taper from 3 mg Prednisone to 2 for three days, then 1 for three days then STOP for four days and see her again. Not to mention her bedside manners are horrific. I tried and went to take 2 mg but the second day in 2 I fell like I was gonna pass out. I decided to continue on 3, for my own sake. I would love to have your opinions on this rather crazy scenario. Thank You Dears!!!

[jinasc]

Have you access to a Mayo Clinic?

[Alliswellforever in reply to jinasc]

Hi! No I don’t unfortunately, next closest to me would be Minnesota.

[fmkkm]

Hi there,I was raised in Utah, spent the first 24 years of my life there. What area do you live? It’s a large state so health care very much depends on where you are.

[Alliswellforever in reply to fmkkm]

Hi there! I live In SLC! I am going to University Utah Hospital. Supposed to be the best....

[fmkkm in reply to Alliswellforever]

It is an excellent hospital. My brother had a health crisis a few months ago and he landed in LDS hospital ICU. He received great care there. I live in North Carolina and go to Duke, also excellent but have run into some real clinkers here, it’s a real chore to navigate these hospitals successfully, you need to be your own advocate.

[Alliswellforever in reply to fmkkm]

Thank you dear for reassurance!

[Alliswellforever in reply to fmkkm]

Glad your brother is doing well now.

[PMRpro Ambassador]

How long have you been on pred and at what dose?

Is she trying to kill you? Stopping pred that fast, even when you are at 3mg, after a long time on pred is likely to cause an adrenal crisis and you would need at the very least hospital care - if you were lucky, less lucky would have you in ICU and unlucky, dead.

You need to educate her - and remind her your family could sue.

[Alliswellforever in reply to PMRpro]

Ha!!!! I’ve been on Pred for four years, I was currently on two but she asked me to reduce to 1 a month ago. I did that and at 12 days I felt like dying. So I had to go back to three. I have absolutely no intention to see her again. Tomorrow I am going to ask for a change of dr. This has been an absolute nightmare, and considering I also have Fibromyalgia it’s mega overwhelming for me right now. In top of everything, she said the Rheumatologist ( in that group) don’t treat Fibro! Won’t prescribe Naltrexone (that help me) and won’t prescribe Flexeril either!!!!! It’s NONSENSE! The fact that I can’t trust my “provider” is a scary thing. Thank You dear for your feedback!

[piglette]

Does the nurse realise what she is doing? Obviously not! She wants you to reduce 33%, then 50% then 100% all in nine days? Tell her she could be up for murder.

[Alliswellforever in reply to piglette]

The freaking nurse had the nerve to say that she “bet” I had Multiple Myeloma, that I don’t have ANY Rheumatologic Disease. (Said the ‘expert’ right! ) I spent 3 grand on x rays and Battery of blood test. I DONT have MM don’t have any M protein in blood or urine. Her ego is up there and she didn’t even said she was glad I don’t need Hematologist the last time I saw her. It’s insane, literally....

[Alliswellforever in reply to Alliswellforever]

Not to mention that I suffered borderline depression thinking I had Cancer...

[PMRpro Ambassador in reply to Alliswellforever]

You don't "bet" on cancer diagnoses, there are correct ways of making a MM diagnosis and it it isn't at the race course, How VERY unprofessional.

[Alliswellforever in reply to PMRpro]

You would be surprised with all the crap I had to deal with. Thank You dear for your support!

[piglette in reply to Alliswellforever]

I am not sure how I would have replied to that comment. It is probably unprintable.

[PMRpro Ambassador in reply to piglette]

Heard about a few of that sort of comments from so-called professionals the last few days. It really does beggar belief sometimes!

[Alliswellforever in reply to piglette]

Hahahahaha! You made my day! But oh! So true!!!!

[HeronNS]

Are you near Salt Lake City? Re Jinasc's suggestion to try a Mayo clinic apparently there is one in Salt Lake City. The "care" you've been offered so far is rather scary.

[Alliswellforever in reply to HeronNS]

I am in SLC but I checked and there’s no Mayo Clinic here. Closest is Minnesota.

[jinasc]

I did look and found this in North Salt Lake

yellowpages.com/north-salt-...

Not knowing any location in the USA, I did just wonder................

[HeronNS in reply to jinasc]

I spent some time trying to figure out if Lake City was the same as Salt Lake City! Just went back into the site and it is in Minnesota. This was not actually stated on the "about page" which Google presented me with, had to go to "home" to get the address. Oh well, live and learn.

[jinasc in reply to HeronNS]

The one Allisforever metnions (University of Utah Hospitals and Clinics) is listed in the Mayo list so hopefully it will turn out OK. Perhaps we will find out later.

[Alliswellforever in reply to jinasc]

Thank you dear for taking your time, I will check with the Hospital and figure out if they are associated with Mayo Clinic. ***hugs***