Newly Diagnosed Saying Hi

Hi all, I was just diagnosed with PsA this month at the age of 28 but I’ve been struggling to get a diagnosis for over 5 years. Everything first started with my feet…I started having trouble walking to the point where I couldn’t walk more than a block or two. It felt like muscle spasms so I did the rounds of going to an orthopedist, who referred me to a neuro. Had the complete work up with MRIs, EMG tests, etc and everything was ok. Went to a hematologist and they told me I was anemic, and had a high ESR and CRP. Had more MRIs and was told I have degenerative disc disease in my spine. I had gone to a rheumy a few years ago who blew me off and told me I probably had tendinitis.

Fast forward to the present: I’ve always had what I thought was eczema but over the last six months it has flared like never before. I went to a derm and was diagnosed with psoriasis. I’ve been having joint pain in my hands, wrists, ankles and knees. I was finally referred to a good rheumy who gave me the dx. My ESR was 84 and my CRP was 25. I’m supposed to be starting Humira, just waiting for the specialty pharmacy to clear it with my insurance.

I asked to decrease my hours at work because I was working 10 hr days and commuting over an hour each way. Thursday they called me into the office and informed me it was my last day. They also had the cajones to ask me for a resignation letter. So it’s been a really tough week, and I’m dealing with lots of fatigue and pain. Sorry for writing such a long post, I’d love to meet some people dealing with similar issues and hear about others’ experiences!

Check with the laws regarding disabilities and the workplace... I am currently on FMLA and did find out from H R Dept that under that if the doctor states that u need to decrease hours ...they at that time just either accept or not accept it. Please contact the govt for the right information do u work for a company that has 50 or more employees and have worked there for a year or more? I wish u well

All I did was googled FMLA and Americans with disabilities act.. Bye and huggs

Hi, Jillybean

I’m so sorry that your employer has added to your woes. I’m Canadian, so I don’t know anything about your employment lawa, but I agree with Karen: you need to find out what your rights are as an employee.

It’s hard enough trying to cope without this added misery.

I know what they did was wrong (which is why they want to cover themselves by trying to get a resignation letter from me), but it’s a very small agency so honestly I think it would be too uncomfortable there to get my job back. My plan is to look for something part time closer to home, because until I get on some meds that work I am barely functioning. The grocery store took all my energy yesterday and then some!

WOW Jillybean I am so sorry for how your employer treated you. I had a quiet chat with my manager after seeing my Rheumy and filled him in on what was happening. He was very understanding and just told me to take whatever time I needed and just keep him informed. Seriously could not have been any different from your experience. I too am very new (although quite a few years older than you). I have been doctor hopping for about 3 years looking for answers until one finally connected all the dots just a couple of months ago. I wish you luck and strongly encourage you to explore whatever anti-discrimination rights you have in your country.

Hi Jillybean, I'm glad you found the group :)

Wow, I'm sorry. That's is a lot to deal with on top of the PsA symptoms etc... It doesn't seem right. I agree you should check on your legal rights. You didn't give them the resignation letter did you ? That may have been their way to cover their butt so to speak.

I'm sorry you've had such trouble and run around with your diagnosis. If it helps me and some others here have had similar issues. I went undiagnosed for 5 or 6 years. I was extremely frustrated and went through a lot of pain that I think was the result of it all. Some docs need to get their act together. Hang in there.

Thanks Becstar, and I’m glad to hear that at least your employer was understanding! Isn’t doctor hopping fun? They thought I had MS at first due to the spasms and difficulty walking, but that wasn’t it. It seems that PsA is not the easiest to diagnose!



Becstar said:

WOW Jillybean I am so sorry for how your employer treated you. I had a quiet chat with my manager after seeing my Rheumy and filled him in on what was happening. He was very understanding and just told me to take whatever time I needed and just keep him informed. Seriously could not have been any different from your experience. I too am very new (although quite a few years older than you). I have been doctor hopping for about 3 years looking for answers until one finally connected all the dots just a couple of months ago. I wish you luck and strongly encourage you to explore whatever anti-discrimination rights you have in your country.

Thanks Dini, it is a lot to deal with on top of symptoms! I did not give them a resignation letter and honestly I don’t plan to…I don’t remember resigning. Are you in remission from your symptoms now? I am really hoping the Humira works and I can start getting my life back again…




Dini said:

Hi Jillybean and welcome to the group.

Wow, I’m sorry. That’s is a lot to deal with on top of the PsA symptoms etc… It doesn’t seem right. I agree you should check on your legal rights. You didn’t give them the resignation letter did you ? That may have been their way to cover their butt so to speak.

I’m sorry you’ve had such trouble and run around with your diagnosis. If it helps me and some others here have had similar issues. I went undiagnosed for 5 or 6 years. I was extremely frustrated and went through a lot of pain that I think was the result of it all. Some docs need to get their act together. Hang in there.

Jillybean

U should at least be able to file for unemployment

HI Jillybean,

what a terrible introduction to PSA--here are your symptoms now let's take your job! Life has a cruel sense of humor at times. I think you'll find help and support and friendship here which sounds like what you need right now! Cheers.