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woolfklynn
@woolfklynn

Posts: 2
Joined: Aug 18, 2018

What is wrong with me

Posted by @woolfklynn, Fri, Aug 17 10:40pm

Where to start! Im a 56 yr old female. Back in 2016 I found out that my kidney was 100% blocked, had reconstructive surgery. Everything was suppose to be beautiful! 1 week after, my knee blew up and my leg was horrifically swollen. They said it was a ruptured baker cyst, see an orthopedic surgeon, I did. He had me go to physical therapy, my physical therapist said please go to a heart doctor, this cant be from a ruptured baker cyst. I went to the cardiologist, he ran tests said everything looked great. But I wasnt great. He said the only think he could see from tests run was my groin lymph node was very swollen, I needed to see a surgeon, I went to the surgeon, he said everything looked great. Then progressively different joints wold become affected, my right wrist became swollen, stiff and almost unbearable to move, the bottom (balls) of my feet, my left knee, my right shoulder, the joint pain was unreal. My GP did tons of blood word, my ANA came back positive 1:320 homogeneous pattern positive cytoplasmic pattern (whatever all that means) C-reactive protein was 51.9 my GP sent me to a rheumatologist, she did yet more blood work, said I didnt have Lupus but would call it polymyalgia rheumatica (whatever that is) Rheumatologist put me on prednisone.. I have since gained 60 lbs, but my inflammation levels have decreased tremendously, so Dr has started decreasing the prednisone. Have since gone to my OBGYN, apparently my hormone levels are non-existant, as she called it "flatlined" so now Im on a hormone replacement therapy. At what point do these drs work together? I have never in my life encountered anything like this! Any help would be so greatly appreciated!

REPLY

Hello @woolfklynn ,
Welcome to Connect. What's wrong with me – is I'm guessing, a question a lot of us are trying to figure out. You asking the question is step one of learning how to be a better advocate for yourself. The more we know about our health issues and the better we put the questions to our doctors, we will hopefully help them come up with a better treatment plan for us. When I was first diagnosed with polymyalgia rheumatica (PMR) back in 2007, my rheumatologist explained it to me in layman's terms that it's like having arthritis all over the body. I was also put on prednisone and it was magic how much better I felt. I also blossomed and gained about 80+ lbs. It took me three years to taper off of prednisone and the PMR went into remission. It came back in 2016 for a year and half. The second time I was aware of the weight gain effect of prednisone and made some conscious efforts to keep it from happening again.

There is a discussion that may be helpful for you to know more about hormone replacement therapy (HRT) that you may want to read through:

Groups > Women's Health > I'm 60 years of age, should I consider hormone replacement therapy?
https://connect.mayoclinic.org/discussion/im-60-years-of-age-should-i-consider-hormone-replacement-therapy-i-have/

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John

Hello @woolfklynn

I would like to add my welcome to Connect. I agree with John's (@johnbishop) post above that you definitely need to be at a place like Mayo or at the very least a large medical/research center where there are a lot of specialists who work as a team and can help you find answers.

You are definitely right in the questions you are asking and you definitely do deserve a team of trained specialists. Mayo is a great place for the team approach.

Will you post again and let me know how you are doing?

Teresa

@johnbishop @hopeful33250 Thank you so much for your reply. My dream and hope would be to be able to be seen by doctors/specialists at Mayo. I am visiting my son in AZ next week and was going to see about a visit! My rheum dr is weening me off the pred, but this past week I feel as though the PMR symptoms are creeping back. The tired legs, wrist aches, hips, feet, extreme fatigue is evident. Gets pretty exhausting. Thank you again.

@woolfklynn

@johnbishop @hopeful33250 Thank you so much for your reply. My dream and hope would be to be able to be seen by doctors/specialists at Mayo. I am visiting my son in AZ next week and was going to see about a visit! My rheum dr is weening me off the pred, but this past week I feel as though the PMR symptoms are creeping back. The tired legs, wrist aches, hips, feet, extreme fatigue is evident. Gets pretty exhausting. Thank you again.

Jump to this post

Hi @woolfklynn — That would be great if you can make an appointment at the Mayo Clinic Arizona Campus. It might not hurt to call them before you get there to see about getting an appointment. Here is a video patient guide that may be helpful:

Introduction – Mayo Clinic Patient Video Guide – Arizona – YouTube

Mayo Clinic in Arizona
800-446-2279 (toll-free)
8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday

Also, tapering off of the prednisone is standard treatment but we are all different as to how long it take to get off of prednisone. The goal is to taper off gradually until you don't feel the pain anymore when you stop taking it. I've had two occurrences of PMR. The first time took me 3 years to get off and the last six months was going back and forth between 1 mg and 1/2 mg daily dose of prednisone until I was finally OK when I stopped taking it. The second time I was able to taper off in about 1-1/2 years. There are some good discussions on PMR that you might want to read through and post any questions you might have:

Groups > Autoimmune Diseases > PMR Anyone?
https://connect.mayoclinic.org/discussion/pmr-anyone/

Groups > Autoimmune Diseases > Polymyalgia rheumatica
https://connect.mayoclinic.org/discussion/poly-myalgia-rheumatica/

Can you let us know if you were able to get an appointment and how things went?

Hope you find some answers.

John

@woolfklynn , your story is sure interesting, and I hope you will let us know if you get in to Mayo AZ. How discouraging a journey it has been for you, so far. Thank you for sharing with us, and hoping that today is a better day for you.
Ginger

My advice is to create a time-line in a note book of all your doctor's visits and doctors contact information. Like a diary. Have all your questions and concerns in writing to make the most of your visit. Then, get copies of every test taken, keep clipped together with a time-line, this will help doctor and avoid re-taking of some tests. You need to benchmark all medications taken, including vitamins. Do this 'before' your next doctor's appointment, including before you get to Mayo clinic. You are lucky, I cannot afford to go to a Mayo clinic location and must rely on primary doctors and a Rhumy that is inexperienced with my rare immune disease. Prednisone was ineffective for me. I found its a standard issue 'first try' drug. Once you go off of it, you need advice on correct diet to lose weight, too much weight can only aggravate joints, not help. It's a double edged sword! I found the best diet for me was the LAC diet, the Keto diet was too much protien and hard to digest for my rare immune disease, and the LowFOD diet helped with digestion, but still did not help with my over-all inflammation. I do believe some of these autoimmune diseases are environmentally triggered, drug induced, and not all clear cut or defined. You may find treatments include holistic things you can do to counter inflammation to minimize damage, once you get a diagnosis..you are doing the right thing to go to Mayo clinic! Good luck!

@thunder_dog88

My advice is to create a time-line in a note book of all your doctor's visits and doctors contact information. Like a diary. Have all your questions and concerns in writing to make the most of your visit. Then, get copies of every test taken, keep clipped together with a time-line, this will help doctor and avoid re-taking of some tests. You need to benchmark all medications taken, including vitamins. Do this 'before' your next doctor's appointment, including before you get to Mayo clinic. You are lucky, I cannot afford to go to a Mayo clinic location and must rely on primary doctors and a Rhumy that is inexperienced with my rare immune disease. Prednisone was ineffective for me. I found its a standard issue 'first try' drug. Once you go off of it, you need advice on correct diet to lose weight, too much weight can only aggravate joints, not help. It's a double edged sword! I found the best diet for me was the LAC diet, the Keto diet was too much protien and hard to digest for my rare immune disease, and the LowFOD diet helped with digestion, but still did not help with my over-all inflammation. I do believe some of these autoimmune diseases are environmentally triggered, drug induced, and not all clear cut or defined. You may find treatments include holistic things you can do to counter inflammation to minimize damage, once you get a diagnosis..you are doing the right thing to go to Mayo clinic! Good luck!

Jump to this post

@woolfklynn I will add my support to what @thunder_dog88 says about a time line. I have posted mine on DropBox (https://bit.Ly/1w7j4j8 under Amyloidosis) so anyone can see it. It has really helped be think things thru, and understand how my disorder begins with a single piece of protein, clones itself, then dies. Then it builds and builds, and eventually comes to the point you can really see it for yourself. But the timeline is the key. And keep those discharge papers for proof.

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