Getting Nervous about Seeing New Dr

General
1

Have 20 days until I see the new rheumatologist. I am ready to try a different direction with my treatment, but every time I have seen a new doctor I have gotten a different diagnosis. I have come to terms with having Lupus, and fear of being told something new scares me. But I am tired of hurting and am hoping for something besides anti depressants and anti anxiety meds. Plaquenil and prednisone aren't options for me. Have my list of questions ready.

One of the biggest is whether or not he thinks knee surgery would be appropriate. The last doctor had a fit that I saw an orthopedic surgeon about it. She said if I had surgery I would end up in worse shape. The cartilage is about shot and it sounds like bubble wrap popping when I bend it. I have had 2 serious falls where the knee got banged up more.

After the experience I had with the last Dr, I guess my nerves are coming out. I have heard some very positive things about the new Dr. but I think members here can relate to how I am feeling. Hope for some relief and fear of starting over with a new doctor.

2

It is always hard to see a new doctor and have to recount every thing it is also normal to be worried. The good thing is you have heard positive things about the doctor. I have djd in my hip my rheumy was afraid the surgery would cause a major flare but did not object to my seeing ortho which sent me to a chriropractor to start which has been wonderful. Everyone reacts different to surgery and meds listen to both weigh your options and then decide. Let us no how it goes.

3

Confused- the rheumatologist isn't the one who decides if surgery is worthwhile- the ortho does What did your ortho recommend? Surgery sure could help with some of the pain if appropriate but sometimes a knee replacement is the only option. Any surgery can initiate a flare- but that is what the rheumy does- monitors and controls a flare if it occurs. Always hard to start with new doctors as you have to go through establishing a relationship which can take time so good luck with your first visit

4

That is part of the reason I chose to find a new rheumatologist. She basically didn't want me to see anyone else. She was mad I went to the ortho instead of going to her first (she is 150 miles away, the ortho was here where II live), had a fit that I went to Urgent Care when I couldn't get ahold of her about my wrist and chewed me out using the f-bomb in almost every sentence, and when I started having vertigo I got blown off. I am not proud of the fact that I allowed her to intimidate me.

poobie said:

Confused- the rheumatologist isn't the one who decides if surgery is worthwhile- the ortho does What did your ortho recommend? Surgery sure could help with some of the pain if appropriate but sometimes a knee replacement is the only option. Any surgery can initiate a flare- but that is what the rheumy does- monitors and controls a flare if it occurs. Always hard to start with new doctors as you have to go through establishing a relationship which can take time so good luck with your first visit.

5

I remember now but still what did the ortho say? Because of that incident you should change docs but not to have a rheumy decide if ortho surgery is needed. Lupus can have repeated flares of joint pain and inflammation which should be treated by the rheumy. Whenever I had an acute episode of pain I had to undergo workup to see whether it was a flare or not before the ortho - and I have had 2 joint replacements so have experience with both. Can get confusing cause all you know is that it hurts. But if you have seen the ortho already for your knee- what is his recommendation? My knee surgeries were a godsend when I finally had them

6

The ortho wanted to do surgery. And after 2 serious falls onto that knee, I would bet it needs it more than ever. I guess I thought the rheum would take care of everything. I am learning that sometimes there needs to be a team effort. Learning so much from this group.

poobie said:

I remember now but still what did the ortho say? Because of that incident you should change docs but not to have a rheumy decide if ortho surgery is needed. Lupus can have repeated flares of joint pain and inflammation which should be treated by the rheumy. Whenever I had an acute episode of pain I had to undergo workup to see whether it was a flare or not before the ortho - and I have had 2 joint replacements so have experience with both. Can get confusing cause all you know is that it hurts. But if you have seen the ortho already for your knee- what is his recommendation? My knee surgeries were a godsend when I finally had them

7

I am having my second knee replacement next month. The other knee was replaced 5 years ago and it has been perfect since then. I would be firing your rheumy.

8

Dear keepgoing ... You are not alone. I swear Rheumys are the strangest group of doctors and they all think they are right. I am currently seeing two of them who have completely different outlooks on what I have and what I should be doing. My GP told me I need to choose one and go with it, but I am still not sure ... I wish I could find someone to recommend a great doc in the Orlando, FL area (I live in Mount Dora, but that is the closest large city to me). Don't be afraid. Take your list. And pray that God will give this new doc the insight to see past everything, actually read your list, and look outside the picture so that you can be relieved of all of this pain and anxiety. Let us know how it goes! And, like the others said, get rid of your current Rheumy and don't suffer with the knee pain. They are likely two separate issues, but even if related, why not get relief? It certainly couldn't hurt. Hugs, Dee

9

Thank you for your responses. It is nice to be able to talk to people who get it. My friends and family are happy I am seeing a new doc, but they don't understand the underlying fear.

10

I just saw a new doctor yesterday- pain management- and I left feeling worse than when I got there because, of course he had to touch me everywhere it hurt. Ugh!

I keep a list of my medications, my prior surgeries and hospitalizations, my allergies and medications I can’t tolerate, etc. all on my computer. I update it as I go and just print it put when I go to a new doc. It makes it much easier for not only the initial paperwork but also for updates along the way. I have a lot of difficulty writing so it helps me that I have it all typed out.

It is sometimes difficult to assert yourself with doctors but it is important that you do or that someone does for you. When I get really frustrated with a doc, I usually have my mother in law help me out because she doesn’t take no for an answer and will keep pushing until she gets an answer. When I don’t feel well, I give up more easily which leads to more frustration and more stress and more pain.

I wish you luck with your new doc. And I hope that you get some relief for your knee pain. Stay positive- I know this new doc will help you!

11

I just went to a new rheumy 2 days ago and I am still in such a whirlwind of emotions about it. I decided to go to him because I wasn't feeling confident about my current rheumy. My current rheumy has not checked my urine since my very first visit 1 1/2 years ago. She has rarely touched me or looked at any of the symptoms I describe. She just says I need more Myer's infusions which are 3 hours long infusions of vitamins and minerals. I have never felt better after these. I usually feel worse.

My worry is that I am on plaquenil, methotrexate, muscle relaxers, supplements, antidepressants, anti anxiety meds... And, I was having a good day! argh

How can he make an informed diagnosis when I am on so many meds that could mask the real situation?

I have to admit that I felt like a hypochondriac telling him every little symptom I could think of. It's not that I want him to tell me I have lupus, I just don't want him to tell me there is nothing wrong with me that exercise and a full-tme job won't cure.

But, I was impressed with this new rheumy's attention to detail. He did more physical looking and touching and manipulating of joints than I have ever had. He already has me getting braces for my wrists to wear when I sleep. And, he has me going to physical therapy for the current sore joints and I have to get a ton of X-rays.

I hope your appt goes well. Just keep writing down everything you think of past or present!

smiles!

adrienne

12

Wow, Adrienne, I wish I had a rheumy like that. There are two rheumys in the town I live in and I am on the second. She is okay but not that great but a thousand times better than the other one. My other option is to travel a minimum of 2 hours (one way ) to see a rheumy. Sounds like you are making progress and
That this doc is looking to rule out everything he can and get you on the right track. Yeah!!! Have a great day.

13

My knees were so bad that my ortho did complete knee replacements. I waited 2 years in between each surgery, but it is the best thing I ever did! It gave me so much of my life back---- no regrets. Good luck with the new doctor and put your fears to rest.

14

Make a list about what you expect from this doctor. Like i am looking in my rheum to be team player with me. They give me options on treatment and from their knowledge i then decide. I am always upfront about this even when i make first appt.

I have learned though to ask questions like how long they give for each patient...policies, will they work with all my doctors involved with same health problems.

If you they want to be GOD then i just say this is not going to work and leave or if they want to diagnose me again. I have had MCTD for over 30 years now and do not need to be diagnosed again lol!

As to your knee...a lot depends on your age. I have wrecked toe and ankle joints and yes i have had surgery done on them to replace cartilage. BUT as to joint replacements, both doctors and research backs what they say that i have to wait until my late 50's or 60's since they only last 5 years for someone like me that walks daily. I run out of bone to connect replacement too if i had started even in my thirties. It started in my early twenties.

NBC has basics about knee replacement surgery and what it involves etc...and of course a ortho is going to say surgery, they are surgeons after all!! lol! I never go to one and not expect them to say no! That is how they solve othro problems where rheum will take in your full life and think about at 60 what options you will have.

I know people who had to get hip replacement surgeries due to genetic problem( born with deformed hip joints) at 40 she needed new ones but did not have bone to attach them too. She had to keep going on what she had until the glue literally ate bone she did have away...than they had no idea what to do...not one specialist.

you do not want to end up like that....so do the research, ask the rheum why they feel that way. Let them explain, they might have logical excellent reason why you should wait. I really look into how long knee replacements last too. My toe joints only lasted 5 years at longest 25 yrs ago and still is like that....same with ankles...or bit longer but not even 10 years!

I get how painful it is...i hope you are walking still despite the pain. There are other options you can do for the pain besides narcotic pain medication like i eventually turned too...i wish i had used other options now...that my body is physically addicted and pain doctor left. i am in pickle!!

So i hope i gave you some things to think about and will help. I write down what you expect and want from your doctor most of all ....so you have clear idea and can explain it so you are all on same page and know immediately if it is working relationship.

I have had great rheum and bad ones....just like all doctors. So my experience has been they are same as most other doctors good and bad. i wish you the best and hope your find solution that works for you knee pain.