Ive decided to take a 8 hr road trip the Cleveland Clinic Arthritis & Musculoskeletal Center in Cleveland, OH - my appointment is in a few weeks. After almost two years of going nowhere fast with two local rheumatologists, my father has pushed me to go to Cleveland Clinic. I am having all medical records faxed to Cleveland Clinic from my GP and RA doctor. I have a brief timeline/history written out with medications tried and current meds and notes on how to explain my pain/locations. I also have pictures I've taken with my iPhone of skin issues, swelling, etc. Anyone have any other suggestions? Any blood work / tests I should ask for? The only thing I was thinking was maybe test for RA again, Fibro test (to rule it out), and MRI on trouble points since a lot of pain is in my surrounding joint tissue, soft tissue, ligaments/tendons. Let me know what you all think/suggest? I appreciate all of your help.
It is great to hear you are being so proactive! I'm a bit like Sybil, not sure exactly how it works in your part of the world, but I imagine you should take every bit of information you have, and make sure you make a list of questions for them too!
Guido, you’re taking charge! Good for you. I would say that you should write down your own relevant medical history, as far back as you can go. Skin, joints, muscles, fatigue, mood … write it all up.
Congratulations on being able to get into Cleveland so quickly. I hope that you get some answers and direction there.
That’s awesome Guido! Our thoughts are with you!
Best Wishes to you. I hope that you get some answers. I think the Cleveland Clinic has an awesome reputation and will do the right tests. If you dont mind--Let us know what they say.
Guido, did you go to your appointment yet? If yes, how did it go?
I’m seeing mine again today. I’m staying in a campground nearby so that I don’t have to pay for a motel. (In a camper of course. No tent sleeping for me anymore! Memory foam mattress only).
Hope all is well with you and the new Doc.
Cheryl / ALL : I’m so embarrassed…I just cancelled my appt yesterday. I just was so skeptical about long distance medical care & couldn’t see driving 8 hrs round trip everytime I need to see my rheumatologist…especially now since I’m not controlled. I was told they don’t refer you back to anyone back to your home town. I was able to speak to a doctor friend of my fathers who got me in to see the rheumatologist close to me that I’ve been wanting to see for almost a year but he was so booked up. I’m excited to see him and that visit is next week. If I’m not satisfied - I will indeed go to Cleveland. If you don’t mind me asking - what doctor are you going to see in Cleveland? Please let me know on your thoughts about the process / doc.
Yes, a long distance arrangement is certainly a challenge. My rheum is 5 hours away, so that means an overrnight and a long day the next day too. But for me, it is completely worth it, because the expertise and the quality of care there is amazing. Still, a good rheumatologist nearer home is preferable. Great that you got an “in” – I hope it works out really well for you!
Thanks Seenie! I sure hope so…praying to find that “one” great rheumatologist that can help me!
Heres hoping the local guy gets the job done. Honestly you stand a better chance. The big clinics can get a lot done in a short period and if one needs "evidence" they are the place to go. Sadly for many their first visit(s) are their only visit and are with residents and the big boys "chart review" Rheumatology while evidence based is really art. Its for docs who love a mystery and a challenge There are literally thousands of approaches to our disease and only a few will work. Diagnoses is the easy part. Clinics are great for that. I think your gut was right. You need a guy involved in your treatment - that cares.....
I'm going through a bit of it myself right now. I'm changing biologics. Not that the old one wasn't working but rather my doc (whos fairly new to me) informed me they weren't doing enough. he may be right, he may be wrong hes 70 and cares. Thats worth something......
It's too bad they won't collaborate with someone local. I have a friend here who got a correct diagnosis (RA) from Mayo. She gets continuing care locally, but goes back to Mayo yearly. Kind of the best of both worlds. Going 8 hours for routine care would be a deal-breaker for me.
If you're seeing the new one next week, congratulations! Hope it's a good fit, and that you get on your way with good treatment.
Sounds like a good plan Guido. If you were directing your above question to me, I’m in Michigan. I don’t go to Cleveland!
And yes, if you can get someone locally that would be the best plan. It is exhausting to travel, esp when in pain! I’m icing my elbow and resting after seeing my wonderful Rhuemy. Too bad she will probably retire some day! (Before I’m done needing her)
Oh Lord - I have to share that my local appt. was cancelled by the new doctor because it is their office policy that they do not allow patients to switch doctors in the practice. I do have a new appointment today with a rheumatologist recommended by my wife's grandmother and my mother-in-law in the Dayton, OH area which isn't too far away. I am praying this works out well. I did make another appointment with a new doctor who specializes in PSA at the Cleveland Clinic in late October just in case I am not satisfied locally. I am doing my best not to let this PSA circus get me down. I was in Chicago all last week and had a wonderful time with my family so it provided a great escape thankfully….headed there again this Labor Day weekend for a Jazz festival. I just have to get away!
Oh darn, Guido! Just when you think you’ve got your ducks in a row … oh well, chalk that one up to experience! Your back up arrangement for October is perfect: you can always cancel that one if you feel things aren’t under control. But I wouldn’t cancel until closer to the date.
Good luck at the new rheum’s!