Before I say anything I have one thing I have to say..... I LOVE my Rheumy! I don't know where I would be without Dr. W. Well actually, I wouldnt know about the Osteoporosis, Would be in severe pain with medication dosages through the roof, would probably be very deprerssed and anxious about my health and still be fighting with multiple doctors to get even the slightest thing accomplished. The bad side? He is very old, and probably has hips worse than the majority of his patients (he took time off a few years ago to get both of them replaced). When he passes away (mom and I both believe that he will never retire, he will stop practicing medication the day he dies) I don't know what I will do, it's a thought that actually scares me! Okay, onto the appointment.
I made up my list as to what to ask about. It was pain meds (long and short acting), my left wrist, the ring splints and just pain levels in general and if we should be adding a third medication (muscle relaxant) into the mix for dislocations and neck pain. So we get in there and first thing he says is that he found another EDSer and almost missed it! He said he was kicking himself and actually thought of my case before even realizing the EDS, he was shocked and happy lol. However it doesnt sound like this patient is as proactive and trying in her own health care. I told him that he could give her my name if she would like to talk and he said he would but for me not to hold my breath as he doubted she would.
First health issue is my wrist. He looks at the xray, reads off a bunch of jumbled words and goes 'Do you know what this says?' and I said no so he goes 'They saw it was a 28 year old girl, a patient of Dr. W and figures that they should just be looking for arthritis. And apparently you don't have it, but it also shows that there are no fractures which is the important thing'. I ask then what does that mean and he brings me over to the little stool to play with my hands and wrists. Now normally I refuse to let dr's just play with them without a full reason but I completely trust Dr. W, he has learned my movements as to know when to back off (as I will let him play with them, it usually creates pain, but he has learned when it's too far). He then asks if I have had physio of the wrists and I internally groan as I hate physio and it usually makes me worse. He said that he would really like me to work with an informed physiotherapist that he really really likes as he is worried that when I break my wrist (notice I said when and not if? Yeah we did too) the stronger my wrist is, the faster it will heal. I told him that as long as OHIP would cover it that I would give it a go but that I didnt have money to pay for it out of pocket and wasn't sure if he would help as the head ptist at the local hospital told me that my joints were surprisngly strong and adequate. He then tested it and had me squeeze his hands, then I get 'Well, you are pretty strong, for a girl' lol. So we agreed that he would conatct his favourite PTist and discuss my case with him for my next appointment.
Next up was the pain issues. We were talking and all of a sudden he goes 'How are your knees?' I looked at mom and didnt know how to answer. I was like I am still dealing with the wrist, we havent figured anything out about the shoulder and neck issues and now you want to start on the knees?!?!? I said not good and they were what started all the problems and that I had three operations on the right knee. He asks when the last xrays were and I said years ago, he did an MRI a few spring's ago but I had no clue about xrays. He goes good. He then asks if I would be in a drug trial. It is for a new osteoarthritis medication and they are looking at the knees but he is hoping that it will actually help all my joints. I got worried and asked if it was an anti-inflam med and he gives this huge smile and goes "No!" Then turns around, goes to the phone again and makes a phone call. We hear "I have a good case for you, she definitly has OA in the knee but doesnt have recent xrays, will you still take her? Great". Then he tells us that we would hear from M in a few days. He says that the study is about something like a tissue regeneration and growth hormone combination (obviously he knew what the meds were, I just can't really remember about the first part). He also said that he didnt want me to start it until he could read over all the study information and go through with it with me.
After that we quickly get my meds switched. Instead of increasing dosages we rotate between two different medications. I had been on the long acting as well as my breakthrough meds for a long stretch of time so neither were really working. He just asked me which med I wanted, what dosage and how many to give me. So I ramble off what the usual dose for this medication is and he just writes it down. He goes to do the breakthrough meds and asks how many he gives me and I tell him 100 and he goes to write down 100 a month!! Not the normal of 100 per three months lol, quickly got that figured out. He told me that next time, as soon as I walk into the room to go "I need drugs" lol, not sure I will be doing that though. Lastly he had no objection about the splints and wrote up a perscription for them and reminded me that there is a more local company that does the same product and that I might want to look into them.
All in all a really good appointment. I have since heard from the study doctor but havent talked to him, playing phone tag at the moment but I am really inrested in this. A TV show I watched had a girl who got injured and was buying growth hormone off the street to speed up her healing. If this helps things heal faster than it will be great. I also have been having a lot of problems with my left hip. It is one of the top 3 pain issues this last week. I know that I have OA in it just by feel and my old OS told me that I probably had it in all the large joints (he confirmed knee when he was doing the surgeries). So if I get into the study through my bad knees but end up with my hips feeling better it will be great! Mom and I laughed so much though about him randomly coming out with 'how are your knees' as he is pretty scatterbrained and we had no clue where he was going with it. But it proves that he is still sharp as a tack and always thinking! I love this guy!
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