Wednesday, April 3, 2013
I went to a new Rheumatologist...Liked the first one but I had issues with the nurse. Its the only nurse so I cant go around her. The Dr. is a bit slow in response to me complaining about my low back and SI joints. Which is a good thing and to not jump too fast but she did not want to take MRI of SI Joints. Hubby wanted me to get a 2nd opinion, I wanted to wait to go to NIH...Went to new Rheumatologist last month...Once again very nice. She was surprised that I was on MTX because she said it didn't work for adults and that they usually give it to older people who cant handle biologics. She was surprised that it worked on my hands...maybe even doubtful. I get a bit confused with what doctors know and don't know. Last time I saw Bruce's peeds Rheumy my hands hurt so bad and he told me that MTX would help extremities and when I increased my dosage my hands would feel better...And they did. The new Rheumy asked me why I was on it??? Well, I thought it was protocol...you know NSAIDS first, then prednisone which I refused then MTX. She seemed perplexed..I don't know why I cant go to a Dr and get the same sound information. This becomes extremely frustrating. She told me that I was 1 degree away from Fibromyalgia or 1 degree away from Ankylosing Spondylitis. Thats a pretty big jump in my book. What I did know is that a lot of people that are diagnosed with Fibromyalgia (due to hot spots) also get diagnosed later with Spondylitis. The "hot spots" can be thought of as Fibro but really its Spondylitis. You can have both and it can get very confusing..she even said that she was not sure because the "hot spots" can overlap and thats why we did an MRI of my SI Joints on March 18th.
I got my MRI results last week. The dr was out of the country...The nurse called because I have quite a bit of inflammation in my SI Joints with narrowing. They wanted to get authorization for me to start HUMIRA. UM, your gonna tell me this over the phone? I said hold on...before I start that let me continue on the Gluten Free Diet (total)/whole foods(kinda) diet that I have been on for 16 days. I let them know that I wanted to see if there were any benefits to this diet. I was going to get a full body MRI at NIH at the end of April and would like to see if there is any change with the inflammation. No problem and I would go back and see her next month in May. I don't think I'm going back. The Dr told me that she only sees little old men with this illness. WOW! So I shall make an appointment with Mayo Clinic and see a dr there when I return from NIH. I was upset with the outcome...still hoping its something else. I knew but didnt want it confirmed. You cant help but feel bad that you actually gave this to your kid and your other child could get it too! Yes Yes I know, its not your fault and don't go there but how can you not feel guilty...As a mom you heart breaks to know that your child deals with this plus the UC.
About my diet. Its been 23 days since I started a Gluten Free Diet...100% no cheating. I try to incorporate whole foods in to it. I did not want to exchange my processed foods with gluten free processed foods...example: instead of Gluten Free Pancakes for breakfast I have eggbeaters with fruit. I do a few times a week eat Udis Pizza and Udis brown rice wraps and Udis Cinnamon/Raison Bread. I feel better and started to lose weight. I felt my recovery time upon standing was much faster and didn't hurt for so long. Sadly, its not working as I had hoped. It had reduced my pain in my body from a 9 to an 8. I promised myself that I would see how I do with this diet for 2 months. I started hurting a few days ago and so did Bruce Jr.. My pain/aches are back. This diet does nothing for my the pain in my Achilles or heel pain. I got some Crocs and they are wonderful. they are very smooshy. I wear them all the time. My kids make fun of me...there Leopard Print...there called Kadies or Katys by Crocs.
I sent a msg. to April, research nurse at NIH. I informed them of what I was doing. Both Dr. C and Dr. S responded.
Dr. C says when one changes one diet to a gluten-free/whole foods diet other things may change as well. MTX usually does little for patients with Spa/AS. So this is somewhat puzzling, but mom has erosive hand disease and that could be helping. This also could be another example of patients not reading(and looking) like the text books say they should.
Dr S says if Mrs Davis only has Spondyloarthritis without Celiac Disease, then the Gluten free Diet will not help but if she wants to continue giving a gluten free diet a trial then it would not be unreasonable for her to wait until the April full body MRI to start Humira.
If I don't do this for myself and start HUMIRA now I will never know. My son has tried Gluten Free too, but its hard for a kid. Its even harder to go the whole foods route. I may just do that for a month. Were talking bare minimum...but if it works then one day when Bruce gets older and his taste changes he can do it too. Ill test and see if it helps. Maybe things will change in the next couple of weeks. Its a great diet to lose weight.
Bruce and I both started hurting last Saturday. Bruce's hands ache and are stiff. When he does his stretches his back is hard to twist. For me its my low back and both SI Joints, shoulders hurt at the tip(edge). Arms sometimes feel tired as well as legs ache closer to my hips/pelvis. My hands have a slight ache, not enough to really tell. I do think the MTX is helping this.
We got a 7 month old puppy named Pippa. She is a Shih Tzu. Pippa is very sweet and loves to sit by you and follow you around like your shadow. She is cute, funny, lovable...with one exception...she hates to be alone. At night she is very good but if shes home in her pen by herself she gives low throaty howls. Were trying to fix this and am happy to say Pippa is succeeding. She is a lot better and is really comfortable with us. Its a big adjustment but it helps Bruce and really the whole family to concentrate on something else. Pippa is a great addition to our family!