Moms Arthritis, Doctors and Gluten Free Diet

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!

Bruces Arthritis Issues

I cant really say that Bruce is doing better. I cant tell. Since we came back from the National Institute of Health and saw Dr. Colbert, his upper back between the shoulder blades started to hurt along with his lower back and knees. The trapezoids into his neck were really tight. Anthony, Bruce's physical therapist just didnt understand why his back wouldn't let up? He kept asking... why? Nothing helps,stretching, massage, Flexeril, NSAID, Tramadol, Neurontin, Heat, Cold, spa,...nothing helps. The massage and heat helps for the time its happening but then it just comes back. I wish I could wave a magic wand and wave it all away. I wish it were that easy. Sadly its not. We try to stay optimistic. We really do. Most days hes good and just deals with all this crap. I am happy to say that Bruce did not have to use his wheelchair this past fall and winter. We only used his wheelchair when we went to Washington, D.C.. Bruce's legs get very tired and the wheelchair is a good thing to have. We take it on every trip just in case.His legs seem a bit better. So no wheelchair and he still had the use of his legs... He still gets tired and stiff but its different. Hes traded one thing for another. Hes walking more but now he cant twist. The one thing he loves the most is Golf. Yes hes my kid and I can say that hes really good...but he is really good. His golf coach Wally was a pro PGA golfer. We got lucky to have him as Bruce's coach. Hes not only good at giving direction but Wally was good mentally for Bruce. We noticed that Bruce was not wanting to go to the range and he stopped going to the putting green across the street from our house. He told us awhile back that he could not twist as far back as he used to be able to, so his swing would be off. He tried it this past week, thinking he could go out there and chip, so he didn't have to make such a big swing and follow thru. About a half hour later he came back in with his dad and was extremely upset. Its the one thing that he could do as a sport. Dad bought a tandem bike so when Bruce was tired he could just stop and let his dad do the work. Dad is also looking into buying a 2 man Kayak. Bruce loves this. It gets him out in the "wild" and that's one place where he can enjoy himself. Hes pretty good at swimming but its become a need for his body and not for enjoyment. He likes to swim because he feels so good in the water but its become a chore. We go swimming everyday, even in the cold. Our pool is heated. Were just trying to find an outlet for this young man. I just wished that golf wasn't taken away and I hope its not forever. Bruce has been walking everyday and using some light weights. Its been cooler with no humidity. Today he had a hard time...Summers almost here. So now he can walk 2 miles but he cant twist. So different from what was going on in the early days. Can I say that hes doing better....Um,I think so but he still cant run, has fatigue, cant twist and still has enthesitis. He still swells but not much. Is this better?

We haven't had any changes in his medication except for the Amitriptyline that was given to him to reduce the pain in his gut. So far that has not worked. Dr's also said it could help with fibromyalgia if he has it. But it hasnt done a thing. Oh and a probiotic for his gut too but nothing for his arthritis. We see Dr. Colbert at NIH on April 23rd and we will see whats going on. I will update when we get back.

Ulcerative Colitis issues

The last time I posted we were holding our breath hoping that Bruce would not flare with his Ulcerative Colitis. His UC likes to show up at the end of February and March. Around the 10th of February, Bruce got what he calls the hospital belly pain. My hubby and I had put a plan together...We would go back to All Children's because they know the drill. All of All Kids GI doctors know of Bruce...lots of talk went through that office due to the order of removing his entire colon last year then miraculously it all just disappeared. I'm sure the heavy doses of remicade and the prednisone helped out a lot. We had tried out a new Peeds GI Dr and we like him...but hubby and I had concerns that Bruce would not be admitted immediately and start IV prednisone. We were afraid that we would go to new hospital ER and be sent home with prednisone to take for a week to see if it would subside which we know it wouldn't...and he would end up in hospital anyway do to his track record over the last 2 years. So when the belly pain started a bit early the GI docs at All Kids did an immediate colonoscopy. I am very happy to say that his colon looked perfect. The dr was concerned that once again he was having anxiety and this was a product of fear that he would go into hospital. I guess they think we don't know our child well enough. I was also a little irked that Bruces GI Doc was very busy...looked at phone twice and looked at beeper several times. He said his stomach ache was due to IBS yet he has no symptoms of IBS. None. Just a pain that's about an 8 at that time and if pushed on in each quadrant of the colon a 10 plus give or take in each section. Also Bruce continues to be full of stool. He can't tell if he has to go or not. I find this concerning. why? Does it have to do with nerves? Is his colon stretched too much...and it was, I was told. Dr doesn't address why Bruce can't tell if he needs to go or not but continue with the Myralax and it will all work itself out!?!? So we left their perplexed. Why does my child have pain in his gut that is making him so uncomfortable that he can't sleep on his belly. The only anxiety he gets is when there is no reason to explain the stomach issue. Which would bother me too, if I was in his shoes. On the long ride home, again I was thinking...everything was done so quickly, is the dr missing something? Bruce was happy he didn't have to go in hospital, but asked why does my stomach still hurt. I could not answer this and told him we would be very diligent to giving him Myralax daily. I made an appt. at that moment to a peeds GI dr at Arnold Palmer who spoke at a Crohns and Colitis seminar. I wanted someone different. I felt I was stagnating on the help that I was receiving for Bruce. so All Kids Dr is a bit too fast and too busy but they know the drill, 2nd Dr we liked but he doesn't know the drill and told me that...this maybe as good as it gets for your son and to stop throwing medicine at this and to see a psychologist to help Bruce get through this? Its what he would do for his child. Ok...mom was a bit hot under the collar. The more I thought about what he said the more pissed I was getting. I had already sent Bruce to a psychologist who handles PTSD ( post traumatic stress disorders). This man is superb in dealing with this kind of problem and guess what? Bruce is fine...like most kids who don't have any baggage except for the illness...he bounces back very quickly. When it's there he worries when it's not he doesn't. And if Bruce needed help with anxiety then the PTSD Dr would be the one to tell me.

I was hesitant to see a new Dr...quite frankly I'm not sure that any dr truly knows. All children who have this illness are so different. And when they can't find an answer they throw it into a hodgepodge because they dont know or think that its anxiety? I never want a dr to tell me this is as good as it gets. You can tell me that when we have exhausted all possibilities. Sorry, I find Drs can be very frustrating and a bit condescending. Every mother I know who has a child with Arthritis and it's related illnesses know so much about each disease that I think it's warranted that a Dr pay attention to moms and dads who do their research.

When I went to Arnold Palmer...I was irritable about the new Dr appt. because I was afraid it would be the same as
the rest. Why should I think that this Dr would be any different...but I had to go through with it for Bruces sake. His belly still had pain and it did not subside after his colonscopy like the dr said it would. I was somewhat hopeful because I heard this man speak and he was very clear about what he believed in. I was so happy that I took Bruce.

First this Dr had all the time in the world, which I loved. He explained that Bruce can flare at the same time each year. This happens more than you think. But when all tests and colonoscopy show that he's in remission with his UC then a lot of times they will look towards IBS. IBS can exacerbate UC. But he didn't think that was what was going on. Because Bruces colon was so inflamed last year he felt that some of the nerves were damaged during his flare to the point that his gut sends mixed messages to his brain. This is why he has pain and can't feel the urge to use the loo. In order to calm the gut down even more he recommended that we give him double doses of Myralax and a laxative twice a week. Also we put him on VSL double strength which is a super duper probiotic. He also put Bruce on amytriptyline. They have found that this medication which is an antidepressant helps to calm the gut down as well as pain in the body. This is understandable, I take welbutrin to calm the bladder down. He didn't think Bruces pain was from anxiety, but that the pain is very real, yes Bruce may have IBS but he thinks it's very unlikely due to lack of symptoms. He also took xrays of his gut and explained that he would probably be on Myralax for quite sometime if not forever due to the damage and lack of urge to go. His colon is not as enlarged as I was told. He thought that Bruce looked a bit swollen in a few areas and said that if his arthritis is not under control, that his gut pain could be attributed to his arthritis.

So far his stomach pain has not subsided, but he is getting better sleep due to the amytriptyline. The increase in dosage of the Myralax is working well.The VSL probiotic is expensive but Im hoping it will help over time. The dr told us that if he flares and there is blood to send him directly to ER and have him paged. I am so thankful for this Dr. I feel that he explained everything to both my husband and me and even to Bruce. Bruce felt better that at least he knew where the pain was coming from. Bruce never complains and I can't believe that he walks around with pains in his gut and stiffnes/pain in his body. It will get him down every so often, especially if he has a difficult day due to his arthritis.

I was going to put all that has gone on in one post but, I think I'll separate each situation.

Holding Our Breath,

The kids started school today and I have time to write...It's been a fast couple of months. The winter break was a good one for all...knock on wood...none of us in the Davis household has been sick. We went to a gathering where we were told that someone had MRSA and I couldn't get out of there fast enough. I contacted Remicade which informed me that it would of been hard for Bruce to overcome such an infection with the amount of Remicade that he takes. I try not to become upset...because, well people just don't get it...this flu season has been so bad. I worry that Katie will bring home something from theater...it knocked a lot of the kids down but so far we have been free of any airborne illness. Understand that Bruce got the flu which probably triggered his arthritis back 3 and a half years ago. Poor kid was down for 17 days... when he went back to school he was there for 1/2 days that first week it just drained him.

So...it's January, a new year..and mom and dad are holding our breath. February is the onset of Bruce having a UC flare. We are very concerned. I wish it was easy to let go and hope for the best but knowing Bruces track record for the last two February's...ain't so great. 2011 sent Bruce to hospital and Feb 2012 sent him to the hospital for a hell of a lot longer and let's not forget the colostomy that he was preparing to undergo....it makes us anxious. There is no preparing for this. As was told...if you flared last year it's a good bet that you will flare this year at the exact same time. If by chance he doesn't flare in February then his chances are better for not flaring the following February in 2014. Doesn't mean he won't flare, just means his chances are better. It's crazy that the body knows exactly when this will happen. No warning signs. No slow onset of symptoms. Mom I have a stomach ache and the next day he's bleeding. We can not prevent this. Although a Calprotectin test will check for occult blood in his stool at time of sample. There is just no way of knowing...so we wait on pins and needles. They cannot tell us if it will be a shorter or longer flare. Really... the only way to really know of a UC flare is to do a colonoscopy Every Week for the month of February. The Calprotectin test is very good only for the time of testing...which would be the same for a colonoscopy unless it was done every week. We know that this flare cannot be stopped unless he gets IV therapy ASAP. Bruces last 2 flares were thought to be controlled at home with prednisone orally. We now know this isn't so because he becomes resistant and needs prednisone, 60mg IV daily. How long? We don't know. 1st time it was 5 days of 60 mg plus once home a very slow taper. Last Feb was 60 mg orally and a low residue diet to no eating before he went into hospital
because we thought we could fix it. Calm the gut take the prednisone and he would be ok. No, it's a bigger monster and it showed it's true colors last February. So this years plan... we don't wait...directly to hospital as soon as we see blood and hopefully we can get it under control. I have flashbacks of Dr.W telling me Bruce needs
a complete colectomy due to his refractory of the medicines, meaning nothing was working.
We have a new gastro dr at Nemours. I saw him at Cinncinatti Children's Hospital last
year. Dr W is fine at All Children's but 30 minutes away verses 2 1/2 hours away is so
much better for our family. If Bruce needs to go into the hospital it would be for gastro not arthritis. Dr N will continue to be our peeds Rheumy despite a terrific
doctor at Nemours. There is a comfort level with Dr N.. He was the first to diagnose
Bruce so leaving him would be hard for both Bruce and mom and dad.

Bruce has been in a flare since Nov.5th. With as much medication in him you would think that he would be doing well arthritically speaking as well as his UC under control for the upcoming month. Last year he should of never had a UC flare with the amount of Remicade going in him. I think it was 600mg every 6 weeks. We are now at 1000mg every 6 weeks and if he flares with UC...then what the HELL is Remicade doing...hubby and I are questioning this. Ok, so he doesn't flare except each Feb and we just deal or do we put a bunch of bad stuff in him for what? His Arthritis? That certainly isn't working up to par. But nobody wants to change anything at this time. Bruces new Gastro made me a little mad...he said maybe this is the best he will get...Throwing more medication at
both diseases might not be the answer. Well it's very easy to say that when you don't
have a child who is going through this. Bruce can not run but he does, he should not
play golf but he does. It takes him a week to recover. He takes regular naps up to 4
hours. He cannot lift his legs-off the ground due to weakness in hips/girdle.So is
remicade working? Not at 100%....maybe at 60% but were not doing a thing about it,
hoping it's a flare but really knowing he's reached his capacity on Remicade and no one
is comfortable with upping his dosage and knowing he has one more medication to try
and that will probably fail him in 4 months based on his track record. Doesn't build
antibodies...all meds just lose there effectiveness. So Bruce walks around with
stiffness in his back, weak legs, pelvis, hip/girdle area. But once again I do not have
a crystal ball and neither does any of Bruces Doctors. Love the doctors but hate the
diseases.
I am doing ok...Voltaren Gel is the best. It works quite well for pain. My dr increased my MTX and I think that helps. Bruce has been given the ok to use it too. Mobic seems to work for me. We got our humidistat working and what a blessing...Both Bruce and myself feel a big difference. The humidity in the house is at 58% to 60%. 80% when it wasn't working. I highly recommend it. Honeywell humidistat works with your air conditioner. Somehow you attach it to the wiring of your thermostat...I think it's less than 40 bucks. If you can get do it. Your electric bill might go up a bit but its worth it. I've noticed my jaw is tight and not the TMJ type of tightness. Like a hinge is
hard to open up. My hands feel better. When I go to NIH with Bruce in April they will
do xrays, full body MRI and lots of lab work...hoping they will look at our DNA, skin
testing etc...
I might be repeating myself but I didn't know how to combine both blogs since one is a few weeks ago....well not really...just too tired to try to combine them... At least I'm honest...I'm ready to crawl into bed... Night night

Gastros, Devices, Flares and Ziti

A few weeks ago we met Bruces new Gastroenterologist Dr. Franciosi who saw Bruce back in May at Cincinnati Children's Hospital. He moved here to work at Nemours in Orlando. We liked him very much. Very thorough, good sense of humor which you need and easy to talk to. We won't be doing a colonoscopy on Bruce despite his stomach pains that come and go. The Dr thinks that Bruce also has IBS along with IBD. We watch him closely to make sure there is no blood in his stools by using a Calprotectin test which is very sensitive to pick up on any microscopic blood. Ya, insurance doesn't like this test, so once a month we will invest in this culture to save Bruce from having a colonoscopy which insurance "will" pay for at 100%. Doesn't make sense but we have to follow Bruce closely because most likely he will flare again in February/March. Almost to the day. They don't know why it can do this, it just does. So we are hoping that we can catch a UC flare early and Bruce won't go into the hospital. If Bruce flares it will be due to his UC that will put him in the hospital. Nemours is much closer about 40 minutes away. All Childens is 2 1/2 hours away. Bruce will continue to see Dr N at All Children's for his arthritis despite a great doctor at Nemours. Dr. N was the first to diagnose Bruce and there is a certain comfort level that I'm not willing to give up. So we will hold our breath for what may or may not be coming. It's very hard not to be anxious about a possible UC flare. It really can't be stopped.

Bruce was in a study for a company in Bethesda, Maryland for a few days. He tested a device that stores UC information. Like a diary. The diary will be part of a research study for a pharmaceutical company that is testing a UC drug on children. The current medication is for adults only and the 8-12 week study will determine if children can use it. The device was really cool. Looked like a phone and every night it asked Bruce a series of questions regarding his day and how he felt,symptoms and bathroom habits. This information was sent to pharmaceutical company so they can keep track of how medication will work on kids. They even asked for his opinions, what he would he would change to make easier. What a great idea to use for both arthritis and UC. I think some things get lost in between doctor appts. And it helps to see any patterns or problems and benefits on how your child is doing between Dr. visits. This was a big study in regards to accurately tracking information for the companies research. Hey Mom, I'm a Beta Tester!

Bruce is still flaring or the Remicade is losing it's magic. We are not sure. He is
tight in his low back and upper thoracic area and very weak in his pelvis. His
stretching exercises are hard to do. He can barely pull his legs up while laying down
since this motion has to do with the strength in his core. Muscle weakness is still a
problem as well as the Enthesitis. Both knees hurt and stiff in the morning. Both hands
are swollen across the knuckles. Cannot sit for any length of time and he tires
easily. Pain in chest is still there, so breathing exercises are important I know his
body is trying to fight this because he's taking naps. 2 to 5 hours every couple of
days. Last Friday he woke up around 7am only to go back to bed around 10 and slept till
3pm. That night he went to bed at 7:30pm. Too much sleeping and not enough activity
just makes things worse. It's wearing him out

I'm on my second month of Methotrexate shots. I think I don't get tired from the shots like most people but it's hard to tell because I have hypothyroidism and take my medication all at once which I'm not supposed to do but I do anyways. I hit a wall
everyday around 4 ish. I wouldn't hit this wall if I broke up my thyroid meds. What I
do get is a stomachache. It's just enough to be bothersome. I get this a day or two
later, not immediately. I've tried taking my shot before bed to see if this works but
no. I was hoping the ill effect would come the next night while sleeping...not!
It's just enough to feel blah for a few days and then I feel better only to take the shot again. This medication wrecks havoc on my body. Let's just say female problems do not go away. I do think the combination of Mobic and MTX has helped me and I'm grateful for this. Most mornings I wake up with overall stiffness but I don't hurt but there are some days I can barely get out of bed my shoulders hurt so bad. My hands do feel better
most days but other times the ache doesn't go away and I have a sharp pain in both thumbs. I made a big Pyrex dish of baked ziti and left it out to cool. As I was putting the dish in the fridge I dropped it. Yup, hit the hard wood floor, made a dent and ziti went everywhere. Broke the door handle of the fridge and had to clean it all up. My
strength is gone in my hands. Even pumping gas is a problem to hold down the lever. No strength. Hips hurt all the time, that never goes away. Sitting is such a problem for me. I sound like the meds are not working but they are. The pain is not constant. Im
getting relief and my hands feel better more often than not.

I'm writing my woes because I can't believe kids go through this. I'm in awe of kids who have arthritis. They push right through it. You have to. what I have learned is
that a family comes together. You become closer and work together. My husband helps me
out so much and Katie is helping me in the kitchen. Bruce even gets in there. I'm so
thankful for the good days that I have that the bad ones become manageable.

Moms Rheumy Results

Well I had my follow up appointment yesterday with my Rheumatologist. I really never thought I would say that for myself. Ob, Internal Medicine, endocrinologist...just never thought about it for me until last month. I was hoping that maybe what I have was a virus and I could stop taking the Meloxicam. I kept saying...tomorrow morning I will wake up and my hands won't hurt and I will get out of bed not looking like a 90 year old woman. I keep apologizing. I'm trying not to complain. My back and my butt (SI joints) I can live with...even my shoulders. It's just hard when it's your hands. I have no strength. At night I get so stiff in my hips and low back. I'm still walking about 3-4 miles a day. That's even harder because I don't want to. Im so tired. Parts of my feet hurt that have never hurt. All this goes away after moving around and I really do feela bit better. It's only when I stop. The ache in my hands and wrists never leave. This doesn't throb and it's not tender to touch the knuckles, well just a couple... I can't call it pain..more of an ache..deep inside and it moves up into my wrists. Its more annoying than anything else or if hit my hand on the side of a table. I do have pain when touched/pressed around hips, shoulders(tendons)and buttocks. A gentle squeeze of my lower back, butt, hips and Achilles and I jump. So the tendons and muscle inflammation is probably a product of enthesitis. I swear I thought it was due to walking.

So my Dr comes in and tells me I'm in the same category as my son...nothing is elevated but my radiologic images tell otherwise. I have erosions to the distal IP joints in both hands and sclerosis of both SI joints more prominent on the right. I have mild degenerative changes primarily to L5 to S1 facets. The Dr thinks I have rheumatoid arthritis because how fast it came on... but both pinkies are tender. My right pinky more so at the first knuckle below the nail. She doesn't think I have psoriasis because I don't have any spots...but both elbows will itch at times and cause odd looking markings... There is a good possibility spondylitis due to the enthesitis and both heels and achilles hurt. At this time she not gonna say. She will wait. It can be a bit confusing that my labs are very good. There is always one that comes up odd...abnormal protein band 1. I dont think Im supposed to have any and I tested high at 0.3. Ya...I dont know. Im trying not to read into too much...I still am wondering about testing positive for scleroderma. Sed Rate is 13 and CRP is .70 so all within normal but its so damn hard to tell and it takes time. Lets play the waiting game. Im glad that she is progressive enough to start me on medication. she is very nice and Im quite pleased with her. My husband wanted me to go get a second opinion. I would if this was the first time I was learning about this but I know how it goes and I know how I feel and I know what shes talking about. If my back gets worse then I will end up going to see a back Dr or someone who specializes in whatever we find out I have. Hopefully in the near future. There is a good Dr at Mayo Clinic whose specialty is AS. I will go see him if I go in that direction.

So I am on MTX at .60ml injections weekly for 2 weeks then to .80ml weekly. I started yesterday and Bruce and I did shots together. I see the dr again in 6 weeks. The Meloxicam is working...I think it works for my back and SI joints but my hands/wrists get better around noon and then comes and goes through out day. I think the Meloxicam is taking the edge off but it's really hard to say. No wonder Bruce doesn't know how to answer sometimes when we ask questions and expect him to tell us exactly how he feels. If I can't describe it, how can he. Sometimes there is just no exact answer.


Bruce is still flaring...we are deciding what to do next. More Remicade or do we move onto Humira? Thank Goodness for Anthony and his massages. For Bruce this really helps to loosen up the back even if it's only for the time he's there.

Proprioception... Things you learn from your PT

Normally I don't find time to write as much as I am writing, but information keeps coming at me that makes me do research. So I thought I would share. Maybe others have heard of this and its no big deal but I find this fascinating and worrisome.

I took Bruce to his PT yesterday and he went from doing well 2 weeks ago to becoming inflamed and walking in with an air-cast on his left foot. I looked like hell, my hands hurt so bad. It was just funny..Yes Funny Haha because we just looked a mess. I had so much running through my mind yesterday plus I had to do the laundry, sweep the floors and paint the house...Just kidding on painting the house.

Anthony, Bruce's PT listened about Bruce's constant falling. We then moved onto his back becoming stiff throughout the day. By 3 pm his back was tight. Last night he slept in his anti gravity chair (yes the outside lounger) then moved himself to his bed. Anthony looked at his ankle and felt that it wasn't fractured or broken but the constant rolling and tripping has messed with his tendons. He cannot flex the foot, it stays at 0 degrees. He said that the constant falling will probably continue and then you get into more trouble and more problems with the ankle. He said to keep the boot on for 2 weeks because hes hurt the ankle plus with the arthritis/enthesitis we don't want that area to become even weaker. He did say that he thought he had proprioception. I have never heard of this word. He explained that the word means sense of perception of the relative parts of the body. It is knowing where various body parts are in relationship with how they are moving and how much energy is being used to move it. Specialized Nerve Cells called proprioceptors are found in large numbers in the tissues that hold joints together (tendons, muscles, ligaments, fascia). Propreceptors sense things like the amount of stretch, movement and pressure of or on these various tissues. When the proprioceptors are stimulated by stretch or movement, the nerve movement is fed to the brain via the spinal cord and nerve system. When in the brain it is integrated into something your body can understand. This is continual and thus your brain interprets the information and sends the messages back to parts of the body over motor nerves. When this system doesn't work properly a lot of problems can arise. Maybe this is why Bruce keeps falling.

Every time a proprioceptive nerve ending is not being stimulated usually due to a loss of normal joint range of motion, 30 returning motor responses from the brain to the body are not being stimulated. This causes degeneration of the restricted joint and thus causing loss of normal joint motion. This is a big problem in Juvenile Arthritis and Ankylosing Spondylitis and kids with lower extremity arthritis. So loss of range
and balance causes proprioception.

As strength and balance are related, children and adults with arthritis and lower extremity arthritis need exercise that enhances balance.

Bruce cannot stand for a long time...but put him on one foot and he is all over the place. He has impaired balance. I think I was in awe of my PT.

OH I did borrow some of what I wrote, ok most of it. It was a mouthful. My PT has been working with Bruce on balance. His left leg is much weaker than the right so we will try to build that muscle, fatigue and balance as we progress forward and hopefully the left ankle will get stronger.

I thought this was very interesting...I don't know if it means anything for Bruce long term and will try to gain more knowledge of this. This also can be due to sensory processing issues which Bruce doesn't have. I only read about proprioception in kids who have Juvenile Arthritis and Ankylosing Spondylitis. The swelling and inflammation have more to do with this for Bruce. Bruce doesn't swell much but there is inflammation which makes those neurons not work properly. Just another piece of the puzzle.