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.
Saturday, November 10, 2012
Friday, November 9, 2012
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.
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.
Monday, November 5, 2012
Here We Go...Again
I cant believe that we just left NIH and that Bruce is starting a flare again. Its been 15 days since his last Remicade infusion. He has been in good shape except for his left ankle. He has been falling lately and or his left ankle has been rolling out from underneath him. He had a full body MRI on the 2nd and he had fallen down some stairs that morning. He also fell a couple more times after that and a few more times before that... The MRI showed no inflammation. He does have swelling around the Achilles, you can tell by the lines in the back of the heel. I gave Bruce Katie's air-cast and he said it felt so good to have it on. We see the PT today at 3 pm. Anthony said he will assess the ankle and we will go from there. I got a sneaky suspicion that this isn't all about rolling of his foot. But at this point my head is spinning because I cant get my child ahead in the feeling good department. Well that's not true. OK he has felt better for a few weeks. but that's it. I really thought that the MTX injections were going to be the save all. I think at this point you hope anything will work. I thought that going from the oral to the MTX injections would be the reason why the Remicade wasn't working as well. I even gave the go ahead despite the brain fog. Did I really think this was going to help? Well NO but I was hoping. At this point in the game anything could help or not. Obviously the latter.
Bruce woke up this morning and put the air-cast on. He tried to apply pressure to his left foot and nope. Yes I know a sprain takes awhile to heal but this has been going on for awhile now. The PT saw that the left leg is extremely weak. So it would make sense that the ankle as well would be weak. I just don't think its due to rolling but its mostly the arthritis. The rolling just made it worse. I think arthritis kids have so many aches and pains that new joints or new aches take over and they don't feel the dull or constant aches that they have due to there tolerance to pain. Did that make sense?
Bruce got up very early and decided to do his schoolwork. He has really been on his own and I'm proud of him. I had noticed this morning that he was getting up and down from his chair. Constantly!.He was excited to tell me about something in history when he cracked his back without realizing it. I didn't say anything because, he will tell me when something is wrong. About an hour later he says..."Mom, I cant sit down. I'm uncomfortable. My back isn't stiff but I feel like I cant sit." I could tell he was upset so I asked him if he wanted to go for a walk and he said yes. He asked if he could hold my hand and I knew he was upset. He said his ankle felt good in the boot. He then asked about him making antibodies towards his medication. If he doesn't make antibodies then why doesn't the medication keep working. I told him I didn't really know but that the body can build up a tolerance to medication and after a time you need more. I asked if his back felt better and he said that it was better while he walked. When we got back home he said he would try his anti gravity chair (the outdoor lounge chair that distributes his body weight). He said his back felt better and he told me he was cracking his back without even realizing it. Its now his whole back not just the lower part. This started with the last flare. His knuckles too again feel better when cracked! I had watched him do it but really thought it was nothing until today when he has done it so many times.
I called Dr. N and sent NIH an email. I cant believe we were just there. He was fine. So is the Remicade not working? If NIH saw Bruce would they of been able to see a difference in him? Probably not yet. Can we catch this in time instead of watching the downhill progression Bruce has to go through. I honestly think that we have increased his dosage of any of the meds hes been on because they stopped working... not because he was flaring. This is scary. Giving prednisone only band-aids it and we have to give more medication 2 weeks after the ending of the prednisone taper.
This is his usual pattern. Back starts to feel uncomfortable and cant sit for long periods, then for short periods. will crack back to get relief. then he cant stand or sit and the back is so tight it no longer pops. Then his hips and girdle become weak and inflamed. Back becomes inflamed. His knees hurt and he starts to shuffle out of bed and around the house. Then hes unable to stand and hes back in his wheelchair. By this time his body is so weak and stiff. Nothing helps the stiffness. We tried it all. I feel like I'm doing everything possible for my son but my foot is nailed to the floor and I'm just going around in circles. So its either upping the Remicade which both Drs are not comfortable with or Humira. If Humira follows the path of Bruces previous medications, we are in big trouble. I have the Ulcerative Colitis to worry about.
I'm at a loss of what we do next... I let my guard down so I'm mentally not prepared.
Bruce woke up this morning and put the air-cast on. He tried to apply pressure to his left foot and nope. Yes I know a sprain takes awhile to heal but this has been going on for awhile now. The PT saw that the left leg is extremely weak. So it would make sense that the ankle as well would be weak. I just don't think its due to rolling but its mostly the arthritis. The rolling just made it worse. I think arthritis kids have so many aches and pains that new joints or new aches take over and they don't feel the dull or constant aches that they have due to there tolerance to pain. Did that make sense?
Bruce got up very early and decided to do his schoolwork. He has really been on his own and I'm proud of him. I had noticed this morning that he was getting up and down from his chair. Constantly!.He was excited to tell me about something in history when he cracked his back without realizing it. I didn't say anything because, he will tell me when something is wrong. About an hour later he says..."Mom, I cant sit down. I'm uncomfortable. My back isn't stiff but I feel like I cant sit." I could tell he was upset so I asked him if he wanted to go for a walk and he said yes. He asked if he could hold my hand and I knew he was upset. He said his ankle felt good in the boot. He then asked about him making antibodies towards his medication. If he doesn't make antibodies then why doesn't the medication keep working. I told him I didn't really know but that the body can build up a tolerance to medication and after a time you need more. I asked if his back felt better and he said that it was better while he walked. When we got back home he said he would try his anti gravity chair (the outdoor lounge chair that distributes his body weight). He said his back felt better and he told me he was cracking his back without even realizing it. Its now his whole back not just the lower part. This started with the last flare. His knuckles too again feel better when cracked! I had watched him do it but really thought it was nothing until today when he has done it so many times.
I called Dr. N and sent NIH an email. I cant believe we were just there. He was fine. So is the Remicade not working? If NIH saw Bruce would they of been able to see a difference in him? Probably not yet. Can we catch this in time instead of watching the downhill progression Bruce has to go through. I honestly think that we have increased his dosage of any of the meds hes been on because they stopped working... not because he was flaring. This is scary. Giving prednisone only band-aids it and we have to give more medication 2 weeks after the ending of the prednisone taper.
This is his usual pattern. Back starts to feel uncomfortable and cant sit for long periods, then for short periods. will crack back to get relief. then he cant stand or sit and the back is so tight it no longer pops. Then his hips and girdle become weak and inflamed. Back becomes inflamed. His knees hurt and he starts to shuffle out of bed and around the house. Then hes unable to stand and hes back in his wheelchair. By this time his body is so weak and stiff. Nothing helps the stiffness. We tried it all. I feel like I'm doing everything possible for my son but my foot is nailed to the floor and I'm just going around in circles. So its either upping the Remicade which both Drs are not comfortable with or Humira. If Humira follows the path of Bruces previous medications, we are in big trouble. I have the Ulcerative Colitis to worry about.
I'm at a loss of what we do next... I let my guard down so I'm mentally not prepared.
Sunday, November 4, 2012
Results From NIH
I was really hoping that every single question I had was going to be answered when we visited NIH in Bethesda, Maryland. But sadly this is the reason why the good doctors are doing the research..,to get more answers. You see there is just not enough information on kids who have Juvenile Spondylitis. I was just really hoping that they knew of some new procedure, drug, diet or anything else that would help Bruce. I was told there are a few more drugs in the pipeline but as of right now...nothing for this type of arthritis as well as nothing for kids.
Bruce was seen by a research Dr who took all his information. Then he was checked all over from jaw to Achilles. The Dr then took a pressure gauge and pressed on every joint and around each joint. He then checked for inflammation in every joint. He had mild swelling in his left Achilles and 1st and 2nd knuckles of both hands were swollen. They did a full body MRI which took about 1 hour. They took 15 vials of blood and a DNA test. We then were seen by the gastroenterologist who spent 2 hours with us. She told us that you can not have both UC and Crohns. Which will be an interesting conversation with the Dr who said you could. Bruce may test positive for Crohns but its a false positive but she said unfortunately that he would have to flare again to see the bowel activity and that is a very good possibility because it normally happens at the same time every year you flare for UC. If you flare in Feb of last year..you can bet that you will flare the following year...almost to the day. Why? They don't know. It just does. So we will be on the lookout this February for Bruce. It will be his 3rd flare if he flares in February. They don't know if his flares will get better or worse. Its really such a sketchy disease...especially when you throw the whole arthritis into it. She suspected that eventually a decision would be made to remove the colon. As much as I would like to think this would not happen the possibility is always there. How do you fix something when you don't know how its going to present itself in the future. She was very nice and she would like to follow Bruce and see him the next time we are to come back.
After the gastro Dr, came the research team to discuss there findings. His whole body MRI showed no inflammation. Which is odd because both CT and MRI in the last 11 months showed edema of the bone-marrow and narrowing or thickening of the SI Joints. But the Dr thought this was due to the amount of remicade Bruce is taking and that its every 3 weeks and its helping to keep the inflammation down. His diagnosis as of right now is Juvenile Spondyloarthritis. They will not diagnose you unless they see physical evidence on X-ray, MRI etc. Even though it was there it wasn't there when they looked at Bruces recent body MRI. What he thought was that Bruce has had a lot of Enthesitis...which is inflammation of the joint capsules, ligaments and or tendons to the bone. It is classic of Anklosing Spondylitis. There is tenderness above and below each of his joints that are affected. This can cause extra bone formation thus resulting in fusion to the tendons. Luckily this doesn't always happen. Sleep has a lot to do with the body helping itself, so they had recommended a medication for sleep. When the body is constantly in hyper mode due to pain or inflammation you just don't get a good nights sleep which can diminish regeneration. So that should be looked into as well as reconditioning, which should help his weakness of his left leg. They know this is hard to do. Fatigue and flares come and go but its important to try and very important to stretch. The Chostochondritis is probably due to enthesitis setting in to the chest so breathing exercises are important. I am thankful for the exercises we have done, they really have helped.
We talked a lot about Humira...that is our last medication to try. They do not know why Bruce needs an increase in meds or a change in meds every 3 to 4 months. He doesn't build up antibodies...but they were going to check that again from the lab work. What they do know is that the meds loose there effectiveness. They didn't know why Bruce has night sweats so bad that I change out his pillow. They suspect... but don't really know. The one thing we have to be careful on is the healing of the enthesitis...which to be honest nothing has ever helped that. Bruce has always had that. But this can cause a buildup of scarring. But what the hell can I do if nothing helps the enthesitis. So we will try sleep. Bruce doesn't sleep well, which I found out since we all slept for a week in one room. He tosses and turns and just cant get comfortable. Bruce has problems with the hips and that can be a bit worse for someone who is going in the direction of Spondylitis. They would like to see Bruce in 6 months and follow him. They would really like to see Bruce when hes in a flare. I know that it would be tough on Bruce but he is willing to make the trip for them to check him out. It comes out of your pocket but all the labs, MRI and the drs knowledge are free. They want to get a better understanding of this disease. The drs were great, very thorough, and had all the time in the world to answer questions.
Overall the trip was successful. We have research Drs that are on board with Bruce's doctors. There is no cure for this illness but by being in this research we are able to get a better understanding. I wish there was more to know. There isn't. A woman I was talking to was shocked to find that there isn't a cure. She didnt understand that arthritis is an auto immune issue and that your body is attacking itself. It was hard for her to understand...Its really hard for all of us to understand.
Bruce was seen by a research Dr who took all his information. Then he was checked all over from jaw to Achilles. The Dr then took a pressure gauge and pressed on every joint and around each joint. He then checked for inflammation in every joint. He had mild swelling in his left Achilles and 1st and 2nd knuckles of both hands were swollen. They did a full body MRI which took about 1 hour. They took 15 vials of blood and a DNA test. We then were seen by the gastroenterologist who spent 2 hours with us. She told us that you can not have both UC and Crohns. Which will be an interesting conversation with the Dr who said you could. Bruce may test positive for Crohns but its a false positive but she said unfortunately that he would have to flare again to see the bowel activity and that is a very good possibility because it normally happens at the same time every year you flare for UC. If you flare in Feb of last year..you can bet that you will flare the following year...almost to the day. Why? They don't know. It just does. So we will be on the lookout this February for Bruce. It will be his 3rd flare if he flares in February. They don't know if his flares will get better or worse. Its really such a sketchy disease...especially when you throw the whole arthritis into it. She suspected that eventually a decision would be made to remove the colon. As much as I would like to think this would not happen the possibility is always there. How do you fix something when you don't know how its going to present itself in the future. She was very nice and she would like to follow Bruce and see him the next time we are to come back.
After the gastro Dr, came the research team to discuss there findings. His whole body MRI showed no inflammation. Which is odd because both CT and MRI in the last 11 months showed edema of the bone-marrow and narrowing or thickening of the SI Joints. But the Dr thought this was due to the amount of remicade Bruce is taking and that its every 3 weeks and its helping to keep the inflammation down. His diagnosis as of right now is Juvenile Spondyloarthritis. They will not diagnose you unless they see physical evidence on X-ray, MRI etc. Even though it was there it wasn't there when they looked at Bruces recent body MRI. What he thought was that Bruce has had a lot of Enthesitis...which is inflammation of the joint capsules, ligaments and or tendons to the bone. It is classic of Anklosing Spondylitis. There is tenderness above and below each of his joints that are affected. This can cause extra bone formation thus resulting in fusion to the tendons. Luckily this doesn't always happen. Sleep has a lot to do with the body helping itself, so they had recommended a medication for sleep. When the body is constantly in hyper mode due to pain or inflammation you just don't get a good nights sleep which can diminish regeneration. So that should be looked into as well as reconditioning, which should help his weakness of his left leg. They know this is hard to do. Fatigue and flares come and go but its important to try and very important to stretch. The Chostochondritis is probably due to enthesitis setting in to the chest so breathing exercises are important. I am thankful for the exercises we have done, they really have helped.
We talked a lot about Humira...that is our last medication to try. They do not know why Bruce needs an increase in meds or a change in meds every 3 to 4 months. He doesn't build up antibodies...but they were going to check that again from the lab work. What they do know is that the meds loose there effectiveness. They didn't know why Bruce has night sweats so bad that I change out his pillow. They suspect... but don't really know. The one thing we have to be careful on is the healing of the enthesitis...which to be honest nothing has ever helped that. Bruce has always had that. But this can cause a buildup of scarring. But what the hell can I do if nothing helps the enthesitis. So we will try sleep. Bruce doesn't sleep well, which I found out since we all slept for a week in one room. He tosses and turns and just cant get comfortable. Bruce has problems with the hips and that can be a bit worse for someone who is going in the direction of Spondylitis. They would like to see Bruce in 6 months and follow him. They would really like to see Bruce when hes in a flare. I know that it would be tough on Bruce but he is willing to make the trip for them to check him out. It comes out of your pocket but all the labs, MRI and the drs knowledge are free. They want to get a better understanding of this disease. The drs were great, very thorough, and had all the time in the world to answer questions.
Overall the trip was successful. We have research Drs that are on board with Bruce's doctors. There is no cure for this illness but by being in this research we are able to get a better understanding. I wish there was more to know. There isn't. A woman I was talking to was shocked to find that there isn't a cure. She didnt understand that arthritis is an auto immune issue and that your body is attacking itself. It was hard for her to understand...Its really hard for all of us to understand.
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