Hi all,
I completely forgot to mention something about this, but a while back,, after one of my mom's worst falls, we had her x-rayed, and discovered that she has what is often referred to as "bamboo spine."
The entire diagnosis is actuallly, ankylosing (sp) spondilitis.
Interestingly, when I did a search on it, one of the things I found was the site of the American organization for this condition, and in it are lots of articles that relate to conditions like ours.
Among the things I learned from these, I read a report stating that there is inflammation in the guts of persons with this condition, and sometimes it can be subclinical, but sometimes it can lead to Crohns, if I remember correctly.
Another article reported that the guts of first degree relatives of persons with A.S. are inflammed.
One said that hearing loss is very common among those with A.S., and others, that rhematoid arthritis and osteoporosis tend to accompany it.
It seems to me that someone over on the old site mentioned having spondylitis or possibly a close relative. Anyone remember that? Is the person a member here, perhaps?
Apparently, eventually, the spine tends to fuse together creating stiffness, such that certain movement is prohibited.
When this happens in the neck of an individual, anyone working with them, such as intubating, should they need CPR, needs to not bend the head back, but rather use alternative techniques to keep from breaking the neck of the victim.
Apparently, there are some differences between the way this disease affects children and the way it affects those who get it later in life.
OK, anyone have a comment?
Yours, Luce
Spondilitis---Anyone have it, or a relative?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Luce, it may have be me that posted about my Mom having ankylosing spondilitis. She was diagnosed with it in the summer of last year before moving down here. A Rheumatologist made the diagnosis.
However, the Rheumatologist she is seeing here disagrees with the diagnosis. He is supposedly one of the top Rheumatologists in the country, so I guess we have to listen to him.
Mom IS quite hard of hearing but she doesn't have RA or osteoporosis, in fact her bones are better than mine. Her doctor was very surprised about how good her bones are. Unfortunately they like to make spurs and she has LOTS of them all up and down her spine, and in her shoulder joints, etc. She is in constant pain. She just had an epidural steroid injection in her upper back/neck area last week. She is due to have another in her lumbar region in 3 weeks. I am really hoping they will give her some
pain relief.
I'm getting off subject, sorry.
One more thing - about the neck - She certainly does have a problem with her neck. She can't move her head back and tuck in her chin like a normal person. When she went to PT earlier this year, they told her that the spinal bones in her neck have all shifted.
Now, whether she actually does or doesn't have A. Spondylitis or not, I couldn't say. I only know that it's supposed to create a LOT of pain and she certainly has a LOT of pain. Whether it's the same pain or not - I don't know. Conflicting opinions of experts haven't shed any light on it, but since there isn't much to do about it, I guess it doesn't really matter that much what we call it.
I hope your Mom doesn't have so much pain.
Love, Shirley
However, the Rheumatologist she is seeing here disagrees with the diagnosis. He is supposedly one of the top Rheumatologists in the country, so I guess we have to listen to him.
Mom IS quite hard of hearing but she doesn't have RA or osteoporosis, in fact her bones are better than mine. Her doctor was very surprised about how good her bones are. Unfortunately they like to make spurs and she has LOTS of them all up and down her spine, and in her shoulder joints, etc. She is in constant pain. She just had an epidural steroid injection in her upper back/neck area last week. She is due to have another in her lumbar region in 3 weeks. I am really hoping they will give her some
pain relief.
I'm getting off subject, sorry.
One more thing - about the neck - She certainly does have a problem with her neck. She can't move her head back and tuck in her chin like a normal person. When she went to PT earlier this year, they told her that the spinal bones in her neck have all shifted.
Now, whether she actually does or doesn't have A. Spondylitis or not, I couldn't say. I only know that it's supposed to create a LOT of pain and she certainly has a LOT of pain. Whether it's the same pain or not - I don't know. Conflicting opinions of experts haven't shed any light on it, but since there isn't much to do about it, I guess it doesn't really matter that much what we call it.
I hope your Mom doesn't have so much pain.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Shirley,
i"m so sorry to hear that your mother has all this pain.
My mother seems to be complaining more of her neck and head hurting, especially once she's tired in the evening. She attributes it to starting with one of her bad falls a while back in which she hit her head very hard. I'm always concerned anyway, due to the whiplashing from these falls.
I suppose any stiffness in that area would just magnify the discomfort.
We've not had her neck X-rayed, but just bones of her lower half after another bad fall on that area.
She did have sacroiliac pain with lower back pain similar to what I used to have years ago, and a neuro told me once that lower back pain is very common in persons with PD. He said that since you can find small fractures in so many people's backs when they are x-rayed, probably alot of people think their pain is related to those fractures when it's really more related to the PD. Now, I'm waaay off track! Ha!
It would be interesting to ask the new Rhemy how the two conditions are differentiated from each other --the A.S. and what your mother has.
The article didn't seem to indicate the R.A. or osteoporosis were universal in A.S., but it sure sounded like it for the first degree relatives' gut inflammation.
Sometimes I think all this inflammation stuff is really the same thing caused by some inflammatory process, and what gets most affected depends on the genes which are activated at that time of our lives.
Perhaps the differentials don't mean as much as everyone thinks.
Just a thought.
Thanks. Yours, Luce
i"m so sorry to hear that your mother has all this pain.
My mother seems to be complaining more of her neck and head hurting, especially once she's tired in the evening. She attributes it to starting with one of her bad falls a while back in which she hit her head very hard. I'm always concerned anyway, due to the whiplashing from these falls.
I suppose any stiffness in that area would just magnify the discomfort.
We've not had her neck X-rayed, but just bones of her lower half after another bad fall on that area.
She did have sacroiliac pain with lower back pain similar to what I used to have years ago, and a neuro told me once that lower back pain is very common in persons with PD. He said that since you can find small fractures in so many people's backs when they are x-rayed, probably alot of people think their pain is related to those fractures when it's really more related to the PD. Now, I'm waaay off track! Ha!
It would be interesting to ask the new Rhemy how the two conditions are differentiated from each other --the A.S. and what your mother has.
The article didn't seem to indicate the R.A. or osteoporosis were universal in A.S., but it sure sounded like it for the first degree relatives' gut inflammation.
Sometimes I think all this inflammation stuff is really the same thing caused by some inflammatory process, and what gets most affected depends on the genes which are activated at that time of our lives.
Perhaps the differentials don't mean as much as everyone thinks.
Just a thought.
Thanks. Yours, Luce
Luce,
Shirley's post was made on this site, and there have been other discussions/mentions of it. Here, for example, is Shirley's post, and a link to another thread that mentioned it:
http://www.perskyfarms.com/phpBB2/viewt ... pondylitis
http://www.perskyfarms.com/phpBB2/viewt ... pondylitis
The search I made turned up 8 matches, (including the one you posted in this thread).
Tex
Shirley's post was made on this site, and there have been other discussions/mentions of it. Here, for example, is Shirley's post, and a link to another thread that mentioned it:
http://www.perskyfarms.com/phpBB2/viewt ... pondylitis
http://www.perskyfarms.com/phpBB2/viewt ... pondylitis
The search I made turned up 8 matches, (including the one you posted in this thread).
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
genealogy-janet
- Posts: 10
- Joined: Sun Aug 19, 2007 8:55 pm
- Location: SLC, Utah
AS -I could have it.
Hi Everyone!
I'm back because I went off-diet a few years back and have since developed a number of autoimmune symptoms the latest of which is looking like an enteropathic ankylosing spondylarthropathy.
I've got arthritis on X-ray in my sacroiliac joints and bilateral plantar fasciaitis with heel spurs. I can have great difficulty walking and do have lots of bilateral ankle, hip and lower back pain with stiffness. I'm waiting to get into the Doc to see if my suspiscian might be confirmed. I've added morning lap swimming, PT exercises for my feet and hips and yoga.
Originally I joined the old site because of systemic problems mainly polyarticular joint pain that developed two years after being diagnosed with LMC. Polly suggested getting an ANA which has remained at 1:640 and speckled. I've been to a rheumy three times now who I haven't found to be helpful and doesn't want me to come back. He's told me that though my xrays show degenerative disease with functional loss (I could have the wording wrong on that) he maintains that I have no inflammation and that there is no scientific evidence to suggest that diet has any effect on health. LOL!!! I had gone in because my knee swoll up so bad that I couldn't bend it with the xray reporting rarefaction of the bone and have two big soft round lumps on both sides of both outer ankles and a dx of plantar fasciitis with heel spur.
I went off diet because Dr. Christopher Jackson at the U of U rheumatology clinic was so addamat that there is no relationship between diet and autoimmune illness. I didn't want to beleive him but when I developed horrible diarrhea (from a rotovirus infection) while on diet I went back to eating like everyone else. My colitis has slowly improved over the last two years though I have developed reflux, a thyroid nodule, and hyperthyroidism.
I'm glad to be alive. Pain is a constant companion, a friend.
I'm back because I went off-diet a few years back and have since developed a number of autoimmune symptoms the latest of which is looking like an enteropathic ankylosing spondylarthropathy.
I've got arthritis on X-ray in my sacroiliac joints and bilateral plantar fasciaitis with heel spurs. I can have great difficulty walking and do have lots of bilateral ankle, hip and lower back pain with stiffness. I'm waiting to get into the Doc to see if my suspiscian might be confirmed. I've added morning lap swimming, PT exercises for my feet and hips and yoga.
Originally I joined the old site because of systemic problems mainly polyarticular joint pain that developed two years after being diagnosed with LMC. Polly suggested getting an ANA which has remained at 1:640 and speckled. I've been to a rheumy three times now who I haven't found to be helpful and doesn't want me to come back. He's told me that though my xrays show degenerative disease with functional loss (I could have the wording wrong on that) he maintains that I have no inflammation and that there is no scientific evidence to suggest that diet has any effect on health. LOL!!! I had gone in because my knee swoll up so bad that I couldn't bend it with the xray reporting rarefaction of the bone and have two big soft round lumps on both sides of both outer ankles and a dx of plantar fasciitis with heel spur.
I went off diet because Dr. Christopher Jackson at the U of U rheumatology clinic was so addamat that there is no relationship between diet and autoimmune illness. I didn't want to beleive him but when I developed horrible diarrhea (from a rotovirus infection) while on diet I went back to eating like everyone else. My colitis has slowly improved over the last two years though I have developed reflux, a thyroid nodule, and hyperthyroidism.
I'm glad to be alive. Pain is a constant companion, a friend.
-
genealogy-janet
- Posts: 10
- Joined: Sun Aug 19, 2007 8:55 pm
- Location: SLC, Utah
AS -I could have it.
Hi Everyone!
I'm back because I went off-diet a few years back and have since developed a number of autoimmune symptoms the latest of which is looking like an enteropathic ankylosing spondylarthropathy.
I've got arthritis on X-ray in my sacroiliac joints and bilateral plantar fasciaitis with heel spurs. I can have great difficulty walking and do have lots of bilateral ankle, hip and lower back pain with stiffness. I'm waiting to get into the Doc to see if my suspiscian might be confirmed. I've added morning lap swimming, PT exercises for my feet and hips and yoga.
Originally I joined the old site because of systemic problems mainly polyarticular joint pain that developed two years after being diagnosed with LMC. Polly suggested getting an ANA which has remained at 1:640 and speckled. I've been to a rheumy three times now who I haven't found to be helpful and doesn't want me to come back. He's told me that though my xrays show degenerative disease with functional loss (I could have the wording wrong on that) he maintains that I have no inflammation and that there is no scientific evidence to suggest that diet has any effect on health. LOL!!! I had gone in because my knee swoll up so bad that I couldn't bend it with the xray reporting rarefaction of the bone and have two big soft round lumps on both sides of both outer ankles and a dx of plantar fasciitis with heel spur.
I went off diet because Dr. Christopher Jackson at the U of U rheumatology clinic was so addamat that there is no relationship between diet and autoimmune illness. I didn't want to beleive him but when I developed horrible diarrhea (from a rotovirus infection) while on diet I went back to eating like everyone else. My colitis has slowly improved over the last two years though I have developed reflux, a thyroid nodule, and hyperthyroidism.
I'm glad to be alive. Pain is a constant companion, a friend.
I'm back because I went off-diet a few years back and have since developed a number of autoimmune symptoms the latest of which is looking like an enteropathic ankylosing spondylarthropathy.
I've got arthritis on X-ray in my sacroiliac joints and bilateral plantar fasciaitis with heel spurs. I can have great difficulty walking and do have lots of bilateral ankle, hip and lower back pain with stiffness. I'm waiting to get into the Doc to see if my suspiscian might be confirmed. I've added morning lap swimming, PT exercises for my feet and hips and yoga.
Originally I joined the old site because of systemic problems mainly polyarticular joint pain that developed two years after being diagnosed with LMC. Polly suggested getting an ANA which has remained at 1:640 and speckled. I've been to a rheumy three times now who I haven't found to be helpful and doesn't want me to come back. He's told me that though my xrays show degenerative disease with functional loss (I could have the wording wrong on that) he maintains that I have no inflammation and that there is no scientific evidence to suggest that diet has any effect on health. LOL!!! I had gone in because my knee swoll up so bad that I couldn't bend it with the xray reporting rarefaction of the bone and have two big soft round lumps on both sides of both outer ankles and a dx of plantar fasciitis with heel spur.
I went off diet because Dr. Christopher Jackson at the U of U rheumatology clinic was so addamat that there is no relationship between diet and autoimmune illness. I didn't want to beleive him but when I developed horrible diarrhea (from a rotovirus infection) while on diet I went back to eating like everyone else. My colitis has slowly improved over the last two years though I have developed reflux, a thyroid nodule, and hyperthyroidism.
I'm glad to be alive. Pain is a constant companion, a friend.
-
barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Janet-----I would have to laugh @ your *developed* reflux----thyroid nodules and HYPER -- but I shall just grin---
U see---my MCC is under control but---this past year---I have been diagnosed with HYPER---and had 3 nodules on left side along with 1 large nodule of right side----all are ok----and I have slight reflux---nothing that I taste as I burp away----but since I have been on this thyroid meds.--I noticed that the *annoyance* in the mid section has increased--almost like a *left-over* hangover--
I hope everything else gets on its way to *betterness* for U---
Thankfully no pain---
Barbara
U see---my MCC is under control but---this past year---I have been diagnosed with HYPER---and had 3 nodules on left side along with 1 large nodule of right side----all are ok----and I have slight reflux---nothing that I taste as I burp away----but since I have been on this thyroid meds.--I noticed that the *annoyance* in the mid section has increased--almost like a *left-over* hangover--
I hope everything else gets on its way to *betterness* for U---
Thankfully no pain---
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Hello!
Jack was diagnosed with anklylosing spondylitis about 20 years ago.
His spine has fused and is like a steel rod and he can't bend over to tie his shoes and can't turn his neck right or left or look up. It has since moved down into his hips and from the spikey, calcificatiions and inflammation it will cause him pain in his hips and down his legs.
Periodically, the PCP will put him on the Medro, 6 day pack which will help eleviate the inflammation and pain.
Families members, daughters, sons, can inherit this disease and we were told if our children would start complaining of back pain to get them checked immediately..
I remember with Jack's intial diagnosis, he had lost alot of weight from the pain and I would actually have to pull him up out of bed or help him get up and off of a chair.
It is a very painful disease.. There is no cure, but they can get it to go into remission ..
Love
Dee~~~~~
Jack was diagnosed with anklylosing spondylitis about 20 years ago.
His spine has fused and is like a steel rod and he can't bend over to tie his shoes and can't turn his neck right or left or look up. It has since moved down into his hips and from the spikey, calcificatiions and inflammation it will cause him pain in his hips and down his legs.
Periodically, the PCP will put him on the Medro, 6 day pack which will help eleviate the inflammation and pain.
Families members, daughters, sons, can inherit this disease and we were told if our children would start complaining of back pain to get them checked immediately..
I remember with Jack's intial diagnosis, he had lost alot of weight from the pain and I would actually have to pull him up out of bed or help him get up and off of a chair.
It is a very painful disease.. There is no cure, but they can get it to go into remission ..
Love
Dee~~~~~
Hi Janet,
Long time no see. I hope you can find some solutions for your issues. You're pretty young to be having all those problems.
I have bilateral plantar fasciaitis, (which started about six months ago), and since it's bilateral, it's probably due to rheumatoid arthritis, (together with the fact that my work involves carrying and stacking 50 lb. bags on pallets, on a concrete floor). Shoe inserts, designed for that purpose, and Tylenol, allow me to continue to work. Otherwise I stay off my feet as much as possible, since just standing around for an hour or so will cause severe foot pain.
I've had problems with a stiff neck, (with limited flexibility range), for about seven or eight years, now. The neck problems started about the same time that my digestive system problems started, and it was extremely painful, until I cut gluten out of my diet.
I don't believe that I have ankylosing spondylitis, though, but I've never been checked for that. About three years ago, I slipped on a wet floor, and landed on my tailbone, and it stayed sore for over a year and a half, but that may be normal, for all I know. Other than the neck, I don't have any significant back problems, (and I'm careful not to abuse my back).
Anyway, there's no doubt in my mind that this stuff is diet related, and mostly due to eating gluten for way too many years, before I discovered that it was casing damage.
Dee, how is Jack doing? I trust he's mostly recovered from the surgery, by now, and I hope the surgery resolved the problem.
Love,
Tex
Long time no see. I hope you can find some solutions for your issues. You're pretty young to be having all those problems.
I have bilateral plantar fasciaitis, (which started about six months ago), and since it's bilateral, it's probably due to rheumatoid arthritis, (together with the fact that my work involves carrying and stacking 50 lb. bags on pallets, on a concrete floor). Shoe inserts, designed for that purpose, and Tylenol, allow me to continue to work. Otherwise I stay off my feet as much as possible, since just standing around for an hour or so will cause severe foot pain.
I've had problems with a stiff neck, (with limited flexibility range), for about seven or eight years, now. The neck problems started about the same time that my digestive system problems started, and it was extremely painful, until I cut gluten out of my diet.
I don't believe that I have ankylosing spondylitis, though, but I've never been checked for that. About three years ago, I slipped on a wet floor, and landed on my tailbone, and it stayed sore for over a year and a half, but that may be normal, for all I know. Other than the neck, I don't have any significant back problems, (and I'm careful not to abuse my back).
Anyway, there's no doubt in my mind that this stuff is diet related, and mostly due to eating gluten for way too many years, before I discovered that it was casing damage.
Hmmmmm. Sounds a lot like MC, doesn't it?There is no cure, but they can get it to go into remission ..
Dee, how is Jack doing? I trust he's mostly recovered from the surgery, by now, and I hope the surgery resolved the problem.
Love,
Tex
Thanks Tex for inquiring about Jack.
Unfortunately he is still recovering from his surgery. Two issues could take 1-2 years.. One plus is that his post op PSA was 0.04 which is undetectable. I can't stress enough to the men on this board and to the hubbies to get your PSA's checked if you never have and then every year after.. Now, they are stating to have the first taken at age 40. Unbelievable and sad of how many men in their 40's are being diagnosed with prostate cancer. Most of the time there are no symptoms.
The men that been diagnosed need to get more vocal to bring attention to a very ugly disease... Like women have with breast cancer.
Love
Dee~~~~~
Unfortunately he is still recovering from his surgery. Two issues could take 1-2 years.. One plus is that his post op PSA was 0.04 which is undetectable. I can't stress enough to the men on this board and to the hubbies to get your PSA's checked if you never have and then every year after.. Now, they are stating to have the first taken at age 40. Unbelievable and sad of how many men in their 40's are being diagnosed with prostate cancer. Most of the time there are no symptoms.
The men that been diagnosed need to get more vocal to bring attention to a very ugly disease... Like women have with breast cancer.
Love
Dee~~~~~
Dee,
Yes, total recovery does take a very long time. Hopefully, one of these days, they'll figure out a way to shorten that time.
And you're right, of course - there's really no reason not to have the test done, since it's just a simple blood test.
Love,
Tex
Yes, total recovery does take a very long time. Hopefully, one of these days, they'll figure out a way to shorten that time.
And you're right, of course - there's really no reason not to have the test done, since it's just a simple blood test.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Does Hypothyroidism run in families?? My Sister has this plus MS, parkinsons osteo and rhuemitoid arthritis. And she has Colitis as did my Mother and grandmother, All the women have hiatle hernias. This is weird stuff. Love Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
Oma,
Yes, hypothyroidism tends to run in families.
Here's a reference on that, if you want to see one:
http://www.endo-society.org/news/press/ ... 908182.cfm
Love,
Tex
Yes, hypothyroidism tends to run in families.
Here's a reference on that, if you want to see one:
http://www.endo-society.org/news/press/ ... 908182.cfm
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Hi there,
Sorry to hear about all the new problems, Janet, but your thread certainly bares out our understanding of the relationship between these diseases in terms of co-occurrence, doesn't it?
As you may recall, I had to have my thyroid out just months before the M.C. was discovered, and about the time I was ready to start the gf diet in earnest, was diagnosed with arthritis in both feet. I'd had problems with plantar fasciitis for quite some time, among many others.
Guess I caught some of the other things early enough with diet to avoid some further disease processes as most of my painful stuff is gone, and I'm certainly lots more limber than I ever thought I'd be. However, it just may be that we are so genetically predisposed to these other conditions that something else can still trigger their autoimmune processes, resulting in illness regardless of what we do. Still, just knowing that all my bodily symptoms got so much better makes me think that I'm one of the ones who will avoid some pretty nasty other diseases and/or conditions with the diet I have no intention of ever aborting.
I sure do look forward to the time when there'll be lots more research documented and into the hands of rhematologists, GI's, neuro's, and docs in general as I think lots of things could be prevented in many if not most people with autoimmune tendencies.
Wish I could hang around with you folks more. It's nice that we have a notification system to alert us to threads of interest having new responses. Otherwise, I'd not have known that Janet dropped in to tell us what's going on with her.
Take care, everyone!
Yours, Luce
Sorry to hear about all the new problems, Janet, but your thread certainly bares out our understanding of the relationship between these diseases in terms of co-occurrence, doesn't it?
As you may recall, I had to have my thyroid out just months before the M.C. was discovered, and about the time I was ready to start the gf diet in earnest, was diagnosed with arthritis in both feet. I'd had problems with plantar fasciitis for quite some time, among many others.
Guess I caught some of the other things early enough with diet to avoid some further disease processes as most of my painful stuff is gone, and I'm certainly lots more limber than I ever thought I'd be. However, it just may be that we are so genetically predisposed to these other conditions that something else can still trigger their autoimmune processes, resulting in illness regardless of what we do. Still, just knowing that all my bodily symptoms got so much better makes me think that I'm one of the ones who will avoid some pretty nasty other diseases and/or conditions with the diet I have no intention of ever aborting.
I sure do look forward to the time when there'll be lots more research documented and into the hands of rhematologists, GI's, neuro's, and docs in general as I think lots of things could be prevented in many if not most people with autoimmune tendencies.
Wish I could hang around with you folks more. It's nice that we have a notification system to alert us to threads of interest having new responses. Otherwise, I'd not have known that Janet dropped in to tell us what's going on with her.
Take care, everyone!
Yours, Luce