Please give me your opinions - help needed!

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Red_34
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   Posted 4/23/2008 7:03 AM (GMT -7)   
This past year has been very hard on me. I am going to ask for some opinions about what you THINK could be wrong because my doctors are stumped and maybe one of you out there have gone thru the exact same thing as me and now have a diagnosis.  All I know is that I'm getting very frustrated!
 
So here is my history:
I had back pains starting in my late teens.  I went to a couple docs but they could never find anything wrong with me.  It wasn't too bothersome so I didn't persue the matter.  Fast forward about 25 years later.  Last year, I started getting more extreme back pain.  It started in my lower back/hip area.  But mostly when I would do alot of bending, like cleaning the toilet floor area.  My back would get super tight and when I laid down, I would get sharp shooting pains thru the muscles and what felt like in my spine as well.  Well as the year progressed, those types of "spasms" became worse.  So then I seen my PCP - she sent me to p/t and put me on Flexeril/Skelaxin/Neurontin.  The p/t only worked a little.  Eventually I stopped p/t.  So then last November, the pain became unbearable again so I seen my PCP again.  This time she sent me to a pain managment doctor who said I have sacroiliitis. 
 
I had xrays of my hips and lower spine, an MRI with and without contrast of my hips/lower spine and head.  These showed no abnormalities.  So the pain doc gave me epidural injections.  The first one worked wonders but 2 months later I had to go in for another because the pain came back and it didn't work so well.  So then my PCP referred me out to a rheumy doc.  He took some bloodwork but according to him, everything came out good.  My pain doc then sent me for an EMG which revealed that I have spinal stenosis.
 
My pain doc is very confused because he can't find the source of my pain and I am getting frustrated!
 
Here is a summary of my symptoms so tell me if any of these sound like something you are suffering from, especially if they were in your early years of your condition(s).
 
Upper thoracic pain that wraps around to my ribs
Lumbar pain (sharp shooting pain to low dull cramping) upon standing, walking or bending
Leg weakness and pain that shoots down the buttocks and legs - it sometimes skips the legs all together and goes straight to my feet.
SI joint pain, especially bad near the tailbone
Frequent leg cramps and horrible toe twisting foot cramps
 
Now mind you, I have had numerous tests, xrays, MRI's etc and NOTHING has shown up as an abnormality.  What WOULD you suggest the doc to do next??  I am seeing my pain doc today so if he doesn't bring anything up, maybe I can make suggestions to him.
 
I know this is long so thank you so much for taking the time to read this!


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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babyplace
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Date Joined May 2007
Total Posts : 499
   Posted 4/23/2008 10:11 AM (GMT -7)   
Hey Sherry,
I wish i knew of something to help you!  Just wanted to pop in and say that I hope your doc has some new ideas today. I have RA, none of thespine issues that you are experiencing, but I will be praying that they come up with something.
Take care,
jody

sjkly
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   Posted 4/23/2008 2:12 PM (GMT -7)   
Red, I am sorry you are going through this. I don't know what it could be. If you had not had all of those tests done I would have suspected AS or any of the things you mentioned or even something as simple as scoliosis or uneven hips but those would probably have been noticed by your docs. I guess a good physiologist and a good rhuemy working together-so perhaps a university hospital would be my next move.

Sj

Red_34
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Date Joined Apr 2004
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   Posted 4/23/2008 2:17 PM (GMT -7)   
Thanks - well I ended up going back to my pain doc today and he doesn't know what else to do. He prescribed me Ultram and I am seeing his associate to try accupuntcure or some sort of injections - forgot the name but it has sugar (glucose) in it - I think that is what he said. I'm thinking my next stop will have to be a neurologist. But I was hoping that someone here had the same thing that I am going thru only to have something else show up further down the road.
 @--->--SHERRY--<---@
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Ducky
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   Posted 4/23/2008 5:53 PM (GMT -7)   

Hey Sherry.. Have you tried getting a 2nd opinion from a different rheumy?  The reason why I say that, is 'cause your symptoms sound a lot like AS..

http://www.spondylitis.org/about/as_sym.aspx

http://www.mayoclinic.com/health/ankylosing-spondylitis/DS00483/DSECTION=1

Do you know in your bloodwork if it came back as HLA-B27 positive or negative?  I'm so sorry you're in so much pain... sad


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Red_34
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   Posted 4/24/2008 4:20 AM (GMT -7)   
Hi Ducky! :) I don't know if the rheumy doc checked for the HLA-B27. That appt was basically an appt from hades! I will NOT be going back to him anyway. Ugh! I;m still quite ticked just thinking about it! LOL But yes, my primary has brought it up about possible AS as well as the pain doc. But nothing is showing up on the tests yet. I think though that soon I will be getting another opinion from a different rheumy.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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CaMama
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   Posted 4/24/2008 12:07 PM (GMT -7)   
Hi Sherry,
 
I don't really have answers, but possibly some suggestions - have you seen a podietrist? Get some orthodics in your shoes to help your walk to help avoid making these problems worse. May also help your hips. Stretching the calves and legs (back as well? I don't know if it's AS) may help the pain from shooting down your legs.
 
Also, did you say you saw a neurologist? They stick those needles in you and send pulses through your body to see if there is an issue.
 
I don't have AS, so i don't knwo what is good or bad for it (assuming you have it) but would it be bad to see what a chiropractor woudl say?
 
**
 


Ides
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Date Joined Nov 2003
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   Posted 4/24/2008 4:51 PM (GMT -7)   
Okay, Sherry...I read your request last night but was on my laptop and have not yet figured out how to typw without jumping the cursor all over the place. [My learning curve is definitely technologically challenged - LOL!]

So I need more info -- but my questions will also help to see if you "fit" into some of the criteria for different problems. The fact that you have UC makes you much more likely to have one of the spondyloarthropic problems.

1) When you said all your x-rays "showed no abnormalities" did that mean you have NO degenerative changes in the spine at all? I take it you are in your late 30s or early 40s. I find it amazing that you have no degenerative changes. Most people will have some mild changes by your age.

2) Get a copy of ALL the lab work the rheumy had done. Check if you were tested for the HLA-B27 antigen. If you were, was it negative or positive?

3) Has ANYONE measured your chest expansion? If so did it fall in the acceptable range for your age age?

4) Is your back stiff upon arising? If so, for how long? Does your lower back and SI pain worsen or improve with rest? movement? Are you awakened by the pain at night?

5) How is you medical speak? I would like you to view a talk/show by one of the top docs in the spondyloarthropathy field. It is now know that there is a period of years before xray and MRI will show changes brought on by ankylosing spondylitis. Please look at this: http://www.spondylitis.org/physician_resources/cedars_cme/cme3.html
There are a couple slides in this show that list criteria for diagnosis. See how your symptoms fit into the criteria they list.

I'll check back tomorrow or the next day and see what you have to say about my nosiness ~~ LOL!
Ides


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Red_34
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Date Joined Apr 2004
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   Posted 4/24/2008 6:15 PM (GMT -7)   
LOL Ides, nosiness at this point in time is much appreciated! :) I'm going off what the doctors have to tell me. They say that my MRI and Xrays look fine and with no abnormalities - I didn't know what else to ask at the time. And yes, late 30's (38 to be exact). As for the bloodwork, I am not quite sure which one the rheumy ran so I am going to call him tomorrow and see which ones he did. Didn't have time to do that today unfortunately. No one has ever measured my chest expansion - how is that significant? And yes, my back is sore and stiff when I get out of bed until about a half hour to an hour after waking up. I have been woken up when I roll over because my back will hurt and this is even while on sleeping pills! My upper and lower back tends to stiffen (not so much pain wise) if I sit for long periods but it hurts when I'm walking or bending. But my SI joint sends sharp shooting pains into my hips if I sit for too long as well. Hmm my medicalnese is not so well! lol But I will take a look at that video when I get a chance tomorrow. Many thanks! :)

CaMama, no I haven't seen a neurologist yet. The pain doc is the one that did the EMG - the test with needles and electric jolts.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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Ides
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   Posted 4/24/2008 8:36 PM (GMT -7)   
I have time only for a quick note tonight but I'll be back tomorrow to comment on your reply, Sherry. Not sure what state you live in and the rules very state to state. Here, we patients can easily get copies of any test results from one of two places. I get the written reports of all my xrays and MRIs from the place where they are done. The only thing the imaging center needs is my signature on a form saying they are for personal use. I get copies of my blood work by asking for a copy at the office of the doctor that prescribed the tests. Again, only a signature is required. Now whenever I have blood drawn I have a copy mailed to my home - again by filling out a request at the time of the blood draw. I know in NY one can only get copies of test results from the doctor that ordered them. Check what the rules are in your state and get a copy of those xray and MRI reports ASAP. HIPPA regs state that it is your RIGHT to have a copy of your test results.

I'll be back tomorrow...
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CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Red_34
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   Posted 4/25/2008 8:59 AM (GMT -7)   
Well I got a copy of my bloodwork and no, it doesn't look like he did the HLA-B27. Looks like he did the myeloperoxidase Ab and Proteinase AB and those look normal both of them are <3 with the expected values of <6 and <3.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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Ides
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   Posted 4/25/2008 2:18 PM (GMT -7)   
Today's suggestions, thoughts, and replies....
1) Get your PCP or other friendly doc to order a HLA-B27 test.
2) Chest expansion or lack of in diagnosing spondylarthropic diseases - "The joints between the ribs and the spine and between the ribs and the breast bone (sternum) can also become painful and stiff. Stiffness of these joints can result in decreased chest expansion."
3) Your pattern of back stiffness that you describe fits with a diagnosis of spondyloarthropathy.
"Symptoms include morning stiffness lasting at least 30 minutes, improvement of symptoms with moderate physical activity, and diffuse nonspecific radiation of pain into both buttocks. Patients often experience stiffness and pain that awakens them in the early morning hours, a distinctive symptom not generally found in patients with mechanical back pain. New criteria to define inflammatory back pain have been proposed; when all features are present, they have a sensitivity of 70.3% and specificity of 81.2%. These criteria include the following:
Morning stiffness that lasts more than 30 minutes
Improvement of back pain with exercise but not rest
Nocturnal back pain during second half of the night only
Alternating buttock pain"

4)Have you ever had iritis, uveitis, or plantar fasciitis?

5) "My pain doc then sent me for an EMG which revealed that I have spinal stenosis. My pain doc is very confused because he can't find the source of my pain...." --
Some of your pain could be associated with the spinal stenosis. Am I to understand that your doctors' do not know WHERE in your spine the stenosis is occurring? The EMG should have indicated what vertebral space or root nerve is compromised. That in itself should point to where in the spine you are having a problem. Then if the problem cannot be seen on MRI or xray, further tests should be considered. I would think a referral to neurologist should have happened when the various doctors got stumped.

Made any inroads on getting copies of the radiologist's reports of your xrays and MRIs?

Have a good weekend...preferably painfree! ~~ Ides
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Red_34
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   Posted 4/25/2008 4:55 PM (GMT -7)   
Thank you so much Ides :) I called my primary today to see if she will refer me out to a different rheumy doc. So I may hear back from them on Monday. I will then request that they do the HLA-B27.

No, no eye infections lately. *knock on wood!* But in the past, I would get them - not sure which one but the primary would just prescribe me steroid drops which worked great. I assume those were from my Uc?

The doc that did the EMG said that I have some aggravation in my lower spine, but no, they couldn't pinpoint the area due to the lack of evidence on the MRI.

And a painfree weekend is probably not in the cards but one can hope! :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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Ides
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   Posted 4/25/2008 10:04 PM (GMT -7)   
" But in the past, I would get them - not sure which one but the primary would just prescribe me steroid drops which worked great. I assume those were from my Uc?"

Eye problems like iritis and uveitis are treated with steroid drops. These conditions are not infections but caused by inflammation. You need to find out the name of the eye problems you had. Eye infections are not treated with steroids! The new rheumy MUST be told of this. Many, many people with one of the spondylitis type diseases have had either iritis or uveitis.

I am glad you requested a referral to a different rheumy!!!
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CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Kate81
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Date Joined Apr 2008
Total Posts : 8
   Posted 4/26/2008 9:15 AM (GMT -7)   
It sounds like you have some of the symptoms of a Spondyloarthropathy. These auto-immune diseases can be very difficult to diagnose b/c everyone experiences things differently. I definitely recommend seeing a different Rheumy. I am on my 3rd and still not completely satisfied. It can be very frustrating. Just the fact that he or she failed to include an HLA-B27 test with your lab work makes me skeptical. Being positive or negative doesn't definitively diagnose anything, but with your symptoms, it may help steer your doctor in the direction of a proper diagnosis. I have back pain at night and stiffness in the morning. My SI and buttock pain is usually during the day if I have been up an about for more than a couple hours in a day. I am HLA-B27 positive, and my x-rays/MRIs show a lot of SI inflammation and fluid in the hips. I have never suffered from any eye trouble like Iritis...knock on wood.
 
The only thing worse than dealing with all of your pain, is the not knowing. I hope that you find a good doctor who can help you figure out what is happening with your body. Unfortunately, we often have to be advocates for our own health. The internet is an amazing tool. Good luck! 

Red_34
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Date Joined Apr 2004
Total Posts : 23416
   Posted 4/26/2008 11:52 AM (GMT -7)   
Thank you Kate. Same here, I'm super stiff and a tiny bit sore in the morning but once I get going it seems to work itself out. But as the day progresses, my back pain becomes more pronounced, especially in my SI joint. When I sit during the day, my upper back hurts but my lower and SI feels better, unless I sit too long then my SI starts to hurt. But when I stand or walk, my lower back starts hurting in addition to my SI. It seems I can't sit, lay nor stand or I end up in pain! :( And forgot to mention too that at times, my neck starts hurting as well. Like a sharp cramping kind of pain.

I am going to try to get to see a different rheumy. My options are limited because of my insurance - darn HMO's. I have to stay within my network unless I upheave the system and start fresh which I don't want to do because I have 2 doctors (my PCP and GI) who I love to death that are within my network now. So we shall see who my PCP will refer me out to this time.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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Kate81
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Date Joined Apr 2008
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   Posted 4/26/2008 1:56 PM (GMT -7)   
I know how you feel...try spending your entire day in a hand stand...that should help. J/K
I spend most nights sleeping in an upright position with my pillows set just right. I am able to sleep for longer periods of time and am a little less stiff in the mornngs. (I look like I fell asleep reading in bed...but it's intentional.) I spend more time with my pain managent physician than my Rheumy these days. I 've been willing to try anything because the pain seems to be getting worse during the days and I can't afford to have my work effected.
 
Insurance can be a nightmare, but I guess I've been fairly lucky with it so far. I live near near a university, and I was able to get in there. They have every kind of specialist under one roof and they share records, which takes some of the hassle out seeing a new doctor. When I started getting hives from the Nsaids, I went to an immunologist and he already knew all about my medical background. Since these auto-immune problems often overlap, it can be convenient. If you have any university-based helthcare avaible, I recommend it. Don't get me wrong though...I still have my share of insurance frustrations and doctors that are less than perfect.
 
The thought of starting all over with a new doctor is absolutely agonizing, but you need answers. You deserve that.
 ~Kate

Red_34
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Date Joined Apr 2004
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   Posted 4/27/2008 6:46 AM (GMT -7)   
It took me a long time to find my current PCP. She has been a godsend after going from doctor to doctor that didn't understand my UC. It was frustrating because they would prescribe me something, insist that I could take it when I knew for a fact that I couldn't. It's like they didn't believe me - I am the one that has had this horrible condition for the past 16 years, not them. So I think I should know a thing or two. So when I found this PCP, I was ecstatic because she is very flexible and listens to me. Not the books nor statistics. So I'm not willing to give her up just yet! LOL The same with my GI. I've been with him for 11 years. So I will see what my PCP says about a different rheumy. I know there has to be more then ONE in my area.

And that handstand, would you recommend I use my right, my left or both??? :0)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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u2cnbsaved
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Date Joined Apr 2008
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   Posted 4/27/2008 2:52 PM (GMT -7)   
tongue  To all with RA and its kin, Psoriatic Arthritis - which I've had since my 20's (am now going on 68 and been treated with Remicade for the past 2 yrs along with 6 Methotrexate pills weekly)
I have had wonderful success with Remicade treatments
I have the med's infused in a hospital here in Jackson, TN every 8 weeks....takes about 3 hrs. but the pain leaves almost immediately.  Seems the treatment lasts at least 7 weeks so maybe my arthritis specialist will increase the dosage soon.
 
Hope this is GREAT news for those with the pain and no idea of what treatment to receive.  First of all, seek out an Arthritis Clinic and they'll go from there....I was on Enbrel, self injected, for one yr. but then the pain returned so went on Remicade...have never been on Humira

Ides
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   Posted 5/2/2008 9:05 PM (GMT -7)   
Sherry - any updates? Got a referral yet? Obtained copies of your xray and MRI reports?
~~Ides
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Red_34
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Date Joined Apr 2004
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   Posted 5/3/2008 11:03 AM (GMT -7)   
My PCP said that I only have 2 rheumys within my network. Both of which are in the same office. I had my blood drawn for the HLA-B27 but I haven't got the results of that back yet. I haven't been able to persue my xray and MRI reports yet but I plan on working on that next week. I also just recently had an xray of my upper back. Another thing I need to call about. But as of now, I am going to start accupuncture to try and ease some of this pain. So that is where I stand as of now. More testing and no answers. :(
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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Red_34
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   Posted 5/8/2008 6:44 PM (GMT -7)   
Well the HLA-B27 was negative.........now what??? So darn frustrating I tell ya!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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Ides
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   Posted 5/13/2008 10:19 AM (GMT -7)   
one can be hla b27 negative and have spondyloarthropathy associated with your ibd. sorry typing so bad. having severe flare and have only one finger i can use
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linet
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/23/2008 2:54 AM (GMT -7)   
Hi sherry,
Well i am not an expert but i will suggest you to take a look at http://www.mamaherb.com/Treatments/List.aspx?filterByOption=SpecificConditionFamily&specificConditionId=292&id=0&sortBy=Last%20Added
i found this site during net surfing it is having some herbal treatments to cure back pain. May it will help.

Red_34
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Date Joined Apr 2004
Total Posts : 23416
   Posted 5/28/2008 8:12 AM (GMT -7)   
Thanks Linet for the link. I have tried some of those supplements and it didn't really do much for me and some of the others I can't take because of my Uc. Coconut wasn't that bad actually I think mainly because I LOVE coconut anything! :) But at the time, I wasn't having that much difficulty with my back. But who knows...maybe now it can help eh?

Well I'm still persuing the matter but now I'm taking my pains to a neurologist. See if he can see anything that the others have missed. If he suspects something rheumy in nature then I guess I will suck it up and go back to the rhuemy's office from hades but I won't be seeing the one doc I seen but his associate.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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