Author Topic: Anyone ever heard of Arachnoiditis with Sjogren's?  (Read 4274 times)

mompain

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Anyone ever heard of Arachnoiditis with Sjogren's?
« on: September 03, 2008, 11:30:26 AM »
Hello all!  I haven't been on here in a while because I have been having a rough time.  My pain levels have been through the roof and I have been to my various doctors to try and get some relief.  They have given me medication for the breakthrough pain and it is helping with the pain but making me sleep.  I wish there were a way to be able to take it and still be able to function.  

One of my doctors has mentioned something to me that I had never heard of before and I wanted to know if and I wondered if any of you have.  I am sure many of you know through my post that I have terrible Cervical Disk pain from 2 surgeries.  I also have had LOTS of epidurals, facet joint injections, and Radio Frequency done on my neck.  Arachnoiditis (Sounds like a something to do with a spider to me) is where your arachnoid around your spinal cord gets inflamed from either the surgeries or these eipdurals.  It then starts to sort of glue the nerves in there together to cause Adhesive Arachnoiditis. There is no cure for this, it often (but not always) will show up on MRI with contrast, and you just basically have to learn to deal with the pain but there are some really serious and often, lifethreatening things that happen because of it.

You may be wondering why I am posting this on here.  Since finding out that I might have this, I have found out that many of the symptoms of Sjogren's are hand in hand with this rare disease.  As a matter of fact, many people with this disease have Sjogren's and other autoimmune diseases when they have Arachnoiditis.  I don't know why or how that goes together, but I thought it was very interesting.

Please do not think that I am an expert in this by any means, but I did want to mention it because of the fact that it tends to happen to Sjogren's patients.  I have not officially been diagnosed yet and it if often hard to get someone to diagnose you because it is a disease that is caused by doctor error in many cases.  There aren't many doctors out there who like to diagnose something that one of their doctor colleagues could have caused.  

If any of you are in lower back or cervical pain and your doctor has told you it is failed surgery syndrome, please check this out.  You may have Arachnoiditis instead of that. Sjogren's tends to go hand in hand with it.

If you have heard of this or been diagnosed with this, I would love to hear about it.  If anyone thinks you may have it, look it up on the internet and let us all talk about what you think and how Sjogren's goes with it.

Take care and talk soon.

Linda196

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Re: Anyone ever heard of Arachnoiditis with Sjogren's?
« Reply #1 on: September 03, 2008, 01:45:43 PM »
I have seen this condition in a few patients, one following a blood patch for a CSF leak, and two others following sub-arachnoid hemorrhages. In each case, pain management was the biggest problem, and one of them was involved in a trial using Thalidomide (yes, that notorious drug from the 50s).

It is considered an inflammatory process, and since exposure to blood from any source (injury, surgery, injected as a patch) seems to be one of the biggest culprits, that means in those cases the inflammation is triggered by the patients own blood so does that count as autoimmune? Unfortunately, steroid injections (usually the best approach to inflammation) has been known to actually cause this, so isn't recommended as a treatment.

I wish you luck with treating this, maybe a good pain management clinic is the place to start.
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Seeker

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Re: Anyone ever heard of Arachnoiditis with Sjogren's?
« Reply #2 on: September 03, 2008, 02:19:41 PM »
mompain, sorry to hear after all your other troubles you suffer from Arachnoiditis.  I have not heard of it being associated with SjS.  From what I understand it is caused by certain medical procedures.  Here is a web site you should check out:

www.cofwa.org/Arachnoiditis.htm

I hope you get a handle on this and start feeling better soon.

Seeker
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Pooh

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Re: Anyone ever heard of Arachnoiditis with Sjogren's?
« Reply #3 on: September 03, 2008, 10:31:25 PM »
Hi Mompain,
I've been wondering where you were.  So sorry to hear you have been in so much pain. 

I must admit, my first thought when I saw Arachnoiditis that you had been stung by a nasty spider. :D

I've never heard of this but I will certainly look into it as my daughter has had numerous spinal injections and two surgeries.  She is in so much pain constantly that it breaks my heart to watch her try to cope with it. 

I hope you find relief soon. 

Hugs, Pooh

pudmott

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Re: Anyone ever heard of Arachnoiditis with Sjogren's?
« Reply #4 on: September 04, 2008, 07:50:16 AM »
HI MOMPAIN
i wish for your sake you did have an inflamed spider and could knock it off with a good insect repellant, however i know its not and is much more serious. As someone else mentioned, maybe a good chronic pain clinic might be a good place to look at to help maage your pain effectively.

goodluck. i wish u the best

pud

mompain

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Re: Anyone ever heard of Arachnoiditis with Sjogren's?
« Reply #5 on: September 04, 2008, 09:33:49 AM »
Thanks to everyone for your precious comments.  Someone sent me the article below this morning and I felt that it actually goes right along with what I have been told about Arachnoiditis and autoimmune diseases going together.

Here it is:
****I attended a dinner two nights ago for the Immune Deficiency Foundation.  The doctor who spoke titled his speech, "The Immune System: Primary Immune Deficiency and Autoimmune Disease."  The physician was a practicing rheumatologist AND immunologist (the best of both worlds).  I found his talk very interesting.  He discussed the fact that all autoimmune disease stems from an underlying immune system problem (unfortunately they are still learning much about the immune system, so pinpointing that problem is not always possible right now) However he did suggest that patients with multiple autoimmune diseases or patients with one autoimmune disease and a tendency toward getting sick should always be tested for a primary immune deficiency.  He stated that the possibility of a PIDD in autoimmune disease patients is very high.  I thought the talk was very interesting expecially since many in this group have been diagnosed with both a PIDD and autoimmune disease. ****

This really makes one think about what is the reason behind our autoimmune diseases. 

What do all of you think????


Katybarstool

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Re: Anyone ever heard of Arachnoiditis with Sjogren's?
« Reply #6 on: September 04, 2008, 12:39:59 PM »
Hi

Please can you tell me what PIDD is?

Thanks
Kathyx

mompain

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Re: Anyone ever heard of Arachnoiditis with Sjogren's?
« Reply #7 on: September 06, 2008, 09:43:07 PM »
Kathyx,
PIDD is Primary Immune Deficiency Disease.  Sorry about that.


If all of you would, please click on this link and read the parts about Sjogren's.  I have copied a little part of one of them here.  What do you all think about it after you have looked at this?

http://www.btinternet.com/~thinkback/arach.htm 

The paragraph below is from Appendix I. 

 Vasculitic neuropathies are seen in Rheumatoid Arthritis, Sjogren's, Behcet's syndrome and Systemic Lupus Erythomatosus. The commonest disorder that seems to be diagnosed concurrently with arachnoiditis is Sjogren's syndrome. Various authors describe neurological aspects of this disorder, although there has been no direct reference to a link with arachnoiditis, however, there are similar clinical features between the two conditions (lxxii). Kumazawa et al attribute the chronic sensory neuropathy occasionally seen in Sjogren's to dorsal root ganglionitis with T-cell invasion. (lxxiii). They also describe autonomic dysfunction in Sjogren's syndrome. Nitsche et al (lxxiv) suggest that neurological features are seen frequently in overlap syndrome (a clinical picture of multiple coexistent autoimmune disorders, also known as Mixed Connective Tissue Disease MCTD), and that occasionally a demyelinating type picture of central nervous system involvement may be seen. It is possible that arachnoiditis is part of the clinical spectrum of MCTD. Tesavibul (lxxv) suggests that there are subsets of Multiple Autoimmune Syndrome (MAS) and of particular interest is his proposed Type 2, which includes Sjogren's syndrome, Rheumatoid arthritis, Primary Biliary Cirrhosis, Scleroderma and Autoimmune thyroid disease. (There are isolated cases of each of these disorders seen in patients with arachnoiditis). There is also a recognised, albeit rare, association between the chronic inflammatory condition, sarcoidosis, and arachnoiditis. (lxxxvi) Sarcoidosis is a multisystem, chronic granulomatous (a specific type of chronic inflammation) disorder, which involves an abnormal immune response. The exact source of this reaction is as yet unknown. A study by Sharma (lxxxvii) showed 24% of neurosarcoidosis cases had meningeal involvement. 

I just wanted to know what you all think about this.  It is a little deep, but it has some interesting points about Sjogren's and I think it fits a lot of people on here.