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#517789 - 11/10/17 01:34 AM connecting tissue disorder
jay_bharat Offline
Commanding_AS_Kicker

Registered: 12/08/08
Posts: 667
Loc: INDIA, Tamil Nadu
Any idea about connecting tissue disorder resembling AS symptoms, especially one giving mobility problem. Kindly mention the specific name of the disease.

Thanks.

Jay

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#517794 - 11/10/17 06:12 PM Re: connecting tissue disorder [Re: jay_bharat]
Robin_H Offline
Apprentice_AS_Kicker

Registered: 09/13/15
Posts: 87
Loc: Hubei, China
I have the impression that AS is a connective tissue disorder!
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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#517796 - 11/10/17 11:40 PM Re: connecting tissue disorder [Re: Robin_H]
jay_bharat Offline
Commanding_AS_Kicker

Registered: 12/08/08
Posts: 667
Loc: INDIA, Tamil Nadu
Thank you.

I consulted an ortho two days back, since my MRI mentions DDD, straightening of spine and disc rupture at L5-S1. None of the 6 MRIs I had over 14 years showed sacroilitis. He went thro all MRI, Bone scan, X ray, serum inflammatory marker reports, EMG, Nerve conduction test and Doppler test for legs. He examined clinically. I have not felt pain during examination. Then he mentioned this may be connecting tissue disorder. When I asked him to name the disease, he was not clear. May be a sort of auto immune issue related to muscle. This type is very rare in our country. Suggested to consult rheumy, who ruled out AS for me. I would like know the disease name. My main issue is inability to walk and climb stairs.

I will discuss with my rhuemy, who ruled out AS, on next appointment.

Jay

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#517799 - 11/11/17 06:43 AM Re: connecting tissue disorder [Re: jay_bharat]
Robin_H Offline
Apprentice_AS_Kicker

Registered: 09/13/15
Posts: 87
Loc: Hubei, China
Hello Jay:

I am at a loss like many others regarding your legs. I haven't been active enough on this BBS to be reasonably familiar with your history and symptoms. Do you have a generalist or some other kind of doctor that coordinates all your specialists so that at least one person has the "big picture?"

I've heard of an immune disorder that interferes with muscle functioning. The muscles do not get damaged but they can't respond to nerve impulses for a sustained time because the immune system interferes with signal transmission. So in that case the nerves and muscles are fine, there is just extra molecules not allowing the muscle to sustain contraction messages.

I wish you well!
Kevin
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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#517809 - 11/11/17 10:16 PM Re: connecting tissue disorder [Re: Robin_H]
jay_bharat Offline
Commanding_AS_Kicker

Registered: 12/08/08
Posts: 667
Loc: INDIA, Tamil Nadu
Hi Kevin,

Thanks for info.

Quote:
Do you have a generalist or some other kind of doctor that coordinates all your specialists so that at least one person has the "big picture?"


This is done normally if a patient is admitted in a hospital. Otherwise, it is left to the individual's efforts.

Jay

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#517823 - 11/16/17 12:32 AM Re: connecting tissue disorder [Re: jay_bharat]
Janclebro Offline
New_Member

Registered: 09/26/16
Posts: 14
Loc: Cape Town, South Africa
Hi Jay, there is an autoimmune condition called mixed connective tissue disease. This apparently has features of several diseases. Maybe this is what your doctor was referring to?
_________________________
Ankylosing Spondylitis, Sjögrens Syndrome and Fibromyalgia. First symptoms 1967; diagnosis 2016. Previously took Celebrex, Methotrexate, Trepiline, Prednisone,(at times Tramadol, Syndol or Panado). Side effects during the course of drugs were horrific, seemed to trigger a flare, and now have symptoms far worse than before. AS kept reasonably under control with NSD, fibro reduced by keeping off all yeast and sugar and very limited fruit; still battling with how to control the Sjögrens!

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#517824 - 11/16/17 10:44 PM Re: connecting tissue disorder [Re: Janclebro]
jay_bharat Offline
Commanding_AS_Kicker

Registered: 12/08/08
Posts: 667
Loc: INDIA, Tamil Nadu
Hi Janclebro,

Thank you. Trying to get more info.

Jay

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#517825 - 11/17/17 04:12 AM Re: connecting tissue disorder [Re: Janclebro]
jay_bharat Offline
Commanding_AS_Kicker

Registered: 12/08/08
Posts: 667
Loc: INDIA, Tamil Nadu
Hi Janclebro,

Just now noticed your signature
Quote:
Ankylosing Spondylitis, Sjögrens Syndrome and Fibromyalgia. First symptoms 1967; diagnosis 2016

Appears took almost 50 years to diagnose?. Can you brief your medical history such as the symptoms you got, tests undertaken, treatment taken etc., Really curious.

Jay


Edited by jay_bharat (11/17/17 04:15 AM)

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