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Old 03-18-2015, 03:13 PM
JoannaP79 JoannaP79 is offline
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Join Date: Feb 2015
Location: South England
Posts: 246
8 yr Member
JoannaP79 JoannaP79 is offline
Member
 
Join Date: Feb 2015
Location: South England
Posts: 246
8 yr Member
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Quote:
Originally Posted by xrox View Post
Please try and diagnose me. Seems the doctors and specialists can’t. Below is my background and main symptoms that I need diagnosed.

Background:

I have had Ankylosing Spondylitis my hole adult life that has caused fusion of my central spine T6-T12 and SI joint bilaterally. This was a painless process until this year when intractable pain hit. I was put on Celebrex/Pantaprozole and Humira. Note: Humira is linked to nerve damage and MS like symptoms. Stopped Humira 2 months ago and symptoms are not going away.

Blood tested for everything and shows normal vitamin levels (except D) and normal glucose, and normal Celiac.

MRI has shown I have a 3mm herniation in my disc at C5-C6 as well as a fairly narrow spinal canal at that area. No cord compression on MRI though.

Nerve conduction studies show minor carpal tunnel and tarsal tunnel bilaterally. This all started suddenly

It is almost like all of my nerves have become inflamed or irritated. Is there a systemic disease that causes tunnel symptoms in both hands and feet? Or causes widespread nerve damage/inflammation?

Current Main Neurological Symptoms

-Paresthesia in both hand and both feet that is on and off and ranges from mild to severely painful burning sensation.
-Severe burning sensation in both wrists and both ankles that comes and goes.
-Tinel sign all over both arms and legs (at wrist, elbow, bicep, forearm, ankle, knee….etc)
-Sudden severe Urinary urgency despite negative urine culture. At its worst it was 24Hrs a day and I did not sleep for a solid week. Was going to the bathroom 100+ times. Problem has subsided and is quite minor now.
-Bladder symptoms and sensory symptoms would alternate like a switch.
-No weaknesses anywhere

Current Pain Symptoms

-Severe pain in thoracic spine that is always there
-Pain in neck with minor stiffness and loss of ROM.
-Pain in lower spine around L5
Xrox you are the first person I have seen here with AS too. I have AS and have just been diagnosed with small fibre neuropathy as well. I dont take any disease modifying drugs though. I have seen numerous neuros rheumatologists and am part of an AS support group. I havent met anyone else or any neuro or rheumy who links AS to body wide neuropathy. AS can however cause nerve damage due to damage in the spine and wherever nerve connections in the spine go - as you prob know. However, I have AS and I have small fibre neuropathy which causes burning, stinging, tingling, all horrible stuff like that. For me, Im lookijng at another autoimmune disease as the cause, seeing as I already have one, eg sjorgens is something that many with AS go on to develop I have heard from my current AS support group. The big thing for me is humira. I have spoken to so many doctors about this and the contraindications are nueropathy because there have been connections to neuropathy. But again, I'm not on humira and I have AS and now neuropathy so its a tough one. Again, I cant diagnose you with that as I am no expert but it is linked to this from everything I have read.

I hope you are doing ok AS wise without the humira? I had banked my everything on getting this and now I have bl**dy neuropathy so am out!
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