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

Hi and welcome
Just to explain....no one here can diagnose you as these forums are made up primarily of other patients. So where others can possibly offer insight etc based on their own experiences or information they have gathered, as stated at the bottom of all our pages
I just wanted to be sure you did not think that we have professionals replying here.

Welcome to NeuroTalk...

I'd suggest you evaluate your B12 with your doctor. Get tested and you should be above 400pg/ml. Long term use of drugs for
GERD, which reduce stomach acid, lower B12 quite a bit in people using them long term. Labs still report low levels below 400pg/ml as "normal", and neurological damage can result at those lower levels. Treatment is OTC and easy, inexpensive with active methylcobalamin which is activated B12.

So that is one thing that should be done ASAP...if you are low you can develop damage to the spinal cord, which may not reverse if long term.

Sorry about that. I am looking for ideas on what may be wrong.

B12 has been checked at 512.

Any idea on what could cause bilateral carpal tunnel and tarsal tunnel at the same time as well as bladder dysfunction?

Any systemic diseases linked ot carpal tunnel?

Welcome xrox.

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!

Bilateral carpal tunnel and tarsal tunnel can be a sign of a hereditary neuropathy. Charcot Marie Tooth (CMT) causes both large and small fiber neuropathy as it advances, particularly the axonal or type 2 variants. It took my podiatrist to put my numb feet and ankles together with an old diagnosis of bilateral carpal tunnel and send me to a neurologist who did an EMG/NCS on both arms and legs and sent me for further testing and a skin biopsy at John Hopkins.

Does anyone in your family have neuropathy symptoms? It can be quite severe at a young age or very mild in late middle age and be the same condition.

JoanneP79,

I was pain free from AS my entire life despite the ongoing fusion. I'm 41 now and they found my AS by accident in 2008 when I had a chest X-ray for pneumonia and saw fusion. I did not feel any pain until 2014. At that point they put me on Humira. Worked 100% for three months and then the back pain and tingling/numbness/burning all started at once. Stopped Humira and I am wanting to find out what is causing the neuropathy so I can decided if I want to go back on biologics or the new drugs coming out this year.

Sorry to hear you also have multiple issues. Does your neuropathy come and go and is it sometimes positional (sitting or bending brings it on?).

Susanne,

Thanks for the suggestion. I will mention it to my neurologist. I don't have any family history though. Have you been able to get any relief?

Hi Xrox, wow, I cant believe tha you felt nothing, amazing. The pain and restriction I felt due to AS was beyond words when it came on. The pain was bad so would take really strong anti inflammatories and pain killers the lot. I only have minor degeneration at this point (14 years later) despite all that pain, its so strange how it works. Do have other full body symptoms such sa uveitis, stomach probs, mild psoriasis. It has kicked into high gear now though. I find that horrible that you cant feel things happening.
When you talk about the new drugs do you mean the IL-17 inhibitors? I have read a great deal about this and am hopeful. I am not in your position but I have read alot saying you should keep away from humira when you have neuropathic problems. Your neuropathy only came on during humira. Have they discussed alternatives such as the older disease modifying drugs such as sulfasalazine, steroids. I know they arent ideal and they arent humira.
If this new drug IL-17 is going to be accessible soon then could you hold out? It depends how aggressive it is for you I guess.
I have problems when I sit down as my tailbone hurts loads. thats where AS all started for me. The neuropathic issues are there now all the time regardless so got no idea whats going on for me. The neuropathy feels very seperate to AS and rheumatic complications for me. I believe it is most definately a second lovely autoimmune disease at fault.
I just read an artcle now when looking on sjorgens syndrome and that article tsalked about carpel tunnel and autoimmune diseases. Basically, you have one autoimmune so having another is highly possible. There are a number related to neuropathy from what I have read. Key one that keeps coming up is sjorgens but apparently there are loads.
I havent helped answer your question but I can at least relate a bit to some things!

Because my fusion is in the thoracic I never felt any loss of range of motion. I have a BASMI score of 1 of less despite the fusion. Both my neck and lumbar spine have no signs of AS yet.

I am considering the following as my cause of neuropathy

Spinal cord edema/myelomalacia
Toxic - Humira damage
Sjorgens - I don't have dryness anywhere though
Lyme
Lupus
Vasculitis
CFS
CMT
Anxiety (generalized)

My issues still come and go but the intensity has gotten worse over time.