What is wrong with me?
 

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. :Tip-Hat:

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. :hug:
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.

Can Generalized Anxiety cause neuropathy? I'm curious cause I've had anxiety for years.

Anxiety can cause paresthesias... which feel similar to the sensations of real PN. PN is a disease process in the nervous system, due to damage (vaccines, drugs, viruses, toxins, nutrient deficiency, genetic errors, diabetes, hypothyroid issues, autoimmune attacks, etc)

Paresthesias often come and go and can be dependent on hyperventilation or poor breathing habits. They often reflect a temporary change in blood pH, from the changes in carbon dioxide levels. Anxiety can also raise blood pressure which then reduces blood flow to the periphery in some people. Paresthesias may reflect deranged calcium metabolism (low D) and or poor magnesium levels. They can also come when blood sugars dip low. Low blood sugars can cause muscle twitching.

Boom...thank you!

I am considering generalized anxiety because both sleep or a lorazepam seem to make the paresthesia and burning better. It is probably that the anxiety is making the symptoms worse but there is still an underlying systemic issue.

Joanna,

Is there anything that gives you relief from the SFN? Have you tried a TENS unit or IVIG therapy?

Cheers

I don't believe for one minute anxiety caused this for you. It may well exacerbate it though.
Im taking gabapentin, that takes the edge off a bit.
I'm seeing neuro today, I am asking to be considered for ivig and will pursue this until they agree.
Other than that swimming gives me temp relief - helps the AS too.
So its only symptom management really. Ive got a tens but havent tried that yet.
I also wear certain clothes now so ones light on the skin. Fashion has gone right out the window!
I will update you on meeting with the neuro today!

I don't have dry mouth or eyes either. That can be absent with sjorgens I believe. It is so much more than the dry mouth I believe.
Are you in the UK BTW? Just thinking about NHS vs I surance issues when accessing ivig.

Also chronic use of benzodiazepine drugs like Lorazepam, work in the short term, but the dependency on them creates MORE symptoms in the long term. It becomes a vicious cycle that is very difficult to break.

IVIG is only indicated for people with autoimmune disease. It is not only very expensive but has potential side effects including stroke and heart attacks.

Xrox, when you talk about new drugs for AS, do you mean the IL17 inhibitors? I just want to know what you ha e been told in terms of availability, how long you may have to wait, whether you may be eligible. Can you tell how desperate I'm sounding!!? :-)Give me the drugs!! :-)

THIS^^^

Benzos are highly addictive. I've been sober from alcohol for a few years but I went to rehab to get dry. I saw several people there kicking a nasty benzo habit that started with a prescription from the doc. Withdrawals from benzos can be life threatening if taken long enough in high doses.

Yes, the secukinumab drug. Not sure about availability. Is your AS causing more issues than the SFN? I wonder if the TENS unit could help with your AS pain?

I think this may be contributing to my problem. When my bladder issues hit I had to go on Lorazepam for 5 weeks (0.5mg/day) to let me sleep at night. Bladder issues have nearly gone away and I stopped cold turkey on the drug.At the same time I had a scary MRI report on my neck that exploded my anxiety.

At the exact same time my tingling and numbness jumped up 90% and was nearly constant.

So either the anxiety or the withdrawal of lorazepam has dramatically increased my symptoms.

I have had anxiety issues my whole life and it can be very powerful and cause severe paresthesia.

I am in Canada. I am just wondering but was your SFN diagnosed via biopsy? Did they find anything unusual on a full neurological exam?

I have heard from a few ASers that have similar SFN symptoms that once you get the AS inflammation under control your SFN symptoms also improve.

Also, there is something called positional canal stenosis and this can be missed on an MRI. I have this for sure as my MRI looks identical to the ones featured in the following article. Considering my first tingling and numbness occured when I was changing a light bulb with my head tilted backward I would suspect it even more.

http://www.positionalcordcompression...treatment.html

What is wrong with me?
 

Anxiety has been a part of my life for years and I've had many unexplained physical symptoms but now with this neuropathy showing up I wonder if there's an underlying undiagnosed etiology.

I will say coming off benzos will create rebound anxiety. Try to do lots of cardio if possible to burn off the excess adrenaline.

Hi x rox - right I have just seen my neurologist so will update you on that:

Yes I did have a skin biopsy to diagnose SFN. If you supect SFN I recommend you get it. No one has taken me seriously at all and without a diagnosis its easy to be put in the anxiety corner. I recommend you dont suggest anxiety to any of your health professionals as you are at risk of being put in anxiety corner. It isnt anxiety!

My neurologist has said that humira is connected (probably only very small amounts) to demylinating neuropathies. SFN is not that. Demylinating is in relation to brain and spinal cord apparently.

I have had brain scans and spine and neck scans the lot. There is nothing there to show lesions or demylination. I have slight degeneration on L4 and 5 but they are confident this has nothing to do with the neuropathy.

Ive just spoken about IVIG. He said I will have to go to a panel for approval and they will want firm evidence that it mught be useful in my case. He is seeking advice from the professor who took my skin biopsy.

I will have alook at your link, Thank you

A little neurology lesson:
 

There are 4 types of afferent neurons in the periphery ...and 3
of them are myelinated to some extent.

Here is a link with illustrations showing this:
http://faculty.washington.edu/chudler/cv.html

So demyelinating factors can affect the axons of these 3 sensory fibers.

Doctors don't explain this to patients, and sometimes I wonder if they even know the distinctions themselves!

Thank you Mrs D. Its all so confusing. I got the impression my neuro didnt neccessarily know everything about it.

Another odd symptom that started the same time that my neuro symptoms did was my inability to give blood. When the nurse puts a needle in me the vein visibly constricts. Blood will gush into the vial for about 1-2 seconds and then abruptly stop. They usually have to stick me 5-6 times to take blood.

Never had a problem before the neuro symptoms. Related? Any known cause for this?

Also, I think the fact that my severe bladder issues switch on when my tingling and numbness switch off, and vice versa, should be a solid clue for a neurologist?

Once CAN have--
 

--a demyelinating peripheral neuropathy, in which the primary deterioration is to the myelin sheathing that covers the larger nerves that control motor functions and the sensory modalities of vibration, mechanical touch, and position sense.

There is myelin sheathing in the brain and spinal cord (central nervous system) and that too can deteriorate in various conditions--notably multiple sclerosis--but the structure of that myelin is somewhat different from that of the myelin covering peripheral nerves, and apparently is attacked by different antibodies in autoimmune situations.

Small-fiber neuropathy results from attack on the much thinner, lightly myelinated and unmyelinated nerve fibers that subsume the sensations of pain and temperature, and also many autonomic functions. This neuropathy is by definition predominantly axonal--that is, caused by damage to the nerve fiber itself.