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-   -   What is wrong with me? (https://www.neurotalk.org/peripheral-neuropathy/217574-wrong.html)

xrox 03-19-2015 10:59 AM

Quote:

Originally Posted by UTGrad (Post 1130318)
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.

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.

xrox 03-19-2015 11:16 AM

Quote:

Originally Posted by JoannaP79 (Post 1130296)
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.

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

anon050715 03-19-2015 11:30 AM

What is wrong with me?
 
Quote:

Originally Posted by xrox (Post 1130347)
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.


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.

JoannaP79 03-19-2015 01:09 PM

Quote:

Originally Posted by xrox (Post 1130350)
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

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

mrsD 03-19-2015 01:27 PM

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!

JoannaP79 03-19-2015 01:40 PM

Quote:

Originally Posted by mrsD (Post 1130378)
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.

xrox 03-19-2015 05:11 PM

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?

glenntaj 03-20-2015 05:01 AM

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.


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