Author Topic: How numb can we become?  (Read 410 times)

MAT51

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How numb can we become?
« on: November 22, 2017, 09:04:10 AM »
Just been to see neurologist for expidated review. She did various tests on my body parts, gait, gaze, reflexes etc. Gave me lots of the usual guff about my extreme sensitivities, numbness being a “negative symptom” and so on. Disputed the Sjögren’s expert’s opinion that my facial numbness now including mouth - is due to Trigeminal Neuropathy.

I explained that dentist said one of my old root canals is sitting looking fragile right by my Trigeminal Nerve. She said maybe so (and she hoped action would be taken soon by dentist) but this wouldn’t explain numbness all around my eyes. She said all of this is due to Sjögren’s small fibre neuropathy and she needs to think hard and research my old CTs and MRIs - but added that numbness is numbness and it means it’s already too late to rectify. I feel like I’m wearing an invisible coating of memory foam or starting to come out of an all body anaesthetic 24/7.

So my question is - how numb is numb and how far might this go - can my entire body turn completely numb over time? She evicted me so swiftly that I didn’t manage to ask her this but she says she will contact me in person next week to decide if any further investigations are needed now. I don’t think she thinks that my central nervous system is now involved but I would like to know from anyone here what the prognosis might be so I can try and work out whether to scream inwardly or out loud at my medical team. I’m in Scotland so screaming will probably just get me locked up as the NHS here is on its knees! But I feel like screaming hard.
« Last Edit: November 22, 2017, 09:07:48 AM by MAT51 »
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Joe S.

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Re: How numb can we become?
« Reply #1 on: November 22, 2017, 02:26:32 PM »
Well, if it is trigeminal, since that nerve is on the stomach meridian, try drinking mint tea to calm it down,
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irish

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Re: How numb can we become?
« Reply #2 on: November 22, 2017, 08:04:12 PM »
I guess my thoughts are that your main problem to get addressed and taken care of is the problem with the tooth and the nerve. It may be that a lot of your issues will resolve then. Nerves are crazy to figure out. I have all these issues with my neck but have had incontinence of urine and back issues that are affecting my walking. All the reading I have done say that neck/disc issues can cause both of these. No doc will even address the issue. They say that they can't promise what my surgery results will be. Hopefully many of my issues will improve but do not mention the back pain or incontinence.

The things I have read say that all of this nerve stuff is hard to predict. All I can do is get through the surgery and see what happens. It may be that you trigeminal pain is the same way. I would be surprised if your teeth issues aren't causing the problem. Has to be addressed so if it was me I would do that first and see what happens. Good luck. Irish

MAT51

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Re: How numb can we become?
« Reply #3 on: November 23, 2017, 05:55:10 AM »
Well, if it is trigeminal, since that nerve is on the stomach meridian, try drinking mint tea to calm it down,

Apparently Joe it isn’t trigemal - it’s just everywhere so i don’t think mint tea will regenerate my dead nerve fibres now - although I drink it a lot anyway as it’s refreshing.
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MAT51

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Re: How numb can we become?
« Reply #4 on: November 23, 2017, 06:04:52 AM »
I guess my thoughts are that your main problem to get addressed and taken care of is the problem with the tooth and the nerve. It may be that a lot of your issues will resolve then. Nerves are crazy to figure out. I have all these issues with my neck but have had incontinence of urine and back issues that are affecting my walking. All the reading I have done say that neck/disc issues can cause both of these. No doc will even address the issue. They say that they can't promise what my surgery results will be. Hopefully many of my issues will improve but do not mention the back pain or incontinence.

The things I have read say that all of this nerve stuff is hard to predict. All I can do is get through the surgery and see what happens. It may be that you trigeminal pain is the same way. I would be surprised if your teeth issues aren't causing the problem. Has to be addressed so if it was me I would do that first and see what happens. Good luck. Irish

Thanks Irish - as I’ve just said to a friend I’d feel so lucky if it were found that all my problems were all musculoskeletal rather than systemic. At least there’d be an odd on possibility of recovering some sensation again in one part of me if not all. But the main feeling amongst my medics seems to be that. With numbness now from scalp to toe - and in my finger tips with pins and needs the length of both arms - the chances are that it’s all systemic ie immune mediated neuropathy from Sjögren’s.

I really wondered if anyone else had been affected in the way I describe - not trapped nerves due to arthritis or impingement. Not that I’m minimising these but it isn’t the same because mind is probably untreatable so they keep telling me. Numbness = the ultimate dead end.
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irish

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Re: How numb can we become?
« Reply #5 on: November 23, 2017, 09:07:41 AM »
This is just a long shot, but with my cervical spine issues I had neuropathy in a whole lot of places and my first assumption for a long time was that it was autoimmune neuropathy. I had no neck pain or headaches so was really surprised when I was found to have a compressed nerve.

My point is that you have a diagnosis of neuropathy and this makes it hard to suspect anything but your present diagnosis. So many issues can be occurring along with or in addition to your autoimmune neuropathy so that no stone can be unturned. Good luck. Irish

MAT51

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Re: How numb can we become?
« Reply #6 on: November 23, 2017, 09:18:08 AM »
Thanks Irish. I guess this is why my neurologist wants to track down my previous cervical and lumbar MRIs, cervical one done 3 years ago in another NHS hospital so she couldn’t access it on the spot. She wants to leave no stone unturned - but because all is bilateral and I already had a lot of this stuff back then - I guess this is the reason why it’s so unlikely to be due to nerve entrapment. She is very thorough and I’m glad for this at least.  :)
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irish

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Re: How numb can we become?
« Reply #7 on: November 23, 2017, 02:29:15 PM »
Good she is thorough, but it all takes time and that is so frustrating. Irish

SjoGirl

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Re: How numb can we become?
« Reply #8 on: November 27, 2017, 03:38:11 PM »
Hello Mat,

Unfortunately from what I have read there may not be an answer to your question. If there is some specific cause, such as a disc impinging on a nerve it may be that relieving the pressure will address the issue. If it's peripheral neuropathy that may be much more difficult to address.

I speak not as an expert, but a fellow traveler who has asked the same question and learned that neuropathy is not well understood. This book is helpful to the degree possible -- Peripheral Neuropathy: When the Numbness, Weakness and Pain Won't Stop (American Academy of Neurology) 1st Edition. You might also check the website for the Foundation for Peripheral Neuropathy  https://www.foundationforpn.org/.

Wish I could offer more, but there is much work to be done to understand these issues.


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Re: How numb can we become?
« Reply #9 on: November 27, 2017, 08:23:27 PM »
All of my facial/upper body problems are SFN.  This was revealed with extensive testing (MRI and Nerve conduction).  My cervical spine is  complete disaster, but not the cause of my problems.

SFN is no fun, but fades into the background compared to my profound Peripheral Neuropathy which has me wearing braces and basically crippled.  My Immune Dysregulation has truly altered my life.

I take 3600 mg Gabapentin a day and almost all of the burning, tingling, itching pain is gone.  I still have numbness in the front of my face, like when novocaine is wearing off.

I have some problems eating 'gracefully' because of the numbness.

I can hear you screaming MAT51.  I'm screaming too.   I didn't sign on for this.  When my severe coronary artery disease was diagnosed and I had three angioplasties and two stents in 1999, I thought 'well this is my problem' and now I know what to expect and what to do.

Three years later the Sjogren's Symptoms appeared suddenly, and after that it was all downhill.  The CAD is a walk in the park compared..  I mean it could kill me (I'm actually doing quite well vis a vis my CAD) but the Immune insanity is a daily trial.

We do what we can....and help each other.

Regards,  Elaine
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MAT51

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Re: How numb can we become?
« Reply #10 on: November 28, 2017, 02:08:25 AM »
Hello Mat,

Unfortunately from what I have read there may not be an answer to your question. If there is some specific cause, such as a disc impinging on a nerve it may be that relieving the pressure will address the issue. If it's peripheral neuropathy that may be much more difficult to address.

I speak not as an expert, but a fellow traveler who has asked the same question and learned that neuropathy is not well understood. This book is helpful to the degree possible -- Peripheral Neuropathy: When the Numbness, Weakness and Pain Won't Stop (American Academy of Neurology) 1st Edition. You might also check the website for the Foundation for Peripheral Neuropathy  https://www.foundationforpn.org/.

Wish I could offer more, but there is much work to be done to understand these issues.

Thanks Sjogirl. Some of us UK are trying to work out how many of us are affected by Sjögren’s in this Neurological way and why nothing is being done to help us beyond the usual DMARDs/ immunesuppression. I’m just back from seeing my primary/ GP abd she’s lovely. Together we worked out that I’m healthier in blood terms when a new wave of numbness comes. She said this is because the pain masks the numbness. I pointed out that the pain represents inflammatory neuropathy as I’ve said all along. My CRP always reflects my nerve pain and numbness represents death of nerves therefore my CRP comes down to near normal.

Each time they tell me that this will hopefully plateau/ self limit but I know in my heart that it won’t!
It’s part medical ignorance about the peripheral nervous system but also lack of money and unwillingness to admit this. So they are waiting for me to turn even more numb until it’s too late to do anything at all.
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MAT51

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Re: How numb can we become?
« Reply #11 on: November 28, 2017, 02:17:57 AM »
Thanks Elaine.
It is all SFN and autoimonc stuff with me. The fact that the NHS in Scotland is in massive deficit ensures that there will be no treatments such as IViG. Gabapentin made me see double and had no effect even when I was in pain -  but I don’t need pain relief. I need a warm, humid room with technology that responds to my voice when I have one, and doesn’t rely on my numb finger tips. I need to know that this disease will stop with my tiny nerve fibres abd not progress to affect my organs, larger nerve fibres  and brain. If prevention methods for immune mediated neuropathy continue to be refused I need assurance that I will get practical help as this affects my ability to navigate safely now. The thing that makes me mad is that I’ve been saying that my pain is all part of an inflammatory/ autoimmune process for 3 or 4 years and no one has listened. Now they listen and then say it’s too late!!

Hello Mat,

Unfortunately from what I have read there may not be an answer to your question. If there is some specific cause, such as a disc impinging on a nerve it may be that relieving the pressure will address the issue. If it's peripheral neuropathy that may be much more difficult to address.

I speak not as an expert, but a fellow traveler who has asked the same question and learned that neuropathy is not well understood. This book is helpful to the degree possible -- Peripheral Neuropathy: When the Numbness, Weakness and Pain Won't Stop (American Academy of Neurology) 1st Edition. You might also check the website for the Foundation for Peripheral Neuropathy  https://www.foundationforpn.org/.

Wish I could offer more, but there is much work to be done to understand these issues.

Thanks Sjogirl. Some of us UK are trying to work out how many of us are affected by Sjögren’s in this Neurological way and why nothing is being done to help us beyond the usual DMARDs/ immunesuppression. I’m just back from seeing my primary/ GP abd she’s lovely. Together we worked out that I’m healthier in blood terms when a new wave of numbness comes. She said this is because the pain masks the numbness. I pointed out that the pain represents inflammatory neuropathy as I’ve said all along. My CRP always reflects my nerve pain and numbness represents death of nerves therefore my CRP comes down to near normal.

Each time they tell me that this will hopefully plateau/ self limit but I know in my heart that it won’t!
It’s part medical ignorance about the peripheral nervous system but also lack of money and unwillingness to admit this. So they are waiting for me to turn even more numb until it’s too late to do anything at all.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

warmwaters

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Re: How numb can we become?
« Reply #12 on: November 28, 2017, 06:38:09 AM »
At tiny element of "what I need"... I use a Mac and find that voice input for typing has gotten quite good. I also use it for texting on my phone.

A drop in the bucket to the big problems you are describing, but maybe a small useful workaround.
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MAT51

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Re: How numb can we become?
« Reply #13 on: November 28, 2017, 09:46:40 AM »
It’s a great idea Warmwaters. I’m going to see how it’s done on my iPad and iPhone as my laptop is broken and I can’t afford another. One small problem though - my voice is changing like an adolescent boy’s! One minute it’s there, other it’s almost gone, others it’s high pitch, other days low as a Rossian bass!
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Carolina

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Re: How numb can we become?
« Reply #14 on: December 01, 2017, 05:49:22 AM »
I hear you Matt.  Medications are tricky for many, and almost impossible for us.

I do have IVIG every 4 weeks, but for my Immune Deficiency, and not at the level to help/stop the damage to my nerves.

I 'can' say this.  My PN did 'level' out when the nerves were basically 'gone'.  And my general neurological damage isn't progressing at a rapid rate (I think).  I'm 75 and all of this neurological 'stuff' began when I was 60, but I've had Immune Dysregulation all of my life.

Sjogren's is essentially damage to the parasympathetic nervous system.  Meniere's is nerve damage to the ears.  Inflammation is the underlying culprit, inflicted on us by our Immune System.

Of course nerve damage can also occur when nerves are compressed, from environmental and also medication damage and due to genetic causes, so not all nerve damage is from inflammation.

My sister-in-law must take chemotherapy for her Multiple Myeloma (since 2009) and now has the beginning of neuropathies.

But for me, all of the other possible reasons for my many conditions have been ruled out.

Oh, and my voice is all over the place, as well.  It wasn't until you mentioned it, MAT51, that I realized it.  I use voice for my text on the phone, but then sometimes my phone doesn't recognize my voice!

And of course I am often so hoarse and 'gravelly' due to dryness.  Just answering the phone is an adventure.

I am so glad I can still see and can still use the keyboard.   But I often feel 'very useless'.  My entire life has been devoted to helping others, bringing order to organizations, and feeling productive.  Now I just feel like I'm vegetating.

Right now my hip pain is preventing the exercise which has been my salvation.  I go today for X-Ray of my right hip.  I really don't want anything to be 'found' on the Xray which will mean surgery/hip replacement, but then if nothing is found, what will I do?

As I venture into the 'dark woods' of older age, I become discouraged at times.   Patience, Persistence, and Acceptance...and the hardest of these is Acceptance.

Regards,  Elaine
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