Has anyone else had this problem?

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Has anyone else had this problem?

Postby Apuman » Wed Dec 30, 2009 6:56 pm

Before I was diagnosed with RRMS in February I used to work as a carpenter. I've by and large stayed away from that type of work because of safety issues with my ballance and use of power tools. I've done a few small tasks since then, but niether followed with good results.

After I had mostly recovered from my second attack, I had to do a task that involved reaching deep inside of a wall cavity, and working with my right arm in a rather strenuous position. A few days later, that arm started going numb, starting an attack that would spread to the right side of my chest and through the right half of my head, and also into my legs and feet. That was in September, and I still have numbness in my fingers. I can't say it was cause and effect, just a possibilety.

The second time it happened, I was instaling door latches. I was spending a lot of time kneeling, with my toes in a rather cramped position. I've done this plenty of times before, and my toes would go numb from lack of circulation. I would simply stand up for a few minutes, and all would be back to normal. This time, however, when my toes went numb, they stayed numb. After 3 days of this, I decided to leave the job. I had had numbness in my toes before, but it had completely recovered before I began this job. It took a month for my toes to return to normal. I wouldn't call this a full blown attack like the other one, but it seems certain that sitting in this strenuous position caused these symptoms to reappear. I'm a little bit baffled by it, as I wouldn't expect the circulation in my toes to affect the neural pathways in my spinal cord, but who am I to know?

I'm just wondering if anyone else has experienced things like this, namely, experiencing symptoms in body parts that have sitting in strained positions. Or maybe I'm just allergic to carpentry :wink:

Any help is appreciated.

Sheldon
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Re: Has anyone else had this problem?

Postby NHE » Thu Dec 31, 2009 3:46 am

Apuman wrote:I'm just wondering if anyone else has experienced things like this, namely, experiencing symptoms in body parts that have sitting in strained positions.


If I let my foot fall asleep, my neuropathic pain increases by about a factor of 10. However, it usually goes back to its annoying normal (wrapped in hot sandpaper feeling) in about 20 to 30 minutes.

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Re: Has anyone else had this problem?

Postby euphoniaa » Thu Dec 31, 2009 5:15 am

Apuman wrote: I'm a little bit baffled by it, as I wouldn't expect the circulation in my toes to affect the neural pathways in my spinal cord, but who am I to know?

I'm just wondering if anyone else has experienced things like this, namely, experiencing symptoms in body parts that have sitting in strained positions.


Hi Apuman,

Yeah, I get that stuff all the time, and mine is very likely to be from my other fun condition - HNPP (Hereditary Neuropathy with liability to Pressure Palsies). Which means that my peripheral nerves are demyelinating like my central nerves - 2 demyelinating diseases and a missing myelin gene. I write about it all the time, but my suggestions that many of our problems are just as likely to be peripheral nerve ones as CNS ones are often met with a resounding silence. :)

Anyway, the peripheral nerves are ALL the other nerves in one's body, like the ones to all your organs and your extremities, and there are a gazillion medical conditions and movements that can affect them besides HNPP. "Pressure Palsies" refers to the condition caused by excess pressure on a nerve. When MY nerves "go to sleep" from pressure like other people, it takes much longer for the feeling to come back, and the nerve damage is relapsing/remitting and progressive like MS as well. I would think that age alone, or years of use, would affect even a normal (ha-ha, like MS people are "normal") person's ability to come back from PN stress.

Example 1: I took yoga class in spring & summer semesters and it made all my fingertips completely numb. (NOT from MS) I know it was from HNPP (and the resulting carpal tunnel), because it gradually got worse through movement in the classes and gradually went away after each semester.

Example 2: About a month ago the skin around my left ankle (my MS side) went slightly numb for a week for no damn reason and then it disappeared as instantly as it came. But I figure it was a typical MS-type episode for me.

In my life, I generally attribute all my numbness after movement/position stress to HNPP, and very little of it to MS. In the cases you described, however, it almost sounds like a combination of issues, the way it spread so extensively. You might want to ask your doc about it, but personally, it doesn't matter to me the slightest bit whether my numbness is from one or the other, and I absolutely never refer to any of my weirdness episodes as "attacks' anyway. :)

Anyway, I'll add links to a couple of my PN posts here. Good luck to you!

http://www.thisisms.com/ftopict-8138.html

http://www.thisisms.com/ftopic-7757-day ... asc-0.html

And here's more PN info.

Peripheral Neuropathy Symptoms (from Mayo Clinic)

Your nervous system is divided into two broad categories. Your central nervous system consists of your brain and spinal cord. All the other nerves in your body are part of your peripheral nervous system, which includes:

■Sensory nerves to receive feelings such as heat, pain or touch
■Motor nerves that control how your muscles move
■Autonomic nerves that control such automatic functions as blood pressure, heart rate, digestion and bladder function

Most commonly, peripheral neuropathy begins in the longest nerves — the ones that reach to your toes. Specific symptoms vary, depending on which types of nerves are affected. Signs and symptoms may include:

■Gradual onset of numbness and tingling in your feet or hands, which may spread upwards into your legs and arms
■Burning pain
■Sharp, jabbing or electric-like pain
■Extreme sensitivity to touch, even light touch
■Lack of coordination
■Muscle weakness or paralysis if motor nerves are affected
■Bowel or bladder problems if autonomic nerves are affected

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby euphoniaa » Thu Dec 31, 2009 5:26 am

Oh yeah, I've got another little posting hint for newcomers:

To get more response to a specific topic, make sure you mention it in your subject heading (like "numbness" for instance). I've found that a lot of viewers only have time to skim through the headings, looking for items they might have questions about or experience to share. :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby shye » Thu Dec 31, 2009 4:52 pm

Yes Apuman,
there is a post somewhere here about reynaud's syndrome--appears a number of us have this. It connects with what you are describing, and also I think, with veinous insufficiency.
With Reynaud's, get varying degrees of lack of circulation in toes and hands--even in summer, my circulation in hands and feet freezes in airconditioning--and then gradually my whole body gets incapacitated--actually feels like blood is turning into a thick gel (ie, that is before almost all feeling leaves).
and say if I cross my legs, my foot will gradually lose feeling--as with you, usually can get it back by uncrossing leg and flexing the foot--but sometimes, can't get it back with this ease.
After reading a bit on CCSVI, and having done lots of research, am beginning to see the veinous insufficiency aspect of MS in this. And since finding this forum a few months ago, found out about Inclined Bed Therapy (see the informative thread on this), I have been using an inclined bed for about a month, AND am noticing that the reynaud's is diffferent now--seems to be much better circulation in hands, and somewhat better in feet now. Say with super cold weather, even with gloves would loose all feeling in hands, could not write, etc. But was super cold for a few days this past week, and my hands "survived" much better than normally. Also, do not lose my balance (left leg and foot esp) anywhere near as much now that using Inclined Bed therapy, in fact, thinking about it now, NO incident of this in this past month!!!
So, you might want to check those threads, and also I find upping Vit B6, Zn and MG helps very much with these symptoms.
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Postby euphoniaa » Thu Dec 31, 2009 7:58 pm

shye wrote:Yes Apuman,
there is a post somewhere here about reynaud's syndrome--appears a number of us have this. It connects with what you are describing, and also I think, with veinous insufficiency.
With Reynaud's, get varying degrees of lack of circulation in toes and hands--even in summer, my circulation in hands and feet freezes in airconditioning--and then gradually my whole body gets incapacitated--actually feels like blood is turning into a thick gel (ie, that is before almost all feeling leaves).


Hi Shye, I've had Raynaud's pretty bad (when exposed to cold) for maybe 25-30 years at least. It's mainly due to COLD temperatures turning my fingertips & toes white & numb, and very painful. In my case, it's a very, very specific and completely different phenomenon than the the other numbness I get from pressure and strain on my peripheral nerves. I bumped the Raynaud's thread so everyone can find it, though, because there's lots of info on it.

I've had many, many years learning about the differences between both Raynaud's and peripheral neuropathy.

So...can you imagine one of those days when all 3 of them (MS/HNPP/Raynaud's) act up on me at once? I can actually tell them all apart. :D Really.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby gainsbourg » Fri Jan 01, 2010 7:43 am

I tend to agree with euphoniaa's answer: a lot of people with MS probably have peripheral nerve damage on top of CNS damage, though I think it is usually in a form too mild to be considered worth investigating.

One thing that brings me to this conclusion is that perpheral nerve damage is notoriously hard for doctors to investigate or pinpoint. The damage to the myelin, or axons, doesn't show up as conveniently as plaques do in brain or spine scans. Often, all that can be seen in MRI is "thickening" of the peripheral nerve roots, indicating a history of demyelination and remyelination. Sometimes it takes many years before a diagnosis of peripheral neuropathy is even tentatively made.

Nerve conduction is notoriously inconclusive and the best way to establish if someone has peripheral damage is by nerve biopsy...usually of the sural nerve in the foot. Once you have an MS diagnosis, do you really think they are going to spend years continuing with investigations trying to establish if you also have peripheral damage?

I think it is worth remembering that basically MS is nerve damage, and we have nerves all over the body. Why should whatever is causing the inflammation in the CNS not also affect peripheral nerves? I often think that if we understood why the damage is localised we would be nearer to understanding the cause.

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Postby euphoniaa » Fri Jan 01, 2010 1:33 pm

gainsbourg wrote:I think it is worth remembering that basically MS is nerve damage, and we have nerves all over the body. Why should whatever is causing the inflammation in the CNS not also affect peripheral nerves? I often think that if we understood why the damage is localised we would be nearer to understanding the cause.


I agree with a lot of what you said, too, gainsbourg. My neuros have all assumed I have HNPP, but it's one of the few peripheral neuropathy conditions that are a named, genetic defect that can be tested for, rather than a generic term for general symptoms. But they said that MS trumps HNPP and there's "no treatment for it anyway" (reading between the lines, they meant "no expensive drug treatment for it").

Along the lines of your statement above, though, the problem is that the CNS & PNS myelin come from completely different types of cells. But...one of the most interesting research articles I've read recently was the one on Squiffy's thread:

"Glial cells can cross from the central to the peripheral nervous system": http://www.thisisms.com/ftopict-9065.html

None of my research had ever turned up any way that the 2 different types of myelin cells in the CNS & PNS (oligodendrocytes & Schwann cells), had any connection. But this research shows that
"the Glial cells, which help neurons communicate with each other, can leave the central nervous system and cross into the peripheral nervous system to compensate for missing cells."


And that may explain why mine are all so screwed up. :)
************
And now, back to Apuman/Sheldon, with apologies for rambling on and on here. :) So anyway, your symptoms seem more complex to me and don't fit easily into my little sample scenarios. Although a lot of miscellaneous MS stuff can be ignored, I would really feel better if you checked with your doctor to make sure you don't have something else going on entirely. There are plenty of things worse than either PN or MS.

I'll end with my mantra, "It's not always MS...it's not always MS...it's not always MS..." and a wish that you find some answers and some relief from your symptoms. :)
-
-
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Apuman » Fri Jan 01, 2010 5:16 pm

Thanks everyone for your imput! Euphoniaa, I'm sorry to hear about your double frustrations of MS+HNPP. One nervous disorder is enough to deal with.

I've always wondered myself how exactly they know that the PNS isn't involved in MS, or if it was just assumed. :roll:

I read the the thread on Reynaud's, and although I havn't experienced anything nearly as severe as what the other posters were relating, I have noticed that I'm a bit more prone to frostbite than others (I've had very mild cases of it) Ever since my first attack, every little bit of numbness is gets me asking if my MS symptoms are exacerbating. I'll get it checked out by a doctor if it continues to be a problem.

The more I read, and the more I experience, the more I'm coming to believe that circulation plays a part in MS. I'll read up more on inclined bed therapy when I get a few minutes.

Happy New Year everyone,

Sheldon
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Postby Absentee » Fri Jan 01, 2010 6:27 pm

euphoniaa wrote:
I'll end with my mantra, "It's not always MS...it's not always MS...it's not always MS..."
-
-


thank you for that!!!!! It is something I need to remember more often.
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Postby gainsbourg » Sat Jan 02, 2010 6:15 am

One interesting difference between the two types of myelin - schwann cells (peripheral nervous system) and oligodendocytes (CNS) is that schwann cells can actually wrap round damaged axons and repair them.

I just found an article that claims there may soon be a way to get CNS myelin to repair axons:

http://www.sciencedaily.com/releases/2008/05/080519092202.htm


Couldn't find much information about how many of those with MS also have peripheral nerve damage but found this:

http://www.neurology.org/cgi/content/abstract/33/10/1361


Also found this that suggests that myelin in PNS and CNS may not be so different after all:

http://www.pnas.org/content/83/4/1111.full.pdf


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Postby LoveActually » Sat Jan 02, 2010 3:28 pm

I have wierd things happening to me now that I didn't notice before.

When I'm sitting on the sofa and laying my head on my hand with my elbow on the arm of the sofa, I notice that my arm and hand will start to tingle within a couple of minutes. I know it's normal for peoples extremities to fall asleep but surely not that fast.

I also have circulation issues. Ironically enough, while I was picking out trim for our house I was standing still for about 8 minutes or so. When I looked down at my legs that started to feel wierd, they were reddish-purple. It was very freaky, I started to shake them out a bit and they felt a little better. The color returned after about 20 minutes or so.

That's just the tip of the iceberg, unfortunately.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby leetz » Sat Jan 02, 2010 8:44 pm

love actually.........the tingle happens to me quick fast...hands fall asleep...legs too!!!

LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Greenfields » Tue Jan 05, 2010 1:24 pm

I'm in that boat. Sit still or rest my head on my arm and that tingle starts.
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Re: Has anyone else had this problem?

Postby JasperUnited » Fri Aug 17, 2012 4:33 pm

All of these posts are from 2010, but strangely MS is still pretty much a current thing. The year is 2012 and lol I have experienced a numbness in both of my arms and the back of my head. Like for a YEAR lol it was from pulling back muscles in the winter time, and MS is not kind it will keep the back out of order. I have the as Dr. House calls it. The fun ms with balloons and bike rides lol but I do suffer from optic neuritis, when I first got MS at 17, 31 now. Currently am going blind in my one good eye. But I still plan on going with the state to get retrained so I can provide for my girlfriend and my family.
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