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Peripheral Mononeuropathy

weather: light rain
outside: 18°C
mood: reminiscent
nephelokokkygia wandered by and asked me about "peripheral mononeuropathy"; I have it listed in my Interests. I started a short explanation to her... and couldn't stop talking =)

I had a mysterious-ish nerve damage episode years ago. One morning, I woke up and my left leg and right hand were numb. At first, I thought I just slept on my arm funny, but the numbness never wore off. On my hand it was my thumb, index, middle, half of ring finger and half of the palm on the thumb side. I could still type, I could still write, although it was messy and I had to try very hard to be neat. When I touched my face with my own hand, it felt like someone else was touching me.

It slowly got worse, it started hurting more and more, my fingers started swelling. When I pet kat_box's cat Taz, my left hand felt soft fur, my right hand was petting iron spikes. When I washed my hands, cold water hurt, hot water hurt and lukewarm trickling water felt like I had my hand in a high pressure water blaster and it was ripping my hand off my arm.

Svena, my doctor at the time, did all kinds of tests. My reflexes and everything are completely normal except for numbness in certain areas of my leg/hand, all blood tests showed no signs of problems (other than the elevated ESR levels but that just says "something's inflamed somewhere"), I had no other symptoms of more serious problems. MS was ruled out, a herniated disc was ruled out, etc. I was on Naprosyn-E 250mg, three times a day for the inflammation.

I went to a Neurologist who looked at it, ordered MORE blood tests, and said it looked like classic Carpal Tunnel Syndrome. I was booked in for surgery. They were going to slit my wrists. =} At the eleventh hour, an electro-myogram was done to confirm Carpal Tunnel. This is where they draw all over your arms and legs with a Sharpie, connect up electrodes to different parts of you, zap you up and down with electric current to measure how much you twitch which shows up as F-waves on the thing that looks a lot like an oscilloscope. Or something.

Well, it was not Carpal Tunnel at all. Surgery was cancelled. But, by now, I was in quite a bit of pain and they STILL didn't know what the hell was going on with me.

Over the 6 months, I don't know how many gallons of blood were taken and tested. There were some really horrid, scary, controllable-but-incurable diseases that were theorized, Lupus, Guillain-Barre, Fibromyalgia. I had protein and electro-encephalographies. Inconclusive. All of it. I also had a biopsy. Also inconclusive.

I was in pain every moment of my waking life and no one could figure out why.

Being constantly in pain like that does really nasty things to your state of mind. You never want to go anywhere or do anything because it hurts to move. The worst thing was wishing with all your might that some test will come back positive for SOMETHING, even if it's the nastiest, scariest disease you could imagine.

Please, let me have Lupus. I know it means my immune system is failing to recognize my own organs and attacking them like a foreign entity. But pleasepleaseplease let it be positive this time. Please.

You just want to know something even if it's the worst news possible.

It started getting better after 6 months, but I can still feel that my hand isn't quite the same. We still have no idea why it happened and it could come back at any time. Peripheral Mononeuropathy was the best description of what it was, but that doesn't really say much.

It could be a precursor to something really bad. Any day now, I could wake up numb, in pain or some kind of relapse and not be able to move or not be able to control my bladder/bowel. I don't know. I just try to live well and live healthy as much as I can.

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Comments

( 17 comments — Leave a comment )
(Deleted comment)
bride
Aug. 6th, 2004 09:09 pm (UTC)
Yipes. That's really crappy. =( I hope you at least find out what it is.
athanata
Aug. 9th, 2004 08:17 am (UTC)
i'm not sure what "sick" means for you - nausea, vomiting, headaches, etc...

but i felt nauseous 24-7 for a whole year. it was horrible - i just slept a lot and didn't go out much - just concentrated on my schoolwork (though i seldom made it to class). i had all the tests run, MRI's, blood work - you name it. for awhile they thought it was an inner ear problem. finally after a year and a half my mom convinced me to go to a psychaitrist. i grumbled the whoooooole time. i thought it was stupid - there was NO WAY i was doing this to myself! i got a perscription for Celexa, and within 2 weeks the sickness went away. I've been on it for 5 years now, and except for occasional "bad spells" (when i had to up my dosage), i've been feeling great.
katlyn
Aug. 6th, 2004 10:06 pm (UTC)
I remember, after being in physical therapy for several months for my back injury and still barely being able to walk, they finally sent me in for x-rays and to see an orthopedic surgeon.

He said, "The good news is you don't need an operation. The bad news is there's nothing we can do to fix you."

I was devastated and broke down in the office. It was really tough to pull myself together again after that. Depression is one of the biggest stumbling blocks to making any type of recovery.



What you say about living with constant pain... yah. I'll find myself getting explosively angry for the most minor things, wondering what the hell is wrong with me, and then finally realizing that I have bolts of pain shooting down my legs and I'm limping. The pain almost becomes this... subatomic buzz that infects your whole life.

I hope to whatever higher power that's out there that it never comes back for you.
bride
Aug. 6th, 2004 10:40 pm (UTC)
He said, "The good news is you don't need an operation. The bad news is there's nothing we can do to fix you."

PFFFT... yeah, THANKS BUDDY >K{

They told me I shouldn't be typing or using a mouse ever again. Software development is my life. You may as well throw my entire life out the window then.

It's such a Catch-22. Depression blocks recovery, but the pain is probably what's causing most of the depression.

*HUGS* Stay well =}
fianna
Aug. 6th, 2004 10:43 pm (UTC)
Oh no! I remember you telling me a little bit about this when I was having problems with my hand going numb. They never did find out what was wrong with mine either but it went away. I hope it never comes back for you!!
bride
Aug. 6th, 2004 10:59 pm (UTC)
Thanks =) I have a feeling it's nutrition related, so I'm doing my best to stay healthy.
nephelokokkygia
Aug. 6th, 2004 10:59 pm (UTC)
Wow. Thanks for taking the time to write out such a detailed response; I never expected that. It does scare me, though.

It was the just the top joint of my left middle finger that was numb, and I had had some unexplained problems (pain and loss of mobility) with my left shoulder in the past, so it was a little worrying. I, too, had that nerve test and another one where they stick a little needle into you to measure your nerves' response--except that was for my shoulder. And everything was normal, according to the tests, of course.

"I could still type, I could still write, although it was messy and I had to try very hard to be neat."

That's exactly what happened with my finger. It's strange to think about; I could still use it perfectly well, but it just felt numb, almost like it didn't belong to me.

There is still some lingering numbness that I notice mostly when I type or do other kinds of work where I'm using my fingers constantly.

I also have several unrelated problems that stem from being born three months early, so I know very well the feelings of frustration and anger that can come from just being in a hospital, for any reason. I wish I had reasons for everything, but I don't.

Anyway, sorry for the rather long response. I hope your situation improves; I know how scary it can be sometimes.
bride
Aug. 6th, 2004 11:10 pm (UTC)
Unfortunately, nerves are the slowest parts to heal in a human body. =P Mine took 4-5 more months before I could say it was completely gone. I started eating better, went on a sane sleeping schedule and really watched my health. That seems to have really helped.

Good luck to you! =)
nephelokokkygia
Aug. 6th, 2004 11:21 pm (UTC)
Well, that is reassuring to know. I never knew that nerves were the slowest parts to heal in the human body. And I do know I definitely should get on a more regular (and healthy!) eating schedule, not to mention a better sleep schedule, too. I guess if it's still there after 4-5 months, I'll start worrying.
jenny_rambles
Aug. 7th, 2004 01:02 am (UTC)
Ugh...
That sounds so scary. My grandma went for years without a diagnosis on what was wrong with her. When she finally found out what it was (Lou Gehrigs) she was in a way - relieved, even though it was such a horrible diagnosis.

And I don't know why hearing your horrible story made me want to tell you mine.

I hope that yours ends happily - with that just being some kind of one time thing.
groomzilla
Aug. 7th, 2004 10:22 am (UTC)
My God, I always wondered what peripheral mononeuropathy was, having seen it on your interests, but never looked it up or asked.

I don't even know what to say.
ex_seagazer118
Aug. 7th, 2004 08:31 pm (UTC)
Good for you for eating better, and watching your health. If you don't already, exercise your hands and arms when you are at the computer for long periods. Massage therapy would help too.

When I got sick earlier this year, I went on a juice fast and went through detoxing my body. And thankfully THAT is what healed me. My symptoms had improved so much at the second dr visit that he said to "keep doing what you're doing". I finally had surgery so he could tell exactly what was wrong and he couldn't find anything. Not even the original symptoms!

Later I read on the internet that doctors can only recommend certain treatments for cancer. Fasting and massage therapy is not among them!
brokenclay_
Aug. 7th, 2004 08:43 pm (UTC)
Good description of how a person would come to want a diagnosis of some god-awful disease. I was fortunate (I guess) that my MS diagnosis was so quick and straightforward and that I didn't go through that being jerked around hell.
Katja
(Anonymous)
Aug. 8th, 2004 10:44 am (UTC)
For the longest time my family and I thought my mom was a hypochondriac because she was always sick with something. When she was in her late 60s, they found out it was sleep apnea.

People think doctors are miracle workers, they are because it's a wonder how they diagnost things at times.

:: <a href="http://www.macaby.com:>Mona</a> :: btw, stopped by from RBJ
bride
Aug. 8th, 2004 02:35 pm (UTC)
Oy... sleeping problems would be a jumping point for a LOT of different problems because the immune system is so dependent on sleep.

I'm so glad your Mom was finally diagnosed properly =}
athanata
Aug. 9th, 2004 08:20 am (UTC)
::hugs:: chronic ridiculousness bites. that's all there is to it.
i'm glad you are feeling better. ::sends good vibes::

oh! on a TOTALLY UNRELATED NOTE. a woman in my apartment has 2 cockatiels - one is all white, and the other looks just like Sid :)
bride
Aug. 9th, 2004 09:18 am (UTC)
Thanks =)

Aaaaw, an albino! Well, it's not really an albino in the genetic sense. They do produce colour, but the colour is white. =)
( 17 comments — Leave a comment )

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