[Monica de Lara]

It's me again.

By reading posts of new people here, I realized that i haven't donde what i should have done and i haven't learned what i should've learned.

I realize too that my neuropathy, now i am even wondering if ti s neuropathy or not, is very different from everyone's else here. I am going to five a brief description on my PN evolution. Perhaps you could help me understand what is really going on in my body, because i realize now that i was never given an accurate diagnosis. Doctors said i dind't really need a name because the treatment was the same

My neuropathy started almost three years ago, at that time i had a personal problem that led me to a HUGE amount of stress, i was also taking some antibiotics for acne (tetracycline), birth control pills and a doctor prescribed a acyclovir for me because he thought i had herpes, but i never had it. That's when my problem started. First it was a mild sensation, like a bit burning, i don't know how to describe it, around my pubis and groins, the sensation would move from there to my thigs and then back. I realized it most when i was sitting and trying to sleep. The day it was imposible for me to get to sleep because the "sensation" became so annoying, i decided to visit a neurologist. He prescribed clonazepam but the "sensation" wouldn't dissapear, so then he ordered some tests. I turned out to be hyothyroid. I started taking a medicine that contains T3 and T4. But nothing changed. Three months after i had started taking t4 and t3 the sensation was still there and it had expanded to my calves and feet. It is interesting for me that my neuropathy or whatever it is, started in my thighs and not in my feet as most of yours has.

Eversince my problems have been: pins and needles, cramps, tingling, feeling spiders wolking in my legs, feeling worms in my legs, bubbles, feeling wet when i am not (all odd sensations) and that's all. That's all it's been, i walk perfectly, my balance is normal, i don't have any motor issues, my reflexes are normal, i can walk on my ankles and on my toes... everything motor wise is ok. Those weir sensations are only present in my legs, i OCCASIONALLy get them in my hands, and they are not that painful. I mean they are just weird and irritating. Every month when i get my period i get horrible cramps, i can say that IS pain, not what i have in legs, what i have in my legs is just weird, odd, desperating, constant, and makes me often be in a bad mood, unable to concentrate, unable to read, unable to pay attention to what other people are saying, because i am thinking about my feelings in my legs. Also i have become extremely aware of my legs and i can’t help being paying attention to them ALL the time.
All this lead me to wonder the following:
• Do i really have neuropathy, and if so, why can i walk, run, stand on my toes etc or is this just a simpler problem which i have not received accurate treatment for?
Some tests i got were:
• ANA’s (normal)
• Antiganglioside antibodies (elevated)
• EMG and NCT (not normal, a Little neuropathy)
• B 1 and b6 vitamins (normal)
• Vitamin D (nearly below limit)
• Electrolites (normal)
I got more but i don’t remember them. I was diagnosed with an autoimmune neuropathy, don't know what type. I took corticoids for 6 months withouth any result (except for weight gain and more acne), and then i had IVIG twice. I don’t know what led the doctor to decide i would only need it twice, but i was thankful because it was extremely expensive. Another doctor i visited said I never had autoinmune issues and that giving me corcicoids was unnecessary. I still don’t know what exactly i had or have. About a year ago i got an EMG and it can back normal, so i guess that means that my nerves have healed. I am currently only on Lyrica, elavil and T4 and t3 for the thyroid, and i long list of supplements too.
So basically my questions are:
• Should i go to another doc and spend a fortune just to get a name for my neuropathy but the same treatment? Does that make a difference?
• I just got an inssurance, but will it cover any studies. The agent told me it wouldn’t cover any treatment of the sickness i had before, so i guess that includes the studies, doesn’t it?
• What are some really important studies i should get, but the really important ones because i cannot spend a lot of money on them?
I know this sounds like i haven’t paid much attention to my sickness. The truth is that i have. But my education is not related to science (i got a major in Political Science and IR) and i work and i haven’t given myself the time to understand all i have to understand.
Is this a tremendous mistake?? Or should i dismiss the name, avoid spending a fortune, that would basically mean for me spending all my savings (which are not enormous by the way), use that Money for something that would make me happy (as taking a trip) and keep taking my drugs and supplements?

Thank you for reading me

[cyclelops]

I did sprint triathlons with neuropathy. (LOL, now I do not.)

It is a matter of degree. Your symptoms sound neuropathic. Because we are all different, neuropathy feels different to us. I have a lot of 'bone pain'.

Some neuropathy gets better, some arrests, and some progresses. It depends on the person.

There are different neuropathies, autonomic, sensory and motor. You can have all three, or combinations there of.

[amit]

Just thinking of starting a thread discribing my neuropathy, but you did it better then I can do. (I have the same sensory sensations, including the piriod ect.)
I feel the same, seems that I have the same symptoms. Lately I was diagnosed as light SFSN - might be toxic NP. But can be also sort of sensory GBS.
I think that instead of looking for a name - we have to look for health. Find what helps us (like rest, without stress, eating well and so) instead of digging and trying to look for a name - because there is no name except of neuropathy and this - we know. in those cases when the reason is not clear - the doctors consider it as idiopatic.
Remember - you were in stress 3 years ago, which means that your imune system wasn't in its best condition, becides taking some medicines - this can couse neuropathy from the toxic type or viral type. in this case - it was one onset and that's it. the damage was done - and that's why you have all this kind of sansations, but it won't progress, or may be very slow. So remember to think positive...

[amit]

Originally Posted by cyclelops

I did sprint triathlons with neuropathy. (LOL, now I do not.)

It is a matter of degree. Your symptoms sound neuropathic. Because we are all different, neuropathy feels different to us. I have a lot of 'bone pain'.

Some neuropathy gets better, some arrests, and some progresses. It depends on the person.

There are different neuropathies, autonomic, sensory and motor. You can have all three, or combinations there of.

what do you mean by "bone pain"? - I think I have the same. How long do you have neuropathy? why type?

[Megan]

I'd also be interested to know what you mean by 'bone pain', Cyclelops!

I have now quite extreme joint pain and stiffness, as well as, particularly when I'm in bed feel that my bones are aching/paining to the core. I am currently being worked up for Rheumatoid Arthritis. Can scarely walk due to foot and ankle pain, knees are now weak and hand pain and stiffness quite bad in the mornings and persistent throughout the day. This has mostly come on since about June/July this year and has worsened since September. Anti-inflamatories made a significant difference for about three weeks (which I only started about four weeks ago) but this week it is not holding me.

Monica I agree with Cyclelops that your symptoms do sound like they are neuropathy and if it was not for the bone and joints stuff which is now happening for me, I would be able to walk ok too with my PN.

What I am fast concluding is that 'time' is the revealer of all things and if we can manage with this condition (particularly if it is idiopathic) in the immediate, then maybe other things will emerge over time which make it clearer as to what is happening! The main problem I have with this approach, is that perhaps by being too lassez-faire we are unwittingly causing more peripheral nerve damage to happen!

[nide44]

I have 'bone pain' of a sort.
It feels like the bone is bruised, but not the flesh around it.
I call it my 'Stepped on by an Elephant' pain.
I get it in my joints and in my feet. At the moment it seems to
be on the bones to the instep, the top of the feet.
Not like I bumped it, but deeper. I get it on the balls of my feet,
& at the joint where the toes meet the foot on the underside. Also in
my legs up to the knee, especially the shins.
Deep into the bone, a bruised feeling.

[cyclelops]

Originally Posted by rina

what do you mean by "bone pain"? - I think I have the same. How long do you have neuropathy? why type?

Hi,

I feel like bones are broken. Seriously. My feet and tibia's sometimes my wrists and fingers feel broken. My ribs kill. Now, by some of my old posts, you know the trouble I have gotten into in my midlife crisis...(breaking my arm in 4 places skiing, stress fracture of the knee area, cutting off my finger tip kite sking and of course, I had a head on with a truck at 55mph in '87--that was prior to midlife crisis) I do know what broken bones feel like. I feel like my bones ache, like after a fracture. I have two herniated calcified discs at T8-9 and T9-10, inoperable for me....it is a horrid surgery for a healthy, young person. Impossible for me. No open thoracotomy for me.

Frankly I think they should do a bone marrow on me to see what is going on in there. They just tell me that my neuropathy feels like that.

I have autonomic, sensory neuropathy, body wide....with neurogenic myopathy. I figure it started around the mid 90's.

I did have Lyme in 94. They tell me I have seroneg. Sjogrens by lip biopsy.
I have a low C4...high ANA off and on.

I must not neglect to tell you that I have profound numbness below the knee on both legs, and also my arms to the elbow....IVIG stops that. I have autonomic issues, stomach won't empty, esophagus doesn't work, constipation, hypotension, bradycardia, anhidrosis. I feel like limbs fall asleep a lot, for a long time...again IVIG stops that. I have little burning....very little. I have a lot of circadian rhythm problems too....goofy feelings, fasciculations, restless leg all over my body (need meds for it), medication reactions up the wazoo.

[Monica de Lara]

Nide44, funny name for your pain.
Rina, I am glad i was able to explain what you wanted to. Where are you from by the way?


Cyclelops, now i understand what your pain is like. I dind't get what you meant by bone pain either.


I guess the only thing we can do is to keep ourselves as healthy as we can by having good eating habits, doing exercise, taking our meds and supplements.

Just one question here: I wonder if it would be ok to have some sort of immunosuppresive therapy (because doctors concluded my neuropathy had an autoimmune component). I won't ever take coirticoids again, never ever, cut i was wondering if I should get an other IVIG session?? ( i mean, just in case). I was on Immuran but quit it because of its potential terrible side effects. Or should i just let my body do whatever it is going to do without me interfering?

[cyclelops]

Hi Monica

I am on IVIG, which stops the numbness. I am exquisitely sensitive to drugs which is a huge problem. I am going off opiates and ambien right now, as the doc thinks now, that those are messing up my autonomic system. UGH, it has been 2 weeks, and my head still feels full of cotton.

Ambien stinks to get off of...just a warning to every one....far worse than pain killer withdrawal. Neurontin is taking off the edge now but I just started that.

I do have something going on that is autoimmune. I am diagnosed with Sjogrens, and I am a post Lymie. My autonomic neuropathy is autoimmune.

Have to hope I can keep my IVIG.

I was on steroids IV for 16 weeks.....I, too, will not take steroids again.

[echoes long ago]

I have broken bone pains in my feet when i stand or walk. This has been going on for years now. I currently also have a real broken bone, the toe next to the big toe on my left foot. I broke it, i have no idea how, then injured it further 2x in the last week. Since i cant feel anything thats not hard to do. Its taped and i have a boot on it now. Since June i have broken other toes on either foot and my ankle. Ive been tested for charcot foot and have had a few mri's of my feet. Anyway thats my version of the walking on broken bones feeling. The actual broken bones hurt less than the phantom ones due to extensive numbness.