I haven't heard of too many people with Idiopathic PN who've finally found the answer to what their 'cause' is so I thought I should write this just to let everyone know that there 'IS' hope!

I know I'm one of the lucky ones but maybe someone reading this just might have a similar problem and not know it. I was definitely clueless as to what was wrong. I'll try not to make this too long and boring but here goes:

In 1999 at age 50 I started having some major foot pain, was referred to a Podiatrist and was diagnosed with Plantar Fasciitis and Tarsal Tunnel Syndrome (same as Carpal Tunnel except in your feet).

I was given custom made orthotics to wear in my shoes and they were pure agony. Even so, the dr said to keep wearing them at all times. I was on Workers Comp. during that time. Well the foot problems were improving but I told the dr I kept feeling like ants or something were crawling on the soles of my feet. That soon turned into a feeling of needles, then 'hot' needles, and then the total vibrating and burning started. He immediately diagnosed Neuropathy.

At least I was lucky to get a quick dx! The bad part was it was idiopathic and not work related.....he had to release me back to work since the work related foot problems had been taken care of. Now the major problem....I was free to go back to work (on my feet ALL day!) but couldn't stand being on my feet because of the pain. My employers considered it a 'voluntary' quit since the dr said I was able to go back. So I lost my job, insurance, dr...the whole shebang in one fell swoop.

My husband and I had been on the verge of divorce already so this was the final straw for me.....no more husband either.

To make this part short (lol) my daughter was leaving her husband too so we moved into an empty apt together. She's the manager here now and we're doing fine so it all turned out well on that issue.

In the mean time, here I was with no dr, no meds, no income, and clueless as to where to turn. I'd had one really nice nurse while on workers comp and I called her in unbearable pain and in tears wondering what on earth to do. She told me about SS Disability and I immediately applied. I was accepted within 4 months but had gone without a dr or meds for 8 months by then. Yeow!

Here it is 2002, and I kept complaining to my dr that I just knew I had a bone cyst in my left hand. I'd had one removed from my right hand before and it felt just the same. He sent me to an Orthopedic Surgeon to get checked out and luckily that dr did some little tests to check how flexible my arms were and things like that.

My left arm I could put behind my back and reach my fingers up to mid shoulder blade area, but my right arm I could only put behind my back....couldn't reach up at all! (Funny the things you don't notice or pay attention to!) So he took ex-rays of my cervical spine, only to discover I probably need to have surgery to remove a disc.

Years ago I had a horrendous whiplash that I didn't do anything about but suffered for at least 10 years with an almost crippling stiff neck every now and then. He said that may have been what caused the initial damage to the soft tissues in my spine.

I'm not sure of all the details yet. I have an appt. with a Neurosurgeon July 26, 02. I have bone spurs in my cervical spine. I guess that's built up scar tissue from the soft tissues being damaged and trying to heal over and over (?). Anyway the Ortho said that's what's causing my PN. All the nerves in that area are being pinched.

Who would have guessed! Another lucky break... going to a thorough dr made all the difference since I only went to him about the shocks in my hand! If you have Idiopathic PN there's always HOPE....."something" is causing it, the problem is 'finding' it.

I'll add an update to this as soon as I have my 'second opinion' with the Neuro and find out what's going to be done.

My sincerest wish is that we could ALL know why we're suffering from this.... For those of you who 'know why you have this', you have my deepest sympathy and all we can do is pray for a 'cure' for the relentless pain of this condition.

All My Love to All of You,

Robyn :o)
E-mail:   milnjel@cableone.net

Well I hate to even write this but I said I'd let everybody know so here goes. I went to the neurosurgeon today and he looked at my xrays and MRI......he was very sympathetic and said the good news is, the scar tissue I have 'isn't' pressing on any of the nerves and isn't affecting anything with my spinal cord...the bad news is no surgery! He said he could go ahead and do it but he'd have a new car and I wouldn't be any better. Tim said he went thru the same procedure and it didn't help him either...only sets off metal detectors now lol. He said I have degenerative disease/arthritis, which isn't unusual after you're past 35 (and I'm WAY past :o) but that he didn't feel that was causing the PN or the pain in my legs and has refered me to a neurologist that specializes in PN. I doubt that I'll go unless they make me. I'm pretty sick of drs all saying something different. I'd probably get one that won't give you anything but ultram or tylenol for the pain anyway. My own dr seems to have been right all along...it could have been a jillion things that could have caused my idiopathic PN. At least he helps with the pain. I think I'll really be fighting a battle with depression for awhile after this major let down, but I'll get over it. So much for giving people hope, guess I better have Win remove my story from his site. Sorry for sounding so pitiful...I'll feel better tomorrow. That's the news, just thought I'd let you know.

Hugs, Robyn :o)
milnjel@cableone.net

Note From Winston:   This update was added to help others know that they are not alone in their ups and downs when dealing with this mysterious nerve-damage disorder.