[Fran E]

Ok, it seems that I will never be diagnosed. I have peripheral polyneuropathy for 1.5 years now. I tingle and twitch all the time - particularly at night when I get major body tics or twitches. I have also had every test known to man - spinal tap, MRI, CTScan, blood work of all kinds, lip biopsy, muscle biopsy and now a nerve biopsy. None of these have shown anything except the muscle and nerve biopsy which show demyelination/remyelination and some inflammation but not enough to diagnose vasculitis. Also of course the nerve conduction tests which show problems, getting worse over time. I have various other symptoms too - dry eyes, exhaustion, trigeminal neuralgia, raynaud's - most of which have led dr's to thinking that it was autoimmune, probably Sjogren's. However, none of the tests for these autoimmune diseases have confirmed it.
So, at some point do those of us who have had every test in the world and nothing conclusive come back have to resign ourselves to never knowing why we have neuropathies? Or do we keep on trying - perhaps repeating all the tests over and over? And if we are never diagnosed, how can we ever know what to expect in the future?

[dizzie lizzy]

Originally Posted by Fran E

Ok, it seems that I will never be diagnosed. I have peripheral polyneuropathy for 1.5 years now. I tingle and twitch all the time - particularly at night when I get major body tics or twitches. I have also had every test known to man - spinal tap, MRI, CTScan, blood work of all kinds, lip biopsy, muscle biopsy and now a nerve biopsy. None of these have shown anything except the muscle and nerve biopsy which show demyelination/remyelination and some inflammation but not enough to diagnose vasculitis. Also of course the nerve conduction tests which show problems, getting worse over time. I have various other symptoms too - dry eyes, exhaustion, trigeminal neuralgia, raynaud's - most of which have led dr's to thinking that it was autoimmune, probably Sjogren's. However, none of the tests for these autoimmune diseases have confirmed it.
So, at some point do those of us who have had every test in the world and nothing conclusive come back have to resign ourselves to never knowing why we have neuropathies? Or do we keep on trying - perhaps repeating all the tests over and over? And if we are never diagnosed, how can we ever know what to expect in the future?

Fran,

I absolutely empathize. I keep going back and forth myself and I've been dealing with this for only half the time you have. I actually asked my Neurologist that exact question. When do we get to the point where we just say here's what helps and it doesn't matter what name we put to it? On the one hand I feel that there is power in being able to say I have such and such and to be able to explain somewhat to people what that means. On the other hand, once you have a label it complicates a lot of things- especially with congenital disorders that cannot be fixed. Maybe someone who has suffered for many years without a diagnosis and finally got one can add more insight into how it has/hasn't helped them. Any thoughts?
DL

[daniella]

I am at the point and I am going to one more neuro but onto pain control and treatments which is scary when the why and a lot of the dx is unknown. I met this lady with a daughter and she was so ill could barely leave the house for five years and no one knew why. Anyhow a little different but after countless tests and doctors over the five years she found one who looked out of the box and dx her and now she went on a vacation and everything. For myself I have had many tests repeated and am going to have more. My 2nd emg/nc did show and my first didn't but basically the treatment is the same before and after. About the future. When this first happened I had isolated pain in my left inner ankle/foot/calf I was unable to get out of bed. Then I did make progress with that but the pain is very severe still but since then developed in my right,my severe eye issue and now facial,back. I fear the future but I am working on staying in the moment. I fear pain and issues every day but I try to self talk that I can only do what I can to get through the day in a healthy way mentally and physically. I always joke I can't believe I am not grey from all this stress. Hang in there. I know how frustrating and scary this is.

[Leslie]

Ladies - please don't give up. There has got to be someone out there who can tell us what we have and possibly help correct it....


My friend tole me that they recently did a show on Mystery Diagnosis about pheripheral neuropathy. It took 5 years but they finally found out what was wrong. Tons of testing had been done and even to the point of surgery to correct a bulging disk. It turned out that it was a benign brain tumor.

Surely someone can help us!

[sallymander]

After countless tests and several doctors I finally gave up on knowing the cause of my PN and resigned myself to idiopathic.

One consolation was the last neurologist I visited, who was in my opinion the best around, in his late 60s, said that when he first started practicing 60% of neuropathy cases were idiopathic, nowdays that number is down to 35%.

Another hope this doctor gave me was that the majority of idiopathic cases disappear on their own with no lasting damage after a maximum of 20 months.
One can only hope...
This being dependent on ever increasing dosages of pain killers is getting old.

[DanP]

sallymader said:

Another hope this doctor gave me was that the majority of idiopathic cases disappear on their own with no lasting damage after a maximum of 20 months.

Not sure I understand what this doctor meant but I've been idiopathic for over 20 years and nothing about my diagnosis has disappeared "on it own" or by any means. I still have all the symptoms including moderate to severe pain and the "lasting damage" is that the symptoms and the pain is still very much in evidence long after his reported 20 months. So, just what was s/he (the doc) talking about?

[savannah]

My doctor is tired of me pushing for a diagnosis (one year PN) but I feel very strongly that treating symptoms is not the same as knowing what's wrong and being able to try to get treatment for the disorder. with all the new developments in medicine how would we know what will help if we don't know what is wrong.
And be careful, after my insisting on continuing to hunt for a diagnosis she said I had PN and chronic fatigue syndrome. Wow that was depressing. So I went to the CDC and looked up CFS.
I quickly learned I DO NOT have CFS as you have to have certain symptoms, 4 out of 8 and I have one- fatigue.
I am so disappointed in this doctor but it made my day to find out I don't have CFS.
It sucks that we have to become researchers . Thank god for the internet!

[Fran E]

The benefit of knowing the condition, it seems to me, is that you can tell people what you have (instead of just aches and pains and a bunch of weird stuff), every time you see a dr you don't have to go over the whole history - you can just say you have "X", you are more likely to get a treatment that works, and you can have a better sense of your prognosis. I particularly find it difficult at work to explain why I take so much time off for dr's appts, treatment etc - I have never been one of those people who fake being sick and I hate to think that anyone at work may think I am one of those people....
But you are right, with knowing the condition there is the risk that one would have to face the prospect of knowing that you condition cannot be treated, which is a scary prospect!
Fran

Originally Posted by dizzie lizzy

Fran,

I absolutely empathize. I keep going back and forth myself and I've been dealing with this for only half the time you have. I actually asked my Neurologist that exact question. When do we get to the point where we just say here's what helps and it doesn't matter what name we put to it? On the one hand I feel that there is power in being able to say I have such and such and to be able to explain somewhat to people what that means. On the other hand, once you have a label it complicates a lot of things- especially with congenital disorders that cannot be fixed. Maybe someone who has suffered for many years without a diagnosis and finally got one can add more insight into how it has/hasn't helped them. Any thoughts?
DL

[Fran E]

YOu don't know anything more about that show, do you? It sounds interesting.....

Originally Posted by Leslie

Ladies - please don't give up. There has got to be someone out there who can tell us what we have and possibly help correct it....


My friend tole me that they recently did a show on Mystery Diagnosis about pheripheral neuropathy. It took 5 years but they finally found out what was wrong. Tons of testing had been done and even to the point of surgery to correct a bulging disk. It turned out that it was a benign brain tumor.

Surely someone can help us!

[Leslie]

Originally Posted by Fran E

YOu don't know anything more about that show, do you? It sounds interesting.....

Fran - I don't have anymore info that what I posted but I am trying to find out when she saw it to see if I can find how more. My friend is traveling and I haven't been able to reach her. In the meantime I can checking the web to see if they show has a website...