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!

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.

sallymader said:

Quote:

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?

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!

I should have explained further:
My idiopathic neuropathy is described as truncal neuropathy. Meaning it only manifests in the trunk of my body. The few documented cases of this type have only lasted from 8 - 20 months and are related to diabetes, which I don't have. My pain is only in the front side of my body from my chest to waist but recently has been creeping down the front of my upper legs.
If you google truncal neuropathy without diabetes you will see how little is known about it.
This why I have hope it may someday just disappear...

I am in this boat too. At this point my dr's are like well you have enough history and enough symptoms to treat for X. So we are going to try it, even though we can't find it specifically in any of our tests. I was so relieved to hear that. It has been 1.5 years of being bounced from Dr. to Dr. trying to get a diagnosis. And all anyone would say was: "Well, you have x and y and z symptoms, but not q and s. So we don't want to randomly start treating for some disease or problem we might think you have but aren't sure of." It is so frustrating.

And it is so true that it is really much harder when you don't have a diagnosis, because not only do Dr's and other med. people think it is weird, but when you have to explain to your college why you are out sick, or your work you have to give them a list of symptoms and explain the whole thing just so they don't think you are faking.

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...

I have DDD and also had a botched angio that caused even more nerve damage. For the first few years I was told it was all in my head, but I refused to listen to that even though it meant that it was hard to get treatment.

Then one day they did an MRI and a neurologist sent me for back surgery to fix the back problem. That is when the surgeon came in and said there was not enough wrong to do a surgery. She then asked me if I had ever heard of RSD, I had not.

My doctor didnt think it was that, he leaned more towards the PN from the L1 - S5 nerve damage, but sent me to a vascular surgeon. This doctor looked me over and was fairly thorough, when he says you have RSD. Now mind you no one had told him what the back surgeon had said. So it was RSD. This took over 3 years from injury to knowing.

There is no cure, and still some doctors say it is in my head, but at least the knowing is there. So I totally feel for you all without the knowing. You might look into the RSD thing, you never know

Fran,
MCTD, Mixed Connective Tissue Disease, has many of the components that you have mentioned, including Sjogren's, Raynauds, Esophagus issues, and neuropathy, myopathy etc, and tends not to have a lot of positive blood tests to show for it. Connective Tissue Disease is a bear to have diagnosed, and treatment options are somewhat limited. After I had run out of options, I was finally diagnosed after review of very old pathology slides combined with new information.

My journey has taken 10 years since the 'very old pathology slide' was taken. That does not count the decade prior to that when 'I told them I was sick'. Hang in, the truth is out there. Oh, one thing, with Connective Tissue Diseases, the 'truth' does change with each doc, each test etc. (We used to call those things, mistakes, white lies or down right pathological lies-but we won't get into any of that.) Your symptoms smack of autoimmune disease and the way it is diagnosed depends on the very fickle science of rheumatology, and the very elusive results of tests we have.

Something will show eventually. I won't tell you to hang in there, you have heard that before. It is difficult, but, take what joy you can from life, and keep looking, you will eventually find that answer. You may PM me if you like...I check in every few days to read. Take care.