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.

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'm With You
 

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.

It's taken nearly 6yrs for them to find out I have vasculitis,and if I hadn't pushed for a nerve biopsy,I would be none the wiser.My Neuro thinks the vasculitis,kick started the PN my GP thinks it was the other way around (makes no difference to me) To tell the truth,I still think they're missing something.If it takes me another 6yrs to get the final results, so be it..........

I was just dx with SFN after spending almost 1.5 years with the Mayo here. My dx came from the neuro doc I was seeing before Mayo (I went back to him recently). But he just said I had SFN and adjusted my Gabapentin up to 3600mg a day and added 100mg per day of Tramadol. When I asked him why this happened, he said much of the time they cannot pinpoint the reason. My assumption is that due to insurance reimbursements, they don't want to spend the time trying to find out exactly why you have it. The insurance companies probably don't want to spend the cash. I guess I should have insisted on some further testing to find the origin, but I didn't. He stated that it is usually progressive and I have to learn to live with it and come back to see him every year. He worries about loading up more narcotics since I have a very high tolerance to narcotics.

These drs. make me so stinking mad....why won't they take the time to figure out what is wrong with us?? My doc said that there are 100 possible causes for PN and we may never know the cause. So, I said "well let's start testing"... I have paid into an insurance plan for 25 years (this is the first time I have been sick) so it's high time I got my moneys worth.

So, we'll see just how far my doc will go...probably not much farther.

Leslie it might be time for a new Dr........:Scratch-Head:

You are correct, it is time for a new one and I am searching right now. Also, he gave me a referral to Mayo and Hopkins so hopefully I can get into one of those places.

I've gotten that too. I'm like do you mean we will never know as in it is impossible to find out... or just too expensive for the insurance company to cover, and therefor we aren't going to try too too hard. :confused:

It makes you want to tear your hair out after the 10th person has told you this. :rolleyes: