Im sorry about your pain and struggles. I know Im late to the thread and sorry if I repeat or missed something in the responses. I was dx with PN and RSD at 28. It has been about 6 years and I still after almost every test and specialist dont know the why behind all of this.
I saw you state Cleveland Clinic which I did go to and was not happy wth my care. Im not saying others should not go but just my experience. My best doctor actually I found by calling a university/teaching hospital in my hometown so if you have a similar hospital near I would suggest that.
You stated you are neurontin but have you thought of seeing a pain/anestesologist? For myself this type of doctor did more with pain control and even giving insight into possible dx etc then my neuro. Also you are on a low dose still of neurontin so have you talked to your neuro about that and or adding something else? Have you seen a rheumatologist? Have you thought of getting another neuro opinion? How is your general doctor? I know you stated MS was ruled out from the scan? Was that an mri of your brain? Have you had one of your spine?
In your past can you think of anything like being ill,an accident,injury,etc? Anything in your health or life that may even if the smallest chance could add insight?
Lastly when you go to your doc apts do you go with a parent or someone? I just ask cause sometimes it can help to have someone there with you. I often feel less rushed. I encourage you to keep a record of all your tests as well.
Sorry I dont have more answers for you. I hope things start looking up and try to take things one day at a time.

To daniella:

I'm sorry you had PN for so long. I don't know what "dx" is or know much about RSD, either. But I'm curious were you ever on those antibiotics that cause PN, like Levaquin of Cipro? If so, did your PN begin then?

Also how have you progressed since the first year of your affliction? Have any of the PN pains gone away - specifically the Nerve pains like stinging and electric-shock type pains.

Most people I've talked to with PN for such long periods of time have healed quite a bit and are left more with muscular and joint aches, kind of like a bad case of arthritis as well as the psychological/mental damage such as anxiety and brain fog. Still, I'm told their main intense "nerve pains" have faded away.

I'm curious if it's this way for you as well. I'm just trying get an honest understanding of how it effects others. I know everybody's case is different than other, so I can't say you already know what people like me and Mustang should expect - but your experience of this over a long period of time, should give us some insight into dealing with similar circumstances.

So I'd really appreciate knowing what you can share about this stuff. :cool:

i went to an appointment at the university of florida today. the neurologist did a repeat conduction study and said the test was normal. i dont believe this for a second because my last one showed neuropathy in both legs. also he said he doesnt think i have small fiber neuropathy and said he thinks i have a "migraine aura". i didnt believe this crap for a second either. i know my body and i know what i go through. im angry that i drove 2 hours from orlando to see this guy and thats all he had to tell me. he did no skin biopsy, no spinal tap, no bloodwork, nothing. also he said that a skin biopsy is pointless because even if it shows small fiber neuropathy theres nothing you can do about it anyway. that statement proved to me that he simply did not care about me and waa just rushing me out. luckily i have a female neurologist who seems like shes doing something to try to find out but shes not ready to send me for a biopsy yet either. why dont neurologists like to send ppl for one and why is this test so uncommon if its critical for determining small fiber neuropathy???

Mustang I am sorry to hear about the apt. Trust me I understand the frustration. I remember driving 4 hours each way for an apt with a doc who spent 5 minutes with me. Anyhow I remember when I was wanting an mri of my ankle and my neuro would not order it. He would just order the mri of the brain and spine. He stated it was because it was not his area of specialty and if I wanted the mri I need to call the orthopedic I saw which I did and he ordered it. So I wonder with the bioposy if you should see if your gp could order it or a rheumatologist or the specialty who works with that?

Jesse thanks see my doctors feel that my pain is from the RSD and not from the PN. I do have more of the symptoms of RSD then I do of PN though some are similar in both conditions. I was not on any anti biotics before this happened. My condition I have pain 24/7 but it varies in degrees with sometimes no connection I can make of why. I try to do the best I can to keep moving because I dont want to atrophy. I have went through all the mental aspects and for myself I just try to stay as calm and present in the day as I can. I am a worrier by nature with extreme anxiety which in no way helps the condition.
If anyone has any questions or wants support I am email away too.
Hang in there

Thanks for sharing, Daniella - I'm assuming then that most of your RSD pains are muscle & joint aches and less of the shocking Nerve Pains. I really hope you feel better. I'm a very anxious person myself - I know what that feels like.

Mustang:
Don't let that bad appointment get you down, man. My 1st appointment was total crap, too. My 1st neurologist said I had Diabetes as in diabetic neuropathy. After a whole set of blood tests and such. He was proved wrong -then he was proved wrong again about Cipro -which my ER doctors later confirmed my PN to be from.

I took 7 tests to prove I wasn't a diabetic then actually got the medical notes from my other doctors, and the Cipro warnings label itself (which states you can get PN from it) and he finally agreed -but then he bumped me off to see another doctor.

But that was best for me anyway. As now I can get the tests I need. Still, if you have another neurologist working fairly well with you, consider yourself lucky. Most doctors don't like to work with so-called "difficult" patients - and you may find yourself having to learn how to "talk" with them to get the best response from them, as they hate to be questioned so much.

I've learned to talk calmly and clearly and pose my questions in a way that makes them want to listen more. Some doctors are as neurotic as me. LOL :cool:

5 min. doctors
 

I have actually spoken out, when all my questions were not answered, or I didn't feel I got a response. If they don't like it, I don't go back...ever...
They are suppose to be working on our behalf. The price they charge is outragous as it is. Good people, don't be afraid to speak up, only in this way can change occur. I wish all of you the very best. ginnie

today was a bad day for me. the burning paraesthesias were striking me hard all over my body. and i love how this doctor told me he thinks its a migraine aura. never heard of a migraine aura making people skin feel like its being burned in random spots with hot cigarette ash. im trying to be patient until i see my female neuro again. i find that female doctors are much more sympathetic and compassionate. let me tell you guys out there...unless you have a male doctor who was recommended to you and you know hes good STAY AWAY FROM MEN DOCTORS. it seems like they only want your money and have no interest in helping you at all. Also i'm thinking about going up on the neurontin. i take 1200mg- 300mg four times daily. i might start doing 600mg at night and then eventually work up to 600mg 3 times a day and see if that helps me. if anyone has any more ideas let me know.

Well, yeah - I don't want to seem sexist either -but coincidentally, my new neurologist is female and she's the one that gave me all the tests I needed, and quite a bit more attentive to my problem, even though she's extremely busy most of the time.

About the neurotin: Do what you have to, bro. But keep an eye out for such things as Edema (swelling of the feet.) If that happens, slow down on it until the swelling goes down. You'll probably be fine though. I hope you feel better, bro. ...God Bless.:)

i was doing some reading and it said when u have paraesthesias all over the body like i do its a sign of multiple sclerosis :-/

There's a simple blood test for MS. I took it not long ago and it came back negative. All you have to do is ask for it the next time you get blood-work done.
Even if it were MS, there would not be too much cause for alarm -as there is quite a high rating of doctors and patient able to put it into remission.

A lot of people get confused with MS and Muscular Dystrophy which are not the same thing, so there's more worry about MS than is actually warranted.

I don't know how many blood screenings you've had so far -but you should get a "Heavy Metals" test and an MS one, too. But don't worry yourself over this too much, the less stress you have the faster you will heal. ...I think, you'll be fine. :)