[Kiwiboy]

Well, I feel I have come up against the brick wall that is getting a diagnosis. Unfortunately, or fortunately depending on how you look at it, I am not presenting with any obvious or 'typical' Neurological Symptoms. All I have is burning and pain which can not be seen and according to my Neurologist this morning, can not be tested for. He did not want to conduct ANY further tests at all.

He conducted a standard basic Neurological test on me, as I had at the ER the other day. And as expected, all presents quite normally. So in the eyes of a Neurologist, they say there is nothing more that can be done or tested for to get to the bottom of the all over fluctuating burning I feel along with the pains in my hands. Once again I am told to address my anxiety and that I should see a Psychiatrist. Show me anyone who has physical pain and is continually told it is "in your head" and I'll show you someone who feels they are going crazy! I asked for viral testing, MMA and ANY other testing that might be useful, and he said there really were no more roads of investigation. My heart sank.

I asked the Neurologist directly "so what is causing this burning?" to which he replied, "All I can tell you is I can't find a Neurological basis for it" As with the previous Neuro I saw, I asked him to read the Pubmed article on Ganglionopathies etc and he said, he didn't believe I was suffering anything like that, when I asked him on what basis, he said it was because I wasn't displaying any of the other symptoms, loss of pinprick sensation etc.

So where does this leave me? off to see a psychiatrist for my physical burning pain? I am just supposed to accept this and get on with life? I have tried to entertain the thought that the anxiety and depression associated with this *could* be causing the burning, but the feelings are just too constant, too 'real' like I have acid on my skin sometimes. Is this at all possible? can this just go away? It doesn't feel like its decreasing, rather it's becoming more a part of daily life for me. Which is a very sad realisation.

What makes it hard is, I am losing the support of my family because they are all inclined to go with what the Neurologist says, some might say well, fair enough, but just because he can't explain what is happening, doesn't mean there is nothing happening and I'm the only one who can feel it, it annoys me that you can't see pain. But I am expected to go on as if I'm not in some discomfort?! And they all just want me to get help with my 'mental state' which is nothing other than extremely concerned for my future state of mind from being continually worn down by these symptoms.

I don't know if there are any more suggestions that can be made, but I live in hope that this may come right as a life with this all over burning, is no life at all.

[mrsD]

Peripheral Neuropathy is not a quick solve. Some patience is needed. I'd do the ice treatment on your spine. It may help if this is viral.

Some systemic burning can be blocked with AlkaSeltzer (the one with aspirin in it). I don't know if you can use aspirin, but if you can and you have it where you are you can try that. I've used it in a pinch for my burning feet. It does not change PN, only gives about 4 hrs of relief.
Don't overuse, and get aspirin bleeding in the GI tract etc. Save it for bad times.

You should investigate gluten intolerance. You can do the gluten free diet without any doctor and see if it helps.
http://jccglutenfree.googlepages.com/

Some posters here and in the past had relief when they removed gluten from their diet.

PN requires patience, and detective work. I'd keep a journal logging what you eat, do etc and how you feel that day. You might find connections there.

I've had PN for 30+yrs, awful and not so awful...but always. It only bothers me at night sometimes now. You can learn to push the pain away. Feedback training or auto hypnosis may help you. I use the hypnosis often for my other arthritis agonies. This allows me to be mostly drug free.

[mrsD]

AlkaSeltzer has a bicarb thing that blocks the receptors for histamine in the skin. So regular aspirin will not do what the AlkaSeltzer will.

[glenntaj]

--certain types of small-fiber syndromes are very hard to find. In fact, in my case, the ONLY test that was abnormal and revealed that there was a reason for feeling the burning all over my body that I was having was the abnormal skin biopsy which showed significant reduction in intrepidermal nerve fiber density.

You should take a look at:


http://www.thecni.org/reviews/13-2-p07-treihaft.htm

--which is an excellent article about small-fiber neuropatheis and the difficulty of diagnosing them.

I'd also look through the Liza Jane spreadsheets, which are lists of tests for neurological problems (with the abiliyt to track results over time, to look for patterns), and the Poncelet and Latov testing protocols:

www.lizajane.org

http://www.aafp.org/afp/980215ap/poncelet.html

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

[Gyrene]

When my Neurologist diagnosed my PN, he was just curious enough to run some blood tests, and from the results he obtained, he sent me to a Hematologist. The hematologist ran a battery of tests, including a bone marrow biopsy. The results of his testing was that I have Waldenstroms Macroglobulinemia, a rare form of blood cancer.

With that diagnosis, the Neurologist backed off, and allowed the hematologist to begin treating the Waldenstroms. They both concur that the PN is a presentation of the Waldenstroms, and that when the WM is brought under control, the PN will fade away as well. (Hopefully) So far, with only a series of 4 treatments with Rituxan, the IgM count has continued to rise. Initially, right after the last treatment, the IgM had been reduced by only about 10%, (7,700 down to 7,100) For the next series of Rituxan, the Dr. has added Decadron, a steroid, to assist the Rituxan. Hopefully, there will be a much larger difference after the next series.

The PN has not decreased by very much so far. Days can be good, but by nightfall, it is a different story. And, yes, the anguish can be devastating. I know there are times when it takes a Xanax to help out the Nortriptyline just to get some semblance of a decent nights rest.

Good luck to you in your search. And, yes, it does take patience. That's a quality that I run very short of most days. I haven't learned to "put away" the pain yet. But, I'm darn sure working on it.

[flyfishobie]

Originally Posted by Kiwiboy

Well, I feel I have come up against the brick wall that is getting a diagnosis. Unfortunately, or fortunately depending on how you look at it, I am not presenting with any obvious or 'typical' Neurological Symptoms. All I have is burning and pain which can not be seen and according to my Neurologist this morning, can not be tested for. He did not want to conduct ANY further tests at all.

He conducted a standard basic Neurological test on me, as I had at the ER the other day. And as expected, all presents quite normally. So in the eyes of a Neurologist, they say there is nothing more that can be done or tested for to get to the bottom of the all over fluctuating burning I feel along with the pains in my hands. Once again I am told to address my anxiety and that I should see a Psychiatrist. Show me anyone who has physical pain and is continually told it is "in your head" and I'll show you someone who feels they are going crazy! I asked for viral testing, MMA and ANY other testing that might be useful, and he said there really were no more roads of investigation. My heart sank.

I asked the Neurologist directly "so what is causing this burning?" to which he replied, "All I can tell you is I can't find a Neurological basis for it" As with the previous Neuro I saw, I asked him to read the Pubmed article on Ganglionopathies etc and he said, he didn't believe I was suffering anything like that, when I asked him on what basis, he said it was because I wasn't displaying any of the other symptoms, loss of pinprick sensation etc.

So where does this leave me? off to see a psychiatrist for my physical burning pain? I am just supposed to accept this and get on with life? I have tried to entertain the thought that the anxiety and depression associated with this *could* be causing the burning, but the feelings are just too constant, too 'real' like I have acid on my skin sometimes. Is this at all possible? can this just go away? It doesn't feel like its decreasing, rather it's becoming more a part of daily life for me. Which is a very sad realisation.

What makes it hard is, I am losing the support of my family because they are all inclined to go with what the Neurologist says, some might say well, fair enough, but just because he can't explain what is happening, doesn't mean there is nothing happening and I'm the only one who can feel it, it annoys me that you can't see pain. But I am expected to go on as if I'm not in some discomfort?! And they all just want me to get help with my 'mental state' which is nothing other than extremely concerned for my future state of mind from being continually worn down by these symptoms.

I don't know if there are any more suggestions that can be made, but I live in hope that this may come right as a life with this all over burning, is no life at all.

Many of us have had to see numerous neurologists in order to get the right diagnosis. There is a saying that a physician friend of mind always says: You can't make a diagnosis unless you think of it. Many neurologist don't venture outside the box. See someone at the neurology dept of a medical school or any other facility that has a good reputation in the treatment of pn, like Cleveland Clinic, Mayo, Jack Miller Center for PN in Chicago. It is highly unlikely that you discomfort is imaginary. I am a psychologist and rarely, if ever, did I see anyone presenting symptoms of pain that were imaginary. It would have to accompany a psychotic episode which is pretty hard to miss. Your anxiety and depression could be secondary to the neurological problem. In other words, developed as a result. If your symptoms were caused by anxiety and/or depression, then treating either of those would make them go away. However, your neurological symptoms alone don't fit the typical profile of these disorders. There would usually be a constellation of physical symptoms and not only the ones that you describe. One important question that I would ask to rule out a psychological cause is: Prior to the onset of the symptoms were you undergoing stress of the nature that was unusual and were life events occurring in a way that felt out of your control. Particuarly, were there any significant changes or losses in your life?

[Kiwiboy]

Originally Posted by flyfishobie

See someone at the neurology dept of a medical school or any other facility that has a good reputation in the treatment of pn, like Cleveland Clinic, Mayo, Jack Miller Center for PN in Chicago. It is highly unlikely that you discomfort is imaginary.

I would love to see someone in the States, but being that I live in New Zealand, unless I travelled there for treatment/diagnosis, it is unlikely. So unfortunately I am stuck with what our system down here offers me. What I am trying to get these Neuorologists to understand is I would like to get as close to a diagnosis as is possible, at least by a process of elimination. But as yet, nothing has been ruled out. I have not had a single scan, biopsy, or analysis of anything. Apart from reflexes etc...the basics. It does seem that you get thrown into the idiopathic bin fairly quickly down here.
I truly appreciate the suggestions people have made and I have taken it all on board.

I don't want to seem ungrateful for all the advice people have kindly offered, I simply feel at 33 years old I'd like to do all I can sooner rather than later. Especially considering the Paresthesias I get in my hand every night. I'm aware that continued nerve compression can eventually lead to permanent damage. I couldn't believe the Neuro didn't even want to send me for a Nerve Conduction Study?! $380 for him to tell me he 'doesn't think it's Neurological' Now I have people trying to convince me to look at the Anxiety. And yes, I did have some real health Anxiety in the months before this (worried I had Diabetes, which I don't, and a couple of other things that were stressing me out), but I find it hard to believe that this could possibly be from that. I have found no information anywhere about anxiety causing pain/burning, at least, not in the fashion I am experiencing it.

[Kiwiboy]

Originally Posted by glenntaj

--certain types of small-fiber syndromes are very hard to find. In fact, in my case, the ONLY test that was abnormal and revealed that there was a reason for feeling the burning all over my body that I was having was the abnormal skin biopsy which showed significant reduction in intrepidermal nerve fiber density.

You should take a look at:


http://www.thecni.org/reviews/13-2-p07-treihaft.htm

--which is an excellent article about small-fiber neuropatheis and the difficulty of diagnosing them.

I'd also look through the Liza Jane spreadsheets, which are lists of tests for neurological problems (with the abiliyt to track results over time, to look for patterns), and the Poncelet and Latov testing protocols:

www.lizajane.org

http://www.aafp.org/afp/980215ap/poncelet.html

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

Once again, Thank you Glenn. I have read through that information. The following passage I found of interest/hopeful. Maybe I'm in the 'second group'?
"Two distinct clinical patterns emerge based on the spatial distribution of symptoms and the IENF studies. The majority of patients present with progressive peripheral dysesthesias and distal fiber loss consistent with a length dependent or dying back process. A second smaller group of patients experience a monophasic illness characterized by the acute onset of generalized cutaneous burning of the limbs and trunk followed by slow recovery. In this group, IENF studies reveal generalized small fiber loss without the proximal-distal gradient. These findings suggest direct involvement at the dorsal root ganglia

How does one tell if something is 'monophasic' is it a matter of wait and see? That it said, 'followed by slow recovery' seems like a glimmer of hope? But in saying that, the pain in my hands I suppose is presenting in 'distal' manner, but then the burning is without the proximal-distal gradient? and there is no more toxic exposure so I guess anything is possible...I guess whether it might be probable is the question.

[Kiwiboy]

Originally Posted by Gyrene

When my Neurologist diagnosed my PN, he was just curious enough to run some blood tests, and from the results he obtained, he sent me to a Hematologist. The hematologist ran a battery of tests, including a bone marrow biopsy. The results of his testing was that I have Waldenstroms Macroglobulinemia, a rare form of blood cancer.

It would be nice to think my doctors would look at every option, at least to rule it out. Unfortunately when you have a history of being health anxious about things that come to nothing, nobody is terribly interested in digging very deep. Not that I *want* to find something sinister, just rule things out. Thank you for your reply.... if anything it demonstrates I must ask more questions of my doctors. Thank you.

[ejcronje]

Hey Kiwiboy

It sounds as if we could have been related wrt all our symptoms! I'm 32 and my symptoms have been going on for about 3 years now. I went through the whole range of tests, seeing specialist etc. Nothing helped. I had whole body burning and nobody could give me an answer. Then I went to see a physician nearby my home (he was a specialist physician). He went through my results and basically said I had "some" kind of neuropathic pain, but told me that it would be very unlikely that they would find out what the cause would be. (Since all my tests came back normal). He prescribed 50mg of amytreptilene and 0.5mg of clonazepam. Within a few days I could feel relief!!! The clonazepam worked very quickly and the elavil took about a month. Now I barely have any burning except if I am under severe stress.

Please speak to your doctor about these meds and give it a try. I couldn't take any other anti-depressants cause they made the burning worse.