One blunt doctor and where to go now?
 

Ive just commented on some else's post here about bone pain with PN because this describes mine to a tee as well - only mine also affects my hands and face as well as legs and is bilateral.

For me I've found that all the tests have been inconclusive apart from confirmation that I have a connective tissue disease/ systemic process occurring. I do hope my doctors are right to assume it's benign - but it certainly doesn't feel this way to me. It seems to have progressed to the front of my mouth and nose now so I feel as if this part of my face is in a vice or being sucked by a vacuum nozzle. As with all the other burning pins and needles and shooting pains (not an issue anymore thankfully) no one has yet been able to give me a reason for this awful predicament I'm in. Wet sensation in legs, freezing or burning extremities, sweats, panics, hypertension, palpitations etc and widespread burning parasthesia all through the night.

I've tried four disease modifying antirheumatic drugs now - had anaphylaxis and pancreatitis with three and severe GI problems with the other. I've tried Amitriptyline, Gaberpentin and Cymbalta and had heart palpitations, mood changes and dizziness so I've quit trying all these kind of drugs.

Steroids and NSAIDs work for me at higher doses but they cause me other problems long term so I'm having to taper off Prednisolone now and the PN is flaring. Because nothjng has shown up in nerve conduction tests, brain MRI, EMG, Lumber puncture (apart from paired Oligloclinal bands) or skin biopsies - the neurologist and rheumatologists X 2 have all suggested there's nothing more they can do for me.

I haven't found anything that helps yet and I have tried food eliminations, suppliments, cutting out sulphates in toothpaste because I also have this in the front of my mouth and nose now.

The doctors are implying that it's psychosomatic (Fibromyalgia hadn't been mentioned but I feel it's implicit) - certainly idiopathic - but I don't believe this for one minute. A new general practitioner I saw last week told me bluntly that patients like me need counselling not steroids. My shed rate fluctuates with the pain but they refuse to check this in the area of Scotland that I've moved to. Only my CRP gets checked and it doesn't respond to my nerve pain in the same way as my ESR used to.

I'm being told by my new GPs to accept that I will have it for life and therfore have to learn to live with it. This seems to me to be a counsel of despair - if I knew I'd have to live with it at this degree of severity forever more then I'd take all my sleeping pills and have done. And yes mine feels as if it's in my bones too - foul thing it is!

I personally won't rest until I know what's causing it - because it's progressing and is now so widespread. I struggle standing still for more than a short period but can exercise fine if only I wasn't so overwhelmingly exhausted because of nights of having no sleep from the pain. Any idea what I can do next? And at what point should I ask to see a neurologist again for repeat checks - when the pain progresses to lack of sensation? Is this when it might show up in nerve conduction studies or skin biopsies or on scans at last? My body thermostat is completely kyboshed too and my sense of taste and smell keep coming and going - I either freeze or burn! It's as if I've entered some kind of hell although in theory my life is very fulfilled and exciting just now - potentially anyway!

Issues you can address
 

For me, I had to address the pain first. After the pain was dealt with(Hydrocodone 10-325) I was able to take some Ambien and get 5 hrs a night sleep. The sleep was key to getting better and with less pain there was less depression. The only side effect from the Hydro was constipation. I hope that you can get into pain management and get what you need to get sleep. I would take Hydro once every six hrs and then Ambien at night. My conduction study showed impaired signals and I still had feelings everywhere. I sense that your pain may be exagerating everything else and throwing you into a spiral of despair. I have taste and smell issues but they are not as bad as they used to be. My ears still go off like two teakettles almost all the time. I get it that this condition is a s*&^t sandwich but try to focus on the issues you can address. Sleep is essential so address your pain if you can get help in that area. The meds you talked about are not the heavy lifters that you may need. Good Luck, Ken in Texas.

Some of this may be of interest /helpful..
somatoform vs psychosomatic info results-
https://www.google.com/search?q=soma...+psychosomatic

Drs may be suggesting counselling to help with the mental /emotional part of pain..
Often they don't clearly say what, or how they mean something..

Are they hesitant to Rx stronger pain meds due to the lack of obvious test results of a cause/reason?

I haven't read all of your posts , not sure if anyone mentioned possible CRPS/RSD?
For more info on it-
http://neurotalk.psychcentral.com/forum21.html

I don't see how anaphylaxsis and pancreatitis, or infections are psychosomatic.

It is possible that you are now suffering from the immune suppressant drugs. Doctors will typically not respond to damaged patients by other doctors. They will try to divert you from those damages in any way possible...even saying it is YOUR fault.

Can you find an immunologist? To test you for an immune disorder, or allergy. Do you have any relief from using an antihistamine?

I've said this before here, a friend with many years of neuropathy and she took neurontin and gapapentin over the many years, she is now off those drugs as the grape seed ex is giving her a lot of help, she takes it now about 5 yrs and feels so good about it and her progress, she has her adult daughter on it. This friend is not into alternative healing but she is now to a small degree.

I ended up with nerve damage from hip replacement and got rid of the 5 yrs of burning on my right thigh after taking Inosine and Sphingolin for 3 months. If the burn returns, I'll get more of these 2.

I don't use store bought toothpastes, make my own with coconut oil, baking soda, some MSM powder and some clove drops. There are nasty chemicals in those toothpastes. There are some store bought that are more clean, but one has to search for them.

I am the one who posted the bone pain question. I feel your pain.

Lets parcel this out. You have half your answer, though, don't you? Cant the Hashi's which is an autoimmune problem - be the "cause" of all this. I realize you are frustrated b/c all of your nerve studies (including biopsy?) are normal. Is that right?

I am a bit envious b/c I don't have the "cause" part yet or the "result" part yet! I have had an elevated IgM for 15 yrs and no one can tell me from what. I always show an anticardiolpin antibody IgM when I test and I have had reactivated epstein barr virus for the past two years (also an IgM) but no one can tell me for sure that those are what is causing my issue.

So, I am going to an immunologist mid NOvember hoping he/she will be able to say what is going on with me as well. I also have mitral valve prolapse (which needed open heart repair) and some hypermobility issues so I believe I have some undiagnosed connective tissue thing going on as well. My rheumy has me on Plaquenil just to see my response. Im okay with that, at least we are trying SOMETHING. Its only been a week.

I realize you probably had a pretty good workup, but it is essential that you get a serum and urine immunofixation/electrophoresis done with a serum light chain analysis to exclude some things. That will be very helpful to you to see where your immunoglobulins range etc. I have a slightly off kappa/lambda ratio which has me worried, although the dr not too concerned.

I really feel for you. The pain and sensations are horrible. Mine cycle through all my body but there was a long stretch this summer when I was getting the face burning along with trigeminal neuralgia symptoms and feeling like my cheeks were swollen and I was "teething" and eyebrow heaviness and eye burning.

I personally am not the type to stop trying to find answers - I am dogged - but that is not getting me anywhere. I have been to at least 30 drs in the past two years and no real answers. I have to say to myself at what point is this ruining me and becoming a fixation. Im depressed, Im scared, and my whole family is done with me b/c im so fixated. I just want to know what it is so I can go on. That's it. Just an answer. I even paid to get my entire body CT scanned when this first started, I was so sure they were missing something and irrationally, I still feel that today. I may not be the best person to counsel you know b/c I am still "in the muck" so to speak, and probably a good 6 weeks away from getting any real answers given the timing of my next few appointments.


And just so you know, I personally have had all negative EMGs too to date - I haven't had the nerve biopsy yet, so if mine is negative, Im in the same boat as you are....

mrsD mentioned antihistime above. When I got on this OPC actually Pycnogenol which is a powerful OPC as well, a history of allergy/sinus issues left me. I took antihistime drugs and did the allergy shots etc for so many years and no help. I have not bought a antihistime drug in 20 yrs....grape seed ex and pycnogenol are natural antihistimes.

I didn't recall this at the Pycnogenol lecture in 1995, but I do remember hearing, it may prevent cancer. The major reason I got on it. Then found the allergy/sinus issue gone in my body.

http://www.healtharticles101.com/gra...ergies-review/

I ditto the suggestions by MrsD for the immunologist consult. With your history of infections you may have a primary immune deficiency. Some very simple labs can determine if this is likely (IgG subclasses for one).

I know you had a skin biopsy, but if memeory serves me correctly, they did NOT check the morphology (condition of the fibers). It is possible to have normal nerve fiber density yet damage fibers...that can be causing the neuropathy. Biopsy tissues are typically saved and stored, so you can likely have it re-examined at another facility to check for segmented, swollen or tortuous fibers. This would at least help define your symptoms and take the 'it's all in your head' off the table.

The immunologist will also like have better input on the paired Oligloclinal bands...which I think definitely needs to be followed up on.

Someone needs to be looking outside the box. I agree that doctos don't like getting other doctors unresolved problems...and usually dismiss them instead of taking the time to reinvestigate to find what the other doctors missed.

I was hoping you would have better resources and doctors after you moved. Doesn't look like it has started out that way...but lets stay optimistic that someone is going to open the door for you (maybe that immunologist).

Thanks Ken. The drugs might have different names as I live in the UK/ Scotland. If you mean Hydrocodeine then I have tried this and it helped a bit. But I can't risk constipation as I got it badly last time and it makes me very ill. Zopiclone works brilliantly for me but my GP will only let me take it once or twice a week. As it's a prescription drug I have to stick to their recommendation on dosages. I might treat myself to codeine tonight though and see if it helps.

I do agree about sleep although it doesn't cure things but it certainly helps. I will ask for a referral to pain clinic but I told this brash doctor that I'd wait until I've heard back from my rheumatologist. Also been taking an Ace Inhibitor called Ramipril for high blood pressure so I'm needing to be methodical. Mat

Thanks - yes I think that's what this GP doctor was suggesting because he referred to it as a chronic pain disorder. I felt this was a bit premature because he appeared not to have read my notes and yet was telling me that this is incurable and psychosomatic within minutes of me describing the parasthesia in my mouth. Your link about psychosomatic V Somatic was interesting but I'm inclined to think my symptoms are neither although stress and anxiety also play a large role in our health and in the autoimmune system too of course. But I would argue that the pain will one day be found to be part of a recognised medical condition for me - and anxiety/ stress will inevitably follow shortly behind. As opposed to illness born of stress/ anxiety.

So I'm not sure that I am ready to go down the route of treating it as chronic pain yet. I was diagnosed with Rheumatoid Arthritis four years ago and have Hashimoto's Hypothyroidism. Surely these diagnose's give me reason to think that my PN type symptoms might be better addressed as part of my autoimmunity than with drugs that can only ever mask?

They are hesitant to offer me stronger drugs because I'm highly intolerant of many drugs. Also I'm very drug averse - and yes the two probably do go together!