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!

Thanks for responding Mrs D. I only have access to my new rheumatologist via the NHS for now. My skin biopsy was sent to one of the best immunologists in this part of the U.K but only occasional deposits of IgM showed up. I haven't tried antihistamines for a while but that's a good suggestion. I used to live on them when I was younger as I've always struggled with insomnia and with allergies. Now it's just the insomnia and this awful parasthesia. I'll get some antihistamines over the counter and see if they help. Many thanks!

I'm using a natural toothpaste that i bought in a health food shop now Caroline2 - had high hopes for a week but now the burning in my gums and awful tight sensation in the front of my mouth and nose is back with a vengeance. Not to minimise your experience but I guess that you do at least know what triggered your PN symptoms. Mine are just so widespread now that it's as if my peripheries and face were full of that stuff that pops in your mouth - space dust we used to call it as kids. I get so paranoid about foods and all medicines now. I need to know if this is the legacy of a drug intolerance or part of my autoimmune problems before I agree to try anything else.

Obviously I don't know why you are experiencing all this nerve issues and you said you don't know either. And yes I know my issue came from hip surgery nerve damage.

I don't tell anyone what "to do" I suggest to my friends and family and they see my enthuasium and my generally good health. I can only say why not give grape seed ex a good trial and see IF you can get some help from this OPC. My friend has as I said and she's had nerve issues for many years.

I am so in tune with what grape seed ex has done for me for 2 decades and I listen to voices and know especially when an older person takes OPC's they have strong clear voices as their blood and circulation is working so much better. It's hard to get this across online but this OPC is short of a miracle and maybe some kind of a miracle too.

My grandkids 15 and 18 both take it for general health as does my daughter who is 52, they are hooked.

Anyway, that's how I feel....if you take a pharma blood thinner then you can not take both.

Thanks Enbloc. I was hoping the same re new doctors. I'm so busy just now and it takes such a superhuman effort to keep fighting my corner.

I do have a new rheumatologist and I saw him two months ago. Unfortunately the wretched NHS cutbacks have meant that there aren't enough typists to type up his letter so I'm still waiting to hear back from him. I did phone the rheumatology nurse helpline in this hospital and the nurse asked him if he could shed any light on my worsening parasthesia and horrid mouth discomfort. But apparently he said that my low inflammatory markers meant that I wasn't flaring up and therefore any symptoms must be dealt with my my GP ie not part of the systemic process. Not very confidence inspiring somehow and this new GP said that if any of my autoantibodies had come back positive then the rheumatologist would have contacted us by now.

So I'm not feeling very positive really. I think that this is a small country and the rheumatologists and neurologist are closing ranks - keener not to undermine each other than they are to help me. And because I'm part of the NHS I haven't got access to the more specific breakdowns of my skin biopsies although the rheumatologist was quite interested to have a copy of a result from a skin biopsy of my neck in which an immunologist found IgM deposits a few years ago. I do have my immunoglobulin test results back from this rheumatology consult 9 weeks ago and they are all within range, albeit at the higher end.

So I don't think they are going to investigate my neuro symptoms any further and so I'm really hoping that things will become clearer (in a tangible way) once I'm off steroids. I haven't had any more infections or GI problems since recovering from the post gallbladder operation and the pancreatitis and anaphylaxis have just been listed on my notes as "mild allergies"! I think I'm going to have to keep away from all doctors until I just can't.

I'm determined not to get landed with fibromyalgia as a diagnosis so avoidance seems the only way just now. I do see another oral surgeon sometime and my rheumatologist again in January. I'm also having my bloods checked because the Ace Inhibitor I'm now taking for hypertension has made my kidney function dip a bit. I keep wondering if I actually have Lupus but now that one professor has said that I can't have due to my age and stage - none of the others will put it on the table as a possibility.

A friend told me recently that a really close friend of hers was told over and over that her symptoms were a product of her mind/ anxiety for about 15 years. Then, in her mid sixties she was retested for Lupus and bingo it showed up positive - by which time she had sustained such severe organ damage that she died a month later. Horrible story and I admit that it does haunt me a bit. However I'm really not sure what I can do now apart from continuing to tweak my diet and take the odd sleeping pill.

You'll want to choose the newer antihistamines, as the old ones can cause dry mouth --which you don't want.

Ask your pharmacist to recommend the UK equiv. of Claritin or Allegra.

The second column has the types you should look at in UK...
http://patient.info/doctor/antihistamines-pro

After reading another thread, I have to ask...have you considered Lyme disease as a possibility? Your symptoms (to include odd infection reactions) could fit right in line with Lyme. According to a couple articles I've read, Lyme incidents in the UK and Scotland have increased significantly over the years.

You would reallly need to have a LLMD for proper testing. I think it's worth considering.

Sorry for late response enbloc. I was tested for Lyme with a lumbar puncture in January - I think it was called cryoglobulin - my neurologist had it done and it was negative. I would have been surprised if it had shown up positive. There are no deer or Lyme in the part of Scotland I've lived in for the past 26 years and I've never come into contact any tics as far as I know. The area of Scotland I've moved to,on the other hand, does have Lyme, although not on the same scale as in the States. My cousin who lives in France has it so I'm aware of the symptoms it can cause. Many thanks for the suggestion though it would make a lot of sense of my symptoms if I had it.

A leading immunology and rheumatology professor I met yesterday (he was giving a presentation to a small group of us with RA) said that he believes that the early stages of acute disease activity can cause subtle erosions that probably would only show in MRI. He thinks that for some people the inflammatory process causes a problem in the neuro pathways which in turn causes a kind of chronic pain disorder for some.

Not psychosomatic - he didn't mention Fibro - and also said this wasn't the same as neuropathy so it probably wouldn't show in nerve conduction studies. He mentioned Vasculitis which most people with connective tissue diseases will have to a greater or lesser extent. It was very interesting although he admits that he is usually not able to help or treat patients with this type of pain effectively as the neuro response has already been triggered/ set in motion during a phase of very active disease.

I would ask for another blood pressure medication. The ACE inhibitors, increase bradykinin in the tissues.... causing swelling and inflammation. I had a huge reaction to lisinopril... and now I have a diagnosis of hereditary angioedema, + drug induced lupus.

So ask for another family of drugs (no ACE drugs).

https://en.wikipedia.org/wiki/Bradykinin

Some people just cannot handle ACE inhibitor drugs.

I've never heard of this before - I will try it if i can find some. Thanks.

Thanks Mrs D. The GP who prescribed it thought hard about it because she knows I have a connective tissue disease. I don't feel I have any side effects from the Ramipril at all - no lightheadness or worsening of symptoms. But simultaneously I am now down to 1mg Prednisolone so put most adverse symptoms down to this taper and am focussed on getting off it fully soon. I have a full blood count taken on Tuesday with my BP to see if Ramipril is okay for me as my kidney function had dipped last time. So they may take me off it anyway if eGFR still low.

I had a skin biopsy not a nerve biopsy Pyr2 and I did also have paired oligloclonal bands in my spinal fluid and blood, which suggests something systemic is occurring. I'm also diagnosed with hypothyroidism and RA - both autoimmune - either of which could be responsible for this horrible parasthesia. Sorry to learn about your heart problems. I'm sure you know that many connective tissue diseases such as lupus, RA, Sjogrens, Scleroderma and Vasculitis can all cause problems with the peripheral nervous system as well as the CNS. If you have RA then your risk of getting cardiovascular disease increases by 50% in much the same way as it does with diabetes. Also these diseases can present as negative in your antibodies so this doesn't exclude them - just makes them less likely. Hope you get answers. Will keep an eye out for your posts. Mat

Was he trying to say that the minor erosions were damaging the ganglia? I thought we had discussed this before....ganglionopathy. This is quite difficult to detect and confirm as there is not many tools available to inspect the dorsal root ganglia. Johns Hopkins has a new MRI/MRN that has this capability, but I know of no one else that does...certainly not in the UK/Scotland.

This is, as he stated, hard to control pain. But I will say that there are pain mgmt options that work well with this type of nerve pain. The Fentanyl patch is one. It works great on nerve pain, yet not as great on bone pain (from RA).

So, are you going to get an MRI to confirm the erosions, so you can get on a new and better pain mgmt plan? Have you ever had an MRI (on brain, neck, spine) during your work up? If so, what did it show (any signs of erosions or even minor deterioration)? You are right...this type of neuropathy (ganglionopathy) does not show up on nerve conduction studies or EMG's. It sometimes doesn't even show in skin biopsies (except the condition of the fibers may be effected--but yours wasn't checked for this).

What's your plan now that you've talked to this professor?

The trouble is that I wasn't speaking to him as a patient I was attending an RA charity AGM as a volunteer. So it wouldn't have been appropriate to get more specific. He travels the world and I'm confident you couldn't get a more high powered and knowledgeable person. But he only works in an NHS capacity and only for one and a half days a week - abs only takes patients at the very far end of the disease spectrum with severe synptoms and damaged joints and organs. So no point in trying to get on his list as I'd only ever be seen by his registrars/ juniors.

I don't really know what to do - but he does know my new rheumy and I might mention this when I see him next in January. I would submit to any tests that helped work things out. My brain was MRId in January on the same day as the lumbar puncture. It wasn't the most high powered scanner so might have missed something a friend told me. It just showed vessel disease approximately in line with my age. I do have a flame haemorrhage in one of my eyes, Morton's neuromas and my ANA and Rheumatoid factor were inconclusive/ equivocal rather than negative. I will see another oral surgeon sometime but it seems that getting MRIs done is impossible because they are very expensive and knowing which part to scan is hard when the neuro symptoms are so widespread in my case. Mat x

I think maybe reconsider getting on his list...his "Juniors" would be trained by this great doctor, so I think they would look at your case based upon this doctors' views. And sometimes in difficult cases, the Juniors may go to him for advise about your case...even though YOU don't get to see him. You can also bring up (to the Juniors) your meeting him and what your learned about his impressions, etc. Just a thought.