Pain has gone away yay! - floaty, spacey numb woman!
 

It has been weeks since I had pain of the sort that has dominated my life for years - the burn chill ache deep in my legs, burning hands etc has all but vanished! I still have pins and needles faintly tingling and a creepy crawling right up my legs - warm flushes up my arms and back and neck. But no pain at all? Yippee!!

Instead of pain I do have loss of sensation I think. Could this be the next stage of PN possibly? We've had a terribly stressful time with our house - have moved into more rental accommodation while lawyers, plumbers and timber consultants all try to get things sorted out for us. So I'm tired out and the dizziness has escalated - and when I say dizziness I mean all three types ie disequilibrium, vertigo and dizziness - but only when I'm on my feet. I'm fine when lying down or sitting still. So I don't know whether this is a proprioception thing or a vestibular one or both?

I did find a thorn embedded in one of my toe pads a few days ago which I'd put up with all day as a minor irritant - so numbness is only partial - same with my fingers and my face.

Meanwhile I saw some horrible GP about getting my Vit B12 checked. She agreed but I got a lecture about how this rarely changes. Well mine had gone from 360 to 620 in two years so she was wrong about that at least! Then I told a nurse that I was suffering from severe constipation and stool changes. She gave me Laxido to take twice a day, examined my abdomen and refered me to a GP because she was concerned about what she felt. Told me to bring a stool sample in as well.

Back to horrid GP (only one available - I wonder why?!) who couldn't find nurse's report/ referral and told me I was there on a false pretext, binned my stool sample and patronised me horribly for asking about my high inflammatory markers. I had only met her twice but asked my usual doctor for a printed summary to move to new GP in new locality with. I found she had written on my notes that in her view my symptoms were psychological/ functional and suggested that a referral to some mental health counselling might be the next step for next GP.

I also got my last neuro's letter printed so then found that he had started this functional thing in relation to last year's left sided hemiparesis - which I agree was due to trauma from surgeon cleaning out deep wound infection with no anaestetic, two weeks in hospital from Imuran allergy (pancreatitis) and a UTI sepsis, pneumonia and trauma caused by coming off Cymbalta. I think even horrid GP would have succumbed to a few stroke like events under those circumstances? But the notes also clearly show the nurse referral for abdominal review and her concern. So I've written a letter of formal complaint now and plan to give this to new GP. I would avoid doctors from now on but my face keeps going hot, sore and swelling up and the nurse took me off Amlodopine again to see if it resolved. Unfortnately it hasn't so I need to review Losartan next. All such a muddle!

I see another neurologist in a different much larger teaching hospital at the end of this month. I've googled her and she's a young German woman who specialises in Parkinsons. Not sure what she will make of my crazy journey - if anything.

Meanwhile I still have a diagnosis of RA that has gone astray along the way somehow, paired Oligloclonal bands which no one of the doctors seems to understand, a history of allergies as long as my arm stretching back to infancy, fluctuating inflammatory markers CRP, PV and ESR and a high total protein. Surely these don't go with functional/ psychological do they?

So it's me and my walking stick for the time being - prodding the ground for black holes, spinning if I turn my head quickly, shifting if the lighting changes, having to stop mid stride if the floor patterns or ground surface alters. The best thing about life just now is that I love our new home and location, Spring is here so Raynauds is fading, and am having loads of ideas about how best to represent this anaesthesia business in my drawings/ artwork.
Mat :)

There are certainly cases--
 

--in which nerve damage that started out as painful eventually progressed to numbness or lack of sensation, though, as you mentioned, that may not be a complete lack of sensation put patchy.

Many neurologists will say that indicates further damage or outright dying of the nerves that are involved--damaged nerves still produce sensation, albeit erroneous sensation not consonant with actual stimuli, but "dead" nerves are more likely to be numb or lack sensation as they can no longer transmit impulses. This is why people who have some of the most painful neuropathies are often described by doctors as having "mild" neuropathy while some with numbness may be referred to as having "moderate to severe" neuropathy--the doctors are in those cases describing their perception of the extent of the actual damage to the nerves.

I think it's an open question which is worse and/or harder to deal with. Surely some have said they have prayed for the numbness when dealing with the severe burning/dysesthetic pain, but people with numbness often have their own problems with lack of proprioceptive feedback and a lack of position sense, which makes physical activity difficult even without any damage to the nerves that communicate with muscle.

In the meantime, I feel for you and hope you can find SOMEONE in the health system there to take your situation more seriously and to try to put together the various symptoms into a cohesive diagnosis (and yes, this does sound like some sort of autoimmune process, but perhaps one unique to you that doesn't fall into any of the standard pigeonholes).

Thank-you so much for confirming that the loss of sensation may not be a good thing. I did have quite extensive nerve conduction and MRI of brain and neck done in January 2015. My previous GP also took a skin biopsy from each calf a year ago and nothing showed up. It's horrible not feeling believed about all this. Although an oral surgeon said that he's quite sure that my inflammation levels and paired o bands and the fact that the dizziness/ disorientation disappeared while I was on steroids for six months signifies I have an autoimmune form of neuropathy.

It isn't a great thought knowing that nerves are dying and causing me to be dizzy and disorientated. But until I see the new neurologist there isn't a lot more than I can do. Thanks again for your support.

i have also over the years gone from painful to almost fully numb in both feet past the ankles, though i still get occasional stabbing, squeezing or burning pain. I still get the constant broken bones feeling in my feet when standing or walking.

the area above the dead numb area of my legs to past my knees is also numb but not as deeply numb, although the deeply numb area continues to expand upward year by year.

i have definite balance problems due to the numbness in my feet and have to be very careful to check to see if i injured them or stepped on something such as your thorn or if i have any wounds since i cant feel them.

I also as of late am having some dizziness problems, mostly when i lay flat or get up from laying or sitting. also if i look up i can get dizzy. after 14 years i think my PN may be spreading to my autonomic nervous system.

Thanks. Yes I believe my autonomic system is affected too. Do you have a diagnosis/ cause and are you on any treatment for yours at all?

mine is from toxic exposures. the only treatment i am on is for pain, amitriptylene and topamax.

im dizzy again today for most of the day, going to the GP tomorrow to see if i perhaps have an inner ear infection. the strange part is that i am dizzier sitting then standing. when i stand im dizzier at first but if i remain standing it lessens and i can walk around. when i sit, i stay dizzy.

It's horrid being dizzy. I'm the other way round from you but I think mine is autoimmune related.

When my PN was first diagnosed, it was already profound. I had progressed though all the stages (and pain, I guess) without realizing what was going on.

My feet and legs don't hurt, because they are numb. My SFN pain is controlled almost completely by 3600 mg of gabapentin.

The pain I do have is usually from my severe osteoarthritis.

WE all progress differently, but when the nerves are 'gone' or almost gone, there is little pain left.

Hugs, ElaineD

Mat,

There are several posters that report pain subsiding and numbness taking over. I agree with Glenn, that it can be a sign of severe damage or dying of the nerves. This needs to be reported to your neurologist at the end of the month and a new skin biopsy taken or follow-up NCS. If there nerves are this damaged, then something would show on biopsy.

I think it's times for a full autonomic battery to be done including tilt table, echo, holter, 24 hour BP, QSART, etc. They need to get to the bottom of this for you.

Sorry for delay responding - I never receivec e-notifications for these comments. I agree with all you say and hope that the new neurologist in new hospital will undertake further tests now that the pain has gone but been replaced by a degree of numbness. I don't think the dizziness is caused by proprioception issues entirely - because I had it many years ago and as you know my last skin biopsies taken by my GP in April last year came back negative.

The dizziness has affected me for two years now apart from when I took steroids and it disapeared within a day. This makes me think it's an inner ear/ vestibular problem. Both my sisters are profoundly deaf from birth and one of them gets something similar when certain frequencies are being played in music. Also both sisters have hypertension and my dad had severe peripheral neuropathy, hypertension, often fainted and always carried a walking stick. He also had Atherosclosis as did my mum (Atherosclosis killed both of them, both aged 73 and both suddenly). I too have mildly diseased carotid arteries and am wondering if all this is more urgent than the doctors realise for me. My dad had a massive silent heart attack when he was only a little older than me - he and my grandad (also died of heart attack at my age) were both diabetic so it's all in the genes I suppose.

On the very plus side I saw a new GP yesterday in our new health board area. She was really good and she's referring me to rheumatology at the new hospital. I explained about the other doctor saying my problems were psychological/ functional. Unprompted by me she said that functional disorders aren't usually characterised by high inflammatory markers or paired oligloclonal bands. She wanted to know what my rheumatologist says about me still having these when my RA has gone away.

I gave her a copy of my letter of formal complaint so it can sit with the relevant notes re psychological functional - also showing that this doctor ignored the fact that I was there to speak about my tummy issues and ongoing constipation and marked stool changes.

Also I have found that my immunoglobulin A has been raised both times it has been tested but I'm not sure yet if this means anything or why my doctors have said that all my immunlogy panels were negative. They are only slightly raised but I feel this may be significant nonetheless? Research research!!