Total chaos! - what to focus on with neurologist next week?
 

I did post a while ago to say I'd spent a week in hospital on IV antibiotics because of a suspect abdominal sepsis - possibly relating to my gallbladder. My CRP was up at 150 and ESR in mid 60s. The surgeon thought that I had a UTI with sepsis and my GPs were convinced all my issues related to my gallstones despite an ultrasound scan showing nothing untoward going on in or around my longstanding gallstones.

I was two weeks into taking Azathioprine/ Imuran when the abdominal issues kicked off. I came off it while in hospital and then tried, after a two week break to restart last Wednesday. I had a strong instinct that it was the culprit for the abdominal pain even though my pancreas and liver tests showed nothing untoward. I am booked in for a Cholecystectomy (gallbladder removal by keyhole surgery) in early July.

So I ended up with such terrible vomiting and pain an hour after taking the
Imuran last week that the doctor had to come to my house and inject diamorphine and anti emetic in the bottom!

Even then my doctors didn't want to blame Imuran as my monitoring bloods had been okay and my CRP was down to 6.7 but ESR slowly continuing to rise so RA/ inflammatory process was out of control. The peripheral neuropathy and jaw pain were the worst they have ever been to date and stomach issues had eased.

All the while I felt exhausted and dizzy to the point of unable to walk downstairs let alone work or help my son with exam preps or my husband with cooking or housework.

So I agreed with some trepidation to take Imuran again the next day and within about four hours was doubled up with the original pain. No vomiting this time. All night my entire body was gripped with one sort of pain or another - only the top of my head was exempt!

Next day the stomach pain eased and I decided this was the end for me and Imuran, whatever the doctors said, so I took my prescribed cocktail of Tramadol, Paracetamol, Ranitidine and newly reintroduced Codeine and went to sleep. When I woke I felt fuzzy and the side of my face had gone numb and my entire left side was weak to the point of near paralysed. I thought I might be having a stroke so the doctor was called once more.

He agreed I should stay off Imuran and felt I might be suffering from understandable anxiety with these multiple symptoms but had me re-admitted to hospital - this time for a possible stroke so I was under a medical consultant rather than the surgeon. And this is a tiny community hospital in a remote part of Scotland so the chances of finding anyone to unravel my complex case wasn't very good.

But I hit the jackpot at last and was seen by a consultant nephrologist who really knew her stuff. She kept me in under watchful gaze for five nights having immediately recognised that this wasn't a stroke but something far more strange. My CRP was up at 160 and my ESR had risen into the 70s and yet no sign of infection or visible inflammation at all - just a moderately raised white blood cell count and platelets and amylase and blood in urine - which they felt could be a mixture my reaction to Imuran and constipation from Codeine. I was put on proper doses of laxative for this. By Monday morning the conclusion she and another locum consultant came to was that the gallbladder, Imuran, constipation etc were all issues that had distracted from the main problem - which is my autoimmunity is presently soaring, unchecked.

So they all feel that my appointments with the neurologist and afterwards with the Maxillofacial surgeon next week are going to be very important in establishing whether the disease process is attacking my nerves and blood vessels - in particular my face/ nose/ mouth.

They phoned my rheumatologist to explain that my CRP had come back down to 17 without any assistance from antibiotics, steroids, NSAIDs or immunosuppressants over a long weekend and therefore the neuropathic pain in my face/ jaw and peripheries must all be part of the inflammatory process because there is no sign of infection at all.

The nephrologist also took my anca bloods for possible vasculitis but said if negative it's unlikely candidate because anca negative vasculitis almost always attacks the kidneys first and foremost and mine are fine currently. My rheumatologist didn't mention steroids or when he might see me again to her but agreed that the Maxillofacial surgeon and neurologist were probably key to next move.

Meanwhile these consultants said they thought I should be having a temple arterial biopsy and told me to phone emergency number if I have any visual disturbances - and this doesn't include the dizziness.

So now I'm home armed with Dihydrocodeine and lots of laxative and the fatigue has lessened a tiny bit, the laxatives have worked their magic at last but jaw still weird and painful and all the peripheral nerve pain rages on in my legs and arms as it's done almost constantly for over two years.

So what to say at this routine neuropathy review next week? The neurologist started out in November saying he thought I had a severe and progressive small fibre neuropathy and then, after extensive nerve conduction tests, brain MRI and serum blood tests for Lyme, immunoglobulin etc and a lumbar puncture in January - and more recently a skin biopsy from my calves, he wrote saying he could find nothing wrong. So he changed his mind from progressive immune mediated SFSN to a mild idiopathic small fiber neuropathy - and nothing he felt that would warrant immune suppression. Just treat the symptoms with family of drugs I can't tolerate such as Gaberpentin and Cymbalta. End of.

What questions should I be asking of him now do people suggest? Has anything really changed? I have tried four disease modifying drugs and under the NHS I won't qualify for big gun very expensive drugs unless I have swollen joints again. But surely he can't dispute that the pain in my nerves around my body corresponds with the high levels of systemic inflammation now?

The worst symptom of all has been immense fatigue and this slight dizziness - the pain I'm used to now. It grips me in the night like a force from hell - and sort of holds me tight so I can barely move. But when I do move it is less awful - so the stillness seems to make it worse. It is definitely in my nerves and blood vessels rather than in my joints now.

Sorry this is so very long but I know that some of you have followed my story and would be very grateful for your advice on what to focus on with the neurologist under these circumstances.

Hi MAT52,

I'm afraid I don't have any advice for you, but I just wanted to let you know I read your post and and feel terribly you're going through all this. I'm glad you finally hit upon a good doctor in the hospital, though.

Just to confirm, you said you had skin biopsies done and they did not confirm SFN?

Janie

Oh, it is really concerning....what you are going thru!

Tramadol can cause dizziness. This happens for me even at the small dose I use occasionally.

Also I'd warn you about ranitidine. This may cross the blood brain barrier in older patients. I have never been able to take it...as it causes migraine visual auras for me. I don't have migraines, but raniditine causes weird visual effects that are called migraine auras. I don't like those AT ALL. It can cause headaches in some, and also odd CNS symptoms.

I'd change to another drug...see what happens. Pepcid is an alternative, but a proton pump inhibitor like Nexium may be better. The H2's have side effects, sometimes unpredictable.

Thanks MrsD. Never heard that about Ranitidine before but I don't think it's the culprit. I used not to take it but restarted it again when tummy issues began. Before that I took Omaprezole but that gave me a foul taste so I switched. Am I an older patient at 52?

I will be watchful anyhow. Tramadol made me feel quite odd so I stopped but anyhow I only took it for a few weeks - this dizziness has gone on for over a year now. It's quite mild usually but is vestibular so if I close my eyes while standing I fall and am affected by turning my head while walking or changes in lighting. It's quite unpleasant but not so severe that I can't function most of the time - just sometimes it hits me badly. I asked the weekend hospital consultant about it and he said the reason none of the doctors pay much heed to it is probably because they just don't know what's wrong with me yet and this is a very nebulous symptom.

Thanks for your concern. I still need advice on how to get the neurologist to wake up and smell the coffee about my neuropathy being related to my autoimmunity though!

Hmm. Definitely a difficult case!! So sorry you are going through all this mess.

I have to ask a couple questions: Do your symptoms increase in accordance with your CRP & SED rate? I mean, is your nerve pain worse when it's higher? Do any other symptoms change when it's higher? if so, which ones? Is your swelling only present when your levels are high?

Before you go, you need to document all that has happened in a timeline like fashion to provide your neuro. It will be easier for him to review it this way...and see each step in the order it occurred.

I'd definitely say the Imuran is OUT. If your symptoms correlate to your CRP & SED rate, then I'm guessing you feel a little better now since the levels are down, right? Is that why you have to wait for the levels to be higher and inflammation to be present (with swelling)...before you will get a chance at bigger guns?

Without knowing the answers to the questions, I'd ask the neuro for 'big gun' treatment. You may have to wait (due to NHS), but he needs to have it noted that it is to be used next time this flares. I know that stinks, but I doubt you'd be able to get it when your levels are normal. But at least this way, you will be armed with a treatment (like Rituxan or IVIG) when the time comes. Personally I'd go for the IVIG to help modulate the immune system. I also think it would be easier to prove to the powers that be with your skin biopsy showing SFN and CRP/SED rate showing significant inflammation. I also think Rituxan carries more side-effects (and you don't tolerate things well). Not that IVIG doesn't carry it's own risks!!

So sorry for all you are going through. it's exhausting dealing with all that. I may have missed something but you mentioned that a temple arterial biopsy was recommended at one point. Did they ever do one? Was the thinking that you have an arteritis or vasculitis?

I hope you find answers soon, Littlepaw :hug:

^^^^^^^^^^^^^^^^^
Oh No !!! So very sorry to read your story. Note that I have copied part of what you wrote; this is because of my history with Imuran.

Several years ago I took Imuran for one of my other health conditons/diseases/whatver you want to call it - which is Myasthenia Gravis, also known to some as MG.

The side effect I had from Imuran was acute pancreatitis. I became SEVERELY ill. SEVERELY. No details needed for this group. Note that acute pancreatitis is also a recognized possible side effect of Imuran.

When I became so out of sight ill, I was taken off Imuran; however remained on steroid (prednisone) therapy for the MG, and eventually I started taking Cellcept.

I now have chronic pancreatitis; occasional bouts. Chronic pancreatis can occur after one has an attack of Acute Pancreatitis. It is painful and exacerbates my myasthenia gravis weakness. I am monitored constantly for other potential issues related to this problem.

By the way; a disclaimer; I am not a drinker. Well - occasionally, in the past, perhaps I drank once or twice a year - at a wedding, and that was only a sip from a drink with alcohol. I say this because pancreatitis and neuropathy can often be the result of heavy (alcoholic type) drinking, and alcohol has never been one of my favorite beverages. Also, MG does not do well with alcohol.

I am not in the medical profession; but I would say to you, if you were my family or friend, that you might highly consider avoiding Imuran!!!

My heart goes out to you; I truly understand having numerous complicated and very painful and life-changing and life challenging health issues.

Stay on track, keep persistent in trying to get answers and keep as positive an attitude as you can. Sigh......I know that can be difficult.:grouphug:

How I do wish and hope that I or we or the doctors or Someone in the Universe could soon ease or take your pain away completely.

Good luck.

Thanks Littlepaw that's kind.

The two consultants I saw over the long weekend (Thursday to Monday) both felt I should have a temple aterial biopsy for GCA but said my rheumatologist would have to order this and he doesn't seem keen to do anything but wait for the "dust to settle" so he hasn't been in touch or ordered one of these. To be honest I think it might be a waste of time because I asked on a vasculitis forum and all those who had it done had negative results and I really don't need anything else invasive going on. There may be other MRI type things and I think they are hoping that the neurologist and maxillofacial surgeon might put me forward for these or advise my rheumatologist to. It all takes so long - good job that so far I'm not a medical emergency as I would be if I did have full blown GCA Vasculitis. Still awaiting the results of my ANCA P and C to come back though. Mat

Thanks Enbloc. I should have made it clear. My CRP was up at 160 this time last week and then down to 17 on Monday. This is same pattern of the previous hospital admission three weeks earlier.

However on Monday my ESR had risen to 78 from 58 a few months ago so it's been steadily rising not falling. This makes them think that it is my immune system that is causing the inflammation. The only pain I suffer presently is nerve pain. I don't know if my ESR reflects inflammation exactly - but I feel it does whereas I don't think my CRP is affected by the neuropathic pain much.

My ESR is always high and I always have some nerve pain but as the pain increases in intensity so does my ESR. The only time it lowered to 32 was when the nerve pain was much less prominent earlier this year and that was after I'd been taking Naproxen for a few weeks.

Also it seemed to subside when I had flu and secondary pneumonia in March and when I was in hospital a month ago with acute abdominal pain. But it surged as soon as the acute pain/ infection diminished. It also surges/ flares up after any real exertion or travel and so does my ESR. I will do another chronological symptom list for these two appointment next week but I did explain this to the neurologist before and he noted that my ESR was the main blood test that is always pretty raised.

The nerve pain isn't the only neuropathic symptom by any means. I get flashes of pain in my arms and hands and cold wet sensation in feet and legs as well as a feeling of crawling as if I were standing up to my thighs in cold water with little crabs and nettles. This has gone on for so long I've almost got used to it now though so the jaw pain is the worst. I would really like to be offered IViG but this is the NHS and my serum immunoglobulin was normal in January. The pain in my mouth/ jaw/ nose is exactly the same as everywhere else and my dentist says it isn't thrush, isn't root or tooth decay and isn't dryness from Sjogrens as my saliva ducts are working well.
Thanks for your help it is much appreciated!
Mat x

Let me clarify. When your CRP was 160 last week were your symptoms worse? When your CRP dropped to 17 on Monday, were your symptoms better? In other words, do YOU feel the changes in CRP/ESR?

I agree that your immune system is likely at the root of this and that is why the IVIG might help to modulate it. I understand the NHS makes it hard to get approved, but if you have a positive skin biopsy and at least a positive ANA long with your swings of inflammatory markers, it could EASILY be argued that this comes from an autoimmune basis even though you haven't identified which AI disease. This is what I think you should present to your neuro.

The pain from SFN can certainly affect the mouth, nose, tongue, etc.

Hi Mat52
Sorry to hear of the trials you're going through. Just a couple of quick suggestions (my computer's on a 'go slow' today so getting anything done is a hassle).
Firstly - did your RA originally start as a result of some other illness? eg my family has a strong tendency towards autoimmune; my father developed RA after getting Leptosporosis, my brother got RA after a bad bout of pneumonia. Could there be some other underlying undiagnosed condition that is contributing to this?

Re your Neuro review appt. Focus on what is important to you - both in imparting info to the doctor and getting your questions answered. Sometimes they don't want to commit themselves to specific treatment choices - especially if your symptoms are in remission on the day of your appt. Try asking them if it would be possible to get an urgent appt. during the middle of a flare. Also see if the nephrologist can forward a report to the neurologist before your appt. Her input could be important.

Is the pain in your mouth definitely TMD or could it be Trigeminal Neuralgia? - I've got both - fortunately both under control at present. It's good you're seeing the Maxillo Facial specialist as this is how I got my TMD sorted. They made a custom fitted jaw splint and gave me facial exercises to do - these have definitely helped and I feel are a better option than the $5000 surgery proposed by an orthodontist. TMD can be due to both a physical cause (changes to the jaw from RA are possible) and a psychological process -all the stress you've been through could be adding to it.
Hope this helps - please feel free to ask more questions.

Hi again Enbloc. The point is that my ESR has been steadily rising over six months and is now at 78 (normal 0-10) - which is pretty high even for me. My CRP swings from low to raised to soaring back down again over a space of days so no it doesn't reflect my neuropathic pain really. But my ESR does seem to reflect the neuropathy perfectly - to the point I can predict exactly how high it is by the stiffness, nerve pain and how lousy and fatigued I feel.

My ANA was negative, as were my other autoantibodies apart from my rheumatoid factor, which was low positive when last tested a few years ago.

I'm told it is my high ESR which means I certainly have clearcut autoimmunty. My CRP usually hovers around 12/13 and is only usually checked occasionally.

But if my autoantibodies are the measure my neurologist relies on as you suggest then a) he doesn't know much about autoimmune diseases and b) I will never get offered Ivig by him. He needs to think outside the box with me because I'm very unusual to have this huge discrepancy between my wild CRP swings and consistently my high ESR. What these two consultants confirmed is that all this is definitely autoimmune - it's just how to get anyone to recognise or take responsibility for treating it.

Hope this makes more sense now I've explained in seronegative but very inflamed.

This is really helpful thanks. I am very stressed out but I don't think this is causing my jaw/ mouth / nose problems because they are pretty much the same pain I have in my peripheries. I do think it's probably neuralgic rather than arthritic because I can open my mouth reasonable well and have no clicking or jaw locking but my muscles are swollen and my gums, lips and teeth all feel sort of tight and swollen and they sting. I can't really describe this pain apart from saying it feels the same as the pain in my feet age ankles. As if my mouth and nose are out of sync with the rest of my face somehow?

I don't think my ESR would be at 78 if all this mouth pain was stress deleted somehow. If it's a case of what came first the chicken or the egg then the nerve pain arrived over two years ago and I've never know how to deal with it.

Last time he suggested cymbalta and I had a very horrible experience with this latest drug, Imran. I Had my RA verified by a doctor last year so I'm really hoping it is all part of the unusual presentation of my RA and I will back to autoimmune diseases.

I did have swine flu and severe tummy problems pre RA some years ago. My mum and dad both died from heart related vascular disease so the mention of vasculitis did worrywart a lot,

Hi Mat52

If your Neuros are anything like the ones down here on the NHS I would suggest attaching written notes onto 6 inch nails and driving them into his skull with a large mallet. On my last appt I was saddled with a Registrar who was SO bad he thought he could contradict an MRI and a Consultant with 40 years experience - who ran 3 hours of comprehensive tests on me - with a 2 minute visual review.

I throw my hands up and dismiss them now, I would rather see any other Specialist. And this has been the case since 1997.

Despite this, I truly hope your experience is a positive one and your Neuro can reach conclusions which actually lead to effective treatment. I have followed your Posts, and you deserve a break.

Dave.

Hi again Mat52
When you say your other autoantibodies were negative I'm guessing that included adrenal autoantibodies which they probably would have tested because of the Hashimoto's. How long ago were they tested and how long have you had Hashimoto's?

Have you ever been given any information about APS? (Autoimmune Polyglandular Syndromes). This is when other autoimmune conditions develop after an original autoimmune disease.

Here's a link specifically related to Hashimoto's which may help you understand:

http://www.thyroid.org/wp-content/up...v238_14_15.pdf

Although the article is about a study to do with the prevalence of Addison's Disease with Hashimoto's there is info in the "Results" section about other conditions associated with Hashimoto's. The commentary is also interesting and may help you to present another medical opinion for your doctors to consider.

Gosh thanks for this - don't know about any of this and don't know which autoantibodies he checked but they never tested my ANCA for vasculitis and I thought that would be obvious. I will look these up and see if there's stuff I can make sense of. I'm so tired all the time my cognitive reasoning isn't that great. Thanks so much

[QUOTE=EnglishDave;1144973]Hi Mat52

If your Neuros are anything like the ones down here on the NHS I would suggest attaching written notes onto 6 inch nails and driving them into his skull with a large mallet. On my last appt I was saddled with a Registrar who was SO bad he thought he could contradict an MRI and a Consultant with 40 years experience - who ran 3 hours of comprehensive tests on me - with a 2 minute visual review.

I throw my hands up and dismiss them now, I would rather see any other Specialist. And this has been the case since 1997.

Despite this, I truly hope your experience is a positive one and your Neuro can reach conclusions which actually lead to effective treatment. I have followed your Posts, and you deserve a break.

Dave.[/QUOTE

Thanks Dave - if you've waded through my long posts I'm very grateful! My neuro is rather s serious man but he seems quite honourable. I don't think he knows that much about autoimmune diseases though. He's an expert on headaches so perhaps my more recent jaw/ mouth neuralgia may strike a chord. It's my rheumatologist I despair of. But your registrar sounds in a league of his own! :confused:

Ps yes my RA started after a few heavy duty bugs - food poisoning followed by swine flu with no break in between - a bit like this year I've had flu and pneumonia followed by all this rubbish!

The ONLY Neuro I ever had success with was a headache expert. I was actually in his Clinic for Neuropathic Facial Pain/Paresthesia and TN caused by an arterial knot round my Trigeminal Nerve when I suffered a headache attack in front of him - as I had suffered for years (8 times a day, every day), thinking they were just part of the TN. He immediately diagnosed Chronic Cluster Headaches and put me on Topiramate - which also helps with the Neuropathy.

Unfortunately, at my next appt 6 months later he was gone, moved on to another Trust as is the pattern amongst Neuros down here. You never get to build up a relationship or rapport with one, and each has their own ideas and pet medications.

But it sounds as though your guy is at least reliable and stable, and you are a repeat patient so there is foreknowledge. All this counts for something, I'm sure. Just don't go in with a preconceived result in mind, and try not to drown him in information so he feels forced into a dx. Better to spoonfeed facts slowly as he is amicable, rather than seem pushy.

Dave.

This is very wise advice Dave. Sometimes I think I'm too convincing for my own good at these consultations. The result is that they get my hopes up with a verbal diagnosis and then change their position if tests dint correspond. My rheumatologist comes out with lines like "we treat the patient not their blood" but if the blood doesn't support the symptoms they just back away.

That's lousy about the lack of continuity - I would hate that. The two consultants I had last weekend I will probably not see again but having people come fresh to my case was actually pretty helpful in this instance.

I'm not sure if my behaviour is exactly pushy but I think I'm very believable in person. I would hate to live in the south now from a health perspective. This neuro has apparently always worked in the same hospital and he does seem good but I was disappointed he didn't stick to his guns over this being immune mediated small fiber neuropathy. I don't believe in idiopathic as a term that is acceptable.

For me it's a no brainer that my neuropathic symptoms are part of the inflammatory process because of my ESR. I mean how could this be sitting at 78 now if I have no infection, no visibly swollen joints and all my pain is in my connective tissue? It has to be either in my nerves or in my blood vessels or in both. My guess in that it's the latter, both, and that I have some kind of vasculitis. But 'm trying hard not to suggest this to them and just present them all with the saline facts.

This approach has only got me so far though because they need evidence as supported by bloods, X-Rays, MRIs and nerve conduction plus skin biopsies - which they don't get from me - ESR and CRP aside. Lumbar picture went badly wrong so results contaminated by trauma. I would have a other if I thought it would help but after 7 attempts at tap I'd want convincing!
Mar x

Hi Mat52

Your neuropathy sounds like it may have developed as a result of one (or more) of the auto-immune conditions. The high ESR rate mightn't be a reflection of the SFN but more due to an AI - especially if you have something else undiagnosed going on. It'd make sense that if you have an AI condition flaring then the PN will be aggravated. ESR is a non specific test and really should be used in conjunction with other tests. But your rate is high enough that the doctors should be following it up.

http://labtestsonline.org/understand.../esr/tab/test/

From your description of your jaw symptoms I'd agree it sounds more like neuralgia than TMD - sad to say the Max Fac may not be of much help in that case but definitely worth asking as you never know what experience they have. The neuro will probably say TN and include it with the SFN.

Your neurologist may not know much about endocrinology (and vice versa in my experience) so asking them about APS will probably draw a blank look. Maybe discuss it with your GP (again probably a blank look!) but I would request an urgent endocrinology appt. I think I remember you saying once before that you're not under an Endo for your Hashimoto's - just the GP. There's some tests your GP could order beforehand. Fasting cortisol (8am) to rule out Addison's. I'm not sure what tests for the other conditions but ask your GP.

If you feel both your Hashimoto's and RA are being reasonably well managed there's a chance something else is going on. Keep searching for answers. I've known the fatigue and brain fog only too well - happy to help research for you if you don't have energy. Take care.

Hi Bluesfan. I have just read the pdf you attached on Addison's associated with Hashimoto's. I do sometimes use the thyroid UK community and people on there have told me my thyroid bloods are out of whack and I need to self medicate with T3 or NTD. I get worried at the idea of self medicating - in fact it scares me rotten so I usually come off the community again. I've asked my GPs several times if I could be referred to an endocrinologist but they say that with my thyroid in normal range and blood glucose too they can't possibly refer me to one.

I'm really rather at my wit's end because they surely know that something is wrong with my very high ESR and huge swings in CRP. I can see then dismissing all my symptoms as being Fibromyalgia or CFS otherwise but no one is saying that to me although the GP did say he thought I was over anxious when my husband got him up to our house last week. My husband got cross and said that, in his work with the elderly in a care home he comes across anxiety and attention seeking behaviours a lot and I'm absolutely not like this. I'm 52 and I feel desperate to be well enough to get my career as an artist back on track and we want to move to the Scottish mainland and start all over with this in mind and this is a very exciting project for us both. The last thing in the world I want is to be watching my life slip slowly away in bed! But this is what is currently happening.

Why would none of these doctors be helping me by checking out my cortisol levels and looking for Addison's Disease? I could send the link to my GPs by email as I am getting my blood tested again on Monday morning in preparation for the neuro and Max fax appointments. But I have emailed both last week saying I am not happy at their advice to just "let the dust settle" after these two admissions. I absolutely do not want a third admission.

Right now I'm lying in bed at its 4.43 am. I've taken lots of the laxtulose and Senna the hospital and GP recommended I take with the Dihydrocodeine to prevent constipation. It has worked but still my stomach and lower back are hot and painful and I keep having these awful sweats/ fevers. Of course I'm at the age where everyone rolls their eyes about the sweats but I don't think they are menopausal as I'm well past my menopause now and never had a single hot flash. Like everything else including gallstones it feels a very unfortunate coincidence. Instinctively I know that the neuropathy (including mouth/ jaw pain), sweats, GI troubles, immense fatigue and high levels of inflammation are all closely linked to my autoimmune system. I don't just feel anxious I feel terrified that I will just fade slowly away with everyone shrugging and saying "let the dust settle" or thinking I am over anxious.

I've lost faith in my GPs and my rheumatologist and don't expect much of the Max Fax or the neurologist. I'm usually quite robust re tears and stuff but I did break down in hospital last Friday and the locum consultant and another lovely hospital doctor tried to console me that they would get to the bottom of it all for me - which of course they haven't. Despair isn't me but I'm too tired to fight my corner now.

I'm gluten free, take adcal d3 and was taking B12 sublinguallly but stopped because it seemed to make no difference after about six months. They did test me and, like my thyroid it was at the lower end of normal but I've read Mrs D's sticky thread and know this doesn't mean I can't have PA/ B12 deficiency. As it wasn't helping I stopped supplementing so that if I'm tested again it won't skew the results. I did get myself privately tested for coeliacs antibodies 18 months ago and though it showed I am a bit intolerant I certainly don't have full blown Ceoliacs.

I really appreciate your offer of help. I admit I really can't do the science and that's another thing I couldn't bear about the thyroid community because I an discalculaic and find all the numbers impossible but can't trust strangers to tell me what thyroid drugs to buy online and cut up and self administer. I do need advice but more the kind you are giving via the medical route than chopping up portions of T3 and using home testing kits.

And--what do you mean by "intolerant"?
 

What lab tests did you have for gluten sensitivity/celiac? (I assume you haven't had a full endoscopy of the small intestine, which is the absolute gold standard for celiac diagnosis, assuming the samples are done right and there are enough of them . . .)

I ask because as I read this it certainly sounds like that could be involved here--gluten sensitivity can present with neurologic rather than gastrointestinal symptomology (ataxia, neuropathy)--and autoimmune conditions often come in clusters.

By the way, someone in your situation should probably have been screened for antibodies to nerve as well as the standard ANA-related antibodies:

http://www.questdiagnostics.com/test...lNeurop#Immune Mediated Peripheral Neuropathies

It's so strange how every doctor has such different opinions in their treatment plans. In my case I was given IVIG, plasma exchange and rituxin, the IVIG was considered first line and least dangerous. The immune suppressors (imuran, cytoxin etc) were considered the "big guns" in the opinions of all the doctors I saw.

I just noticed in one of your new posts.... that you are an artist?

May I ask what you do and what you use?

Have you had your iron level checked recently? My doctor was quick to blame vertigo/dizziness on the neuropathy. I think sometimes when we have something like this it's hard for the doctors to look past it and they forget the simple basic things.
In my case my iron was extremely low. I noticed a huge improvement in my vertigo/dizziness symptoms after a few months on iron supplements.

Thanks but definitely not low iron - I eat very iron rich diet (although appetite very poor because of lack of smell or taste or ability to chew!) and my haemoglobin has been checked weekly since the Imuran.

Glad yours was easily resolved by iron supplements though.

thanks----wish the simple fix like iron supplements would have done something for the neuropathy!!! ...but nope, only the dizziness :( hope you get some answers and help soon

Well that is interesting Northerngal. I am guessing you aren't in the UK? For my body the drugs I've tried so far eg Sulfasalazine, methotrexate (both oral and injectable), Hydroxychloraquine and then Imuran have certainly been big guns!

And many RA friends have tried and failed to tolerate or improve on these first line disease modifying antirheumatic drugs and yet have tolerated and improved with the biologics further down the line.

So despite the doctors saying "big gun" in terms of tolerance what they actually mean is big gun in terms of expense to the NHS. I'm sure the same cost indications generally apply all over the world though. So maybe it is just the term "big gun" which is used properly wherever you are ie big gun to the body's tolerance levels rather than big gun to the tax payer/ health insurance companies!? Mat x

Methotrexate and sulfasalazine both deplete folate. Did you supplement this?

When people end up here, with dead ends from doctors and lots of time spent with little improvement, it is time for the DNA testing for methylation errors.

MTHFR mutations are common and if one is heterozygous for them, they manage for part of their lives at substandard levels, and finally crash when aging.

23andme is one OTC affordable place to get tested. I'd seriously consider it.

Once you get that gall bladder out, you might feel much better.
A low grade infection with inflammation there can make one very ill.

I am still curious if your art activities are exposing you to some toxin...pigments, solvents?

Hi Mat52
I sent you a PM yesterday - did it get through - if not let me know and I'll resend it.

nope, I'm not in the UK---both of the doctors that prescribed my IVIG were in the Boston, MA (US) area. They both felt felt that IVIG was the safest because it does not suppress the immune system. I got the same speech from both that suppressing the immune system could possibly lead to cancer or other unwanted ailments.
Truthfully......I would have used the immune suppressants in a heart beat if at least one of them told me it would alleviate this neuropathy. They are still not out of the question if it starts progressing. I sometimes even want to try one now to see if suppressing my immune system would help me regain strength/function and feel better.. I know they would not help with the actual healing process of the nerves. But I just wonder because, if my "overactive" immune system caused this in the first place---maybe I would feel better if it was suppressed??? BTW....no 52 is not considered "older aged" (caught that in your earlier question---and I am 51!!! lol)

Never heard of these methylation crisis things Mrs D - is this a mineral or vitamin deficiency of some kind? I did take folic acid while on the drugs you mention yes. I will ask my GP to recheck my foliate, B12 and ferritin levels a well as fasting cortisol on Monday with full blood count.

Very interesting about the art and toxicity - the hospital consultant asked the same thing so I've been researching. The answer is that I did paint messily for many years and I often got paint in my mouth and skin. As my skin was often covered in open eczema sores I have wondered if this could have poisoned me somehow?

But my artist friend who is quite obsessive and used to have to do health and safety checks for aarge scale art and health centre he ran - told me last night that this was very very unlikely as none of the paints I used contained lead or any other toxic chemical. I have used mainly embroidery now for 7 or 8 years because the lifetime of eczema defeated me finally. The eczema went overnight but I suspect this was hormonal because I was perinenopausal at the time and had severe eczema and alopecia as a tiny kid and until I was 45. Ironically I then got RA very badly in my hands for several years so found stitching very hard going.

Other sources of possible poison/ contamination could be my mercury fillings, high levels of radon gas where I live and other environmental factors. I can't afford to replace all my filings with the other kind (which contain synthetic oestrogen and tend to fall our very quickly with me) but was planning to ask the maxillofacial surgeon about this - given one of the doctors said that my symptoms corresponded with some sort of long term poisoning.

Regarding the Radon gas - well our house is for now sale and we are hoping to move away at the end of the summer. I used to get severe rhinitis and the other skin related stuff until we moved here . So when it went away I blamed the intensive farming and pesticides we were surrounded by at the time.

More recently I have decided that my body has always attacked itself since I was little one way or the other. My mum starved me as a baby to the point I was 24 hours off dying (by mistake re inexperience and lack of breast milk) and a professor I saw last year agreed that this could have triggered fight or flight/ autoimmunity. Somehow I've survived each period of crisis - but never has to survive this level of crisis before and I am, as you say, getting older and somewhat less able to withstand it.

Incidentally both my parents died at 73 of vascular dementia leading to heart failure so I do worry rather about vascular stuff. Also did you know that there has been a huge upsurge in autoimmune disease since the Ebola crisis? Apparently survivors are getting autoimmune diseases now - not sure which sort but I thought this very interesting if it is true.

We had another poster here that was possibly poisoned by her pigments. (pointing her brushes with her mouth!)

http://neurotalk.psychcentral.com/post1053214-621.html

I used to paint alot in the past, then I had to work overtime to pay for my son's college training etc, and didn't do much (only a little drawing)

I am returning to it now, and discovering that many of the pigments I was familiar with are gone, and replaced by synthetic non heavy metal ones. ( I use watercolors predominately).. so I am buying a whole new range of colors!
(this has been a surprisingly complex task!)

Cobalt is on the way out.
Cadmium reds and yellows are being replaced
Chromium greens
Manganese blue
Mercury
(of course Lead white...but that has been gone a long time)
There is arsenic in many earth pigments too.

I was always very careful not to get anything on my skin.

You can also breathe in pigments from pastels. I see pastels are much less commonly used today compared to the past.

The mineral spirits used for clean up of oil based paints are also not good long term for nerves.

When you get your blood work done, have them test you for heavy metals, just to see what is going on.

To help with sluggish gall bladder, there is a supplement for that. Taurine has been found to complex the cholesterol in bile and help move it out so it won't form stones. I use it because I have gall bladder attacks but all the tests show "no stones".
500mg a day whether I need it or not seems to prevent the big attacks. When you get yours removed, you will still have to help the bile move out... so if this works for you now, you will still need it post surgically. (people taking lithium cannot take taurine)

The MTHFR problem is becoming very common as it is being tested for with the new DNA testing.
Here is a link to one very good resource on the net:
http://mthfr.net/
B12 and folic acid must be methylated in the body to work in the tissues. Since you had 2 drugs that deplete folate, if you could have a MTHFR issue, you would become MORE depleted than other people. So the testing for this may reveal quite a bit for you. The solution is to use methylcobalamin B12 and methylfolate (Metafolin). Poor methylation means you cannot repair nerves and other tissue (blood vessels)..

Whew that's s relief re 52 because I'm only just ready to go for new life, renewed ambition as an artist etc now youngest son is about to leave for university. These references to ageing were starting to depress me as much as the rest!

I have been sufficiently alarmed by the inflammatory process over the last four or more years that I was willing to try anything. In my heart I know that my neuropathic symptoms are inflammatory/ immune mediated because of the way the RA showed up so dramatically and manifestly. I will not accept that this is idiopathic and will keep investigating and asking others to investigate because I feel that there is something I or doctors could be giving me to halt this process.

However in guessing that your neuropathy has been confirmed as immune mediated and this is how you were offered IVIG? I am fairly sure that in this present health area I won't qualify for this treatment. Only those with proven immune mediated inflammatory polymeuropathies qualify and mine falls under rheumatic so the neurologist is highly unlikely to let this problem fall into the beleaguered neurology department's responsibility. I will ask but Ivig is very expensive and a scare resource. Maybe when I move to a more forward thinking area it can become an option but I need to find some energy to relocate first - even cleaning up the kitchen earlier has led me back to my bed foofed!

Do you ever get this kind of pain where it is as if something is gripping you everywhere? So if you move you might explode like you have a bomb attached? So you stay extremely still in its vice like grip in the hope that it will lift itself and let you breathe again normally?

I don't know anymore if I'm imagining this or if this corresponds with others experience of neuropathic pain. It becomes like a wetsuit of pain in the night and includes my jaw so I feel I can't even cry out. It's almost exquisite in its awfulness. In fact in going to ask this as a separate question/ post so please respond if you would like to. In the context of this post I'm not sure if it will help to describe it in this way to my neurologist on Wednesday or if I'm being too descriptive and pain is just described as sharp, dull etc?

Handprint.com is a wonderful resource... I am often amazed that this fellow did all this work!

Here is his portion about toxicities:
http://handprint.com/HP/WCL/pigmt6.html#toxicity

But the whole site is really helpful about quality of brushes, pigments, paper, and manufacturers of watercolor products.
I can only manage a little bit each day.... it can be so overwhelming! ;)

Thanks Mrs D but I only stitch these days and am mostly too exhausted even got that!

Colour
 

Hi MrsD and other artists.

I recently read an interesting book on the history of colour, pigments, origins, toxicity etc. It's called "Colour" by Victoria Finlay ISBN No. 0 340 733 292
Well written and researched for anyone interested in this topic.

Mat, it appears that you could explore the heavy metals... they mostly stay in the body. They require special chelators to remove or dialysis.

Blood testing you are having anyway... so might as well test this.

Thanks. I will explain to my GP on Monday morning that the consultant first wondered about toxicity and let her decide which tests to run.

I have been really struggling with my jaw and the sweats today and am thinking hard about what was said to me over the weekend. I don't think this is toxicity because I only use embroidery threads now. And although I do often feel as if I've been poisoned by something I suppose this is how an autoimmune disease(s) operate. The heat surges started five years ago or more in my wrists and now the same thing is everywhere and alternates between whole body heat surges and clammy cold sweats and icy feet.

It is much more likely that the doctors were right in believing that, after a long weekend of observing me and checking my bloods daily, the inflammatory process was part of either an unidentified Autoimmune disease or else my rheumatologist was right to think that it's actually part of my RA.

The thing that upset me is that i have no sign these days of synovial swelling and have negative or equivocal autoantibodies and therefore won't qualify for any of the "big gun" drugs ie Biologics or IVIG.

I suppose what I need to ask my neurologist is whether he thinks that this is all a rheumatology matter i.e that the neuropathy is secondary to the inflammatory process of RA flaring, or whether it could actually be an inflammatory neuropathy still? I think he will say it's a rheumatology matter - not neurological.

However I believe I need them to alter the disease activity scoring system for me, to include my nerves, blood vessels and jaw so that I can meet the criteria for further immunesuppressant medication. I think I do probably just have a very systemic type of RA which overlaps with other diseases, causing inflammation in the nerves. But it could be that I actually have inflammation in the joints and just because it's seronegative and there no visible presence of hot swollen joints my rheumatologist is now waiting to see if the RA is causing my jaw problems perhaps before offering me further treatment.