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Old 05-28-2015, 03:56 AM #1
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Default 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.
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Old 05-28-2015, 10:04 AM #2
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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?

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Old 05-28-2015, 10:33 AM #3
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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.
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Old 05-28-2015, 10:48 AM #4
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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!
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Old 05-28-2015, 11:00 AM #5
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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!!
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Old 05-28-2015, 11:04 AM #6
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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
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Old 05-28-2015, 12:04 PM #7
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Originally Posted by MAT52 View Post
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.

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.
^^^^^^^^^^^^^^^^^
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.

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.
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Old 05-28-2015, 12:49 PM #8
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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
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
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Old 05-28-2015, 01:01 PM #9
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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!!
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
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Old 05-28-2015, 01:21 PM #10
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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.
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