[MAT52]

PS. I meant to write orthostatic intolerance but can't change the heading title now!

Hi all. Just an update further to my gallbladder operation debacle recently. The SFN stuff came roaring back as a few of you warned me it might. It came back the night after I dropped from 5mg steroids to 3.5mg and I feel this is relevant. Each time I drop doses I have a full night's flare up. The nerve pain appears to have progressed from legs, arms and face starting distally and marginally works on left hand side (but pretty bilateral overall). The wet crawling, feeling I've had a local anaesthetic which is thawing slowly, weird shifts in circulation so either burning or freezing extremities etc - all back. The wound in my belly is healing well now at least.

I woke up on Tuesday feeling tingly and numb down my left side. I had this before a few months ago and initially felt it must be the slow release tramadol having a numbing effect. It wasn't unpleasant so I lay there for ages basking in freedom from the awful pain of the night before - which included severe heartburn. I had finished my two antibiotics on Monday.

Then I had to get up to go down to the GP practice in town and get my wound dressing changed. My left arm had lost all power, my left face felt as if it had a palsy although it didn't and my left foot had dropped.

My husband clothed me and we went down to the surgery. I'd had all this back in May so wasn't thinking it was a TIA or full blown stroke. I felt it was part of my neuropathic flare. Nurse sent me to see the GP and GP wanted to rule stroke out so I went back to ER at the small hospital - suddenly a little alarmed by the numbness in my response and the slightly care free attitude my brain seemed to be opting for. It was like having a split personality for a while.

So after a long wait I was admitted to a cubicle with a bed and my BP was taken every hour - still high but not soaring. An ECG was done. Finally the same consultant I'd been under before came along with a medical student. By this time I'd been fed soup, had a nap and felt fine apart from the usual dizziness and horrible tightness and fierce tingle around my gums and lips.

So I got this wonderful consultant and a medical student who both claimed to find my case intriguing and want to help me get to the bottom of whatever is going on. The consultant took my BP lying down then standing up. I had one of my all consuming sweats with her too. She said that my BP rose rather than falling when I stood so POTS was ruled out as its the other way round for this.

She was cross that my rheumatologist and neurologist appear to have washed their hands of me, cross that my GP hasn't tried me on BP pills - although I explained that I've asked and asked about this but he says my BP is often low or normal when I'm seen by him. She says she thinks it is good that we are moving away from this Island and I need to be sent to one of the large centres in London or England where they see many cases a bit like mine.

Apparently my paired oligoclonal bands from my spinal fluid are evidence of a systemic process and this points to the idea that my neuro symptoms are part of my rheumatic disease rather than a neuro condition such as MS. This is the only thing that has flagged up so far for me - alongside fluctuation of ESR and CRP.

This is as far as we have got but my GP is being nasty and defensive now and tells me it isn't a stroke, he agrees reluctantly on Doppler tests sometime and says he thinks it might be aura migraine. No one is investigating my dizziness which I've suffered of two years now or checking out my phantom toothache or agreeing that my small fiber issues are progressing. Apparently this demyelination would have shown up in my skin biopsies from my calves so I appear to be on the shelf - fire fighting only - at least until we move mid October.

Meanwhile an RA friend has sent me a link about dysautonomia and othostatic insufficiency which she feels might explain why my BP rises on standing rather than dropping as with POTS. Can anyone help me by saying how unusual this is and would it make sense of other symptoms and how would it be treated if it is OI?

[en bloc]

Dysautonomia/orthostatic intolerance is when the BP drops upon standing, not rises. Your BP IS supposed to rise upon standing (to some degree) to keep blood in the brain even when gravity is trying to pull it down.

They should have done an MRI to rule out stroke for this last incident (which sounds like tell-tale stroke symptoms). What test did they do when you presented to the ER with those symptoms?

I'd be interesting in seeing the link you are referencing that says dysautonomia cause BP rising with standing...I have never heard that before and have had dysautonomia for 19 years (my BP drops upon standing and that is the classic presentation).

Your BP sounds fine...but your other symptoms are VERY concerning for stroke/TIA and should be followed up.

[MAT52]

Originally Posted by en bloc

Dysautonomia/orthostatic intolerance is when the BP drops upon standing, not rises. Your BP IS supposed to rise upon standing (to some degree) to keep blood in the brain even when gravity is trying to pull it down.

They should have done an MRI to rule out stroke for this last incident (which sounds like tell-tale stroke symptoms). What test did they do when you presented to the ER with those symptoms?

I'd be interesting in seeing the link you are referencing that says dysautonomia cause BP rising with standing...I have never heard that before and have had dysautonomia for 19 years (my BP drops upon standing and that is the classic presentation).

Your BP sounds fine...but your other symptoms are VERY concerning for stroke/TIA and should be followed up.

Thanks this is what I thought too and what the woman consultant felt. She was expecting my BP to drop when I stood but it went from too high to soaring. Someone sent me a link today where she had read that in rare cases it rises rather than falls and this is card Orthostatic Intolerance. I guess, like everyone and everything there are almost always exceptions to the rule? But not conforming to the norm is my speciality it seems!? I think the autonomic system can fail a person in different ways. Did read that OI can worsen if it's secondary to a poorly controlled disease - which I maintain mine is currently. She said as o could follow line of vision, eyebrows both lifted at request, had no actual muscle palsy, had recovered from arm paralasis and foot drop by the time we got there - it wasn't a stroke

[en bloc]

There are rare cases where it causes labile BP (fluctuations both ways frequently), but not really what you describe...high to higher. I think you would benefit from a full cardiac/vascular work-up.

The mechanism behind the BP dropping is that there is failure to recognize the position change, and therefore it doesn't increase BP to compensate for standing. For what you describe, there would be no failure. I really think you have some sort of other cardiac/vascular issue going on.

I would agree you are poorly controlled (as there is no really proper Dx, so nothing is controlled)...and yes, OI does get worse under these circumstances. BUT it is not within the guidelines of the typical OI.

Please post the link about high to higher BP for OI you are referencing. I'd be interested in reading/educating on this.

[MAT52]

Originally Posted by en bloc

There are rare cases where it causes labile BP (fluctuations both ways frequently), but not really what you describe...high to higher. I think you would benefit from a full cardiac/vascular work-up.

The mechanism behind the BP dropping is that there is failure to recognize the position change, and therefore it doesn't increase BP to compensate for standing. For what you describe, there would be no failure. I really think you have some sort of other cardiac/vascular issue going on.

I would agree you are poorly controlled (as there is no really proper Dx, so nothing is controlled)...and yes, OI does get worse under these circumstances. BUT it is not within the guidelines of the typical OI.

Please post the link about high to higher BP for OI you are referencing. I'd be interested in reading/educating on this.

This friend sent this but I can't really see where it says about BP going up either? I think she's just got confused. Tell me if you see anything - my concentration is right off just now. I know I have something that is wrong with my autonomic responses but it isn't following any obvious pattern at all it seems.
NDRF.org/orthostat.htm

[en bloc]

It only speaks of increase diastolic pressure (bottom number) with slight increase in systolic (top number)...in relation to increased heart rate (which is POTS--postural orthostatic tachycardia syndrome).

Did you have any increase in heart rate? In POTS, you can have increased HR without drop in BP (like stated above from article)...but most common is increased HR due to compensatory reaction to drop in BP.

Did they check autonomic fibers with your skin biopsy?

Maybe you should have some autonomic testing QSART, tilt table, etc.

[MAT52]

Originally Posted by en bloc

It only speaks of increase diastolic pressure (bottom number) with slight increase in systolic (top number)...in relation to increased heart rate (which is POTS--postural orthostatic tachycardia syndrome).

Did you have any increase in heart rate? In POTS, you can have increased HR without drop in BP (like stated above from article)...but most common is increased HR due to compensatory reaction to drop in BP.

Did they check autonomic fibers with your skin biopsy?

Maybe you should have some autonomic testing QSART, tilt table, etc.

I do have some arrythmia which worsens with certain medication or when I flare up. I felt my nerve conduction tests were quite basic to be honest and didn't look for autonomic dysfunction as far as I know.

The neurophysiologist said there was one they don't do because the equipment was too expensive and the test itself too subjective. The other I feel that would have been useful was the thermostatic one -
measuring sweat. I'm fairly sure this one would have shown a faulty response. Maybe when we get to the new area I will be referred for more extensive testing because the hospital is nationally renowned for testing for secondary Raynauds/ Scleroderma, has an immunology department. If not I'll try to get a referral to a top centre in London.

Do you know anything about how common paired ogoclonal bands in CSF are? This is so far the only thing that my neuro has found. For the rest he simply says galvanic responses are normal and skin biopsy shows no sign of small fiber neuropathy. Re Ivig he writes "there is no evidence of end organ neurological damage and I think any treatment should be based on her systemic and rheumatological features." They have since discussed my case and decided on no further treatment for the time being. Neither have me on their clinic lists now as they are expecting me to relocate towards the end of this year and refer to this in their letters. My GP is meant to be organising a Doppler MRI for me in the main hospital. Meanwhile all my LFTs (liver function) are sky high so waiting for them to come back down following surgery. So he says this would invalidate all my inflammatory markers until I'm infection free. I certainly don't feel very well but hard to know what's causing what. I'm to stay on a low dose of Prednisolone for the immediate future. I might try to keep tapering and get off it as I do hate the thought of masking things and I know that the longer I stay on it at a low dose the more my adrenal function will depend on it.

[mrsD]

Here is one link:

http://www.clinlabnavigator.com/olig...ds-in-csf.html

[en bloc]

That is the best site I've seen for this! Thanks, MrsD.

But you have to have BOTH serum & CSF results, Mat. Did he run serum labs also...and if so, do they show the same?

[MAT52]

Originally Posted by en bloc

That is the best site I've seen for this! Thanks, MrsD.

But you have to have BOTH serum & CSF results, Mat. Did he run serum labs also...and if so, do they show the same?

Yes I agree it's an excellent site thanks mrs D.

Enbloc my neuro had both serum and Lumbar Puncture done at same time for this purpose. This is why he says I have "paired O bands" - because the bands in my CSF are paired exactly with those in my serum. This is why my GP, rheumy and neuro all say I have rheumatic disease - even though my RA symptoms have gone into hiding.

And presumably this is why I'm not told it's idiopathic or Fibromyalgia or ME. Although I'm asking here because until this last hospital admission no one had explained that this doesn't only rule out MS - it also means something systemic is indicated.

So they know something is going on but just not yet sure exactly what so for now it's called RA rather than Lupus or a type of Vasculitis - because my ANA and ANCA are both negative and I did present with clear synovitis for a few years and have a fluctuating ESR and CRP and raised rheumatoid factor.

But the fact that most of my diverse symptoms are systemic and appear as neurological first and foremost, now baffles everyone. It also means I don't get anymore treatment options until it shows itself, or disappears.