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

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.

Here is one link:

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

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.