Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
@Justin30 I had the Daxor blood volume test twice about 8 years apart. The first one came back normal and a recent one came back mildly elevated.
I had the skin biopsy for SFN which came back very abnormal. I had another done a few months later (long story) which came back normal. This made no sense since at that point I had neuropathic symptoms for over 14 years and definitely wasn't improving. We then did a QSART which was very abnormal at all 4 sites and SFN was confirmed again. I was told neuropathy can be patchy and therefore the biopsy can miss it. I mention the 2nd skin biopsy because its supposed to be the gold standard but I want people to know its not 100% and can miss cases of SFN.
Yes, there does seem to be the belief that autoimmune conditions can cause SFN which can cause POTS. Also, there is that study on adrenergic antibodies in POTS which I guess would cause POTS directly? There is a larger replication study going on and hopefully almost complete which should give us more answers about this.
I don't understand why SFN hasn't been studied in ME/CFS since (at least) 1/2 of people with POTS have SFN and it's looking like fibromyalgia might actually be SFN related and there's so much overlap between these conditions. I think any ME patient with sensory or autonomic symptoms should definitely look into this.
My POTS is due to small fiber neuropathy.
So he was able to study the blood volume of the severely ill? I am havin a rough day..brain and eyes are just a mess
You were tested by him?
It would be interesting to put some of these severely ill patients through current mayo clinic tests for Dyautonomia/POTS and some of the dysregulated receptor type tests?
I had DI but no longer do. I've had so many types of treatment that it is hard to pin down what helped--but florinef definitely didn't!In any case, it isn't just a hormonal problem remedied by desmopressin or fludrocortisone.
omething else--narrowed vessels?--is behind this problem.
@LiveAgain Can you share a link to the video presentation by Dr. Oaklander in Boston?
... it stands to reason that if one has very low blood volume, that the body will recognize this and try to up the fluid intake. However, it turns out that this never solves the real problem. Extra fluid and or salt help somewhat temporarily but then the low blood volume and pressure, etc. quickly return as bad as ever. Something else--narrowed vessels?--is behind this problem.
and related study here: http://www.ncbi.nlm.nih.gov/pubmed/15781744
Not Dr Oaklander, but think this guy does similar work or works with her?:
https://www.masscfids.org/news-events/622-fibromyalgia-and-small-fiber-polyneuropathy
GG
Interesting - Dr Bell says (at 32:40 or so) that severe ME patients don't respond to IV saline and don't have reduced blood volume.