First, some background: Rheumatology instructed me to stop daily hydroxy 400mg last feb when blood tests prior to starting IV osteoporosis treatment found hypogammaglobulinaemia & leukopenia....nb for years before starting on oral immunosuppression, my gammaglobulins, complements, haematocrit & white blood cells had tested chronically low.
Anyway, in feb, rheumatology referred me to immunology directly for investigations. Meanwhile I've been allowed to continue on 1000mg myco cellcept daily. Also I'm continuing to use the typical assortment of prescription oral & topical meds in my multisystem treatment plans. Thank goodness
As a result of those Feb blood results & my history of infections, Rheumatology suspects I have a primary immunodeficiency with infant onset SLE, sjogrens etc etc as secondaries. Am expecting immunology's initial report to arrive any day now, but the specialist immunology nurse has phoned to warn me it's been written and confirms that treatment is required.
Now am prepping for a rheumatology appt at the end of June + my 2nd immunology appt in early July...which is why I'm asking this question here
A lifetime of persistent, reocurring infections is key to rheumatology's immunology referral. But, most of my life, a set of disabling progressive neuro cerebral symptoms have been just as persistent. I could list these NC symptoms, but this question is to ask whether others on forum experience an extra degree of severity of NC &/or vascular symptoms affecting one side of the body. All my symptoms, generally, always have & still do affect both sides of my body, but without daily hydroxy, both my NC + my inflammatory vascular symptoms (especially peripheral neuropathy & erythromelalgia & tendon tightening) are a degree more severe throughout the right side of my bod. Before my version of immune dysfunction was re-diagnosed & systemic treatment begun in 2011, this extra degree of symptomatology on my right side had become chronic
While reading up on lupus & sjogrens & vasculitis over the past 4 years, I've found experts seem to agree symptoms aren't always symmetrical, i.e. can be greater on one side than the other....but I am very interested to hear whether anyone here experiences a greater degree on one side....maybe you'll think a poll following on from this question could be interesting?
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I have nerve pain in all of my limbs (and my face), but it has been my left leg that is the most painful, weakest, and has the most foot dragging and leaden feeling.
I tend to get worse joint pain and burning pains on the left side of my body (mainly in shoulders and arms) and when I saw the neurologist he noted that my reflexes were less brisk on my left side too (arms and legs). Perhaps this is why he is testing my for vasculitis as I have read that it can present a-symmetrically? I do get pain mirroring from one side to the other, but it usually starts on the left side or is worse on that side.
Yes: thanks! Me too, dryad....except it's the reflexes on my right side...and I am being watched for vasculitis ...+ the daily myco I'm on also damps these symptoms down somewhat and, of course, myco is prescribed for vasculitis...Hmmm
Dryad do you have purple spots? I've got them all over, mostly belly. I've asked about vasculitis but I can't ever get any answer from the many doctors I've seen!
Another interesting question you pose!. I used to have joint problems occurring very symmetrically but ever since developing nerve pain I can say my right leg is worse for it and other symptoms than my left. Hope that report comes. X
Thanks misty...we're both experiencing a right sided emphasis....I wish you success in managing and reducing your chronic nerve pain...I know how vvv tough & drawn out this process can be...so, for what it's worth, in case it's useful to someone on forum, (uh oh: I can feel a riff coming on...) here is some of my story:
My peripheral neuropathy & raynauds began when I was growing up. But by the 1980s to '90s, when I was in my 30s-40s, the consultant guys in ortho surgery & neuro surgery & neurology & rheumatology were trying to figure out the source of my Neuro Cerebral symptomatology, they seemed to be stuck feeling mainly stumped....because tests for MS were neg, but MRIs clearly showed severe spondylosis inc a cervical spine osteophyte asymmetric to the left, but they couldn't find enough in MRIs to explain the widespread character of these NC symptoms...and none of them thought to look more closely at my immune system & the multisystem nature of ALL my symptomatology generally. They assured me my NC stuff (chronic fatigue, migraines, vestibular neuritis, tremors, peripheral neuropathy, foot drop etc etc) was somehow due to the spondylosis. I know many many of us on forum have gone through similar diagnosis & treatment ordeals....this sort of thing can scar us for life (it certainly has traumatised me)
Anyway, even, so, there were unanswered questions about the widespread severe character of my neuro cerebral symptomatology, but those big guys were stuck just scratching their heads...whatever, in 1998 I was booked for a double cervical discectomy at an internationally famous UK teaching hospital (even though MRIs showed no actual nerve root or spinal cord impingement)....at the vvv last minute, with my PJs & toothbrush packed for admission, I got the neurosurgical reg to refer me to the Pain Clinic....where a hero pain consultant gave me diagnostic bilateral facet joint injection nerve blocks which led to a series of bilateral cervical, lumbar & sacral facet joint denervations over 10 years. These procedures, + conscientious rehab + ongoing lifestyle management have dulled most of my chronic spondylosis-related pain, so far so good....but my widespread chronic NC symptoms have remained: and I hunkered down to compensating for these & trying to be a reasonable patient
It wasn't until 2010 when the severity of the symptoms in my hands & feet began to actually alarm my GP & pain consultant, that finally a brilliant rheumatologist figured out I actually have had infant onset relapsing & remitting SLE. In 2011 treatment began & hey presto: those stubborn long term widespread NC symptoms proved to progressively damp down as my lupus treatment plan evolved over the course of the first 3 years: starting with daily hydroxy, then amitrip was added, then pred tapers were added, then myco was added....hooray....but in the 4th year hypogammaglobulinaemia etc forced the changes in my meds I've described in my question, above.
So, now I'm starting my 5th year in treatment for my idiosyncratic version of immune dysfunction...and, if I'm lucky, finally, rheumatology & immunology may actually be figuring out, as I type, the underlying causes of both my chronic predisposition to infections & my NC symptomatology. Now I really really feel as if I'm understanding that diagnosis & treatment really really are an ongoing process....
Enough already, I'm thinking! when I woke up this morning, I didn't realise I'd need to vent all this...my apologies to you, misty, and to everyone who has put up with me describing this before...but, also, THANKS: I can feel already that getting this "out there" is helping me face another day of waiting for that report to arrive 😂
Yes! I found it very strange. My joints are more sore on my right side. But I have an intense pressure on the left side. At times it's so unbearable! My left side has more inflammation, left ankle swollen etc. I've asked the doctors but no one can give me an explanation why my left side is much more inflamed than the right. Also the infections I get are on that side as well!
Gosh tsizzle...that is v strange & interesting. I keep telling myself: some day we'll figure this sort of asymmetry out....fingers crossed. Thanks for your reply!
Hi Barnclown,
My joint and muscle pain plus headaches and eye problems have always been a lot worse on my left hand side ( I am right handed ). I do get these problems on my right hand side but not as severely. My diagnosis now is Behcets Syndrome ( also HLA B27 positive, Ankylosing Spondylitis gene ) and I probably have a cross over between both.
I am sure this has been talked about in the a Vasculitis group before and lots of people seem to have a " worse " side.
I haven't Barnclown. I think part of the problem is a lack of immunologists up and down the country. I know some people in the Behçet's group have seen one and rave about them ( they developed angiodema ).
Interestingly I have had 2 anaphylactoid reactions ( cause unknown ) and my children have anaphylaxis, asthma, eczema etc. I do think it's all connected.
vvvv interesting, thanks......when i was referred to immunology last feb by our head of rheumatology due to hypogammaglobulinaemia, i was so ignorant of the speciality that i had to google it! now i understand better...and recent headlines about the benefits of immunological approaches to cancer treatments underline the significance of lack of immunolgoists in the UK....i feel vvvv lucky to be under investigation by immunology at a leading UK teaching hosp...but time will tell how much this actually helps me....
I would be most grateful of any article available on this subject. I'm sure there are. I did once discuss this with a consultant, who was puzzled by it. I think it's genetic.
before I got to vague lupus with sjogrens i was diagnosed with psoriatic arthritis then fybromyalgia - also have regional hypermobility - and there was a non symmetrical pattern of pain, heavily weighted to right side. When very ill and hospitalised heading towards the symptoms of lupus with sjogrens and whatever the striking feature was symetrical [everything] pain and inflammation.
Now I am tending back to right side pain etc - this includes endometriosis despite cysts on both ovaries. But in serious flare up like I've just had [& previous as mentioned] left foot ankle hand wrist very much in evidence! And some differences in type of pain
One scan I had done showed a hot spot on an area on right back rib that had troubled me for years, a steriod injection did wonders even though no one had any idea of what was wrong. I know have sort of trembling weak at times right leg and right arm prone to tingling, as opposed to left hand only tingle.
you wrote the post on inflammatory markers didn't you? Since my significant problems just over a decade ago it has been noted that blood tests appear to show no inflammation when it is obvious that there is. a shame we don't all have regular blood tests when well to see if things do change!
healthunlocked has enabled me to see I have had symptoms throughout my life similar to others, especially with those who were diagnosed later in life and with no significant organ damage. The treatment I have helps but does not cure. The photosensitivity is a bit of a pain and does restrict my life. On top of everything else it makes "normal" regular work impossible. At the moment I am just under care of GP. I am accepting of a "symptoms of" diagnosis but any more big flares like I've just had and I will ask to see rheumatology again. Immunology would seem a sensible option but doubt anything available near me. I've had a life time of swelling glands that in themselves cause a lot of pain. Frequently tested for glandular fever when a teeanger!
your comments are vvv interesting: many thanks flofflach. i can relate to much in your replies. seems to me you're very philosophic about this stuff...and you're carefully watching your condition, always ready to act appropriately and reasonably...you inspire me! take care
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Update on is it a flare or hydroxy side effects? post
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