Trying to make some sense of worsening neuro symptoms - Psoriatic Arthritis?

[MAT51]

Hi there. As some of you know I find the neurological aspect of my SS the hardest to live with. The system here in the UK is like a giant, underfunded and beleaguered cog that gets stuck when acute problems such as flu outbreaks and beuracracy jam it up. So getting by with a chronic condition becomes more of a question of self help and self education daily.

So to remind, since mid February I have been off my fifth DMARD now, waiting to see where my autoimmunity takes me. It's a somewhat risky strategy that my medical team have adopted - but adopt it they have and I'm not against it at all as I'm cynical about Big Pharma - particularly for chronically sensitive me.

So far I haven't been horribly ill. But I've noticed a gradual increase in some symptoms and a marked increase in others. My Doctors can point out that this could just be coincidence and I agree. But as my plasma viscosity (more reliable version of sed rate)and CRP are always pretty elevated - they know something is amiss. But it's not clear to them where the inflammation is - so they tell me that Sjögren's will always make my blood very viscose and there's nothing they can give me that will change this. I think I could do more myself through certain food avoidance. But since I'm off all treatments I've found that I just can't be bothered to avoid gluten and dairy completely. I've lost my sense of taste and smell for a long time now and enjoying my food is part of enjoying life despite all the rubbish stuff. So I go for tasty morsels and lots of water. Mostly it's very healthy but occasionally  it's not!

These days my tremors and muscle twitching/ spasms are really dominating my life. I believe this is par of SFN but am still awaiting a new neurology appointment date for a second opinion. I was referred by my GP end of March and told now that there's a 15 week wait to even hear from the clinic that I can phone and fix a date. Way to go?! 

I also feel that the longstanding weakness in my arms is worsening rapidly. And my peripheries do hurt a lot more. I've also had a lot of pelvic pain over the past few months - something that comes back to haunt me whenever I'm off immunesuppressants. I'm told that this is just coincidence and the lower back and pelvic pain are just wear and tear. However my physiotherapist and GP both think it could be sacroilliac pain and I plan to ask my rheum when I finally see her again, rather than the vascular doctor, about possible spondyloarthritis such as PsA. I've been thinking about this as I have such an itchy scalp, historic severe eczema, my son has just been diagnosed with Psoriasis and I have this annoying little bite-like lesions around my face and neck all the time. I was told by the vascular doctor and dermatologist that this isn't Rosacea. So what is it?

Also my nailbeds are always tender and have red halos and the nails themselves constantly split and peel and I have tiny splinter haemorrhages always coming and going. So Psoriatic Arthritis, which my cousin has, seems quite a likely extra to me I think?

Meanwhile on Saturday I had another MRI of brain and neck to see if anything has progressed. I doubt it has as this would be too straight forward somehow?! Next investigations are a 3 way smear test to rule out gynae cause of pelvic and lower back/ bottom pain.

Then I have something called a VNG in three weeks time. I saw a wonderful ENT surgeon a few weeks ago, who specialises in balance disorders. He took my problems seriously and is sending me for a full battery of vestibular tests now to see if I might have Menieres or some central vestibular issues. He re-examined and reformatted a sinus CT scan of last year and discovered that I have a "high rising venous bulb" which is a structural abnormality that would, he feels, explain my pulsatile tinnitus in same ear. It seems relatively benign so this was a bit satisfying.

But back to spasms, tremors and peripheral weakened, arms that want to furl etc and worsening fatigue. My research tells me that I may have central sleep apnea and wondering which comes first - if fatigue could be causing my internal tremors and muscle spasms or other way round? It seems to me that they are much worse when I'm fatigued because I haven't got energy in reserve to mask or control them? I've read that it takes a lot of energy to stay still and if we are sleep deprived or fatigued this shaking, trembling and twitching is much harder to control?

[anita]

I think PsA is something they should have considered a long time ago.  You have the fluid in joints (even small joints in finger tips, if I remember correctly)...confirmed by ultrasound findings.  The fluid in these small joints is tell-tale for spondyloarthritis like PsA.  The experts at Johns Hopkins Arthritis Clinic told me this several years ago, when diagnosed me with PsA.

There should be someone that can confirm the places on your neck are (or are NOT) psoriasis.  it would certainly explain the blood results for inflammation.  The only factor (and a big one) is that you don't complain of any swollen joints...and sausage digits (fingers), when your level are high.  I don't remember you saying anything about joint swelling other then many years ago when Dx with RA.  There are some with PsA that don't have much in the way of psoriasis, but all typically have joints that swell up huge for no reason or just minor bump.

Not sure if you know that psoriasis shows up in toe nails as well...similar looking to fungus, but it's NOT fungus.  It makes them curl, get real thick, etc.  They sent pieces of mine off to lab for fungus testing.  Took 4 weeks, but negative for fungus, and they said it was psoriasis.

Unfortunately, even if you have PsA, I don't know what they could treat you with.  You don't do well with biologics, and that's what they use now.

[MAT51]

Thanks Anita. Actually during my five years diagnosed with RA (it was only 7 years ago) I never had ultrasound as my rheum didn't believe in it and felt the old fashioned tactile method was best. Very annoying when the technology exists but I suppose it's very expensive and takes time to be trained up. And no I don't get the sausage fingers now. I did when diagnosed with RA but also had hot, bruised looking finger joints and knuckles, hallmark of RA.

Nowadays my hands, wrists and arms ache a lot and I have stinging pain around my nails and they have little red halos and splinter haemorrhages on nail beds - which are thin dry and brittle on hands but very thick and shell like on my toes - but not the classic fungal look/ yellowing surface - just like dirty old pearl! And only I notice this and the Beaus lines - you wouldn't see them if on someone else.  I used to get them more when on drugs such as Methotrexate.

So I've assumed this is just premature ageing with Sjögren's as this is what vascular doc and dermatologist suggested - a connective tissue thing. So I may be barking up wrong tree as I don't really get the swelling with painful joints so they tell me I just have some OA.   Same for my spine - just muscles or OA/ wear and tear. Not that I have imaging but I guess it would confirm as it has with my neck.

I think the great increase in muscle weakness and pain in my peripheries must be an SFN flare - maybe relating to warm weather? The fatigue levels are at all time great too - same for my skin.

I showed the slightly itchy facial spots to vascular doctor in April and he excluded Rosacea and Scleroderma but said they could be ageing or an inflammatory response to flare - no mention of Psoriasis. I showed the derm my nails and she said "oooh yes have you shown Dr B these yet? This is his specialist area!". He looks at nail beds all the time because he's a Scleroderma man so guess he would recognise Psoriasis. I did say my nailbeds are always tender but he just smiled and said he could see the blushing and splinter haemorrhages but didn't think it much to be concerned about. Splinter haemorrhages at top of nailbed are almost always due to trauma to finger tips. I did say I have no recollection of banging my fingers in doors daily but he just smiled!

I had pretty bad eczema all my life until menopause and bouts of severe alopecia and these can impact on nails too. As a child I used to be mortified by my nails as they were always lumpy and peeling. I've never been able to grow them at all as they split and chip. And the pink halos in top do make them sensitive and my finger pads are often swollen and shiny and always tingly numb - even typing is sore. Hard to ignore as doctors suggest - fingers are pretty important. But my skin is very stretchy and translucent - youngest son has same and just been diagnosed with gutate Psoriasis.

[anita]

Ultrasound isn't expensive, and has been around for decades.  They aren't using any new equipment...same old ultrasound, just doing it on finger tips to look for fluid.  Took 5 minutes or less.  They also check toes, if they didn't get definitive findings in finger tips.  They found fluid in almost all my finger tips, so didn't think necessary to do my toes.

But I agree...If you are not having any swelling in joints or sausage fingers, then you may be barking up wrong tree.  But you have the other signs...the obvious inflammation, joint pain, problems with nails, and some undefined rash issues.  I still think worth looking into....even if just to definitively rule out (ruling out is just as important in diagnostics).

Any results from your MRI yet?  How long does it take before you see report online or doctor office contacts you?

Who Dx'd your son's psoriasis...dermatologist?  Maybe that is who you need to see.

[MAT51]

Yes i agree about the testing. Ultrasound not really used in some parts of Scotland because the equipment requires training to use and that costs money the NHS hasn't got. But I will ask anyway at dermatology in August and connective tissue clinic too. My cousin has no Psoriasis at all but is still diagnosed with PsA - so it must be possible to diagnose it by ultrasound or X-ray or MRI. My fingertips are often swollen and sore - too bad to type. I have assumed this is the SFN though as it's prickly and they do go sausage like - but not further down into my hands usually. I will ask as the lower back pain
is really getting to me.

I won't hear anything for a while regarding my MRI. Last time my rheum wrote directly to me after about six weeks to report no progress to existing white matter or arthritis. My confidence in these doctors to assess imaging well enough is a bit iffy just now. I had a CT done of sinuses last year and was told all fine and normal. I then saw a different ENT a few weeks ago about my balance. He wrote to me a week later saying that he had reformatted the CT and discovered a rising venous bulb on my jugular - a structural abnormality which he felt explained my pulsatile tinnitus. He's sending me for a full vestibular work up and rehab in a few weeks in case I also have autoimmune ear disease. Now he's the one I'd trust!

[anita]

I don't have 'typical' psoriasis 'rash'...I had some small patches of Psoriasis during a flare of very swollen knee (patches were on same leg), but I do have the psoriasis in toe nails.  I have not had any other times of psoriasis patches, but got my Dx due to positive ultrasound findings of fluid in all finger tips, along with MRI findings of edema INSIDE the bone marrow of the sacroiliac joint.  this along with clinic observation of swollen joints and sausage fingers.  So you don't have to have Psoraisis to have PsA, as far as I can tell.

Your pain in finger tips may be fluid, not the SFN.

Does the NHS have online access for you to see actual reports of tests?  Something you can go online and pull up results and see reports yourself?   

[MAT51]

Yes - I did some more research yesterday and discovered that my feet have a hard scaly rash on the joints and one toe is text book swollen like a sausage digit. All my nails have tiny splinter haemorrhages and look dirty although they aren't. But under one big toe are tiny red black spots in and below the nailfold which is a little sinister to me.

I wish I could interest the GP but I had to speak about the peripheral weakness getting so much worse as a priority yesterday and we are only allowed one question. He looked up my notes and seized on the term functional from the first neuro about a stroke like episode in my face and arm 3 years ago. In vain would he listen as I pointed out that this was a direct response to Tramadol I'd been given at the end of a traumatic year. Each time I taken Tramadol I have a stroke like experience. But it was too late - he's a lazy man and likes to find boxes for his patients so he waffled on about Fibromyalgia and how sometimes there were no answers etc. I asked at the end about my toes and he said they looked very dry and need cream without examining them. I said tat the have yellow corners and one toe is swollen permanently and is sore and he just said "your time is up but anyway you will have to ask a dermatologist next time" and whooshes me out. He is at least going to try and expedrdiate my neurology review and neuro physio sessions.