Hi there. It’s a quite a few moons since I was last here. At that point I was diagnosed with Sjögren’s related small fibre polyneuropathy and Raynaud’s. Then I had the devil of a time with Uk neurologists trying to stick an overlay conversion disorder on me. Finally I was about to be discharged from the connective tissue disease clinic with “just” Sjögren’s, SFN and mild Raynaud’s last year so I felt I had to take drastic action.

At this stage my worst symptoms were that I could no longer type for burning pain and mottled red patches in my finger tips and pads, hand swelling with nail pitting and GI issues from top to tail. Plus numbness and orthostatic discolouration in my feet with intermittent redness, swelling, burning and inappropriate sweats.

So I travelled the length of UK and sought an overview from the eminent Sjögren’s rheumatologist. She was baffled as to why I was being discharged with so much inflammatory disease and explained that I met the diagnostic criteria for systemic sclerosis due to signs and symptoms (skin and GI plus Raynaud’s and a very positive but rare antibody). So she changed my diagnosis to systemic sclerosis and I came back home thinking things would improve.

But they didn’t so I dumped my frustrations on my lovely dermatologist - who was on my side completely and referred me to a different rheumatolgist in same hospital. She stuck her neck out a little nervously as Scleroderma isn’t her specialism - but she listed it as part of my Overlap CTD and I went back on immunesuppression and started having infusions of Iloprost for my mixture of Erythromelagia and Raynaud’s.

To my amazement the improvement to my finger tips was instant and the burning and freezing with discolouration improved too. All these years of being told that my parasthesia was neuropathy but it seems it was at least part vascular after all.

So now the damage done by years of neglect and medical gaslighting have taken their toll and I try to avoid neurology like the plague.

But I have degenerative disc disease causing cervicogenic headaches and so I went back to them over the phone. My neurologist agree to a 2 yearly MRI of my head and neck after I described a numb mouth and tingling arms. All came back showing same thing as before - no progress to significant nerve entrapment.

But she went on maternity leave in September, requesting I see her colleague face to face last month to check my weak arms and wobbly neck. I suspected a rat because of past psych/ conversion diagnosis from her. So I agreed to speak to this chap by phone rather than face to face, citing that I shouldn’t be examined in hospital due to my high Covid risk.

He phoned 3 weeks ago and I asked if I could just run through my symptoms from head to toe and check what was vascular, wear and tear or possibly neurological. It went according to plan in that I started with my eyes - which I’ve been having to manually open during the night now for about 3 years. He asked why if not reported it before and I said I had - to ophthalmologist and a vascular medicine professor. I assumed it was Sjögren’s and then, having excluded dryness, I thought perhaps allergies but excluded that too. Then decided on my thyroxine needing adjusting - but that didn’t work so I settled for fluid retention around my eyes and blepharitis - but my optician excluded this a few months back.

So he asked if I could take photos of my eyelids refusing to open in the night and I agreed. Then we moved to my permanently anaesthetised mouth which he felt was trigeminal neuropathy as part of my SFN/ EM/ Raynaud’s mix.

This made sense so moved to my unstable neck and headaches. He was adamant that what I was describing was cervicogenic headaches so then we moved to my fatigued arms. He didn’t comment much but said no sign of radiculopathy. My discoloured legs he also asked for photos of and peripheral resting pain he attributed to my vascular issues and secondary SFN.

So I sent photos of locking and droopy eyelids and intermittently discoloured legs. The latter he described as a spectacular demonstration of Erythromelagia/ EM and said I’m on the right infusions for these as it’s a vascular issue primarily.

However he asked me to come in for blood tests for my eyelids to (hopefully) exclude Myasthena Gravis. Bearing in mind my rare Scleroderma antibody I asked if he could perhaps test CK in case I have Myositis. He agreed although feels this is less likely as I don’t report muscle pain, just resting weakness.

So I’m now waiting for him to call on 22nd if this month for MG test results. I think personally that the eye issues are another unusual aspect of my collagen vascular disease rather than some additional autoimmune pathology,

My question here is whether anyone else has awakening ptoris/ locking eyelids like mine as part of small fibre neuropathy or EM or even Raynaud’s? Neck and arm weakness too? Or perhaps MG plus SFN?

None of these issues are new at all for me although they are perhaps slowly deteriorating and I need neck support for even short journeys in the car now.

--or multiply morbid, in that you do have numerous reinforcing conditions.

First, much of the neuropathy in diabetes and the vascular autoimmune conditions such as Sjogrens and lupus is actually vascular in nature; the elastic connective tissue in blood vessel is attacked and this means less nutrition and oxygen gets to the nerves and less waste products are carried away, compromising them over time. It's not that there can't be direct autoantibody action on the components of the nerves themselves--that happens, too--but the primary mechanism seems to be vascular in nature.

Moreover, this lead one far more prone to compressive nerve effects. I have talked in the past about the "double crush phenomenon"--nerves already damaged by systemic conditions tend to produce enhanced symptoms when mechanically damaged, such as by spinal foraminal or disc issues. I'm quite living proof of that, having issues with both my cervical and sacral spines where the symptoms are enhanced by the nerve damage I experienced in my bout of body wide acute onset small fiber neuropathy back in 2003--I have recovered considerably from that, but residual effects, and the fact that regenerating nerves may grow back in different pathways, fighting their way around or through other body structures, have resulted in more symptoms from my spine issues than one would suspect just from looking at my MRI's is quite probable.

This is why people with multiple issues need to be seen at tertiary medical facilities that not only do research but have multiple coordinated specialists--and ones who communicate readily. Don't know how much access you might have to such a facility, but it's probably better than dealing with doctors in smaller practices.

Thanks very much. I think the medical care I’m getting is tertiary in the sense that I’m seen or spoken to in a reasonably large Scottish university teaching hospital. The problem is that it’s all happened in the run up to and then amidst a global pandemic. In a sense this has been to my advantage because I’ve mostly been speaking to my doctors by phone - which tends to make me more lucid and focused.

This lack of face to face contact has been particularly useful with neurology because it has enabled me to push the agenda back towards my symptoms, confirmed diagnosis’s and wealth of existing imaging. Previously the neurologist’s have tended to grab the advantage of having me captive to run physical tests which were then used to diagnose hardware/ software conversion issues. And the more we deny that we are pathologically anxious the more this is viewed as a sign that we are suffering from anxiety - whether about existing health conditions deteriorating or new unexplained symptoms - or just inherently anxious and therefore prone to somatisation issues.

And knowing how easily this can happen from past experiences causes a kind of medical PTSD of course so it can easily become a vicious circle.

However I think I’ve now escaped all this at last in terms of my own multidisciplinary team. But the bad smell lingers on and this is why I haven’t reported my locking eyes (awakening ptosis is the medical term I believe) wobbly neck or weakness in arms until I felt safe to do so - years after they first began.

I don’t think my antibody test for MG will be positive. But a little part of my wants to mentally prepare just in case and also to know that I’m still going to have these symptoms taken seriously if and when when my tests come back normal.

So it’s useful to know that my tingling arms and resting weakness is more likely to be part of my existing conditions rather than some new autoimmune pathology.