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67 Posts
Hi all
I haven't posted here for a long time and since being diagnosed at St T's in 2005 (UCTD with overlapping SLE and SS features plus probable APS) and starting the drugs, for a little while seemed to have a more manageable life. Since a very grim last year though (my mother was very ill with ovarian cancer and I was having to travel to another part of the UK to nurse her for a few days pretty much every week for months, on top of health issues, two small children, 8 months' worth of major building work at home and, oh yes, a full-time career; then my Mum died in November) I have been feeling worse than at any time since diagnosis and treatment. I currently take 400mg plaquenil, 5-10mg prednisolone 1 week in 4 or higher does if flaring, diclofenac, aspirin and various other things.
My fatigue and aches, headaches, joint pains, mouth ulcers, GI issues and general inability to do much at all have been worse than for a long time. And then in the last 4-6 weeks a neurological issue I have had before has changed/got a lot worse. In the past I have had periods of feeling weird and weak on my lefthand side (face, leg, arm - face notably droops, foot sometimes drops), and in 2006 (?) St T's did a brain mri without contrast, which was clear. Have also more recently had very deep pain in left shoulder and left lower back/pelvis areas, which seems to go with the weird leftsided feelings. But recently this changed to comprise pretty constant and very severe, mostly leftsided, burning and gnawing deep nerve pain for a couple of weeks - worst at night, makes sleep impossible even after max doses of opiate painkillers, and lying on the sofa on impossible days even the feeling of pressure from the sofa on my left heel, back, shoulder, arm and leg was unbearable. Pain in trigeminal area of face, too. It was also agonising to try to raise my left little finger and to touch certain areas. Then in last week or so the continual pain has lessened but been taken over by lots of repeated and migratory, short-lived sensations of multiple very sharp needles sticking in areas of my body. These have been mainly on left hand side again, in areas ranging from toes and feet, through legs, perineum, recturm, flank, hand, arm, tongue, inside ear and face. Then in last few days I have had these sensations on the right hand side of my body too, though less so. I also say the wrong words a lot - though I have done that on and off for a long time.
I went to see my (good) GP last week and he referred me to a neurologist, whom I paid to see privately today. He was very nice and did a thorough examination. I told him most things though was feeling very out of it and forgot to tell him it was worst at night, about the ear and more intimate areas being involved, and made it sound like both sides now equally affected, which they are not. Neuro examination indicated some patchy sensory deficits but with no clear pattern. Muscles not objectively weak or assymetric. His conclusions were: (i) no neurological problem beyond things which would be part of my wider connective tissue disease picture (by which I assume he was indicating no suspicion of MS for example), (ii) no need to do a brain mri as I had a clear one before (though this was 3 years ago and without contrast), (iii) some kind of neuropathic process clearly going on though, probably inflammatory and possibly vasculitic, and he/we should wait to be led by St T's about what if anything to do about investigating it and treating it long-term (I have a St T's follow up in a month's time). Meanwhile he felt he should do something to try to calm down whatever is going on right now - and commented on how awful I looked; thanks doc! - and has recommended prednisolone for a few weeks, starting on 30mg but increasing after a few days to a week if necessary.
In many ways I felt reassured by the appointment - I am glad he thinks there is nothing extra/other going on beyond the CTD stuff, and I guess he is probably right not to do anything else before I go to St T's again - he talked about immunosuppression but said he thought he ought not to do that without their lead. I do think though perhaps it would have been useful to order another brain mri with contrast and not to assume it will be ok because it was 3 years ago. And more generally, I felt so low afterwards and still now - not because he was awful (he wasn't at all) but because I feel overcome by that feeling of how unfair all this is and how I want to get up in the morning and not have to ration my energy and have pain all the time. I know you will all know how I feel, and most of the time I am strong and positive - but today I feel overwhelmed and very teary about it all, more than I have for a long time. :sad:
I am so sorry for the long post. Thank you for listening. And thinking of you all too.
Sandra x
I haven't posted here for a long time and since being diagnosed at St T's in 2005 (UCTD with overlapping SLE and SS features plus probable APS) and starting the drugs, for a little while seemed to have a more manageable life. Since a very grim last year though (my mother was very ill with ovarian cancer and I was having to travel to another part of the UK to nurse her for a few days pretty much every week for months, on top of health issues, two small children, 8 months' worth of major building work at home and, oh yes, a full-time career; then my Mum died in November) I have been feeling worse than at any time since diagnosis and treatment. I currently take 400mg plaquenil, 5-10mg prednisolone 1 week in 4 or higher does if flaring, diclofenac, aspirin and various other things.
My fatigue and aches, headaches, joint pains, mouth ulcers, GI issues and general inability to do much at all have been worse than for a long time. And then in the last 4-6 weeks a neurological issue I have had before has changed/got a lot worse. In the past I have had periods of feeling weird and weak on my lefthand side (face, leg, arm - face notably droops, foot sometimes drops), and in 2006 (?) St T's did a brain mri without contrast, which was clear. Have also more recently had very deep pain in left shoulder and left lower back/pelvis areas, which seems to go with the weird leftsided feelings. But recently this changed to comprise pretty constant and very severe, mostly leftsided, burning and gnawing deep nerve pain for a couple of weeks - worst at night, makes sleep impossible even after max doses of opiate painkillers, and lying on the sofa on impossible days even the feeling of pressure from the sofa on my left heel, back, shoulder, arm and leg was unbearable. Pain in trigeminal area of face, too. It was also agonising to try to raise my left little finger and to touch certain areas. Then in last week or so the continual pain has lessened but been taken over by lots of repeated and migratory, short-lived sensations of multiple very sharp needles sticking in areas of my body. These have been mainly on left hand side again, in areas ranging from toes and feet, through legs, perineum, recturm, flank, hand, arm, tongue, inside ear and face. Then in last few days I have had these sensations on the right hand side of my body too, though less so. I also say the wrong words a lot - though I have done that on and off for a long time.
I went to see my (good) GP last week and he referred me to a neurologist, whom I paid to see privately today. He was very nice and did a thorough examination. I told him most things though was feeling very out of it and forgot to tell him it was worst at night, about the ear and more intimate areas being involved, and made it sound like both sides now equally affected, which they are not. Neuro examination indicated some patchy sensory deficits but with no clear pattern. Muscles not objectively weak or assymetric. His conclusions were: (i) no neurological problem beyond things which would be part of my wider connective tissue disease picture (by which I assume he was indicating no suspicion of MS for example), (ii) no need to do a brain mri as I had a clear one before (though this was 3 years ago and without contrast), (iii) some kind of neuropathic process clearly going on though, probably inflammatory and possibly vasculitic, and he/we should wait to be led by St T's about what if anything to do about investigating it and treating it long-term (I have a St T's follow up in a month's time). Meanwhile he felt he should do something to try to calm down whatever is going on right now - and commented on how awful I looked; thanks doc! - and has recommended prednisolone for a few weeks, starting on 30mg but increasing after a few days to a week if necessary.
In many ways I felt reassured by the appointment - I am glad he thinks there is nothing extra/other going on beyond the CTD stuff, and I guess he is probably right not to do anything else before I go to St T's again - he talked about immunosuppression but said he thought he ought not to do that without their lead. I do think though perhaps it would have been useful to order another brain mri with contrast and not to assume it will be ok because it was 3 years ago. And more generally, I felt so low afterwards and still now - not because he was awful (he wasn't at all) but because I feel overcome by that feeling of how unfair all this is and how I want to get up in the morning and not have to ration my energy and have pain all the time. I know you will all know how I feel, and most of the time I am strong and positive - but today I feel overwhelmed and very teary about it all, more than I have for a long time. :sad:
I am so sorry for the long post. Thank you for listening. And thinking of you all too.
Sandra x
It doesn't save money in the long run though if this is an ongoing problem. 
