Limited scleroderma and worrying memory issues. Linked?

[Blue_feather]

Hi all,

I recently underwent a full assessment for early onset dementia as my GP felt that my working memory is perhaps a little more affected than could be explained by menopause; thankfully, it was concluded that it isn't, but the consultant in charge of my brain mri told me that it is either menopause or that it could be linked to my scleroderma.

I just wanted to know if anyone else has/is experiencing similar memory issues, or knows of a link between the two since l have never heard this before.

[amc282]

When you say memory issues, what exactly do you mean? I am struggling with remembering names. I had surgical menopause in 2017 so I think that has been affecting me too. Maybe mild cognitive impairment. I am scared to go and get an assessment…

[Blue_feather in reply to amc282]

A bit more than putting keys down and forgetting where. I forget entire conversations that have taken place with me, actions taken at work, spellings of one/two syllable words, clock face numbers ( l put 1 o'clock where 12 should go during assessment), sometimes l don't recognise where l am for a few moments, and this morning someone asked me where l work and for about 5 seconds l couldn't remember (been at the same school for 11 years.) I frequently forget colleagues surnames and first names of students sat in front of me l have taught for 5 years.

It is all very irritating and occasionally embarrassing as l think people must think l am lying when l claim not to remember something.

The assessment is a bit scary but with hindsight it was only scary because nobody explained what the process would be, and in what order.

[amc282 in reply to Blue_feather]

Thank you for your reply. I think the easy thing to do is blame menopause, but, I think it does play a part. I also think brain fog and cognitive impairment can be issues with chronic illnesses like SSc and Lupus, etc., at least from some articles I have read. Take care x

[Olive12345 in reply to Blue_feather]

Before I was diagnosed and put on hydroxychloroquine I kept writing ‘s’ backwards and getting 2s and 5s mixed up. I’ve stopped doing that now but I still struggle with memory. I won’t remember conversations with my husband and I’m always losing things. It could be peri menopause for me maybe (I’m 37) but it all definitely improved for me since my condition is better managed. I have lupus mainly but I have antibodies for scleroderma and I also have full body raynauds.

[Blue_feather in reply to Olive12345]

I have been on hydro' for just over a year, but this has got gradually worse.Glad you are seeing some improvement.

I have sclero and raynaurds but often wonder if lupus better fits my symptoms.

[Olive12345 in reply to Blue_feather]

Have your other symptoms improved at all? I also did an anti-inflammatory diet so that could have had an impact. The diet definitely reduced my pain. I’ve been on hydroxy a few years and it’s only this year that I feel more stable but I’ve also been working hard to increase nutrients in my diet as nutritional deficiencies are common in autoimmune disease and cause cognitive problems. My B12 and iron has always been normal but ferratin was in the low side as well as zinc, selenium and I think choline.

[Blue_feather in reply to Olive12345]

Yes, Olive! Up until recently, l was calling hydro' a wonder drug. However, in June my dog passed away, and l had a whopping flare up of my rheumatic symptoms and also a flare up of excema. It is all beginning to settle down although l am still battling to stop infection in my fingers. The skin just keeps breaking down.😥I struggle too with keeping vitamins optimal. Folate is a problem as even with two prescriptions a year, it won't go above 6, and usually drops back to 3 very quickly after l have finished a 3 month course.

[StriatedCaracara]

I trying to read up on mepacrine, an antimalarial used in SLE. Sometimes used alongside hydroxychloroquine..

Surprised to learn it can help with brain fog. It is known to affect the brain but I don't know the mechanism.

[Blue_feather in reply to StriatedCaracara]

I have just been reading up on this; apparently it is not licensed in the uk so use has to be strongly justified against the cost. Usual NHS story l guess.

[Castella]

Much more research should be done on cognitive issues in scleroderma, we all know it's a problem. It can be measured and even visualised, but rarely is.

[OldTed60]

I get same some days but I’m 60 and long past early menopause. I had to ask an older (70) friend I was staying with to fill in lots of word gaps for me six weeks ago. I thought about this as felt very awkward and stupid but we decided that it was just fatigue from me having travelled a long way to see her, sleep deprivation, chronic pain, ongoing weightloss etc.

I do monitor as have immediate family history of early onset vascular dementia on both sides - so I read up a bit and Iloprost, which I get monthly, is a good preventative treatment apparently. I don’t feel it’s CNS although I have some non specific white matter according to occasional head MRIs for last ten years. They told me this is typical of mild Sjögren’s damage and just within normal for my age. I try to exercise my brain doing little brain games on my iPhone and I don’t think it’s got much worse. I always struggle to find my way around buildings with no windows eg hospitals, colleges etc so look for signage or artwork or someone usually directs me when I go a bit vacant and lost lol! Fluorescent lighting makes it worse. But this isn’t new for me and hasn’t progressed.

So I’m not worried and don’t think it’s my scleroderma or medication related for me personally, but I’m under neurology for neuropathy and neck problems and my rheumy is a lupus/ Sjögren’s specialist so I’m lucky I can report to or ask either consultant if I notice any progression.