I have received written confirmation that I have Vascular dementia. The type I have is the cortisol kind so it looks like Hughes is gradually killing off my brain. I don’t need this right now, still, in the words of Terry Wogan, mustn’t grumble.
Im sorry to hear your news. You do of course have evry right to grumble. But the Terry Wogan reference made me chuckle.
Wishing you all the best.
We talked about that you need a Specialist as you have got a lot of diagnoses from autoimmun illnesses. You said you should do that.
Now I wonder if you have found a Specialist of Autoimmun illnesses like a Rheumatologist. All Reumatologists are not specialized in our different conditions, first of all of HS/APS, but you need to find such a doctor before you believe anything that the Doctors are telling you.
After writing on this site for at least 3 years and having this illness I know that is vital to get a Specialist who knows about HS/APS (do you have any antibodies positive or are you diagnosed by symptoms only?)
Are you on anticoagulation?
Tell us how it goes for you please and if we can help you in some way with Doctors etc!
My best wishes to you!
Kerstin, many thanks for your reply. I live in South Wales where trying to get any treatment is difficult let alone a Rheumatologist. Presently in my area there is only one and he is an 80 mile round trip. He is good and is starting with my issues from the start, as he says my notes are a mess. he confirmed I had the following: Hughes, Temporal arteritis, Osteoarthritis, Sjogren's. He has arranged for a comprehensive set of bloods to be taken and I am waiting for an MRI. I don't believe he is a Hughes specialist, however he is certainly the best Consultant I have seen in what appears a lifetime.
I have been on Steroids for over 10 years and am suffering common symptoms this drug carries, Weight Gain, Thin skin, Glaucoma etc. I have also had a Synathecen test which shows my adrenal function is seriously insufficient, and he recommends that I drop steroids to 7.5 and be retested every year, which has not happened. I am currently on 10mg of steroids a day and am now suffering many of the symptoms I first presented with many years ago. All I am taking to control these are MTX 20mg and prednisolone. I am also taking Morphgesic SR 100 twice a day, Amitriptyline and Diazepam when required.
As you can see my case is quite complex and just recently I have been diagnosed with early onset vascular dementia. Thank you for taking the time to listen and respond.
I am sorry you are currently in receipt of bad news! I will add that sometimes an under active thyroid can cause dementia type symptoms and also B12 deficiency, both easily missed and very common alongside autoimmune disease. I go on and on about testing the Thyroid as the NHS testing is too narrow and unreliable, hence why I pay for detailed private panels in my own case. Despite my great diet, exercise etc, I found years back I too was B12 deficient, low in Vitamin D and also had a slow Thyroid!
For your interest: ncbi.nlm.nih.gov/pmc/articl...
Interesting paper you send over.
You have every right to grumble... I would, my mother had vascular dementia, so I have some experience.
Her case was many years of being B12 defiencent and not treated, so damage was irreversable. I got diagnosed with B12 defiency early, once on medication my memory improved.
Can they give you prednisone, oral corticosteroids, or cortisone acetate etc to control/improve your symptoms?
I am very sorry to hear of your diagnosis and all that it brings. I was diagnosed with small vessel ischaemia in my early 60's and Prof Khamashta who I was seeing at the time referred me to a very good neurologist as there was also a query over Parkinson's. Thankfully after a DAT scan it was confirmed I didn't have Parkinson's but I do have more than a reasonable amount of small vessel ischaemia because of the APS.
I have had many MRI's since and thankfully there has been no increase which my neurologist is convinced is in no small part to the daily clexane, blood thinner, I take. Not sure if this is relevant to your situation but thought it might be worth a mention, I hope things improve for you.
I reread and I see that you have been on Warfarin and had a selftesting-machine that was "caput" and you should fix a new one. Have you now stoped that anticoagulation?
I hear you talk of chestpain etc and I am sure you need a high INR and also a Specialist. You live in England so it must not be quite impossible for you to get a Specialist of autoimmun illnesses.
I think you must do something NOW about your health? How old are you?
Hi Kerstin. I am sorry I appear to have confused you. I do have a self test machine and it is working fine. It is checked very three months. I have not stopped anti coagulation nor will I unless told to by a consultant, and then only if I am given an alternative. I am no seeing a new Rheumatologist who is very helpful and has given me faith back in the medical system. I am 60 and have been having this trouble for 18+ years. I see my consultant tomorrow and should have my blood results back. I am sceptical about these as they always come back normal, much the same as many others on this forum. I appreciate your help.
This was perhaps a couple of years ago i talk of, but perhaps I got it wrong.
Does your new Rheumatologist understand HS/APS and as you selftest can you decide about your INR and the Warfarin-drugs yourself? I have to follow my INR closely so I selftest every second day as the INR is moving a lot up and down. Sometimes difficult to understand why.
What INR has he put you on? Can you keep it there otherwise you may well get symptoms back quickly.
My INR is set at 3.5-4, I have come to an agreement with the Haematologist that I try to stay as near to 3.5 as I have had periods where I bleed into my calf muscle. I am due to have a Doppler scan next week so this may show light.
I'm so sorry to hear that you are experiencing these vascular troubles with your brain. You would never know it reading your well written post, so it certainly isn't noticeable in your writing. I'm sure you notice it within yourself, and I'm sure you have some days that are better than others.
I also seem to be struggling with something like this. My neurologist is administering neuro cognitive tests ( neuropsych tests) and I'm going down hill. My short term memory is extremely poor. ( to be fair my INR was 1.9 for three days, I was in one week of migraine during tests, and wound up in hospital two days later with another DVT- they offered to postpone tests but I thought- well, this is a snap shot of my brain right now. Let's go!) I can tell even when I'm well I'm not functioning at all at 100%.
Two weeks ago my neurologist ordered a venogram of brain to get a base line. I'm wondering if results will show a problem.
Is vascular dimentia the same as Sneddons syndrome? Have they used this term with you? A few people on the forum have mentioned this and I'm wondering about this.
It's usually associated with clotting. ( non inflammation I believe.) Way too much to learn.
It can co exist ( in tandem) with APS.
Thank you for allowing me to ask such questions, only I'm trying to understand what what tricks my brain is up to!
There are quite a few types of dementia/alzeimers deseases. But attached article on Sneddons, which after reading, symptoms start in a different way to vascular.
You are the second person to comment on my written post. I used to the Head of Health,Safety and Fire for the Minster of Justice here in the UK. I was medically retired at an age of 55 because I could not speak properly. I used to and still do get my worms mixed up and say the complete opposite of what I mean. My diagnosis was done following cognitive tests over several hour interviews. I have not heard of Sneddon's. I do know that there are there types of Vascular causes, which are:
3. Cortisol ( I believe) This the one that affects me, My blood is not getting to the tiny capillary areas.
I am sorry if I am a bit vague about your questions, Please seek other advice as well before taking any action.
This might be associated with Sneddons, lesJames. It really might be down to a game of semantics at this point, but I'm not sure. Do you mind asking your neurologist and sharing what you learn? I could then share with my neuro here.
I realize it's all very complicated. I'm not at all familiar with the cortisol form of which you speak. Is it possible you meant cortical? ( auto correct can do strange things!)
( especially when you are loosing vision due to micro clots to optic nerves, the way I am- so I'm never sure WHAT I've typed! )
Kelly, I am not seeing a neurologist as yet. But when I do get my appointment I will bring this up and let you know.
I’ve learnes a few things.
1. My venogram with contrast was normal.
2. According to a very well respected neurologist in London who is the “ man of the hour” with regards to specializing in a sub set of APS patients with strong neurological features, who aren’t showing the typicall white matter lesions on the brain, but demonstrating neuro cog impairment, apparently he is seeing that PET scans are showing abnormalities.
If I am understanding correctly, he feels Sneddons a term that is not used as much any more in neurology in this particular application, and “ cerebral APS is more accurate and used instead.
Semantics, to some extent, indeed was the case. ( but I always like clarification and parameters of semantics.)
Kelly, Thank you, I have recently been diagnosed with early onset Vascular Dementia. I have had an MRI recently along with a whole lot of bloods. I am now waiting to see the Consultant following the results. If they come back as clear (no surprise) I might just as well ask for a PET.
and been having test for dementia I was told last week my dementia is down to Hughes syndrome
were having a discussion about how likely it is that I will get dementia/Alzheimer's due to having Hughes...
Would be nice if they discussed Hughes syndrome as well. I sent an email to the local paper yesterday...
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