Sticky Blood-Hughes Syndrome Support
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not sure if my memory is shot or if its mostly depression

I keep forgetting simple but important things. So yesterday, I put a pan of water on the cooker and then went upstairs to use the computer. About 30 minutes later, I just happened to go back downstairs to get something (cant remember what it was!) and I saw a now empty pan getting dangerously hot on the gas hob. I keep doing stupid things like this.

And yet I tested my memory this evening to see how many objects I could remember in a row (adding five each time) and got to 80 quite easily and then got bored (though I used the story technique which maybe is cheating). Anyways, my memory cant be completely shot. So why the heck do I keep forgetting things Ive just done or need to do?

Maybe its the depression and being preoccupied? I know I have a lot of ischaemic lesions, but Ive no idea if they are in the part of the brain dealing with memory. Thereagain, from the white dots on the MRI, looks a bit ike they have been fired from a shot gun, and seem to be quite widespread.

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I am sure you will know what I will ask, and here goes, what are your vitamin D levels doing, how is your B12, and your iron, and also your thyroid function beyond testing only on the NHS which is not adequate for the full picture, and are you gluten free? There is usually more than one reason for this. MaryF

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Hi Mary

Hope you doing well. My vits D and B12 were good (and I now keep well topped up) but my vit D was for sure low when all this started. I think my iron is OK. It has been tested and no one raised an issue.

I had standard thyroid test and will push for the fuller one you refer to; just a bit all out of pushing reserves atm.

Thanks a lot.

R

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The last ones I did were via Blue Horizon, but there are other testing packages and centres recommended by Thyroid UK. The sort of tests I do are like these, you will not get the NHS to do these tests by the way.

TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH), REVERSE T3, Insulin, HbA1c, Magnesium.

Mary F

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I think alot of people who have fibromyalgia are like this.I am and do lots of strange things. My B12 and vitamin D is ok.think thyroid function needs tweaking thou and am awaiting when I see consultant again for that hopefully.

It makes you feel like you are going mad.

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Thanks for reply. Hope thyroid gets sorted.

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Hi,

I am sure you will know what I will ask;

I have forgotten if you now are on anticoagulation or only on Aspirin and if you have managed to get in contact with a Specialist of autoimmun illnesses who has have patients like us before?

Have you tested postitive to the three antibodies twice?

Best wishes from Kerstin in Stockholm

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Hi Kerstin

Hope you well and Stockholm is still warmish. Im now on aspirin, partly after reading about it on this forum and asking consultant about it. He wants second opinion from London Bridge before trying warfarin trial but he agreed that might as well start right away on aspirin.

Ive been taking it at night and Ive started to feel a bit better. Maybe pyschosomatic, who knows? In particular, dont feel so fatigued and instead feel a bit clsoer top normal night-time tiredness. Am also taking turmeric eevry day and I feel that helps but that is mostly speculation.

Thanks again.

R

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Hi

I like you am doing some weird things and forgetting the most simplistic things.

I forget where I am all of a sudden and panic that I’m lost before I then realise of where I am again. The list goes on.

So I was referred to see neurologist P Holmes in guys hospital as my MRIs were normal. He decided to do a PET scan which actually showed bilateral hypoperfusion of the temporal lobes. He believes it is the APS antibodies working against the brain Rather than blood flow.

It is something he says he’s seeing more with APS patients, I believe there are 3 others in her with the same sort of results (maybe not exactly temporal lobes).

I have been waiting 4 months to see a dr mummery in the London numerology hospital for more testing.

Maybe it’s worth speaking to your rhuemy who can possibly refer you on to dr Holmes?

L x

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Hi Bacardibabe,

Are you still on Aspirin and Clopidogrel for anticoagulation?

Best wishes from Kerstin in Stockholm

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Yes still on them Kerstin. X

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Hi Bacardibabe,

I would say that you are at the moment not properly anticogulated for your symptoms.

Kerstin

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I agree Kerstin

But it’s a struggle I have at the moment. Prof hunt says to try but prof d Cruz says no.

Apparently I will get an apt for dr mummary in either dec or January.

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Hi again,

Is it not possible to listen to prof Hunt? I have heard that prof Hunt is a good Doctor for our illness.

Kerstin

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Prof d’cruz is in charge of my care and he liases with her so I am not officially on her patient list, even though she has written letters to them about me. 😞

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Hi L

Sorry that you are having memory problems too. What you say about hypoperfusion sounds like it might be relevant to me. I will certainly ask about this.

Thanks a lot for the information.

Hope appointment goes well for you and it is not too much of a longer wait.

R :)

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It is understandable to be worried about "forgetting" and there are many reasons for this distressing situation. It is important to rule out the medical/neurological aspects first, which is what you are doing.

However, the fact you can remember 80 objects - the story method is a technique employed by people who can remember a pack of cards in order and is not cheating - shows you have a short term memory!

You refer to depression and certainly this can be a major factor. Therefore, I would recommend you see someone to address the depression. Unfortunately, this may not be easy as mental health is at the bottom of the list; and patients report they are lucky to get 6 sessions of CBT.

If you want to talk about this aspect, PM me and perhaps can find help for you. Depression and anxiety are responses to life. There is nothing shameful nor weak in having feelings about whatever is happening in your life, including living with a chronic condition.

With good wishes,

Ros

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Hi Ross

Hope you doing OK. And thanks very much for the reply. I suspect that the neuro problems could well be part of it. Im not sure that you can have such a grand collection of lesions without some effect on memory. But I guess its posisble. Ive been listening to podcast about brain plasticity and know that the brain can find ways around the blocks in the road.

Thanks for reassuring words about short term memory. Makes sense. Though I think I would struggle to remember order of whole pack of cards. There is just too much repetition in suits and numbers. Now a pack of happy families maybe!

Ive been on waiting list for 18 months for counselling. But have now arranged to see someone privately. Will be well worth the moneny if she is any good. I think you can lose acertain amount and then will inevitably be tipped into depression. For me it was when acquired 6th loud tinnitus noise and my vision joined in! If someone said "well you will be stuck with the problems you have for te rest of your life" then I could come to terms with it. But is harder when things kep getting worse and there is no sign that this will halt.

Thanks for kinds words and kind offer which I may well take up at some stage.

Best wishes

R

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Hi,

I know many of you also have SLE together with the HS/APS but I hope you do not forget what prof Hughes has always said; a Specialist who can deal with your problems and help you to thin your blood as we have too thick blood! Most of us with neurological symptoms need a high INR if we use Warfarin that is.

I still believe in anticoagulation at a higher level than 3.5-

Kerstin in Stockholm

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