Memory problems: First off, apologies... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
9,312 members9,509 posts

Memory problems

Tomcat
Tomcat
29 Replies

First off, apologies if I've adked this before. About 2014 I noticed a sudden downturn in my memory, its been really bad ever since. It effects long and short term memory, I'm not sure if its a side effect of my blood disorder or something new.

29 Replies
oldestnewest
Lure2

Hi Tomcat,

I wonder if you found a new Specialist from the ones Mary suggested some time ago?

Memory-issues is one of the most common problems with HS/APS.

Last time you wrote on here you were only on Aspirin which is not an anticoagulant. Probably you need something stronger like Warfarin or Heparin.

Important that you keep your previous high bloodpressure down as it can be a severe symptom of HS. Ask you GP for bloodtests as to B12, D-vit, Thyroidea-panel (all the tests).

Have you repeated the bloodtests for HS/APS? I do that twice a year here in Stockholm.

The two most important things when having HS/APS is 1) having a Specialist of autoimmun illnesses (probably a Rheumatologist specialized in these illnesses) and 2) a proper and stable anticoagulation.

I know you had a new job so it is important that you are feeling as good as possible.

Good Luck from Kerstin in Stockholm

2 likes
Reply
HollyHeski
HollyHeskiAdministrator
in reply to Lure2

I agree with everything my colleague has said re anticoagulant.

I went through s sudden loss of memory and was found to be B12 defiencent. Now on medication. Memory has now improved.

2 likes
Reply
jetjetjet

Where are you from Holly ?

Reply
HollyHeski
HollyHeskiAdministrator
in reply to jetjetjet

Originally from Hertfordshire, since Sept 15 I now live in Devon. Still under my specialist at St Thomas's. You?

Reply
jetjetjet

I live across the puddle -- Penacook New Hampshire USA . I have been in this forum for almost 7 years now i think - have meet some very incredible knowledgable people here . Some over sea's i talk to via Telephone . I have an international calling plan - some in some countries i can call that country they don't speak English so we leave it to the site HA HA -mostly England are where the people I talk to the most , just have to remember the time difference.I really enjoy talking to them . The very first two people i talked to on my first attempt were from England, and though they are not on the site much at all anymore we still talk by phone and have become good friends.

2 likes
Reply
Wittycjt
Wittycjt
in reply to jetjetjet

That's because your a sweet young man and are positive. Good for you jet🐸

Reply
jetjetjet
jetjetjet
in reply to Wittycjt

Sweet ?? ----- Young NOT ----Man YES -- and if you would like to talk some time PM your phone number -That would be great for me -I love talking to people from other countries -- I will pay the cost it's only .08 cents a minutes for a land line and I think .28 cents for a cell phone. so it is real cheap . Thanks for your kind words my friend

Casey and I

Reply
Wittycjt
Wittycjt
in reply to jetjetjet

Your bio says you were 15 when you joined in 2011, so I figured you were around 21. Sorry if I mis -spoke. What type of dog do you have?

Reply
jetjetjet
jetjetjet
in reply to Wittycjt

Chihuahua , he is 13 years old and has been my service dog for 4 years now -he goes every where with me. Smart little guy - he holds 4 certifications.

I transpose numbers at times so it would certainly not 15 - i wil have to check that - your the first to mention it --Thank You . Not to worry about mis spoken - nothing you could say would offend -WELL almost HA HA .

1 like
Reply
Wittycjt
Wittycjt
in reply to jetjetjet

Love dogs. I have a ferocious Pitbulls... not he's such a mosh, everyone who meets him loves I'm. They all tell me they want to come back as "Buddy"... that's him, the Budman

Reply
Tomcat

I was recently asked to have blood tests by my doctor and I was found to be low inB12 and Vit D, these where prescribed and my memory did get marginally better, sadly they where only prescribed for a month so I'm now back to square one again. I haven't as yet looked for another specialist as its been a rough few years. I will try snd find one soon though. Thanks for your help.

Reply
jetjetjet
jetjetjet
in reply to Tomcat

Where are you from Tom ??just curious answer only if you want - I like to see where our people are from -you may have told me - I say my brain is like aluminum foil ---{ NOTHING STICKS HA HA HA

Reply
Tomcat
Tomcat
in reply to jetjetjet

I'm from Lancashire in the UK

Reply
Lure2
Lure2
in reply to Tomcat

Hi Tom,

You can be glad to live in the UK as those people living in the US, as for example Jet, have great problems to get a Specialist of autoimmun illnesses and HS/APS in particullar.

Kerstin

1 like
Reply
jetjetjet
jetjetjet
in reply to Lure2

Hi my Swedish connection . ho w are you my friend??

Reply
Lure2
Lure2
in reply to jetjetjet

I am ok today. It is raining in Sweden for midsummer so I am doing some writing to help Mary who is "in the mud" (hope not) on a music-Festival.

I think she should have some time free and enjoy life after all her work for us.

Seeing my Hematologist on July 19. It is a bit difficult to keep the INR in range lately.

Your Swedish "connection" and friend. Give my hug to Casey!

Kerstin

Reply
jetjetjet
jetjetjet
in reply to Lure2

I will my friend- best of luck to you on the 19TH -what do you think is going on with the INR ??? Do I get a hug also or just Casey ??? I guess i can hug myself for you !!!! What do you think :-)

Reply
Lure2
Lure2
in reply to jetjetjet

We will see if I change to Fragminshots perhaps. But I have heard Warfarin is better with HS/APS and it has worked so far exstremely good with me. I let you know.

Yes you can give yourself a hug from me as you wish!

Kerstin

Reply
jetjetjet
jetjetjet
in reply to Lure2

Thank You, it felt Good !!

1 like
Reply
Wittycjt
Wittycjt
in reply to Lure2

Whatever happens I hope only the best for you🎯

Reply
Wittycjt
Wittycjt
in reply to Lure2

How right you are Kerstin. Can't wait to have what the U.K. has!

Reply
jetjetjet
jetjetjet
in reply to Tomcat

I need to get a map of the uk and start plotting peoples area's i can call people in England , Pm me if you are interested .I have memory issues and Alzheimer's in strong in my family both My parents suffered at a much older age than I am now but they didn't have the other medical problems i have so anyone's guess .

1 like
Reply
Tomcat

So its been a while, memory is slowly getting worse so I’ve asked to see a specialist again, at the moment it’ll only be a local one but I may seek a recommended one once I’m up and running. I’m also starting to see a memory specialist who seems to have knowledge of my condition so hopefully that will be of some use.

Hope everyone is doing ok?

Reply
Tomcat

Been seeing a memory specialist for the last six months in the hope that they could work out what was wrong, after numerous tests they’ve come back and said that I dont have dementia so they’re discharging me back to my doctors. Feel utterly devastated now as I thought I might finally get an answer to my memory problems.

Reply
HollyHeski
HollyHeskiAdministrator

Well good news you don't have dementia!

I see in your post your memory improved for the month you took B12 tablets - I wonder if thats the key and you are B12 defiecient which effects a lot of us?

Worth having a blood test to check your levels, as well as Vit D and thyroid panel.

Reply
Tomcat
Tomcat
in reply to HollyHeski

Fairly sure that’s been done before, think the doctor said that after taking b12 my levels where normal so they couldn’t prescribe me any more

Reply
HollyHeski
HollyHeskiAdministrator

My levels only stay 'normal' if I take the supplements. If I stop they immediately drop and my memory and brain fog comes back. I understood once defiencent I would have to take for life as there was no cure?

Reply
Wittycjt

Tomcat I don’t think you can overdose on B12... why not buy some supplements over the counter? Take them...

Then see how you feel.

Reply
Lure2

Hi Tomcat,

What sort of memory-issues do you have problems with?

Kerstin

Reply

You may also like...