My Journey has reached Haematology! - Hughes Syndrome -...

Hughes Syndrome - APS Support

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My Journey has reached Haematology!

Greenmil3
Greenmil3

Just a little update for all that have followed my journeys over the last 3 years or more. I have now been removed from the lupus clinic at Guys and have a telephone appointment with Prof Beverley Hunt later this month. My diagnosis has been confirmed as Cerebral APS so at least I now have that to cling to as Neurology said no MS or other degenerative disease. Although Cerebral APS is doing a good job of destroying my brain all on its own!

I am hoping for a good conversation with Prof Hunt but not sure there is anything more they can do than the drugs I am currently on.

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HollyHeski
HollyHeskiAdministrator

Thanks for keeping us in the loop, it's one step forward etc...

Whether they can give you any thing else is unknown, the good thing is they will look after and support you.

I am under Prof Hunt, with triple positive cerebral APS, I'm monitored closely, slightest thing I am referred straight away. I live 200 hundred miles away from St Thomas, this doesn't make a difference.

The only thing I can it may not be Prof Hunt herself on the phone, but don't worry all her team are excellent.

Greenmil3
Greenmil3 in reply to HollyHeski

Holly thanks for that I am hoping it is Prof Hunt as she has been involved with my case conferences I too am triple positive as I finally worked out my blood results that Guys Hospital were sending me! I am a little closer so would be able to visit once we are able to travel. How much is your brain changed with lesions?

HollyHeski
HollyHeskiAdministrator in reply to Greenmil3

Initially quite a bit plus damage where strokes hit, but now 15 years of being looked after and the correct balance of anticoageration and platelets it hasn't got any worse 🙏

MaryF
MaryFAdministrator in reply to HollyHeski

Great to hear that vote of confidence, so pleased for you and also if this is the case, also for Greenmil3 I am there also but my symptoms are less severe. MaryF

Hi Greenmil3,

It is good that you now know what you have got and also you have a good APS-doctor. That is two important things for us to have; a diagnose and a Specialist!

I live in Sweden but I am also triplepositive with high titres and cerebral symptoms. Our answer to this illness is thinning the blood.

What drug do you have to thin you blood? It is not sure the APS will damage your brain if you start anticoagulation with the INR the Prof decides. She knows APS.

Greenmil3
Greenmil3 in reply to Lure2

Lure I have been on warfarin for the last 3 years but suffer from TIA’s that have left me with lesions all over my brain and even in my brain stem so I have all sorts of effects and issues

Lure2
Lure2 in reply to Greenmil3

Have you got those TIAs after you have started Warfarin? Did you have Warfarin even if it was MS?

What therapeutic level of INR have you got during those 3 years?

Greenmil3
Greenmil3 in reply to Lure2

Had Neurology investigation not MS and yes have continued to get worse even on Warfarin with more lesions. Levels started standard 1.5-2 then 2-3 now on 3.5-4 average around 3.9-4.2

Lure2
Lure2 in reply to Greenmil3

INR 1.5 - 2 was very low for APS. Sounds good now at that present INR-level. I am happy for you that you will see prof Hunt later this month. Good Luck!

Greenmil3
Greenmil3 in reply to Lure2

Thanks very much x

I have cerebral APS... INR 3-4 I cant say warfarin has improved me.I have lesions on brain,balance problems,memory and odd speech at times,trippy jerking walking alot but then in a flash for few yards walk normal. I am worse when has to have a mri or been in dentist and cannot walk.look really bad even thou husband hold onto me all time.does it effect your walking and are your symptoms worse during times I mentioned.

Greenmil3
Greenmil3 in reply to Fra22-57

I have the balance issues sporadically have tablets for that. Memory is almost non existent feel like I have Alzheimer’s as remember my child hood but not three days ago or sometimes not ten minutes ago sand names are a no no for me! If I get stressed or under pressure my speech completely goes. My walking is ok but get fatigued and shaky legs. Warfarin hasn’t improved me but I’m hoping it’s stopping further deterioration. I know when another bit of brain is going down the tubes because I get what can only be described as a migraine x10 and get laid up for a few days then I get the fun of what’s gone wrong now! I have disturbed vision and constant tinnitus as well. I really think there needs to be a lot more investigation of Cerebral APS patients as it is so debilitating. But as Dr Paul Holmes pointed out if we can’t diagnose it specifically then we won’t know whats wrong as there is so much we don’t know about the brain!

Take care and hope your not having a bad day. Xx

Just wanted to wish you all the luck in the world, now and in the future. I I was diagnosed with cerebral lupus when I was 48 and I am now 66. It's been a long road but I can now say that I am relatively stable and with no more deterioration. Take care. Stella

Yes I agree more investigations need to be done.You seem to get labelled,dosed up and left thou.take care

Yes there is. You need to change your diet to a low carb high fat moderate protein diet. You can do this as a vegan or ominivore. No sugar no grains and no seed oils which basically means zero junk food. Generalized inflammation only aggravates everything. Look up Seeking health and consider having your genes checked for SNP’s and see if you can assist your whole body metabolism. Get the book called Dirty genes.

I agree with nmousdic re diet modifications. Back in 2001 I was never dx as " cerebral APS,l but an MRI showed that what I had called ." migraines" had actually been mini strokes. Starting what was for me the right dose os warfarin changed everything! And a follow ip MRI showed that most of those stroke leisons were gone. Perhaps your warfarin dosage was too low and higher dose would work better? I'm sure you are now in good, educated care.

My heart goes out to you. APS has hit me hard too. It has affected my legs & arms (currently in a wheelchair ). I recently have embarked on a new journey to try to heal my self. Have you ever heard of Dr. Wahls. She had MS & was in a wheelchair. After much research she healed herself with diet. Some Ketos (fasting 12-14hours which is easy if it is when you sleep), meals protein & vegetables. Here’s the hard part-no PROCESSED FOODS limit sugar intake. I do a smoothie late morning with berries, spinach (which you do not taste), coconut milk, and any supplements (I use stem cell, EMU (which is on her website-nots of nutrients our body needs but foods are deficient in it now) & collagen.

I have been doing it for about 3 months. I feel much better.

She has a new book on Amazon that you can download. No I do not have MS but like you APS which is autoimmune

Best of luck.

Designer16

What is cerebral APS?

Greenmil3
Greenmil3 in reply to Louloubug

For me it’s where I have had no DVT’s but just multiple TIA’s or similar caused by the APS so they named mine Cerebral APS that’s probably a bad definition as I can’t remember what Professor D’Cruz said

I would, call the heamo and follow up, question's. Tip, get yourself a couple of notebooks. And write everything down.

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