limb weakness, fatigue and brain fog.

[frenchiemum]

Hi, i'm a 37 year old woman and newly diagnosed with APS after many years of being told by my GP that my chronic headaches were cased by depression and anxiety. Finally my Gp reluctantly referred me to a consultant were i was tested positive on all tests for APS, and the repeated tests after 12 weeks.

Unfortunately, since November my condition has greatly declined and now i have constant fatigue and limb weakness, some days i find it hard to walk. I have waited over 6 months to see my hematologist who i will be seeing this Wednesday and luckily is featured as a aps specialist. Dr Martlew. I was wondering what sort of questions should i be asking? and if anyone has had medication that has helped with these sort of symptoms? I would love to get my life back as soon as possible as this illness as already taken so much from me.

Thank-you in advance for your replies

[Yllek]

She’s my Dr and I’m seeing her on Wednesday as well!

I will send you a private message this evening.

Worry not, she’s fabulous x

[frenchiemum in reply to Yllek]

what a relief! i'm so looking forward to speaking to a Dr that can finally help me Thank you for your help yllek.

[KellyInTexas Administrator in reply to Yllek]

Yllek will be just the lady to help you!

Thank you, ( Yllek🇬🇧Kelly )

[Lure2]

Hi and welcome to this friendly site for APS!

It was a long wait for a consultation (over 6 months) after you had got your positive diagnose of Antiphospholipidsyndrom. Good to find a Specialist as that can be very difficult. So very few Doctors know about APS. Specialists often are a Rheumalogist or an Hematologist.

Tell him or her about your symptoms and also if someone in your family has had similar symptoms as it may run in families. Write everything down.

We need 1) a Specialist for this illness and 2) anticoagulation to thin our too thick and sticky blood. LMW Heparin or Warfarin are used very often.

Good Luck on Wednesday! Stay with us also.

[frenchiemum in reply to Lure2]

Thank-you for your response, I will start jotting down questions i can ask her on my appointment and will defiantly stay on this site, its a wealth of knowledge for a newbie like me.

[Lure2 in reply to frenchiemum]

So glad that you have had that positive answer from Yllek (her name is also Kelly) who knows a lot about our illness!

Fantastic appointment on the same day!

[MaryF Administrator]

Please do let us know how it goes with your new and 'recommended consultant' A lot of us do write out our medical history in bullet points, and also same for symptoms and medications so as to be ready for any appointment, planned or for the odd emergency. Make sure your Thyroid is tested along side, vitamin D, B12, Folate and Ferritin as if any of these are out of range it can make things a lot worse with regard to already being ill with Hughes Syndrome/APS. MaryF

[KellyInTexas Administrator]

I have heard nothing but good things about her and I’m in the USA! I am chatting with another lady in a very serious neurological situation right now in Wales. She has used Prof Martlew for many years now and speaks very highly of her.

It makes me feel very confident for your situation.

[Tomcat]

This Dr Martlew the one at Liverpool Hospital?, is she any good for neuralogical problems? (Memory related)

[Yllek in reply to Tomcat]

I suffer with neurological symptoms and see a neurologist as well as Dr Martlew. They liaise together on my care but the neurologist takes the lead when it comes to treating my neurological symptoms and Dr Martlew oversees my anticoagulation for everything else.

[Lure2 in reply to Tomcat]

Hi Tomcat,

We spoke a couple of years ago. That time you were looking for a Specialist and MaryF gave you some good names.

Do you have a Specialist now and are you now on Warfarin for your neurological symptom?

[Tomcat in reply to Lure2]

Hi, sorry my memory has completely gone these days, not under the care of anyone at present

[MaryF Administrator in reply to Tomcat]

There is a list over under 'pinned posts' on the right hand side of the forum, and also on our charity website: ghic.world/ MaryF

[Lure2 in reply to Tomcat]

What anticoagulation drug have you got today?

So glad you told us about your situation as we may be able to help you further perhaps! We all have different sorts of APS with different symptoms (also different neurological symptoms). I was helped with anticoagulation (Warfarin) only as i did not have much of a headache.

Brainfog, dizziness, bad memory (some times I did not remember what occupation my daughters had and if my parents were alive or dead), vertigo, doubleseeing, Amarousis Fugax (lost my sight on my right eye for some minutes). These things disappeared after I was at an INR of over 3.5 (best 4.0.)

[frenchiemum]

Thank you everyone for your advice and support. I will let you all know how I get on with my first appointment and hopefully she can help me with my symptoms.

Maryf, do I ask my GP to run vitamin tests? Or Dr Matthew? I have been low on vitamin d for a while now, so maybe I might be low in others.

[MaryF Administrator in reply to frenchiemum]

Hi, your GP can run tests for B12, D, Folate, Ferritin, general testing for inflammation, liver function etc etc and a Thyroid panel, however sometimes B12 and Thyroid testing is a bit scanty so some of us order our own tests if things do not show up in enough detail. Your specialist can also do these. MaryF

[ndstephens49]

Hi. I have similar symptoms of constant daily headache and limb weakness. I am still looking for solutions.

Nancy in West Virginia

[veganworld]

Hi Frencjiemum

I have been through this myself. I was diagnosed with APS and started on Wafarin twenty years ago. I i felt better quite quickly within weeks but it took a while for my limbs to feel better. I am not 100% but I have a good quality of life now. It took 6 to 9 months to be able to go shopping or a reasonable walk. For me I found that building up steps a little more each day and resting when I had fatigue slowly improved the condition. I also like many others on here follow a gluten free diet. Be patient you will get there and the black clouds will lift.

xx Kaz