Hi, I was diagnosed with APS in 2005 after a stroke, and years of having all the APS symptoms.

[DelH]

I lost a small amount of movement in my left hand, and significant cognitive problems, but overall was very lucky. A couple of months ago I felt my left thumb go numb for a few minutes and felt a bit out of it for about half an hour. Since then I have had periodic numbness in my thumb and some numbness in the right side of my face. This isn't consistent though and does feel better some days. I will be having an MRI soon, but a Consultant thought it could be a migraine (I did have a bad headache for 2 days afterwards). I think I was most worried about it affecting the hand in a similar way (but less severe) as my stroke. Does anyone else have experience of something similar? I'm not sure if this is an APS or Stroke issue, but would appreciate any thoughts.

[MaryF Administrator]

Hello there, this is very typical and lots of people on here with you will be able to advise you and also will report of similar incidents. Lots of blogs on here tell of similar episodes. I hope you have a rheumatologist or haematologist looking after you with good liaison with GP. Please do keep us informed. Mary F

[jessielou]

Hi del

Welcome and glad you found us. I have similar episodes, headaches, numbness, loss of use. Doctors believe migraines or temporal artritus, strange that they worse when inr is low.

My partner says at times my speech is awful, new Gp talking about mri to check I'm not having tia's.

Aps in itself does cause headaches, and other symptoms, so can be difficult to come to right answer.

Hope others will be along with answers too.

Hope today is a better day for you.

Take care gentle hugs love sheena xxxx

[Hidden]

That's difficult to say really and I can understand why you're so worried. It could be a severe migraine or even a TIA at worst. When I had a TIA (transient ischaemic attack) or mini stroke, I experienced extreme pain in my head, had face tingling and lost the vision in my left eye for about a minute.

If it is TIAs they won't necessarily show up on an MRI scan as they are fleeting clots. Are you on warfarin or aspirin following your stroke? It may be that you might need a stronger anticoagulant or, if you're taking warfarin, you might need to up your INR range. You really should speak to your stroke specialist about this and let them know what's happening.

[pumpkincake]

Hi Del,

I agree with Mary in that it seems to be a common issue with many people.

In saying that though del...as KateH stated it MAY NOT be just a common type of problem. I have these fleeting symptoms as well at times but there are times when I get concerned that it may be more as in a TIA.

It is a scary thing to deal with..I know. You know your body more than anyone. If you feel it is just not right then please get yourself checked out. My theory with this is better find out and be safe then let it go and have a potential bigger problem that may have been helped.

Sometimes we just loath going to the doctor for every little thing. I stopped listening to my body and thought why should I even go to the doctor. It was not a good idea. I had a problem one day with my vision and waited a few hours then went to the opthamologist who sent me to the hospital because he believed I had an occular stroke. I was much younger then and didnt believe I could be having a stroke. So I drove home and set up care for my daughters for when they got out of school....got a bite to eat thinking I would be waiting in the Emergency room forever before they checked me out and sent me home. I went through Mc Donald's drive through to get a drink and drove to the hospital.

Well needless to say I had an occular stroke. I should have listened to my body. I wasnt too young to have a stroke with APS but I didnt know that until then. I learned since then that we can have TIAs even on blood thinnners.

So please listen to your own body and dont wait as I did.

Sorry for that long story...but we all have to take these things seriously when they are out of the ordinary.

Take care Del...

[DelH]

Thanks for the advice! I am on Warfarin and Aspirin, and have my INR between 3.5 and 4. I feel rough when it is below 3.5, but when it has been above 5 a few times, I've also felt really rough. It's always frustrating as the Haematologist says it is to do with my stroke and the Stroke Consultant says 'it's probably your APS'!

Hopefully I'll have more answers soon..........

[Manofmendip]

Hi DelH

In 2002, I had numbness to the fingers on my right hand, which was the firs that I knew about something being wrong, which lead to me seeking help and getting Dx with APS. the numbness first happened to my ring finger on my right hand and lasted about 30 minutes. Typically, I used to then get it starting in my little finger and spreading to all fingers and then clearing again in the same way, little finger first, after about 30 minutes.

I used to also get classical migraine symptoms too.

I am on Warfarin, INR target range 3.8 to 4.2 and 75mg Aspirin od. I add Fraagmin (Heparin) shots 5,000IU od when my INR is below 3.3 and, if I have to come off Warfarin for surgery etc., then I convert to Fragmin 15,000IU od.

I still get dizzy spells, dull headaches and issues with joint pain and stiffness in my right hand and arm and I am waiting for Prof Hughes to advise on trying long term Fragmin instead of Warfarin, as I often feel much better on frgamin than Warfarin.

Best wishes.

Dave

[DelH]

I used to have an excellent Haemotologist until he retired, but the one now just doesn't do anything other than look at my INR. She says that there is 'no proof that a high INR reduces APS symptoms', to which I asked, 'well how can I accurately guess my INR so often then??'. I just wish there was one person I could see how understood about APS and strokes. I think I would actually get some help then, rather than being fobbed off. After my stroke I saw the Consultant privately, so now I am being referred to the NHS Stroke Clinic for the first time. Hopefully the Neuroloigist may be able to help more.

I didn't know there was an alternative to Warfarin and Heparin, I'd love something that could keep me at an INR of 4.

Thanks again for everyone's comments