Numbness in legs

[DebsT]

Hi I was diagnosed with APS in 2011 whilst going through IVF. I have been on aspirin daily since that time. This week I got out of bed and lost the use of my legs and collapsed on the floor. Thy were completely numb. My face also went numb and my lips. I ended up at hospital with a suspected TIA but the results did not show anything. I have had a migraine headache since. Has anyone experienced anything like this? I am not under a consultant and feel I should be but the GP does not seem to know anyone that specialises in APS. I have recently got some names from the Hughes Foundation.

[MaryF Administrator]

HI, the list of names from The Hughes Syndrome Foundation is useful, you need your GP to refer you very very urgently to the one nearest you, in the mean time he could be re doing your tests to see what is going on:

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

Should this happen again, please do go to hospital, and be very firm about your diagnosis. MaryF

[DebsT in reply to MaryF]

Thank you. My INR results were 0.9. Is that normal for APS? The consultant at the hospital did say that he thought it could be MS. However, both illnesses are supposed to be similar. I just feel a lot of people don't know enough about APS.

Thanks

Deb

[MaryF Administrator in reply to DebsT]

Sometimes MS is diagnosed by mistake due to overlapping symptoms, it is vital you have a consultant who fully understands Hughes Syndrome/APS. Concentrate hard on getting a specialist and if you can write your history in bullet points,, and other relevant family members, who have had early heart attacks, strokes, miscarriages and any autoimmune problems including Thyroid. The tests are vital. Also get them to do you Vitamin D, B12 and Iron plus a Thyroid panel. Try and get some support to attend appointments with you, a trusted articulate friend, colleague, neighbour or relative. MaryF

[MaryF Administrator in reply to DebsT]

I will also add it is better to take those forms to the hospital and do the tests there as the samples taken are time sensitive, and not good if left hanging around for collection for too long. MaryF

[DebsT in reply to MaryF]

Thanks I think my last blood test about 18 months ago showed low vitamin D and iron. I did not know they were linked?

Thanks again.

Deb

[DebsT]

Thanks. I appreciate that. I am going to the GP tomorrow. I am going to be very insistent about the referral. I don't want to experience anything like I did last week again.

Thanks again for your help.

Deb

[DebsT]

Thank you. I am having an MRI scan on Wednesday but that was to look for MS despite me telling them I had APS. No one seems to know enough about it. My GP looks at me blankly when I have asked for closer monitoring of it in the past.

Anyway thanks for your help.

Deb

[MaryF Administrator in reply to DebsT]

where abouts are you located, you must get a specialist and yes to what APsnotFAB is saying about scan, I suggest you write t your GP, use secretary's email address marked for their attention, marked urgent if you need information to put on this, come back to me and I will help you. MaryF

[DebsT in reply to MaryF]

I am in the Ribble Valley but I could travel to Manchester. I am not sure if anyone knows of a good specialist in that area. Just been trying to get hold of Professor Charles Hay's secretary in Manchester to no avail.

Thanks

Deb

[MaryF Administrator in reply to DebsT]

There are some good specialists in that area on the list, Manchester. MaryF

[Budleigh]

Hi debs I to woke up on the 30 august with numbness and a swollen right leg I am still in hospital now an I have had MRI ,CT scans of my leg and brain my leg has shown that I have bad dvts which I already have in both of my legs the book is flowing down but not back up ...... So l am going to rehab to he!p me walk again . whilst I have been in St Mary's hospital in London they have found out that I have other problems which they are trying to sort out .... Professor Beverly Hunt said that my inr should be 3_4 ...so get your self some professional help from people who no about aps Syndrome an.you should be OK .but I was told by Professor Beverly Hunt that I am going to be on a dollar coaster ride ....i wish you all the best ..

[DebsT in reply to Budleigh]

Thank you for that. I am sorry that you are really going through it. I am hoping i can get a referral today to someone. Take care of yourself and I hope you feel a lot better soon with the right care.

[MaryF Administrator in reply to DebsT]

You need as suggested previously to nominate if possible somebody to help you fight your corner, and MP if necessary you need swift help. MaryF

[Budleigh in reply to DebsT]

Which country you from

[DebsT in reply to Budleigh]

Hi I'm in the UK. Near Manchester.

[Maybells]

I'm currently going through the same thing. I currently I have a completely numb thigh and tingling everywhere else, which is constant in my arms, feet and face. I'm also on aspirin and waiting to be seen by the consultant.

[DebsT in reply to Maybells]

Heck that is worrying. My numbness has a worn off now. I hope you get seen soon.

Deb

[helentad]

Vit B12 deficiency of pernicious anemia. I had the exact same with my left leg git up and fell over and it was never diagnosed roll on quite a few years and the same happened but below the waist completely gone (not even able to go to the loo) and I was in hospital for 5 weeks total. My aunt is a nurse and told me to ask as the docs had no idea so they tested my B12 and it was in my boots the treatment was high dose B12 every other day then once a week then monthly then every 6 months although I am now on monthly again.

The original episode left me with foot drop and some lack of sensation the second time weakness in both legs.

Hope you find out what caused it and it goes quickly.

[DebsT]

Thanks. I will ask them to test B12 and iron. I am glad they got to the bottom of it with you.

Thanks

[Lure2]

Be sure you take one from the list that Mary spoke of. The Specialists are very rare but mean everything for us with APS.

I have had micro-embolies and they do not show up on a Scan of today.

Read also "Sticky Blood Explained" by Kay Thackray. Good book for us to understand our illness better. Also good for relatives. She has got APS and writes about the different symptoms. Written some years ago so not the latest oral drugs in it.

Best wishes from Kerstin in Stockholm

[DebsT in reply to Lure2]

Thank you. I will have a look for the book.

Deb

[CarolBSL in reply to Lure2]

Hi Kerstin, you mention that micro embolies don't show up on a scan, why is that? I ask because on Tuesday I was in hospital with a really bad attack of vertigo, the 'spinning room ' type with vomiting, so because of my APS they did a ct scan but nothing showed up, and apart from some dizziness and awful fatigue I've got through it. Not the first time this has happened I add.

I am APS serum negative. Aspirin only medicated. Severe migraine - Topiramate medicated.

[Lure2 in reply to CarolBSL]

I had TIAs or microembolies like you and positive antibodies and was put on Baby-Aspirin which worked for me some years but had to start anticoagulation with Warfarin as I became worse.

I have read and heard of people who have had a stroke and sometimes they have to wait a couple of days to see something on a Scan. I know very little of this I must say.

I have always had micro-embolies and those tiny clots are not seen on a Scan of today. They are common with neurological symptoms like we have.

I wonder if you have got an APS-Specialist as you have had APS several years now and perhaps you need something stronger like anticoagulation? Where do you live?

I also suggest you read "Sticky Blood Explained" by Kay Thackray. She has got APS and she writes about the different symptoms we have. That book meant a lot to me as I understood that I had APS (which I perhaps denied) and had to start Warfarin. It was like a miracle. The symptoms gradually disappeared.

Try to educate yourself about this illness as there are so few Doctors who know APS. A Specialist of APS (usually a Rheumatologist) knows the "cousins" like SLE, Sjögrens and Thyroidea-illnesses also. I am primary APS but there are many members with SLE or Sjögrens also.

A Specialist of APS knows that we can be diagnosed by symptoms even if we have negative antibodies and that the antibodies go up and down.

Kerstin

[CarolBSL in reply to Lure2]

Thank you Kerstin, like you I have a long complex history of APS symptoms, the worst of which was my first pregnancy with severe pre eclampsia - liver and kidney failure and DIC ( disseminated intravascular coagulation) but thankfully a dear son delivered 8 weeks early and now 31. I've read the book a couple of times. As you say, I find myself worsening in health and feel aspirin is no longer enough and have read that the body actually becomes unresponsive to the therapeutic effects of it after long term use. I feel more specialist advice is needed, I'm seeing a new neuro for worsening migraine in November as my own has left the local hospital at Mansfield. So I'm going to the Queens med at Nottingham. I will take it from their and see how it goes and take matters up with the GP. Thanks for your advice Kerstin.

Kindest regards.

Carol

[Lure2 in reply to CarolBSL]

Perhaps you also know that the Neurologists do not "get" what APS is about - too thick blood. So think of the possibility to have a Rheumatologist or a Hematologist who usually understand APS and where the "Specialists" often are to be found.

I understand you know a lot about our illness so I wish you Good Luck for the future.

Kind regards

Kerstin

[HollyHeski Administrator]

I have APSs and have had 2 cvas & many tias. I am aware that their is a particular migraine that mimics strokes, difference is it effects both legs and not just one side. They come with or without a headache. Whatever your symptoms, you need a specialist, with APSs, nothing can be glazed over.

Be a 'dog with a bone' and get those answers.

[DebsT in reply to HollyHeski]

Thanks. Will do. Appreciate that.

[Yissica]

Hi I was like you -APS diagnosed with IVF. Aspirin for 7 years then a TIA out of the blue. No evidence on CT or xray but confirmed by symptoms. Put me on heparin and then warfarin with another unregistered TIA a week later.

Stroke consultant shocked I had no APS consultant so referred me urgently himself.

Fight for that referral. And good luck.

[DebsT]

Thank you.

[Twadd]

Please get an urgent appointment. This happened to me before my diagnosis of APS and I feared MS. I went to my GP but before I got to any referrals I had a heart attack caused by a blood clot!

[DebsT]

That's terrible. I have been referred to a consultant in Manchester but unfortunately they said it will be 2 weeks. Going to have to try and find a private consultant whilst I am waiting for the nhs appointment. I feel like a ticking time bomb at the moment.

[Lure2 in reply to DebsT]

Hope you will finally find a Specialist of this rare illness (APS) ! Good Luck

Kerstin

[DebsT in reply to Lure2]

Thanks Kerstin.

[kbmis003]

I have numbness and tingling off and on in my legs, feet, hands. I have had pain attacks in my legs that are very painful and I can't walk on them. It usually goes away after 24 hours. I also take aspirin. I have just recently added Natto Kinase. A Dr. told me that the two together would be good. There are not any APS specialist around where I live either. So I am very thankful for this blog and for the people who share their symptoms and for those of you who manage this site. I don't respond too often, but I do read and share with my doctors what I have learned, because I realize they do not know very much about APS.

[DebsT]

Thank you for your response. I am not sure if my numbness is linked to migraine as I often get a migraine after the numbness. I will look into the Natto kinase you mentioned.

[Lure2 in reply to DebsT]

You have symptoms of APS and need a proper anticoagulation. An Expert from the list here (you live in England) would help you to feel good again. We have too thick blood!

Now you must work really hard on getting a Doctor. Those who live in the US (many of them) have problems to find a Doctor but you live in England which is top No 1 of countries with good medical care.

Kerstin

[DebsT]

Thanks Kerstin. Seeing Professor Ian Bruce tomorrow at Manchester. All of my bloods are okay except for the caridiolipin antibody IGm test being 194 so I think that is high. I really hope he can help tomorrow.

Thanks again for your response.

Deb

[Lure2 in reply to DebsT]

Tell him that you collapsed on the floor and that some of us have microclots that do not show up on a Scan of today. If he does not know that already.

Write your questions down and GOOD LUCK tomorrow!

Kerstin

[DebsT in reply to Lure2]

Thanks Kerstin. Yes I am going to write everything down. Otherwise I will forget!!

Deb