Possible TIA

[Maybells]

I was diagnosed with a transient case of APS following multiple miscarriages and prem birth. Inbetween miscarriages, I often had sensations of numbness and tingling. Following the birth of my daughter, 2.10 yrs ago it all stops, my bloods were clear and I've been fine.

This week I haven't been fine. It started with a numb and tingling left thigh. Today my thigh, face, arm and toes all went numb, with tingling sensations - all on the left side. My face literally felt heavy, yet I didn't experience any loss of functionality. Just numbness and tingling. It's all passed now, with the exception of my leg and face still doesn't feel right.

The doctor has told me that if I experience any loss of movement, droop call an ambulance, but otherwise just take aspirin.

I'm feeling a little in limbo now. Surely this isn't normal? I feel that due to the "transient APS" label and not being pregnant, it's not being taken seriously.

[MaryF Administrator]

HI, there, do you have anybody other than your GP managing your Hughes Syndrome/APS? This is an unstable condition and can change at any time.

You must certainly seek emergency care promptly, if these symptoms persist, and if you have not been referred to a consultant who specialised in Hughes Syndrome/APS outside of of your pregnancy, now is the time. It is in the interest of your GP as well as yourself. If you need back up take your most trusted, friend, relative, partner, colleague or neighbour along as your advocate. Where are you located?

When they do test you, make sure all detail is covered beyond the Hughes Syndrome/APS tests also get your B12, Iron and D done plus a Thyroid panel as it all adds to the picture!

Bottom line be firm and do not be fobbed off. MaryF

[Maybells in reply to MaryF]

I'm from Christchurch, Dorset.

Unfortunately I've discharged by my heamotologist following the birth of my son 6 months ago.

In terms of APS management, there is no management. It's been viewed as only relevant during pregnancy.

Thank you for the advice. I will pursue the doctor tOmorrow and push for some tests. At the very least, I want my levels checked.

[MaryF Administrator in reply to Maybells]

Here is the list of specialists if you need a re referral: hughes-syndrome.org/self-he...

MaryF

[Budleighgeorge in reply to MaryF]

Well said

[Maybells]

Many thanks. My former is on the list. Hopefully my dr will arrange another referral.

[Lure2]

Hi Maybells,

Please follow the advices from Mary!

I wonder if you are on baby-Aspirin daily or if you only take it when you have symptoms, like your Doctor says.

When you are on Baby-Aspirin have the symptoms improved? Most certainly you need to be on a daily anticoagulation drug of some sort. You need a Doctor who knows APS very well and how to treat you.

Best wishes from Kerstin in Stockholm

[Maybells in reply to Lure2]

Hi Kerstin,

I was told an anticoagulant wasn't necessary following the birth of my son, so I haven't been taking anything since.

This is the first time I've experienced anything out of the ordinary in 3 years, so perhaps an element of complacency has seeped in?

I've taken a baby aspirin today and will continue to do so. I will definitely be following up with the the gp tomorrow as I'm now experiencing tingling/numbness in both legs.

It's so bizarre

[Lure2]

Hi,

You must look for a referrel to a Specialist as Mary has suggested as this is an unstable condition! Very important!

My symptoms started like that and to begin with babyAspirin helped but we are all individuals. I got worse and had to have Warfarin and now I have no symptoms.

Read "Sticky Blood Explained" by Kay Thackray. She has got APS herself and writes about the different symptoms from this illness. Many members on this site have read the book and liked what she says.

Kerstin

[Yissica]

My advice is get seen ASAP.

I was like you and diagnosed with pregnancy APS during IVF and never referred to a specialist following the birth of my daughter. However I was advised to continue on aspirin 75mg daily for prevention/peace of mind. This was fine for 7 years then.....

2 years ago during a stressful time at work I suffered a TIA lasting 45 minutes. I lost functionality in my right arm going dead and unresponsive. Apparently I also slurred speech but was not aware. I called the ambulance on myself and by the time they arrived the effects had gone back to normal. With my history they took me to the local A&E who did no tests and decided at 4 hours to say I had a panic attack and sent me home.

My husband (a local GP) took one look at me and immediately called the local A&E via our on call GP service and I was re-seen within the hour with a decision that it was a suspected TIA. No evidence on MRI scan (expected if under 1 hour). I was put onto heparin immediately but as they did not weigh me they got the dose wrong and I had a second one 1 week later in front of my husband.

The stroke consultants were horrified to find out I was not under any APS specialist and organised the urgent referral themselves.

I'm now self monitoring on warfarin and hopefully in safer hands.

[Maybells in reply to Yissica]

Thank you. It sounds like a familiar story. I'm off to the see the doctor this morning. I'm preparing for bit a fight, but as it stands, I still can't feel my left thigh, I'm hands, feet and legs are constantly tingling. I can't see how they can fob me off?

[Lure2 in reply to Maybells]

Good Luck and let us hear how it goes please!

Kerstin in Stockholm

[Maybells in reply to Lure2]

Thank you! I will do x

[LK1123]

Praying for answers for you. I have had 5 miscarriages with no live births and suspected blood issues. They've run a slew of tests and the only thing consistent over the course of a year has been been high RBC, hematocrit and hemoglobin. Along with tachycardia that's unknown if related. Your post caught my eye though because just over a year ago I was diagnosed with Hemiplegic migraines. Each time it happens it appears to be a stroke/TIA. Left side paralysis, slurred speech, disorientation, trouble making sense, etc. it wasn't until my symptoms lasted longer than 24 hours with a clean MRI did they say it was this type of migraine. I'm often dealing still with the tingle and weakness in face and arm and leg and never the typical migraine. Some days a migraine does follow the scary episodes but not always. They can't determine if all of it is related but I can't help but think it is since it started all at the same time. Curious to see what your doctors say.

[Maybells]

Just a short update. My doc gave me everything I asked for. Bloods first, then a referral back to the heamotologist. His words "you know your own body and whatever is going on we'll do what we can to get to the bottom of it".

Having learnt from his experience with me, he also mentioned how he helped another lady with APS by putting her onto the fragmin the moment she fell pregnant and dealt with the consequences afterwards. She also had a successful pregnancy.

I'm feeling reasured

[Lure2 in reply to Maybells]

And that is to have an experienced APS-Specialist who does not only know about pregnancy-issues (perhaps reading from a book). You have now neurological symptoms and need perhaps stronger than Aspirin.

Your GP is doing what he can but I wonder if your former Hematologist is going to do that a second time? Hope so!

Good Luck and stay with us.

Kerstin

[Maybells in reply to Lure2]

I believe he will. The last time these symptoms presented themselves he did suggest a neurologist. However, once i started the heparin, the symptoms stopped.

We shall see. At least it's moving in the right direction.

[Lure2 in reply to Maybells]

Then you should be on anticoagulation as i guess Aspirin is not enough today. Is it?

Please do not wait any longer!!

Kerstin