Walking problems

[Katlady]

I found out 6 years ago I had APS, since then my walking as got worse. I can't go out with out help. I was told today by my consultant that my legs will get worse !!! Does anyone else have the walking problem !!!

[Lure2]

Where were you diagnosed and was it an APS-doctor involved?

It is common with balanceproblems, dizziness and feeling "drunk". Also difficult to navigate and find your way with this illness . Especially if you are not enough anticoagulated!

Do you have pain? Could you please tell us a little more about it so we can understand how it is related to APS? We all have APS here and we would like to help you if we can.

Best wishes from Kerstin in Stockholm

[Katlady in reply to Lure2]

I am under a Nuro consultant who is a MS specialist , that's what they thought I had at first. I'm on warfarin . It's the spinel cord that's damaged so I my legs feel numb all the time. It's not dizziness. I came off pain tablets as they made me sleepy and I need to be alert when I walk. My INR target is 3, but it is never stable.

[daisyd]

I have hydroxychloroquine prescribed as well as warfarin, It has helped me walk in a straight line and also my balance, I no longer fall almost weekly as I did before.

Just an idea

[Lure2 in reply to daisyd]

Hi daisyd,

I do a balance-programme every day (if I do not forget it). I have a rather good balance but that is perhaps because I have trained it and I also take walks every day (at least I try to).

Best to you and a nice weekend from

Kerstin

[Lure2]

Hi again, Do you live in England and was it an APS-doctor involved?

Has your MS-Neurologist contacted any specialist in APS?

You can have spinal cord problems when you have APS. I have learnt that warfarin can help a lot. How long have you been on warfarin? I am sorry that your warfarin is not stable. I think you should perhaps feel better if your warfarin was stable and not under 3.0 but perhaps a little bith higher. Most of us with APS feel better if the warfarin is over 3.0 or 3.5 in INR as we have too sticky blood.

I wish I could help you better but I think you should try to find an APS-specialist.

Look at hughes-syndrome.org/selfhel... in your area. (If you live in England)

Kerstin

[Katlady in reply to Lure2]

Thank you for your reply, it was most helpful

[daisyd]

Hi Kirstin hope you have a good weekend too. It will be very special for me my son who was born at 1lb 14oz 867 gms

Gave me 2 wonderful grandsons the 2nd is 1 this week, I feel really greatful and lucky. Years ago I suffered from severe Dizziness I was prescribed betahistine which has improved things

Back to balance, I tried balance exercises which helped a bit, but then it got worse I fell up the stairs daily, tripped weekly anyway it took 2-3 days for me to notice I was better in balance anyway

Once starting hydroxychloroquine

I have cerebral APS