Sam, I can share some of your frustration at having yet another thing to confront. About 12 months ago I was diagnosed with clots in my leg. Used clexane for a few days and have been on warfarin ever since.
The upside of this (???ha ha) is that i have to have my blood checked regularly so I see the doc pretty often.
I only have an INR which is just a finger tip blood test so it's not too bad. I'm going to ask when I go in today how long I have to be on warfarin but I suspect it's forever!
One thing which occurred to me is that the newly raved about liberation treatment where a procedure to increase blood flow to the brain is performed , may be just what the warfarin does. Could this explain why i have been so much better for the past few months? I still have the crappy legs syndrome but overall I have been enjoying a much improved sense of wellbeing.
I'm not on tysarbri and am unlikely to go down this path. I put the clots down to a much reduced activity level and have tried to be more active like gardening - walking any great distance is beyond me!
All the best Sam. Thinking of you. Jill

Hey Jill,

Thanks for the reply-did not know you had this all too-The Liberation treatment I am not that familiar with (will have to look it up). I am having a bit of a flare at the moment I think as I have some sensory things happening in my groin and legs like severe sunburn feeling but other than that I have felt better this week. It has taken me 8 weeks to not feel pain from the embolism in my lung but returned to the gym this week for the first time-lasted 10 min on the treadmill which I realised how much it all took out of me.

I am at this stage only on Warfarin until July as it came back that my blood tests show I do not have the gene that makes me more susceptible. Have you had this blood test done??? It determines whether you need to stay on it for life or just 6 months.

Let me know if you have.
What kind of crap do you have with your legs at the moment?

Take care

Sam xx

That's a test I have not heard of - I'll ask the doc when I see her next week.
Crap with my legs - sheesh- where do I start? It's both legs. Feels as though I am wearing surgical stockings most of the time. When I wake up it feels as though the blood in my legs has turned to cement but as soon as I get up and begin moving about the stiffness goes , leaving me with the stocking feeling. I am not in any pain, just discomfort.
Incidentally , my doc says that feeling like 'crap' is a medical term!!
Jill

Hahah "Feeling like crap"-did not know it was a medical term!!

I am just getting over having bit of a flare up I believe. Had awful sunburn feeling in my right leg, top of foot and ankle and it slowly over a couple of days spread across my pubic area into the left groin. It has subsided thank god but my Neuro was hesitant to treat me with steroids because of the Warfarin. It has almost all gone. Hate the feeling of banding on the legs and heaviness like you describe. I know it is uncomfortable.

Let us know how you go okay

Sam

Sorry I am coming in late on this. Hope you are feeling better Sam & sorry to hear both of you had pe too.
I had superficial blood clot last year but didnt need warfarin for it so was lucky in that.
I know what you mean about crappy legs. I finally saw the podiatrist last month, could not feel what she was doing on left foot even when she cut one toenail too close & it bled. Could only feel the right foot as if through a cushion so that was weird.
I had a flare in Jan with optic neuritis etc then various other issues. memory is shocking in all ways as is concentration.
For some reason I have not been getting any updates from this site with the digest which I used to do so will make more effort to check in more.
If you want to know what my last week was have a read of my journal or the post in main board - grumpy bladder - another funny medical term LOL.
Take care both of you.