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Derek1987

SSDI application assistance

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50 minutes ago, Derek1987 said:

I'm still waiting for my long term disability to be approved through my now ex employer. They called me today and asked for an extension. They are going to have a meeting with a nurse and vocational expert I think he said to determine if i can work. They already have the evidence they need to show I'm screwed up. Now I gotta wait up to 30 more days for a decision. 

I love how they work. When I was on short term disability they told me someone with my condition should be healed by now and that since my specialist is a nurse practitioner, she is not credible enough. I was referred to her by a cardiologist. After threatening legal action, they approved me. But now a nurse can determine if I'm eligible for long term disability. These past few months have been h***. If they don't approve me, I'm screwed. 

Did you question them on that? I know that I pay for disability, one before taxes and one after tax. The short term is after, so it's tax free when collecting, but only good for 6 months I think. The long term is through my state pension, which is taken out before tax. For short term, they just need a form from a doctor. Long term I have to see their doctor too. 

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11 hours ago, JimL said:

Have you gone to a vascular doctor for the leg? I had 3 clots in my right leg since 1993. I get swelling. Just had a follow up with a vascular doc. First one in 20 years. Clots are still there. I'd been wearing knee high compression stockings since the beginning, 30-40mm pressure. Now with POTS, I wear thigh high 20-30 on both legs. Losing weight brought the swelling down a bit. Lost 3" in circumference of my calf  losing 170lbs. 

I only get swelling if I stand or walk for more than 5 hours straight, sometimes it takes a little bit longer. My leg hurts so bad I cannot even tolerate a regular sock on the bad leg. I have to cut the tops off my socks for my right leg and they barely go up to the beginning of the ankle very loosely. Forget about the 30-40, no way, pure torture. The 20/30 ones I used to use for two years after the clots and they really helped but then the leg pain forced me to stop wearing them. I still have three areas in calf and also behind knee with chronic clots and that is where all of my pain comes from. Will be seeing a vascular doc this coming week and see what happens. Most just say there is nothing they can do. 

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11 hours ago, p8d said:

I am apparently the exception here.  I was awarded SSDI on my first try with no lawyer.  I received the letter/money six weeks after applying.  I was told I would probably be denied the first time.  What I think helped me was that I had sudden viral onset that was well documented.  I had a work history from age 14 to 52, I think that’s important.  My Drs, PCP, 10 specialists and finally my dysautonomia NP documented every symptom and test result and my neurologist wrote a letter explaining my limitations. My neurology NP told me to apply, at the time I thought I would get better in the not too distant future, still working on this that 4 years later, sigh... I think at that time my diagnoses were orthostatic hypotension, tachycardia, migraine, insomnia, post viral fatigue syndrome, Lyme and likely others that I can’t recall.  Autoimmune diagnosis came later. You should only list what the actual diagnoses are.  I had just gotten out of hospital with severe malnutrition and was on TPN.  I was honest about the impact on daily living or more accurately daily wishing to die. I could not fill out the forms, my husband did that.  At the time I weighed about 90 pounds and couldn’t stand up for more than 3-4 minutes at a time. I believe I was the embodiment of why we have security nets.  I hope my story offers some hope that it can happen quickly.

You had some really good doctors. Mine will not even fill out any forms even after stating that they know I will be in pain for the rest of my life. They don't all agree with the disability process.  I also hate that they give more credibility to someone who has worked for a long period of time. Some people get sick when they are younger and have a very scant work history, it doesn't mean they are lying. It should all be based on medical factors not work history. But you did have a long work history and were a bit older, so that is all very favorable.  

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3 hours ago, Derek1987 said:

I'm still waiting for my long term disability to be approved through my now ex employer. They called me today and asked for an extension. They are going to have a meeting with a nurse and vocational expert I think he said to determine if i can work. They already have the evidence they need to show I'm screwed up. Now I gotta wait up to 30 more days for a decision. 

I love how they work. When I was on short term disability they told me someone with my condition should be healed by now and that since my specialist is a nurse practitioner, she is not credible enough. I was referred to her by a cardiologist. After threatening legal action, they approved me. But now a nurse can determine if I'm eligible for long term disability. These past few months have been h***. If they don't approve me, I'm screwed. 

Don't give up. Never give up. Fight and continue to fight. If you are passing out, you are not going to be able to hold a job. That is how you have to present your case.  You should try and contact Alsup. I hear they are good and file the paperwork for you. I hope that didn't violate any rules. I may use them if I file again. 

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46 minutes ago, blizzard2014 said:

I only get swelling if I stand or walk for more than 5 hours straight, sometimes it takes a little bit longer. My leg hurts so bad I cannot even tolerate a regular sock on the bad leg. I have to cut the tops off my socks for my right leg and they barely go up to the beginning of the ankle very loosely. Forget about the 30-40, no way, pure torture. The 20/30 ones I used to use for two years after the clots and they really helped but then the leg pain forced me to stop wearing them. I still have three areas in calf and also behind knee with chronic clots and that is where all of my pain comes from. Will be seeing a vascular doc this coming week and see what happens. Most just say there is nothing they can do. 

I had a ultrasound of my legs yesterday. The only comment she made was that the clots were extensive, yet I guess the veins adapted. I've always used 30-40 stocking from the beginning though. If fact, my leg feels better with them on, the knee highs. The thigh highs don't have the same compression. All that said, the tighter stockings have had negative effects too. Losing weight helped with that and I prefer open toe. The thigh highs aren't. I've been doing it for 25+ years, so it's second nature. 

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55 minutes ago, JimL said:

I had a ultrasound of my legs yesterday. The only comment she made was that the clots were extensive, yet I guess the veins adapted. I've always used 30-40 stocking from the beginning though. If fact, my leg feels better with them on, the knee highs. The thigh highs don't have the same compression. All that said, the tighter stockings have had negative effects too. Losing weight helped with that and I prefer open toe. The thigh highs aren't. I've been doing it for 25+ years, so it's second nature. 

Wow, you still have extensive clots. I really feel for you. I wonder if I may have something else going on causing my pain like the clot behind knee pressing on a nerve. I had an extensive DVT from foot to Groin, but only have three areas with non-occlusive chronic clots. Behind the knee, there is blood flow, but it is very hard for them to see it. So, maybe it is pretty closed off. Without pain meds I have a horrible ripping pain there after any exertion. Even without exertion, by the end of the day, even with legs elevated the pain can become intense enough to keep me awake all night. I have detoxed from pain meds many times and on day 7 to day 10, the pain gets bad from just walking around and I cannot sleep. I had an ultrasound in the bad leg back in 2014. My original clots hit in September of 2011. I think they might send me for another ultrasound. But the extent of my chronic clots is nothing like yours, but it causes immense pain. I have also had vicious dog attack on this leg that caused some damage along with another accident that left me limping for a few weeks a long time ago. Maybe the multiple hits to the same area has had an effect. I can't even walk with the thigh high socks. They hurt so bad I can not walk. The 20/30 mmhg knee high sometimes helps, but more than often hurts too bad. 

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22 minutes ago, blizzard2014 said:

Wow, you still have extensive clots. I really feel for you. I wonder if I may have something else going on causing my pain like the clot behind knee pressing on a nerve. I had an extensive DVT from foot to Groin, but only have three areas with non-occlusive chronic clots. Behind the knee, there is blood flow, but it is very hard for them to see it. So, maybe it is pretty closed off. Without pain meds I have a horrible ripping pain there after any exertion. Even without exertion, by the end of the day, even with legs elevated the pain can become intense enough to keep me awake all night. I have detoxed from pain meds many times and on day 7 to day 10, the pain gets bad from just walking around and I cannot sleep. I had an ultrasound in the bad leg back in 2014. My original clots hit in September of 2011. I think they might send me for another ultrasound. But the extent of my chronic clots is nothing like yours, but it causes immense pain. I have also had vicious dog attack on this leg that caused some damage along with another accident that left me limping for a few weeks a long time ago. Maybe the multiple hits to the same area has had an effect. I can't even walk with the thigh high socks. They hurt so bad I can not walk. The 20/30 mmhg knee high sometimes helps, but more than often hurts too bad. 

`I wonder if you need a custom stocking. Your leg could be non-standard `in dimension. Mine was and I couldn't use an off the shelf for awhile. Part of it is my height. They have tall sizes now. If I get any pain it's in my feet is the stocking is too tight in the foot. All I can say is that when the stocking is fresh and fits right, I can feel a difference in endurance and confidence. It feels better. The other thing is pain tolerance. Mine might be higher. I had laminectomy and fusion L4-5 with hardware last fall and I only had oxy 2x when I got home and went on Tylenol after that for 3 weeks. Funny thing is that the GI issues I've been having bother me more than anything else pain wise. I'm just miserable most of the time. 

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23 minutes ago, JimL said:

`I wonder if you need a custom stocking. Your leg could be non-standard `in dimension. Mine was and I couldn't use an off the shelf for awhile. Part of it is my height. They have tall sizes now. If I get any pain it's in my feet is the stocking is too tight in the foot. All I can say is that when the stocking is fresh and fits right, I can feel a difference in endurance and confidence. It feels better. The other thing is pain tolerance. Mine might be higher. I had laminectomy and fusion L4-5 with hardware last fall and I only had oxy 2x when I got home and went on Tylenol after that for 3 weeks. Funny thing is that the GI issues I've been having bother me more than anything else pain wise. I'm just miserable most of the time. 

Yes, I do have a bad tolerance to chronic pains. Acute pains I have had and rough it out. I had the Gallbladder pain/discomfort that was horrible and I was able to ride it out better because I know it was only temporary.  At best, it would last for 3-4 hours. I had to ride it out any how lol because I tried once to take a Norco during an attack and I would just vomit it right back up. I could not hold the pain med down. As soon as I could feel the gallstone move and stop blocking, the pain was gone. I work with painful headaches and my teeth hurt all the time because they are breaking due to jaw clenching. But the chronicness of the leg being in almost the same amount of pain that it was when I first got hurt and had clots back in 2011 is just crushing to me.  I also had to double up on Norco meds for 2 weeks after my gallbladder surgery. That was mostly because I had a tolerance to the meds and needed more for the higher level of pain. After I healed, I went back to my 3 pills a day. I was taking 20 mgs at a time every 8 hours after GB surgery and now take 1 Norco 10 every 8 hours for leg pain.  A lot of day snow I take one ever 8 hours twice and then a half a pill at night. When I work I take more though or else I cannot stand long. So, even the 4-5 hours I can stand up and move around are kind of fake, because I can only do it with meds. Without meds, it takes 30 minutes to an hour of walking or standing to have enough pain to have to sit back down and elevate my leg. I spend 90 percent of the waking day with my leg elevated and that really helps cut down on pain meds. 

I used to be much tougher before. I had vicious dog attack and did not take pain meds. I had a complex facial surgery when I was 15 for 12 hours and took no pain meds. Both my jaws were broken and put back together with metal pins, all my wisdom teeth were removed etc. But the chronic pain that I know will always be with me really gets me down. I'm hoping they can inflate my bad vein and insert a stent into it and allow more blood to pass and maybe it will fix me. They have three doctors in USA who can do this with chronic blood clots and one doc in UK does it as well. The ones in US pioneered the procedure and the one doc in UK switched from general vascular surgery and dedicates his entire medical practice to helping those of us who have Post Thrombotic Syndrome.  The UK doc became aware of thousands of patients who are told to wear compression socks and have their condition dismissed told to just deal with it, and he said that it is unacceptable. My doctor calls PTS a minor annoyance and to just ignore the pain. How can you ignore not being able to walk far, or run? I can't even climb the stairs with my right leg. I have to walk up sideways and come down sideways with my shoulder sliding against the wall for support. The leg is only working at 50 percent capacity compared to how it was 7 years ago. He said that some of us with this condition have a quality of life the same of that of a person with cancer who is on chemotherapy. He shows a video of how strong scar tissue can be in the veins that he was inflating a scarred vein with the same PSI of a car tire, and the vein was able to pop the balloon. 35 PSI and it popped the stent balloon. They had to design very special high quality stents to hold up against the immense force of the scar tissue. My vascular doc will not know of this procedure. He will only be the kind that fixes varicose veins or arteries. But imma give him a link to this other doc's Youtube channel and maybe he can watch the procedure and then consult with said doc and help me out. I will see if I can find the video so you can look at it, because even though you do not have pain, you do have on-going impact from chronic clots. Dr. Mark Garcia also does this procedure. There is a doc in Stanford CA too, he actually pioneered the procedure. 

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51 minutes ago, JimL said:

`I wonder if you need a custom stocking. Your leg could be non-standard `in dimension. Mine was and I couldn't use an off the shelf for awhile. Part of it is my height. They have tall sizes now. If I get any pain it's in my feet is the stocking is too tight in the foot. All I can say is that when the stocking is fresh and fits right, I can feel a difference in endurance and confidence. It feels better. The other thing is pain tolerance. Mine might be higher. I had laminectomy and fusion L4-5 with hardware last fall and I only had oxy 2x when I got home and went on Tylenol after that for 3 weeks. Funny thing is that the GI issues I've been having bother me more than anything else pain wise. I'm just miserable most of the time. 

What symptoms did you have that helped you find out you have blood clots?

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9 hours ago, Derek1987 said:

What symptoms did you have that helped you find out you have blood clots?

I had mono real bad and then I got a strep throat so bad they hospitalized me. A week after I got out of the hospital I was back on my feet again and one day I was changing to go out with my girlfriend who is now my wife and my calf was huge. I knew exactly what it was. I had crappy insurance that required me to go to their clinic, which was in another town 15 miles away and the Indian doctor said in his accent, you have a blood clot. You must go to the hospital right away. No shite Sherlock. I was in the hospital 5 days from the strep and a week for the blood clot. Some people never get that warning and it kills them because the clots travel to the lungs. That was in 1993. 

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49 minutes ago, blizzard2014 said:

Yes, I do have a bad tolerance to chronic pains. Acute pains I have had and rough it out. I had the Gallbladder pain/discomfort that was horrible and I was able to ride it out better because I know it was only temporary.  At best, it would last for 3-4 hours. I had to ride it out any how lol because I tried once to take a Norco during an attack and I would just vomit it right back up. I could not hold the pain med down. As soon as I could feel the gallstone move and stop blocking, the pain was gone. I work with painful headaches and my teeth hurt all the time because they are breaking due to jaw clenching. But the chronicness of the leg being in almost the same amount of pain that it was when I first got hurt and had clots back in 2011 is just crushing to me.  I also had to double up on Norco meds for 2 weeks after my gallbladder surgery. That was mostly because I had a tolerance to the meds and needed more for the higher level of pain. After I healed, I went back to my 3 pills a day. I was taking 20 mgs at a time every 8 hours after GB surgery and now take 1 Norco 10 every 8 hours for leg pain.  A lot of day snow I take one ever 8 hours twice and then a half a pill at night. When I work I take more though or else I cannot stand long. So, even the 4-5 hours I can stand up and move around are kind of fake, because I can only do it with meds. Without meds, it takes 30 minutes to an hour of walking or standing to have enough pain to have to sit back down and elevate my leg. I spend 90 percent of the waking day with my leg elevated and that really helps cut down on pain meds. 

I used to be much tougher before. I had vicious dog attack and did not take pain meds. I had a complex facial surgery when I was 15 for 12 hours and took no pain meds. Both my jaws were broken and put back together with metal pins, all my wisdom teeth were removed etc. But the chronic pain that I know will always be with me really gets me down. I'm hoping they can inflate my bad vein and insert a stent into it and allow more blood to pass and maybe it will fix me. They have three doctors in USA who can do this with chronic blood clots and one doc in UK does it as well. The ones in US pioneered the procedure and the one doc in UK switched from general vascular surgery and dedicates his entire medical practice to helping those of us who have Post Thrombotic Syndrome.  The UK doc became aware of thousands of patients who are told to wear compression socks and have their condition dismissed told to just deal with it, and he said that it is unacceptable. My doctor calls PTS a minor annoyance and to just ignore the pain. How can you ignore not being able to walk far, or run? I can't even climb the stairs with my right leg. I have to walk up sideways and come down sideways with my shoulder sliding against the wall for support. The leg is only working at 50 percent capacity compared to how it was 7 years ago. He said that some of us with this condition have a quality of life the same of that of a person with cancer who is on chemotherapy. He shows a video of how strong scar tissue can be in the veins that he was inflating a scarred vein with the same PSI of a car tire, and the vein was able to pop the balloon. 35 PSI and it popped the stent balloon. They had to design very special high quality stents to hold up against the immense force of the scar tissue. My vascular doc will not know of this procedure. He will only be the kind that fixes varicose veins or arteries. But imma give him a link to this other doc's Youtube channel and maybe he can watch the procedure and then consult with said doc and help me out. I will see if I can find the video so you can look at it, because even though you do not have pain, you do have on-going impact from chronic clots. Dr. Mark Garcia also does this procedure. There is a doc in Stanford CA too, he actually pioneered the procedure. 

You have a lot going on. Do you smoke or have you? The vascular doc made a big deal out of that. I have what they call post phlebitic leg syndrome. Swelling from the incompetency of the internal veins The three clots I got lodged in the valves of the deep saphenous vein. This causes a slow down in the return to the heart. So if I have POTS, this can't help. 

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6 minutes ago, JimL said:

I had mono real bad and then I got a strep throat so bad they hospitalized me. A week after I got out of the hospital I was back on my feet again and one day I was changing to go out with my girlfriend who is now my wife and my calf was huge. I knew exactly what it was. I had crappy insurance that required me to go to their clinic, which was in another town 15 miles away and the Indian doctor said in his accent, you have a blood clot. You must go to the hospital right away No shite Sherlock. I was in the hospital 5 days from the strep and a week for the blood clot. Some people never get that warning and it kills them because the clots travel to the lungs. That was in 1993. 

Well hopefully this bed ridden life doesn't cause blood clots. I take aspirin one to 3 times a week for headaches. I read aspirin keeps your blood less sticky for 7 days after consumption. I know taking that much aspirin isn't good for you either. What a mess. I was curious because my right calf muscle mysteriously gets really sore every few weeks. Always my right calf muscle. No swelling though.

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12 minutes ago, JimL said:

You have a lot going on. Do you smoke or have you? The vascular doc made a big deal out of that. I have what they call post phlebitic leg syndrome. Swelling from the incompetency of the internal veins The three clots I got lodged in the valves of the deep saphenous vein. This causes a slow down in the return to the heart. So if I have POTS, this can't help. 

That's what they called my clots. It says in the report "chronic post phlebitic changes noted!" So, maybe it is similar to what you have. I do know that the valves can also be damaged even if the clots have cleared out. I never noticed POTS symptoms until after clots, so maybe blood pooling in the legs is the cause. Very interesting. My changes are in the Popliteal vein and then the two vein to the right and left under the knee in the calf. More lower than higher.  I used to smoke until after the clots in the lungs. My lungs for whatever reason are so jacked that one cigarette will leave me sick for an entire day. Maybe it was the high BP and the cig. But the last time I smoked a few years back, I was sick all day. So I have an aversion to cigs. I will not attempt to smoke lol. But I did smoke from age 15 to age 36 at least a pack a day.

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1 minute ago, Derek1987 said:

Well hopefully this bed ridden life doesn't cause blood clots. I take aspirin one to 3 times a week for headaches. I read aspirin keeps your blood less sticky for 7 days after consumption. I know taking that much aspirin isn't good for you either. What a mess. I was curious because my right calf muscle mysteriously gets really sore every few weeks. Always my right calf muscle. No swelling though.

You should be fine as long as you do not have any blood clotting disorders. Even then it is a crap shoot. Usually there has to be a pretty strong trigger to get clots. I used to drive for years, at times driving behind the wheel for up to 24 hours straight with one 30 minute nap still sitting behind the wheel. I would also have three or four 20 minute fuel stops as well.  I never had any blood clots until I fell down and hurt my leg. Ironically I was at the time only taking short trips and dispatching from home. That is when I had my clots, not from years of sitting all day long cramped in the drivers seat. So, usually there has to be a trigger event to cause the clotting cascade to activate. 

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7 minutes ago, Derek1987 said:

Well hopefully this bed ridden life doesn't cause blood clots. I take aspirin one to 3 times a week for headaches. I read aspirin keeps your blood less sticky for 7 days after consumption. I know taking that much aspirin isn't good for you either. What a mess. I was curious because my right calf muscle mysteriously gets really sore every few weeks. Always my right calf muscle. No swelling though.

I have two blood clotting disorders, one genetic factor 2 and one acquired/autoimmune , the APS and only clotted after a trigger event. So you should be fine with all of the bed rest. 

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2 hours ago, blizzard2014 said:

I have two blood clotting disorders, one genetic factor 2 and one acquired/autoimmune , the APS and only clotted after a trigger event. So you should be fine with all of the bed rest. 

Thanks guys for easing my mind in that regard.

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8 hours ago, Derek1987 said:

Well hopefully this bed ridden life doesn't cause blood clots. I take aspirin one to 3 times a week for headaches. I read aspirin keeps your blood less sticky for 7 days after consumption. I know taking that much aspirin isn't good for you either. What a mess. I was curious because my right calf muscle mysteriously gets really sore every few weeks. Always my right calf muscle. No swelling though.

Just try to get up and walk around a bit every hour or two that you're awake. Aspirin is hard on the stomach, but for blood thinning, 1 a day is fine. 

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8 hours ago, blizzard2014 said:

That's what they called my clots. It says in the report "chronic post phlebitic changes noted!" So, maybe it is similar to what you have. I do know that the valves can also be damaged even if the clots have cleared out. I never noticed POTS symptoms until after clots, so maybe blood pooling in the legs is the cause. Very interesting. My changes are in the Popliteal vein and then the two vein to the right and left under the knee in the calf. More lower than higher.  I used to smoke until after the clots in the lungs. My lungs for whatever reason are so jacked that one cigarette will leave me sick for an entire day. Maybe it was the high BP and the cig. But the last time I smoked a few years back, I was sick all day. So I have an aversion to cigs. I will not attempt to smoke lol. But I did smoke from age 15 to age 36 at least a pack a day.

Could be the difference. I never smoked, at least habitually. Maybe a cigar once a year or less on average and not in 16 years now. 

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7 hours ago, JimL said:

Could be the difference. I never smoked, at least habitually. Maybe a cigar once a year or less on average and not in 16 years now. 

The smoking, high blood pressure dating back years, and being an uncontrolled diabetic at the time of the blood clots could all have been contributing factors. I always had burning in both legs when walking too far and when running. Even today, if I walk too far, the legs start burning. So maybe I already have some peripheral vascular issues going on. But the burning is better with blood thinners. One time not too long ago, when my INR was low 2.1, I walked through a parking lot and legs were burning so bad I could no longer walk. Even the good leg was burning and I had to sit on a concrete lamp post thing for 5 minutes. I would not have been able to run from a dog if one came to bite me at that point. So, the higher INR has really helped me with this. I used to not even be able to make it to the back of a Wal-Mart store and back out without having to stop and rest the legs.  So, there probably is more going on here. I maybe didn't heal as good, or have poor collateral veins. Sometimes you can grow good collateral veins and that will pick up the slack for the blocked veins. 

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13 hours ago, Derek1987 said:

Thanks guys for easing my mind in that regard.

I forgot to tell you about Nattokanaise. You can look that up online. It also thins the blood, but not as much as Warfarin. It might work better than Aspirin and it will not cause stomach upset. I would read up on this supplement (I spelled it wrong too) and see if that is something you would be interested in to help thin your blood a little bit.  There are other supplements too to help thin the blood, but you will have to do some online research to find them. A lot of people with blood clotting disorders who have not had a clot event (they usually will not prescribe blood thinners until you've had a clot, even with clotting disorders present) have been using these supplements to help thin their blood. 

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4 hours ago, blizzard2014 said:

The smoking, high blood pressure dating back years, and being an uncontrolled diabetic at the time of the blood clots could all have been contributing factors. I always had burning in both legs when walking too far and when running. Even today, if I walk too far, the legs start burning. So maybe I already have some peripheral vascular issues going on. But the burning is better with blood thinners. One time not too long ago, when my INR was low 2.1, I walked through a parking lot and legs were burning so bad I could no longer walk. Even the good leg was burning and I had to sit on a concrete lamp post thing for 5 minutes. I would not have been able to run from a dog if one came to bite me at that point. So, the higher INR has really helped me with this. I used to not even be able to make it to the back of a Wal-Mart store and back out without having to stop and rest the legs.  So, there probably is more going on here. I maybe didn't heal as good, or have poor collateral veins. Sometimes you can grow good collateral veins and that will pick up the slack for the blocked veins. 

Makes more sense now. 

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