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Leukemia

I am a CML patient and i have severe heel pain.  Can you please tell me why? and how i can prevent it?
15 Comments Post a Comment
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1081992_tn?1389907237
Hi, are you on gleevec?
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Hi Ken. I also have severe heal pain on my left heal. It hurts so bad, it wakes me up in the morning. I thought maybe it was dry skin? Been going on for quite some time. I think my last white blood count was 12.5. I have been having a hard time getting my results back fron my primary care doctor. Also have had severe groin pain. I call CLEAVELAND CLINIC, TO GET TESTED COMPLETRLY, cas i have Corinary heart disease, but now they want all my scans, but hosp. for some reason wont give them to me? Thank u. Steve
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Is Glevac known to cause Peripheral Neuropathy?  I had that and felt like I was walking on broken glass all the time as a side effect from a chemo I took called Velcade.  I took anothe medication called Lyrica that helped take the pain away
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Hi, Steve, if you are talking about peripheral neuropathy then I'll mention that MD Anderson cancer center in TX did some work using vit B6 and some other OTC things. IIRC there was some benefit, but not dramatically so.

Good luck.
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Hi Ken. Thank u for ur answer! I was talking to a nurse, @ Clevelandclinic, & she told me i need to see a neuro -surgeon, cas of a lot of my symptoms. My PA, wont give me a referal? Tomorrow i go see a diff. neurologist, cas my good one passed away, some time ago. Iam trying to rush to get to an appointment, but i would like to get back with you. Again, i want to thank you! Steve
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Steve have yoiu checked out any medications you are taking to see if that's a side effect? E.g., fluoroquinolone antibiotics (like Cipro) have actually resulted in ruptured Achilles tendons - there's even a boxed warning on that now.
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Hi Ken. Again i wanted to thank you. Yesterday i was very busy, but glad i ws able to finish up everything had to do! You r a very good PA! I looked up what neuropathy was, & now i can see why Cleveland clinic said i needed to see a neuro-surgeon! Luckily, i have an appointment, with a neurolist, that i saw a few years ago, & she did 1 of those electronic prick test, & i flunked it. I never thought much about it, cas i had gotton rid of most of it with injections of cortozone from another specialist. So, the nerolist did not tell me about neuropathy, but i am very greatful, that you did!  It started on my whole right side, around 3 years ago, & i thought it was heart related(blood clots) Anyway, she tested the 1 bump, i had left on my right side of my wrist, & i flunked that part. Later, it spread down to my ankle, with a big bump, that just ended up really inflamed, & had a foot doctor, do a cat scan. Well i went back to hin a month ago, & asked him what it showed, & it was a lot of fluid. Only reason i went back to him, ws i remembered he told me not to let it get bigger. Well it got bigger! A lot bigger, & it imploded?, cas i thought i ws getting my cluster headaches back, but a little stronger(& that means really bad, cas i had a history of cronic (chronic) clusters, from toxic fumes, & carbon monoxide poisoning) These were so bad, i figured i was goin to die, so i brought my brother up 3000 miles to witness them. Twice i woke up, with bloodish fluid coming out of my eyes, same most dreadful pain ever, & i handle extreme pain very well. As mentioned before i went to another hospital, & they gave me another drug, that made me really ill. I guess they thought it was NMS? All this time, for last 3 years i had all the signs of neuropathy, but it got really bad. Im surprised i dont have diabetis. Runs in the family, but i gave up sweets, over 30 years ago. I know i am rambling on, & jumping topics? BUT, I'm pretty sure i had an aneurism (aneurysm), & it mite had burst, cas they wont give me any results back. OK, 1 MONTH AGO, after the anueism thing, i started to get lock jaw symptoms, BUT, also got an infection in my ear, that spread to other side. This was not a cluster, but it felt like liquid, outside the brain, but behind the eardrum. Got so bad, & painful, that flies were getting attracted to me! Told my primary, & his nurse said i ws dreaming! (so i took pictures) Pain med. did not work, but high doses of oxygen did! After 7 days, got a little better, & bought a fly trap. By now, i figured i had bacterial nkuemonia, & asked doctor for an anti-biotic, but he refused, & gave me fetinal! I asked him for a referal, to a neuro surgeon, after speaking to BRAIN institute, but he refused still? Well, think u might had saved my life, if it isnt to late, yet! My neuropathy is a little worse, & closer to the Guilian barre thing. I cant chew, something is wrong with my groin? I have , now 2 droopy eyes, & cateracts, & glacoma. Tired? geuss so! Im lucky to write this down to you. Heavy leg syndrom (syndrome)., & some more. Showers shock my system? Now if i dont do the pain meds, i walk like an old man, with hunchback, & cold all the time. I think u get the picture. OH, I NEVER , use to get sick, & i dont go to the ER, unless i am close to death. (last time, i had epiglitus, so bad, i could not swallow water, it would come out my nose) Well, i got out of ICU, IN 48 HOURS!, & they try to say, i caught mersa there.)
OK, This is my meds, B-12, or multi vit., fentanyl, 100(hav to cut it in half, & save lil peices so i can chew!)have to re-mention that to doctor cas it gotton worse. Also, Tamusulin(got UTI, after they gave me another drug, i ws alergic (allergic) to) aspirin, omeprazole, atorvastin(Cleavland says i still have bad LDL!,  Levothyroxine,, verapamil, tums. Use to be on Plavix, for too long. I ws alergic (allergic) to it? But what got me really ill was the Abilify, they try to get me to take, & they saw what it was doing to me?!! So, i only did it 6 days. Besides that, i dont have psycotic episodes, or dilutional thinking, nor do i suffer depression, BUT, I must say, & my last neurolist, now diseaced, in his report, he ws worried about me getting a cefiaul cerebal anuerism, from all my toxic fumes. He called the state labor board, n ind., & OSHA, got involved, & the plant shut down, but not because of that, but cant think of what is it called?( men abusing women?) My memory is getting really bad! I DO WANT TO THANK YOU, & I AM goin to go over this neuropathy thing with my neurolists, & she is the same lady, that said i flunked the wrist electric test. I think this should had been looked into more 3 years ago, cas now i cant chew, walk well, & all the above! Im surprised, i still am laughing over the whole ordeal, but u put my mind in a better state! Again, Ken, thank u for the info! Steven
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1081992_tn?1389907237
Hi, Steve. Thank you, but that was actually summerluvr who originally suggested sensory neuropathy. OTOH, I'd wonder if that doesn't almost always occur bilaterally, in your case it would have been in both feet. Since she has personal experience (and maybe has researched the topic, too), then maybe she'll see this and reply on that point. If not, you might send her a private message and ask her to reply publicly on this thread.

As for all your troubles: wow, you certainly have had a lot to bear. I assume you had some exposure to chemical toxins that underlies everything? I guess all your docs have been over all of that - but if the poisoning was through metals, you might look into chelation to get rid of some of it. Good luck to you.

You're not injecting the B12, right?
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Hi Ken! You r a wonderful person! I once had a primary care doctor, who ws facinated by my medical history, & he thought i should donate my body to science, cas they would have a field trip on me! Unfortunately, i lost him, cas it ws on a Sat. afternoon, & he ws closed, so i went to my pharmacist, & showed them my skin. It ws blacl n blue, itchy, & the skin ws peeling off-like. They told me to go to the ER, & I DID? Well they were making fun of him, & he was a good doctor(little rough on his nurses, always yelling at them)BUT, he ws only doctor, that offered me to go for a second opinion on a sleep study, in Boston. I thought that ws pretty big of him! Anyway, he called me up, after that incident, & said we were done, because of a trust issue? I wasnt the 1 that made fun of him! This doctor was concerned about me! Anyway, they suggested for me to stop my lovastatin, but i dont think thats what cured me, it was the predizone! Ive had a lot of diseases, where 10-12 doctors/interns would observe me. That time i went to the ER, I really think it was MERCA, but it wasnt really discovered yet, or then, BUT, went to a DIFF. ER, few years back, with epiglititis(29 days, till i could not even swallow water!) Well in ICU, AFTER LIKE 16 HOURS, they were moving paitients all around, & they told me i caught MERSA? I looked it up, & it ws what looked like i had for 10 years? I had another experience, long time ago, & about 12 interns were lookin at my genital areas.(little embarassing!) but no one ever had seen those little bumpy rashes, & herpes, hadnt been invented, but i dont have herpes? Broke my back, @ 16 years old, told me never walk again, 3 days i was out, but wore a brace for 8 months. There r so many instances, BUT , I want to deal with today, & then finish my diary, & my estate will, before i die. IT is funny u mention B12. I just started taking it wen all this new stuff started? It is not injected though. I do have a very low tolerance to most drugs, except now, on opiates. Never was on them, & they put me on a patch but it ws to strong for my heart disease, but now it is keeping me alive. Woke up this morning, & my left eye, had drifted to the left. Quite noticeable, & pain is finally sorta normal after 6 hours. (I do have addh, so excuse me if i start bouncing around!)
OK, I did just start taking furosemide for the swelling of my ankles, again! First time, i tried it, & my cluster headaches started up again, but i thought it was the time of year? Then, i started lookin at my past history, 7 realized i started having strokes back in 2001, but no one even thought of my heart, cas i looked pretty healthy, with a BMI, of only 5. It is now 26.5! That med, only been on it for 3 days, n my simptoms r coming back. but it is in oposite eye. It is moving left into towards the brain. The nurse for my cardiolist said that shouldnt effect it. Then i told her about the fluid i felt outside my brain, felt like blood, or some type of liquid. Got so bad, the flies were hovering over me! 7 days of that, plus pain med. was not worknig, but oxygen was? I told my PC, nurse, & she told me i was dreaming, so i took pictures! Noticed she wrote me off as dilutional! So, i just got done talkin to cardiolist nurse, cas she wrote me back to tell me she would be in the office with me next week with my cardiolist. She told me to see my doctor! The swelling thing been goin on for almost 3 yuears! Anyway, the cardiolist nurse, sorta agreed with me on the hydrocephious. You get 1 bad doctor, tries to cover up his mistake, & all the other doctors r goin to believe him, but it is my life. Should go to the main hospital, but i just wanted to let u know , that u r a very nice doctor, plus i have to finish my living trust, & re-sign my will, but i was saving 40 percent of my estate, but to confused to figure out who to donate it to. OH, forgot i started getting cluster headackes over 30 years ago, wen i was working in a mans garage, & he didnt tell me, his car ws running before. I gotr back to lower 48, & started getting the clusters. Then i worked in my own garage with a faulty heater, so i worked another 15 years of carbon monoqide poisoning, & then i worked at a train plant & painted interiors of the trains, but my now diceased neurolist got the state involved cas he ws worried about a burst anueism in future, so they got OSHA involed, & the palnt closed. Alot more to my medical history, but i have to go, & wanted to personally thank u 1 more time! Thank you. Steve.
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1081992_tn?1389907237
Thanks again, Steve, for the very kind words. But I'm not a doctor. The PA in my name here is for Pennsylvania.

I'll tell you what, instead of leaving your body to science and thinking about cashing in, you should instead think about maybe getting featured as a "Case Study" in some medical journal, meanwhile staying alive so can can read it.   :)

One thing that often occurs to me is that patients can known deep down what's wrong with themselves and why it started. I'm thinking that the bad experiences that you have just written about with carbon monoxide might be the biggest clue. Have you ever had a home oxygen machine? I mean the electric type that purifies oxygen out of the normal air and then the oxygen goes through a tube to you for breathing nose.

What numbers do you get on a PulseOx reading? That's the one that uses a clip like a clothes pin onto your fingertip and it should ideally be up around 98% or so.

Did you know that mild carbon monoxide poisoning can cause nerve damage? Did your neurologist ever discuss that with you?

Carbon monoxide poisoning over the long term can also cause headaches over the long term. Also, severe carbon monoxide poisoning over just a short term, like you had in that garage, can also cause long term problems.

Furosemide lowers your blood pressure and that can bring on headaches. Do you ever also feel dizzy? Does caffeine ever help you with headaches?

Did you cut back on salt to try and help with the swelling ankles? How about sleeping with a couple of pieces of wood 4x4s under the bedposts to raise the foot of the bed?

I believe you that the feeling in your head of the fluid is important.

Then there is the whole other thing about how prednisone helped you. That's a powerful anti-inflammatory and is given when a person has a bad allergic reaction, such as to a drug (say, 60 to 80 mg of prednisone gets prescribed). Your skin reaction is called "weals", the bumps and colors and itching.

But prednisone causes you to retain water, especially when you are also having normal amounts of table salt. Are you still on the prednisone?

I'm going to look into the carbon monoxide poisoning some more, and I'll post back here with what I find out. You keep hanging in there, Steve, okay?


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Thanks kEN. I havent been poisoned with carbon monoxide oisoning for , since 2002, but i also worked with some paints. On back of the can, instead of saying, will cas cancer, it said will cause death, but that was back in 2001. I had good neurolist but he died. He called the state cas he worry that i get sometipe of anurism, then , but then OSHA, CAME BY, & TOOK TESTS, BUT COMPANY SHUT DOWN. wE NEVER FOUND RESULTS. eXCUSE MY CAP LETTERING. I suppose to see my heart doctor in 5 days, n his nurse will be there. I went to see my other neurolist 4 months ago, with my brother, but we didnt make it, cas the attacks were coming on, so i told him, hurry up, bring me to ER! There, that hospital made fun of me, & kept running me through cat scan machine. I beg them, what r u doin to me? All i want is oxygen! This was 1 of the best hosp. in NEW ENGLand. Finally they gave me 2 liters? Protocal is 10 liters, then i pass out, or went in coma, cas release paperwork said do not resesitate! I never gave them those orders! Well, i woke up! & they put me in the mental ward, but they did not know my brother ws with me. Then they got me to take Abilify, with my predizone, & it was causing distonia. Well, i still survived! I have a high belief in faith, but they gave me to much cat scans? Now i went to other , use t be good neurolist, but she refuse to give me a good evaluation. That ws 3 days ago. Now my vision, eye, the wrong eye is drifting toward south. It is not sunset eyes. I had 3 diff. eye evaluations. The first 1 , i show them the release paperwork, & then i had 5 other inturns also look at me eye. They told me it ws my eye glasses! Im not stupid, so got second opinion, & she told me i had gcateracts, & good candidate for glacoma. To long of a story, but it is the truth. I get to see a nice spiechietrist in 1/2 hour, & i hope she still is honest, cas her co. made her stop seeing me. It is quite obvious my left eye is goin beside my skull the last 3 days. I lucky i hav possitive attitude. Come this week end, if i finish my trust, i will admit myself to other good hosp, since my PC, wont give me a referral to the neuro-surgeon. Cant wear even diabetic socks, my swelling will go up to my waist! I know i should not wait, but i want my baby to remember me. This all started with a divorce believe it or not, but it has to do with politics. I know this sounds far-fetched, but if i was healthier, i would be on an air plane out of this state, but cant sit down, with out swelling . I got to go, hav an appointment. OBTW, i am not close to be crazy. I am tryin to hold on, cas my mission is to finish my estate planning, & so on. Im sure i had hydrocephius, cas the flies were hovering over me in bed for 7 days, plus i develop an UTI. wISH I COULD FINISH STORY! Im very strong minded, & i can last a little longer, till i get honest care. I should not post this, cas everyone will say, what a idiot, i am! OH, i  am on strongest dose of fentinal, just so i can chew my food. Isnt life fun! Just kidding on that remark. I do appreciate u takin time to read this. I definately am not lookin for attention! I lived a better life than most people in a lifetime! So, i am quite happy for what ive been through. U never know, but maybe, they can fix me? I have CAD, also! Thanks, Ken. Steve
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Steve, damage from carbon monoxide poisoning can be permanent and lifelong. In fact, I just saw a tv commercial of lawyers looking for victims.

Also if you are still on predisone,then that's what is causing your ankle swelling and you can make that go down by avoiding salt without taking the diuretic pills.

And don't you have an oxygen machine at home?
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Hi Ken! I wanted to get back to u, yesterday, but i am starting to get to tired, to even turn on computer.( Its pretty old, n slow, with short memory space)
I use to have good neurolist, & yes, i told him about the carbon monoxide poisoning, in AK, but at time i did not realize, i had a bad heater, in my auto-shop, for 7 years. I then moved to another location, n built new auto body shop, where i installed a better heater.(Note, my good neurolist had stopped practicing, had told him about predizone, & what it did, make u feel like ur 18, n no pains? He told me, HMM? I have to try that. thought it amusing! but, last i knew, over 10 years ago, was rumor he went crazy? Dont know if it ws from predizone(make u manic, or if he got in trouble fr trying to help me with the paint fumes, cas he called the state, n the state got OSHA, involved, n the plant shut down. The plant employed up to 2000 employees, during contracts, so i dont know if it ws state, that made him crazy, or if he actually did the predizone?) ALSO, want to let u know, they gave my father 3 days to live, so i told doctors, to first give him a shot of cortozone in his knee, later, just put him on predizone, cas he was afraid of pain med. Well, the doctor who told him, he had 3 days to live(thought i ws a doctor?) Well, they put him, on steroids, & he lived another 5 years. He lived to 91 years old? Would had gone longer, but it was not a qaulity of life. I was diagnosed with same heart disease,  back after my first major heart attack in 2007.(pain ws so severe, in my chest, was as bad as my cronic (chronic) cluster headaches, but those were in the brain area. The heart attack, obviously in my heart!, but by time EMS, & my first stroke back in 2001, ended up with CAD, BUT still ws set home, cas they did not examine me, cas i was an active weight lifter, & looked very healthy. Like 2-3 months later, they actually took a stress test with dye, & that showed up, & after the holidays, they put stent in me, cas had to wait for plavix to settle in?) I never did fully recover. I tried goin back to the gym, & weight lifting cased more pain in my heart area, so i had to give it up. Note, tHERE IS SO MUCH , to this story, & i dont want to repeat myself from past letters, SO, Will go back to the carbon monoxide poisoning. Stpped working , so no more carbon monoxide poisoning, BUT, then i got my major heart attack. After the heart attack, that is when nerve damage started. I started, getting bad numbness, waist down, if i sat to long. Eventually it spread to my complete right side, but with severe pain.(also had really bad back cond. from abusing weight lifting) So, got a shot of cortozone in my shoulder, & 70% got better.(Told, DOCTOR, thought it was blood clot, cas a big bump still in my wrist?) Eventually it went away, but i had electric shock pin test on it, n i flunk, but still bothers me, BUT IT TRAVELED DOWN TO MY ANKLE!, same side. was size of golf ball. Went to ft. doct., & he took cat scan. By this time, it was so big, it surrounded my whole ankle. He told me it was excess fluid, most likely edima.(as i thought fr past 2 years) But, i told my new cardiolist, & he asked what all the other doctors said, & then he told me the eye doctor said i ws normal, & he said see u in 1.5 years!!???????!! WELL, now it has spread to other foot, also, & i can only sit, or stand for a few hours, n have to nap, or it spreades up to my groin area! Finally, his nurse email me back, cas this hospital has new technology of makin, n answerin questions on the web, so she told me she would be in his office, wen i see him this Monday! Later have a MRI, for my brain, cas of last episode of clusters, ws so bad, think it was anuerism related, cas BRAIN, institute, & Cleveland clinic, told me i need to see a neuro- sergeon, but still cant get a referal from my PC! (my legs gone numb, already from sitting, n writing this!) Nothin for me to sleep, all day, but i refuse to! Have to get up, so i can get my blood to circulate, & also if lucky take a crap!, cas it helps so i dont get another UTI! Also my eyes, vision is going. I do have to admit, ive had a better life than most people, but i also worked 60-75 plus hours over last 30 years, never took a break, or a day off, & that prob. not good for you. I also have perminent sleep disorder, 10 years, ago, n specialist said, i never will be norm., cas i use to work 3rd shift, & parts of 2nd, & 1st SHIFT. Got to stand up, n move, cas pain in my ankle, n numbness, but i want to finish my message to u! Iam goin to send this now, & come back later, cas i forgot what we started with(carbon monoxide poisoning, BUT, want to remind u, i am asystomatic, also suffer from addh. Also if i dont come back, means i had to lay down, cas swelling, of my ankles, n actually can feel right side of my brain, numbing out, but use to that over the last 20 years. I really dont think, they can help?, BUT, I wouldnt mind being wrong! Steve
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Hi Ken. NO, I not on predizone. Last time, tho, i was on it, it got rid of my swelling?! Also lost my apetite! Not typical, i know. I also still smoke cig., but not to many. Yesterday, i had to lay down 3 times, cas of swellin in both ankles. It does not matter if i sit, or stand. Also, i resorted back to my oxygin, fairly high doses of around 5-8 liters. This is progressing, to point, i am having hard time taking care of my issues. I have a sorta new friend, that will be takin me to cardiolist tomorrow. Also his nurse will be there, cas he has taken this not seriously. I need to be admitted to hospital. I have taken photos, journals, etc. I wish i could had finished my living trust, & will. I told my attorney who drew up the will, he mite have to come to Burlington big, teaching hospital. I have to try to take a shower today, but water is a shock to my system. I want u to know u have been a key factor in my life, & u have gone beyond ur duties in my concerns. I also am hoping they admit me to the hospital, cas i cannot go on like this anymore. I know i have a vascular disease, & Cleaveland hospital confirmed it, plus BRAIN institute. I have CAD, ALSO. I think they mite be similer, or connected in some way. I am worried, but not as much as my health, but what to do with my estate. Crazy, yes. I should be more concerned about my medical problems. I dont even know if i mentioned above, that yesterday, was the worst so far, as to sitting, & being able to stand for more than 2 hours, without extreme swelling of the ankles. I have resorted back to high doses of oxygen. Have a person breinging me to cardiolist tomorrow. I also want to get rid of 4 coin sets, cas my brother doesnt know the value of them.Sold 4 others last week, still have the cash, a good sum of money. As u can see, i am not thinking norm.! This swelling of ankles has been goin on over 2 years, but really progressing. I hope, either they can fix me, or let me die in grace. I am so stupid to worry where my estate goes to! I wish i could give u some of it! I have beat death many times, BUT, I guess i need 1 more miracle. I am so ashamed of my stupidity. Unfortunately, ive dealt with some bad doctors, & in this time in the world, doctors r more concerned about their reputation, & being sued, & that is the last thing on my mind! I admit, i have not gotton the best health care in the past. The only people who seem to believe me is medicare, social security, goverment, due to bad divorce, where i ws coarced into thinking i was goin to see my baby! Yes, now this is getting very confused, but i live in a state, with only 4 other states that do not have equal rights on parentship, I have fought the system for over 2 years. So corrupt, that if u look up DCF, corruption, in VT. U WILL SEE, a site about how corrupt VT. is, & how DCF, kidnaps inocent children. Think there r over 200 cases on this site. My ex wife lawyer, now is the governors lawyer!, BUT that prob. coincidental? It did not help my health, concidering i was denied medical care, for 4 months, when i moved, after, my old primary care doctor moved on, for reasons, i cannot say, or have time to get into. Am i crazy? Far from it! Am i medically ill, with CAD, & a vascular disease, YES! Today, hope to take a shower. the water is a shock to my system, for some reason. Lucky, 2 hours have passed n swelling so far is minimal. I am so ashamed of the medical treatment ive gotton since past doctor moved on, & my , OH!, just am worried about who gets my inheritance, & this whole abusive medically thing i am doing. I get better care if i was a criminal! Sorry, & really ashamed, but feel better, a little getting this off my chest. I even done a journal, & taken picturs of my eyes, & my ankles! 1 neurolist told me , or my brother to get out of this state, & start fresh, & not mention the past! Well, Ken, want to thank you, & hope, i can post u an update, after i get out of hospital. If i dint have the extreme swelling goin on, i would be at Cleveland hospital in OHIO! Thank u. Steven
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Think i figured it out! Lookin at my notes from Cleveland clinic, & saw, cerebal vascular ctr.(cas they had told me that ws dept i need to go to) Well, then called an old friend, who had vasculitis, so i looked them both up. Well yesterday, i put myself on high doses of oxygen, & i hardly had any thrombosis! so lookin up cerebral vascurlar disease, it mentioned a lot about high doses of oxygen, & so on. Ive been suffering it over 2 years, except time i went to other hosp, & i was also on oxygen for the 5 days there, & i had no swelling in the ankles. So, just guessing, but i hope it helps the doctors tomorrow, when i go.(i printed it all up, plus i have pict. i took, but , i then looked up vasculitis, & there r like 20 diff. types.) All very nasty, some worse than others. I also remembered close to 25 years ago, & pharmacy sent me to e-room, cas my skin was all black n blue, & it ws falling off, & predizone cured it. Now, i hope, they can figure it out. Thanks. Steve
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