Hi Sindy, still sliding a bit, first real full day of fatigue since the procedure. My neck is sort of bothering me too, not sure why.
Good to read all the good reports, but take it easy...
Steve you asked about bruising. i had a few, but a humdinger of one from my last heprin shot....black/purple. It is taking quite a while, but it's finally changing colors and going away. Bill's Sue told us to be sure to drink a lot of water while taking blood thinners, and I have to admit I have to keep reminding myself about that one. I think in the back of my mind I'm afraid of having to go back to living around bathrooms all the time, but it is important to drink a lot of water.
Brenda
Jacek Kosteki
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BrendaReqier
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Re: Good evening from Tychy
We were really shocked to hear from you about Dr Kuczmik's hit-and-run accident, and hope he makes a full recovery.Katarzyna wrote:Hi, it's me - Kate.
Dr Kuczmik is in the hospital, for happy he will back to home for a few days. Don't worry for schedule on August, September and October - there is no any changes. Today I was spoke with Doctors, and they confimed all dates of liberation procedures.
AND, that he obeys the advice you, he, and Dr Kostecki give all their patients: rest as much as he needs to, and don't rush things. His work is important to so many people, but he must first take care of himself.
Both Drs K proved their dedication and stamina many times over during our 15 patient week. You have our permission to sit on Dr Kuczmik to keep him from going back to work too soon!
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hopeful2
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I hope Dr. Kuczmik isn't in pain and rests a lot so the broken bones can heal. I agree with Dr Bart:)
Steve: About the bruises, I have many---one in each spot of the Clexane injections on my belly. Plus a few on the legs. Please say "Hi" to Edith from Chris and me. (Good to hear about her improved visual ability!)
Patrice
Steve: About the bruises, I have many---one in each spot of the Clexane injections on my belly. Plus a few on the legs. Please say "Hi" to Edith from Chris and me. (Good to hear about her improved visual ability!)
Patrice
I'm so glad to hear from you all! I've been away on vacation at a music festival for the past week and have been itching to see if there were any updates! So glad to hear you are all doing well (apart from the colds, etc.).
Well, Jeff's doing very well these days. He says his fatigue is getting better on a daily basis, and we all notice it too. One other major improvement is his voice. Both our parents said they have noticed a marked improvement in the tone and strength of his voice (it used to be somewhat monotone, but not anymore).
We are not having much luck getting Lyme's treatment here so far. We are still waiting for the official test results (instead of the fax), and hopefully it will be in English, or we will have to get it translated or get a Polish doctor. I spoke to our family doctor about it and she started ranting about how she thought it wasn't accurate, they don't know how they do things in Poland, but it's different here, and that he needs to show a tick bite for a positive Lyme's diagnosis. She said she'd refer him to an infectious diseases doctor if we can show the results in English. I think it's time for a new doctor! She missed the MS diagnosis for over a year, wanting to send him to a psych for anti-depressants and she missed the Lyme's disease diagnosis for the last 5 years (it was a different doctor here that got the false negative test). And now if she's going to be giving us a hard time, I think it's time for us to get a doctor that is actually concerned with our help (like the many Polish doctors we have met!).
So the fight continues...
Kate: I hope that all is going well on your side of the world, and with your dad as well. We miss you and everyone we met in Poland so very much. I wish Dr. Kuczmik a speedy recovery!
Dave White
Well, Jeff's doing very well these days. He says his fatigue is getting better on a daily basis, and we all notice it too. One other major improvement is his voice. Both our parents said they have noticed a marked improvement in the tone and strength of his voice (it used to be somewhat monotone, but not anymore).
We are not having much luck getting Lyme's treatment here so far. We are still waiting for the official test results (instead of the fax), and hopefully it will be in English, or we will have to get it translated or get a Polish doctor. I spoke to our family doctor about it and she started ranting about how she thought it wasn't accurate, they don't know how they do things in Poland, but it's different here, and that he needs to show a tick bite for a positive Lyme's diagnosis. She said she'd refer him to an infectious diseases doctor if we can show the results in English. I think it's time for a new doctor! She missed the MS diagnosis for over a year, wanting to send him to a psych for anti-depressants and she missed the Lyme's disease diagnosis for the last 5 years (it was a different doctor here that got the false negative test). And now if she's going to be giving us a hard time, I think it's time for us to get a doctor that is actually concerned with our help (like the many Polish doctors we have met!).
So the fight continues...
Kate: I hope that all is going well on your side of the world, and with your dad as well. We miss you and everyone we met in Poland so very much. I wish Dr. Kuczmik a speedy recovery!
Dave White
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Bizzy
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Well the headaches only lasted a few days, but am I ever bruised! The injection on my stomach yesterday bled and is now bruised the size of a small orange. Well only four injections to go and another 2 weeks of plavix!! I asked my GP this morning whether I should get bloodwork and he said no. I also asked if he thought it would be a good idea to continue with a baby aspirin to keep the veins flowing and he said that aspirin did not help with veins!
Anyways, it is so good to hear from everyone, even Malinda's dad! on how people are seeing small changes. I noticed the biggest improvements last week, but this week I'm more sluggish. Went to see my GP this morning and I was a bit dissappointed that I could not show him any improvements.
Well, I'm also wishing Dr. Kuczmik a speedy recovery and hope Kate's dad is doing better. Kate mentioned in an e-mail that me that the operations for Aug, Sept and Oct. are still on schedule and to inform other CCSVI-ers'.
Sue
Anyways, it is so good to hear from everyone, even Malinda's dad! on how people are seeing small changes. I noticed the biggest improvements last week, but this week I'm more sluggish. Went to see my GP this morning and I was a bit dissappointed that I could not show him any improvements.
Well, I'm also wishing Dr. Kuczmik a speedy recovery and hope Kate's dad is doing better. Kate mentioned in an e-mail that me that the operations for Aug, Sept and Oct. are still on schedule and to inform other CCSVI-ers'.
Sue
Diagnosed in 1986 - was RRMS now SPMS.
Update from Hungary
Hello Everyone,
I was in Tychy with my wife Monika and with one of our friend also CCSVI treatment between June 21 and June 28. I want to tell you thr latest news about us. Monika is feeling fine. Her feet are warm, the "brain fog" she was complaining about vanished, her balance is better, her incontinency improved dramatically. Unfortunately her walking did not improve at all but she says if nothing else chages it was worth to go to Tychy. We were also shocked by Dr. Kuzmik's accident, and we also we him fast and complete recovery. The weather in Hungary is extremely hot. The daytime temperature is above 33 degrees Celsius and the nights are not much colder. And the meteorologists say it will stay here for the next week or so.
In this weather we do not leave the house. We stay indoors with the help of the arconditioning.
We hope that everybody is feeling better, who had the Liberation Treatment.
Take care
Love and Best Wishes
Peter
I was in Tychy with my wife Monika and with one of our friend also CCSVI treatment between June 21 and June 28. I want to tell you thr latest news about us. Monika is feeling fine. Her feet are warm, the "brain fog" she was complaining about vanished, her balance is better, her incontinency improved dramatically. Unfortunately her walking did not improve at all but she says if nothing else chages it was worth to go to Tychy. We were also shocked by Dr. Kuzmik's accident, and we also we him fast and complete recovery. The weather in Hungary is extremely hot. The daytime temperature is above 33 degrees Celsius and the nights are not much colder. And the meteorologists say it will stay here for the next week or so.
In this weather we do not leave the house. We stay indoors with the help of the arconditioning.
We hope that everybody is feeling better, who had the Liberation Treatment.
Take care
Love and Best Wishes
Peter
Peter, Great to hear from you. Hope you are doing well. Are you able to keep the house cool enough. 33C day after day will warm everything up to that temp and AC's sometimes have trouble keeping up.
Has Monika had a change in energy levels or leg strength? Good to hear about her improvements.
Edith is feeling tired today, did not sleep very well last night. It's probably due to the high humidity the last few days.
Steve
Has Monika had a change in energy levels or leg strength? Good to hear about her improvements.
Edith is feeling tired today, did not sleep very well last night. It's probably due to the high humidity the last few days.
Steve
hello from sindy
Hello Peter good to hear from you.MR.G is doing ok he still has no voice,guess that leaves it to me to talk again (im laughing now).He worked yesterday and was very tiread tired at the end of the day.With luck maybe his voice will come back soon.His balance is still good but feeling down because of so many good things seem to be gone right now.I'M sure soon as he is over the cold he will feel better, but we are like the rest of you wondering if the one they opened by ballon has closed.Our dr has made the appointment for the dopper test but it is not till end of aug.
Dbird sorry to hear Edith is not feeling well, but like us you both had a long trip home and with rest she will feel better soon. It is so nice to hear from everyone on how they are doing , seems like most have had great days then the one step back,but from reading on this sight for so long seems most have done this and then got feeling better in some way.
love ya all and hope to hear more from you all .
keep safe Sindy and MR G
Dbird sorry to hear Edith is not feeling well, but like us you both had a long trip home and with rest she will feel better soon. It is so nice to hear from everyone on how they are doing , seems like most have had great days then the one step back,but from reading on this sight for so long seems most have done this and then got feeling better in some way.
love ya all and hope to hear more from you all .
keep safe Sindy and MR G
hello from sindy
Brenda we hope you are feeling well again let us know how you are when you get a min. thank you
Sindy
Sindy
Monika's condition
Dear Friends,
I want to add a little more information concerning Monika's condition. Her legs did not get any stronger, but she is feeling herself more energetic and less tired in the daytime. But since suffered from MS for the last twenty years, and her condition is much worse than mine that means that her recovery will take much longer. It will take the myelin and the axons more time to rebuild. But I hope that time will bring more improvement.
I want to add a little more information concerning Monika's condition. Her legs did not get any stronger, but she is feeling herself more energetic and less tired in the daytime. But since suffered from MS for the last twenty years, and her condition is much worse than mine that means that her recovery will take much longer. It will take the myelin and the axons more time to rebuild. But I hope that time will bring more improvement.
Hi from another SFer
hello,
recuperating from the procedure. have had fluctuating symptoms. right after procedure left foot felt numb (strange, haven't had numbness since late 90's, tired, weak legs, worse balance, headaches, tension. hope the good starts coming on soon. have 4 shots remaining. big black, some yellow bruises. does anyone know how long that will last? the communication from everyone is great. love the doctors. so lucky to experience Poland! sorry, forgetting all i wanted to mention. another time. happy to be amongst you. Goodnight!
-H
recuperating from the procedure. have had fluctuating symptoms. right after procedure left foot felt numb (strange, haven't had numbness since late 90's, tired, weak legs, worse balance, headaches, tension. hope the good starts coming on soon. have 4 shots remaining. big black, some yellow bruises. does anyone know how long that will last? the communication from everyone is great. love the doctors. so lucky to experience Poland! sorry, forgetting all i wanted to mention. another time. happy to be amongst you. Goodnight!
-H
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BrendaReqier
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Hi all today was a better day for me, no fatigue until after supper and leg came back almost to where it was a couple weeks ago.
hh, it is a slow process. I had low grade head aches for about 3 weeks after, and I think my glasses are bugging me. Others have been told to get eyes checked after 2 weeks because of possible changes, and I believe my glasses are off for me now.
Weird thing, when I had the valve stented in my left jugular, my right hand got 1/2 the feeling back, no change in the left, but depending on how a lay at night, sometimes the right is better now and the left gets a bit worse. It seems our bodies really need time to figure out how to handle the change in blood flow. Also...avoid stress!!! trust me on that one, it didn't change from pre procedure!
good to see everyone talking again
today was a better day for me, no fatigue until after supper and leg came back almost to where it was a couple weeks ago. hh, it is a slow process. I had low grade head aches for about 3 weeks after, and I think my glasses are bugging me. Others have been told to get eyes checked after 2 weeks because of possible changes, and I believe my glasses are off for me now.
Weird thing, when I had the valve stented in my left jugular, my right hand got 1/2 the feeling back, no change in the left, but depending on how a lay at night, sometimes the right is better now and the left gets a bit worse. It seems our bodies really need time to figure out how to handle the change in blood flow. Also...avoid stress!!! trust me on that one, it didn't change from pre procedure!
good to see everyone talking again
hi everyone,
a sunny day here in no. california. brenda, thanks for your reply. please, do as others suggest and see the eye doctor. helps set a baseline for you. i'll do the same. my tension, is head tension (unrelated to stress, and different than a headache). tho i know how stress becomes a big factor. i, too, had a left IJV valve problem. i like your similar explanation to the blood flow. it does take time as the body flows the blood and gets used to the changes. just 2 more shots to go, and i'm excited.
brenda, are you not feeling well? or am i reading other posts incorrectly?
malinda, where are you? i'll love to talk to you. how are you feeling? hear your family is on vacation. hello to your mom trudy. she is a special woman!
all my love to dr k. we all hope you are making a full recovery. please take all the time you are needing to heal properly.
hope recovery for everyone is showing improvements and getting enough rest.
- hh
a sunny day here in no. california. brenda, thanks for your reply. please, do as others suggest and see the eye doctor. helps set a baseline for you. i'll do the same. my tension, is head tension (unrelated to stress, and different than a headache). tho i know how stress becomes a big factor. i, too, had a left IJV valve problem. i like your similar explanation to the blood flow. it does take time as the body flows the blood and gets used to the changes. just 2 more shots to go, and i'm excited.
brenda, are you not feeling well? or am i reading other posts incorrectly?
malinda, where are you? i'll love to talk to you. how are you feeling? hear your family is on vacation. hello to your mom trudy. she is a special woman!
all my love to dr k. we all hope you are making a full recovery. please take all the time you are needing to heal properly.
hope recovery for everyone is showing improvements and getting enough rest.
- hh
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BrendaReqier
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hi hh
I wasn't feeling well a couple of weeks post, but getting better again now. I just have to listen to different signals from my body now, and get used to it changing from time to time, as one friend said, 'two steps forward, one step backwards.
i couldn't wait to finish my shots, the last one left a huge black and purple bruise on my stomach, but it's almost gone now. Still it's all worth it.
hope everyone is doing well
I wasn't feeling well a couple of weeks post, but getting better again now. I just have to listen to different signals from my body now, and get used to it changing from time to time, as one friend said, 'two steps forward, one step backwards.
i couldn't wait to finish my shots, the last one left a huge black and purple bruise on my stomach, but it's almost gone now. Still it's all worth it.
hope everyone is doing well