CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
The joint application between Noble Hospital and CCSVI Clinic has been approved through the IEC Institutional Review Board (IRB) that will allow researchers to use patient data to study their new extended and enhanced aftercare treatment protocol. Please Call 888-419-6855 to know more about participating in the study. Log on to ccsviclinic. ca for more information. Email apply -at- ccsviclinic. ca
Hi MSM, sounds similar. Would like to see yours on video - I have not found anyone else with MS who has the same thing. Are you taking meds for it and how long have you had it? Hope you are doing well. Kerri
Do you make noise when you are having these spasms too? I have similar symtoms only the movements are usually quite fast. Some times the spasms in my abdomen, which is where they seems to start, causes me to make a loud 'huh!'. It is guaranteed to make people jump. I call it my Kossak impression.
Hi, it is rare that I would make a noise with these spasm - only if I happen to be talking at the time and it takes my breath away. I do get the spasm in my abdomen now and still in my shoulder/arm. It is a jerky movement. Hope your spasms are improving. Kerri
hello One Unusual Lady LOL, thank you 4 the vid, i dont no why but it made me cry, i have had MS 9 yrs now. I thk im coping with it well but like you i´m always tired and weak and have started to lose my vision, at the mo all is like there is a fog all around you. At the mo i have come to a hard part in my life as my wife just walked out of my life after 18yrs and as you know stress is not a good thg.. soon...Once again thx 4 yr vid and will look forward to the next...John
Hi John, it is very touching when others can relate and connect to my experience. I am so sorry about your wife. This is a huge blow and added to the losses you are already experiencing with your MS, well, it is just plain unfair! It is hard to keep a sense of humour at the best of times let alone keeping stress at bay. Feel free to message me anytime. Kerri
MS can affect your thinking and speaking and also your emotions (anger being fairly common). For me my cognitive issues, which were caused by a lesion on my brain, have improved. It was worse when the lesion was active now it has likely scarred over. Technically the brain doesn't shrink but there may be increased scarring over time. It certainly does not mean she is going to die, it would be rare for that to happen. You sound like a supportive daughter and she is lucky to have you. Kerri :)
my mom has MS and shes get really frusterated..when she cant find the right words..she has conginitve dysfunction or something like that..
she sometimes take her anger out on me and my sister..not physiclly but she keeps yelling at us...and i cry because its sad, not because of what she said to me...her doc said her brain shrunk, does this me shes going to die??
ur doin fine, we all go through our ups and downs,
rough patches, sumtime its quiet funny & other times its quiet frustrading & depressing its a natual part of our MS. your doing fine hun & u WLL get better, just keep up that attitude u will do great.
hi five babe (Lol)and hats off to ya we should all have ur attitude. talk soon take care and be well
much luv'n hugs
cheers johnny
P.s we r still young we have plenty of time no rush it aint gunner happen over night. but it will happen
You always have a way of speaking reality and realness into a situation. We are young! (I thought you were going to say "heartache to heartache we sail" hahaha) Yeah - much time to come to grips with this MS thing and make the absolute most of life! Just like you are :-)
Hey Marlo, sorry I deleted your comment - clearly I am past it and should go to bed! Just wanted to say that I thought being called a 'lady' was funnier than being called 'unusual' lol...
Oh I definitely was/am. We had a stint of nice weather, so I was enjoying that. Then we got more snow ROFL! But it seems that things are going to improve over the week :)
Thanks Kylie, when I recorded it I was actually able to see myself and just how ridiculous it looks! I am just getting used to it (the spasm) and it is becoming my new party trick! Coming to terms - yeah accepting that the 'new normal' is always changing. Love to you, Kerri xo
Hey Kerri! You look fantastic today! I have never heard tonic spasms either..but I think I might have them. I jerk all night long just like that. Thankfully I sleep alone... otherwise I would take someone out! You seem to be managing it very well...just keep on smiling. I think we all worry to much...but it's so hard to not worry... especially when the symptoms come out of nowhere. You will get back to normal in time.
G'day Tori. Thanks! The thing with my spasm is I don't jerk at all during the night. Once I go to bed they calm down after about 10 minutes and I can sleep. It normally happens when I am sitting and totally still (so for the most part I don't even notice) but when they come in full force they can be quite violent. So weird. I am sure I will get back to some kind of normal soon. Are you on meds for your jerking? Love to you, Kerri xo
Yeah - my Neuro is pretty funny - I am sure he meant to say my symptom was unusual not that there was something odd about me! I guess for me I haven't been diagnosed long enough to know what course these things run so it really helps to hear from those who are a few steps (even if shaky steps!) ahead of me. I appreciate your vids I think I have watched them all know. Kerri xo
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CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
The joint application between Noble Hospital and CCSVI Clinic has been approved through the IEC Institutional Review Board (IRB) that will allow researchers to use patient data to study their new extended and enhanced aftercare treatment protocol. Please Call 888-419-6855 to know more about participating in the study. Log on to ccsviclinic. ca for more information. Email apply -at- ccsviclinic. ca
Gregmills007 11 months ago
@HectorMcfector oh!! Thanks so much for answering!! She's doing quite a lot better now!!! :D she's on tysrabi or something like that!!!
IsThisTourettes 1 year ago
Thank you for taking the time to keep your friends posted. This one from Canada hopes each moment brings you relief and better relief.
kdavidkdr 1 year ago
@kdavidkdr Thanks so much :)
kezzcass 1 year ago
Hi MSM, sounds similar. Would like to see yours on video - I have not found anyone else with MS who has the same thing. Are you taking meds for it and how long have you had it? Hope you are doing well. Kerri
kezzcass 2 years ago
Do you make noise when you are having these spasms too? I have similar symtoms only the movements are usually quite fast. Some times the spasms in my abdomen, which is where they seems to start, causes me to make a loud 'huh!'. It is guaranteed to make people jump. I call it my Kossak impression.
kaazoom 2 years ago
Hi, it is rare that I would make a noise with these spasm - only if I happen to be talking at the time and it takes my breath away. I do get the spasm in my abdomen now and still in my shoulder/arm. It is a jerky movement. Hope your spasms are improving. Kerri
kezzcass 2 years ago
hello One Unusual Lady LOL, thank you 4 the vid, i dont no why but it made me cry, i have had MS 9 yrs now. I thk im coping with it well but like you i´m always tired and weak and have started to lose my vision, at the mo all is like there is a fog all around you. At the mo i have come to a hard part in my life as my wife just walked out of my life after 18yrs and as you know stress is not a good thg.. soon...Once again thx 4 yr vid and will look forward to the next...John
jonwill17 2 years ago
Hi John, it is very touching when others can relate and connect to my experience. I am so sorry about your wife. This is a huge blow and added to the losses you are already experiencing with your MS, well, it is just plain unfair! It is hard to keep a sense of humour at the best of times let alone keeping stress at bay. Feel free to message me anytime. Kerri
kezzcass 2 years ago
MS can affect your thinking and speaking and also your emotions (anger being fairly common). For me my cognitive issues, which were caused by a lesion on my brain, have improved. It was worse when the lesion was active now it has likely scarred over. Technically the brain doesn't shrink but there may be increased scarring over time. It certainly does not mean she is going to die, it would be rare for that to happen. You sound like a supportive daughter and she is lucky to have you. Kerri :)
kezzcass 2 years ago
my mom has MS and shes get really frusterated..when she cant find the right words..she has conginitve dysfunction or something like that..
she sometimes take her anger out on me and my sister..not physiclly but she keeps yelling at us...and i cry because its sad, not because of what she said to me...her doc said her brain shrunk, does this me shes going to die??
IsThisTourettes 2 years ago
@IsThisTourettes: There is a naturpathic approach for MS.
HEVNAWE 5 months ago
ur doin fine, we all go through our ups and downs,
rough patches, sumtime its quiet funny & other times its quiet frustrading & depressing its a natual part of our MS. your doing fine hun & u WLL get better, just keep up that attitude u will do great.
hi five babe (Lol)and hats off to ya we should all have ur attitude. talk soon take care and be well
much luv'n hugs
cheers johnny
P.s we r still young we have plenty of time no rush it aint gunner happen over night. but it will happen
xx
n95johnny 2 years ago
Thanks Johnny :-)
You always have a way of speaking reality and realness into a situation. We are young! (I thought you were going to say "heartache to heartache we sail" hahaha) Yeah - much time to come to grips with this MS thing and make the absolute most of life! Just like you are :-)
kezzcass 2 years ago
yeah love that song, pat benatah or what ever her name was, now its stuck in my head ha ha ha. luv ya 2 girl.u make me smile
cheers johnny :)
n95johnny 2 years ago
Hey Marlo, sorry I deleted your comment - clearly I am past it and should go to bed! Just wanted to say that I thought being called a 'lady' was funnier than being called 'unusual' lol...
kezzcass 2 years ago
Hey Laura - wanted to say 'hello' to you too - not forgotten you... :-) Hope you are doing well.
kezzcass 2 years ago
Haha, if you're speaking to me hun, it's ok! :) I was really busy the past while, but things have calmed down so I'm able to watch some Youtube!
Hope you have a great weekend!
dmplaura 2 years ago
Yes I was talking to you! Glad things have calmed down - hope you are stopping to enjoy the good things in life :-)
kezzcass 2 years ago
Oh I definitely was/am. We had a stint of nice weather, so I was enjoying that. Then we got more snow ROFL! But it seems that things are going to improve over the week :)
XOXOXO!
dmplaura 2 years ago
Thanks Kylie, when I recorded it I was actually able to see myself and just how ridiculous it looks! I am just getting used to it (the spasm) and it is becoming my new party trick! Coming to terms - yeah accepting that the 'new normal' is always changing. Love to you, Kerri xo
kezzcass 2 years ago
Hey Kerri! You look fantastic today! I have never heard tonic spasms either..but I think I might have them. I jerk all night long just like that. Thankfully I sleep alone... otherwise I would take someone out! You seem to be managing it very well...just keep on smiling. I think we all worry to much...but it's so hard to not worry... especially when the symptoms come out of nowhere. You will get back to normal in time.
Thinking of ya!
-Tori
ToriUTK 2 years ago
G'day Tori. Thanks! The thing with my spasm is I don't jerk at all during the night. Once I go to bed they calm down after about 10 minutes and I can sleep. It normally happens when I am sitting and totally still (so for the most part I don't even notice) but when they come in full force they can be quite violent. So weird. I am sure I will get back to some kind of normal soon. Are you on meds for your jerking? Love to you, Kerri xo
kezzcass 2 years ago
One UNUSUAL lady.
I think that is funny.
Your NEURO said that. I thought my neuro was the only doctor with a sense of humour.
We are all different. Our disease affects us all so differently.
Anyway, I just want you to know that exacerbations can last a long time.
Symptoms can occur for 6 months or more and then JUST DISAPPEAR.
Stay positive.
If your husband is anything like my wife he won't let you get down.
Take care.
IRISH
irishbear76 2 years ago
Yeah - my Neuro is pretty funny - I am sure he meant to say my symptom was unusual not that there was something odd about me! I guess for me I haven't been diagnosed long enough to know what course these things run so it really helps to hear from those who are a few steps (even if shaky steps!) ahead of me. I appreciate your vids I think I have watched them all know. Kerri xo
kezzcass 2 years ago