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10 August Roll Call
What's everyone up to this week?
For us in the Northern hemisphere, the 'dog days' of summer are slowly winding down, though we likely have about a month to go before things really cool off. How are you managing?
And for those in the Southern Hemisphere, are those days starting to feel longer? It's a double-edged sword, isn't it? Longer days can lift the spirits, but they also mean that heat is on the horizon.
Any doctor's appointments? Special events? Insights into the meaning of life?
For us in the Northern hemisphere, the 'dog days' of summer are slowly winding down, though we likely have about a month to go before things really cool off. How are you managing?
And for those in the Southern Hemisphere, are those days starting to feel longer? It's a double-edged sword, isn't it? Longer days can lift the spirits, but they also mean that heat is on the horizon.
Any doctor's appointments? Special events? Insights into the meaning of life?
Hi,
I'm waiting on confirmation of an MS diagnosis. (consultant has phoned me after my lumbar punture results to say it looks like I am dealing with MS and has referred me to the specialist to confirm the diagnosis)
This has only happened over the last month to me. Consultant phoning 2 weeks ago so this is all new to me.
I too am walking like an old lady! haha, was just wondering if you find the swimming good for the pain and condition of the legs and any of the pain of the body. Thankyou..
I'm waiting on confirmation of an MS diagnosis. (consultant has phoned me after my lumbar punture results to say it looks like I am dealing with MS and has referred me to the specialist to confirm the diagnosis)
This has only happened over the last month to me. Consultant phoning 2 weeks ago so this is all new to me.
I too am walking like an old lady! haha, was just wondering if you find the swimming good for the pain and condition of the legs and any of the pain of the body. Thankyou..
Hi Lulu
Not heard of iConquerMS - what's that all about then? Is it just US?
Sounds interesting!
Thanks
Nx
Not heard of iConquerMS - what's that all about then? Is it just US?
Sounds interesting!
Thanks
Nx
Hi Laura! Yes, I mean to keep this going every week, but I usually forget! And remembering on a Wednesday does seem a bit tardy to start it. If anyone here doesn't see it already up on a Monday, feel free to start it yourselves! Those of us outside North and South America usually have a few hours head start on this, but like I said - it's easy to forget. The positive response from a lot of the newer faces may jog my memory next week!
I'm on iConquerMS. I think it's a lot to to with muscle (and browser) memory that still has this as my first port of call. Perhaps I should retrain those fingers! Thank you for all of the work you do for our community, Laura, in real life, in other places on the internet, all over! You've been an important, if digital, part of my own journey since the very beginning.
I'm on iConquerMS. I think it's a lot to to with muscle (and browser) memory that still has this as my first port of call. Perhaps I should retrain those fingers! Thank you for all of the work you do for our community, Laura, in real life, in other places on the internet, all over! You've been an important, if digital, part of my own journey since the very beginning.
Immesceo,
How lovely to drop through and see the weekly roll call that I began several years back revived. Its a great way to stay in touch and build community.
I'm still tied deeply to getting iConquerMS underway - if you haven't stopped through and joined us for the effort, please do. We are ultimately seeking 20,000 people with MS to help out, so each one of you count! All the big name MS orgs in the US are on board with this one.
best to all,
Laura
How lovely to drop through and see the weekly roll call that I began several years back revived. Its a great way to stay in touch and build community.
I'm still tied deeply to getting iConquerMS underway - if you haven't stopped through and joined us for the effort, please do. We are ultimately seeking 20,000 people with MS to help out, so each one of you count! All the big name MS orgs in the US are on board with this one.
best to all,
Laura
Ireland is indeed my home. Ironically, my family's not from here. I'm just the black sheep who emigrated from the States 13 years ago. Married to a local, so I'm not leaving any time soon!
As far as cooling vests, many local MS Society chapters often have low or no-cost offers on them in late spring. Here's a link to some past discussions on the board about them. http://www.medhelp.org/search?utf8=%26%23x2713%3B&query=cooling+vest&camp=top_nav_search
As far as cooling vests, many local MS Society chapters often have low or no-cost offers on them in late spring. Here's a link to some past discussions on the board about them. http://www.medhelp.org/search?utf8=%26%23x2713%3B&query=cooling+vest&camp=top_nav_search
Wow!! You live in Ireland? My family is from Ireland . Apparently I can purchase land there tax free because of my herritage. Never did. But .. We have been there. Loved it. Kissed the Blarney Stone.. But alas.. Not much luck. *Sigh.*.
I'm looking into the cooling vests. Do they work? Just wondered if anyone's used them.
I'm looking into the cooling vests. Do they work? Just wondered if anyone's used them.
Thanks Imm!
All in all my Neuro is pretty good. You were right about the no news is good news thing. She said because my MRI had no new lesions that all I have going on are symptoms of MS caused by the existing lesions. So today I indeed was the annoying Patient and got all my questions answered.
I love doing yoga but stopped because of lack of energy and stamina. So thank you for your encouraging words. Baxter is indeed a wonderful helper. I was so excited and proud he was so good about helping. He is as cute as can be. I love him!!!
Thanks again Imm for starting such a great thread.
Regards, barb
All in all my Neuro is pretty good. You were right about the no news is good news thing. She said because my MRI had no new lesions that all I have going on are symptoms of MS caused by the existing lesions. So today I indeed was the annoying Patient and got all my questions answered.
I love doing yoga but stopped because of lack of energy and stamina. So thank you for your encouraging words. Baxter is indeed a wonderful helper. I was so excited and proud he was so good about helping. He is as cute as can be. I love him!!!
Thanks again Imm for starting such a great thread.
Regards, barb
Poppy,
I love the image of your cats racing for the door. We had indoor/outdoor cats when I was a child too, and I remember practically getting toppled over some days!
UTIs = zero fun. But good on you for being proactive about having it seen too. I recently needed to reduce my hours for similar reasons to you declining the job offer. You seem to have the right attitude. You don't have to pretend it's a wonderful thing, but you're also able to tease out the positives. And more time with horses(!!) is definitely a positive.
Rachel (or CR, or Nx whichever you prefer!),
How amazing to have won a trip to Florida! A friend of mine won one when he was about 21 too, when he worked at a grocery shop and they had some sort of sweepstakes. Great to hear that you are tolerating heat well. You're perfectly right - not everyone has negative reactions to it.
Mathgirl,
Enjoy that family time. We'll be thinking about you on Friday. I hope, between the MRI and the exam you've just had, that things become clearer. If you mean nervous re: the MRI itself, it's possible to get prescribed a mild sedative. Many people find that helpful. If it's more about worry over the results, just focus on the fact that you're doing something very positive for yourself. An MRI has the potential to be a huge piece of the puzzle. Don't let your mind jump the gun about what will or won't be found. That's all unknown just yet.
Barb,
I love the idea of animal yoga assistants! And Baxter's a great name. And congratulations to you on finishing! There's no shame in having to do a shortened version, of course, but if it's your first time in months to complete it, it's a big deal.
Best of luck at your neurology appointment on Tuesday. Perhaps it's possible that her office has more of a 'no news is good news' policy. I don't think it's unique to her though. I think we all just get into the habit of extreme proactivity when it comes to our care. Neuro doesn't bring up my symptoms? I do. Neuro doesn't mention symptomatic treatment? I tell him what I'm looking for. Neuro doesn't explain the radiologist report? I ask it to be interpreted in plain English. (these are just examples compiled from things we see around here regularly).
By all means, seek out another opinion if you truly feel her standard of care is not up to scratch. But no, having to be 'that annoying patient' is pretty much something we all make peace with!
I love the image of your cats racing for the door. We had indoor/outdoor cats when I was a child too, and I remember practically getting toppled over some days!
UTIs = zero fun. But good on you for being proactive about having it seen too. I recently needed to reduce my hours for similar reasons to you declining the job offer. You seem to have the right attitude. You don't have to pretend it's a wonderful thing, but you're also able to tease out the positives. And more time with horses(!!) is definitely a positive.
Rachel (or CR, or Nx whichever you prefer!),
How amazing to have won a trip to Florida! A friend of mine won one when he was about 21 too, when he worked at a grocery shop and they had some sort of sweepstakes. Great to hear that you are tolerating heat well. You're perfectly right - not everyone has negative reactions to it.
Mathgirl,
Enjoy that family time. We'll be thinking about you on Friday. I hope, between the MRI and the exam you've just had, that things become clearer. If you mean nervous re: the MRI itself, it's possible to get prescribed a mild sedative. Many people find that helpful. If it's more about worry over the results, just focus on the fact that you're doing something very positive for yourself. An MRI has the potential to be a huge piece of the puzzle. Don't let your mind jump the gun about what will or won't be found. That's all unknown just yet.
Barb,
I love the idea of animal yoga assistants! And Baxter's a great name. And congratulations to you on finishing! There's no shame in having to do a shortened version, of course, but if it's your first time in months to complete it, it's a big deal.
Best of luck at your neurology appointment on Tuesday. Perhaps it's possible that her office has more of a 'no news is good news' policy. I don't think it's unique to her though. I think we all just get into the habit of extreme proactivity when it comes to our care. Neuro doesn't bring up my symptoms? I do. Neuro doesn't mention symptomatic treatment? I tell him what I'm looking for. Neuro doesn't explain the radiologist report? I ask it to be interpreted in plain English. (these are just examples compiled from things we see around here regularly).
By all means, seek out another opinion if you truly feel her standard of care is not up to scratch. But no, having to be 'that annoying patient' is pretty much something we all make peace with!
What a great idea!!!
I got through my whole yoga routine today with a little help from my Baxter dog. He was there to hold onto for balance. This was the first time in months I got through the whole thing.
Have an appointment with my Neuro tomorrow. About 3 months ago I thought I was having a relapse so she sent me for an MRI but she never called with the results. I called the office and the office gal sent me a copy of my report which said no enhancing lesions. So eventually my symptoms got better.
So I guess if there are no new lesions she doesn't call or consider treatment for your symptoms. I am so on the fence with this Neuro! What do you guys think? I kind of feel like I am on my own when it comes to managing this disease. Was a phone call after the MRI expecting too much???
When I see her she seems to care. But I kinda feel like I got the blow off cause there was no change in my MRI.
The weather here in Michigan has been pretty pleasant the last week. The humidity has gone so I have been outside more. Yay!!!!!
All the best to everyone, and thanks I'm for starting this thread!!! ;)
Regards,barb
I got through my whole yoga routine today with a little help from my Baxter dog. He was there to hold onto for balance. This was the first time in months I got through the whole thing.
Have an appointment with my Neuro tomorrow. About 3 months ago I thought I was having a relapse so she sent me for an MRI but she never called with the results. I called the office and the office gal sent me a copy of my report which said no enhancing lesions. So eventually my symptoms got better.
So I guess if there are no new lesions she doesn't call or consider treatment for your symptoms. I am so on the fence with this Neuro! What do you guys think? I kind of feel like I am on my own when it comes to managing this disease. Was a phone call after the MRI expecting too much???
When I see her she seems to care. But I kinda feel like I got the blow off cause there was no change in my MRI.
The weather here in Michigan has been pretty pleasant the last week. The humidity has gone so I have been outside more. Yay!!!!!
All the best to everyone, and thanks I'm for starting this thread!!! ;)
Regards,barb
North Carolina has been hot and humid. I'm ready for some cooler days!
I'm a limbo lander. I just had first neurology appointment last week and I have my first MRI on Friday. I'm getting nervous. I want to find out what is wrong with but on the other hand I'm scared of the answer. In the meantime I'm enjoying time in Illinois with my family.
Thanks Immi,
Last went to Florida when I won a holiday in a nightclub on New Year's Eve! Age 21 at the time, so a fair few moons ago!
Soooooo, looking forward to Harry Potter in the two Universal Parks! *Squeals*
I'm usually pretty good in heat when everyone else is wilting and suffer more in the cold bizarrely - now MS has reared its head that may change. Funny how some animals have thick fur and live in hot climates isn't it!
Will def be posting about how the meds go - I don't seem to be able to upload photos as I use an iPad mini.
Nx
Last went to Florida when I won a holiday in a nightclub on New Year's Eve! Age 21 at the time, so a fair few moons ago!
Soooooo, looking forward to Harry Potter in the two Universal Parks! *Squeals*
I'm usually pretty good in heat when everyone else is wilting and suffer more in the cold bizarrely - now MS has reared its head that may change. Funny how some animals have thick fur and live in hot climates isn't it!
Will def be posting about how the meds go - I don't seem to be able to upload photos as I use an iPad mini.
Nx
We're having some really heavy frosts here in NZ, but get lovely days out of them. The cats a like bullets through the door in the mornings when we let them in.
It will probably be back to the GP this week as it looks like I'm brewing my second UTI in a short time, *sigh*.
I've just turned down a job offer because the hours don't coincide with what is 'acceptable' to my body, so a bit disappointed. On the flipside, it gives me more time to play with my horses and do things with the kids. Can't wait for the ground to dry up a bit more.
Poppy
It will probably be back to the GP this week as it looks like I'm brewing my second UTI in a short time, *sigh*.
I've just turned down a job offer because the hours don't coincide with what is 'acceptable' to my body, so a bit disappointed. On the flipside, it gives me more time to play with my horses and do things with the kids. Can't wait for the ground to dry up a bit more.
Poppy
Clear as a bell to me! Brava on getting on the bike. Sometimes you have to call in the reinforcements. I still consider it a result!
Do make sure you have all your cooling ducks in a row for Florida. Hot and humid is a tough combo, the best of times. But sounds like you'll be there with folks who care. You'll have a blast. Have you ever been before?
Changeable summer, I hear ya! Here in Ireland, it's been pretty much the same, though less windy. But I know I survive a lot better in 'changeable' than I do in the climate I was raised in. Oppressive heat from May to September? No thanks!
Remind us when you get back (feel free to share photos!) and we'll cheer you on as you start your new med.
Do make sure you have all your cooling ducks in a row for Florida. Hot and humid is a tough combo, the best of times. But sounds like you'll be there with folks who care. You'll have a blast. Have you ever been before?
Changeable summer, I hear ya! Here in Ireland, it's been pretty much the same, though less windy. But I know I survive a lot better in 'changeable' than I do in the climate I was raised in. Oppressive heat from May to September? No thanks!
Remind us when you get back (feel free to share photos!) and we'll cheer you on as you start your new med.
Nice idea!
Went out in my racing bike for the first time in a year (back op meant I couldn't lean forward to could only use hybrid). Had been cycling round our village (Warwickshire, UK) and had kidded myself I was ready to try my lovely racer and part of an old route I used to do.
Racer vs Back no problem - tick!
Route vs fitness to do it - wawa oops!
Got to within 2 miles of home having done about 4 with little stops and arms/legs decided playtime was over! Had to call my hubby for a mercy rescue!
Back to cycling round village then for a bit longer.
On count down to our Summer holiday, 2 weeks being Mrs Tourist in Florida - woo hoo! Doing most of the parks, Space Centre, Everglades etc Yippee!!!
I'll get to have plenty of sit downs as I'm designated bag holder while husband, daughter and goddaughter do the rides.
Our Summer has been very changeable, warm, hot, dry then cold, wet and cloudy, nod a mix of all sometimes on the same day - the one consistent element this year being the incessant wind howling every day!
Start Tecfidera when we come home so wish me luck ...
Nx
Went out in my racing bike for the first time in a year (back op meant I couldn't lean forward to could only use hybrid). Had been cycling round our village (Warwickshire, UK) and had kidded myself I was ready to try my lovely racer and part of an old route I used to do.
Racer vs Back no problem - tick!
Route vs fitness to do it - wawa oops!
Got to within 2 miles of home having done about 4 with little stops and arms/legs decided playtime was over! Had to call my hubby for a mercy rescue!
Back to cycling round village then for a bit longer.
On count down to our Summer holiday, 2 weeks being Mrs Tourist in Florida - woo hoo! Doing most of the parks, Space Centre, Everglades etc Yippee!!!
I'll get to have plenty of sit downs as I'm designated bag holder while husband, daughter and goddaughter do the rides.
Our Summer has been very changeable, warm, hot, dry then cold, wet and cloudy, nod a mix of all sometimes on the same day - the one consistent element this year being the incessant wind howling every day!
Start Tecfidera when we come home so wish me luck ...
Nx
Swimming sounds just the thing if walking is a painful challenge. Those 6 pounds are something to be proud of! Inspiring! I certainly hope there are positive distractions a-plenty, Alex.
I is hot but it is North Carolina. We keep our a/c at 78-80F. I am swimming an hour a day. I have lost 6 pounds. The MS has caught up to my walking. I walk like an old lady. It is mostly pain that gets me. I am hoping I will be distracted from the pain on our trip.
Alex
Alex
I hope your appointment goes well and provides clarification about your issues. Having had that experience once myself, I know how troubling it can be (in my case it was just a one-off—one of those anomalies that never repeated itself thankfully).
Phoenix has to be one of the most challenging places on earth, temperature-wise. I hope you're keeping (relatively) cool somehow! But how wonderful you have an amazing holiday to look forward to next year. Goals on the horizon is definitely one of the 'tricks of the trade' when it comes to keeping our spirits up.
Phoenix has to be one of the most challenging places on earth, temperature-wise. I hope you're keeping (relatively) cool somehow! But how wonderful you have an amazing holiday to look forward to next year. Goals on the horizon is definitely one of the 'tricks of the trade' when it comes to keeping our spirits up.
Hi. Cute idea. " roll call". I'm trying to still figure myself out. I'm going to get checked today for bladder infection? Still not sure. Doesn't feel like one. Kinda off and on. And I read that a RARE effect of copaxone is blood on the urine. ( WHAT?). I'm one of those. I get the side effects people get and don't get.. Hence my fear of the ms meds out there.
Phx arizona is hot hot hot in the summer. I'm ready to move on. However , next summer we're taking the kids to kawaii. We got a-c .. And I'll be in the water. I hate the idea of battling w- humidity. But I gotta keep living. Gotta try.
Hope all gets better or stays well w- everyone. It's comforting you are all here.
Phx arizona is hot hot hot in the summer. I'm ready to move on. However , next summer we're taking the kids to kawaii. We got a-c .. And I'll be in the water. I hate the idea of battling w- humidity. But I gotta keep living. Gotta try.
Hope all gets better or stays well w- everyone. It's comforting you are all here.
Oops. Accidentally ticked 'best answer' on your response! Not that it's not a great contribution to the thread, but roll calls don't bring to mind superlatives like best. I don't think there's any fixing it, though.
Yes, a lot of us kiss a few frogs before finding a neurologist that's a good fit. I hope, if you do move to another, that you have better results this time. I'm sorry to hear you're paying for the boat trip, as it sounds lovely!
Yes, a lot of us kiss a few frogs before finding a neurologist that's a good fit. I hope, if you do move to another, that you have better results this time. I'm sorry to hear you're paying for the boat trip, as it sounds lovely!
Kat, Oh dear! Power outages are much less exciting when you're an adult, especially in the height of summer! I hope coming off of gilenya does the trick for your counts. Definitely something none of us what to monkey around with. I'm glad you have a doctor keeping an eye on these things.
Leanne, I hope your ON vacates the premises soon! It sounds like you've had a challenging year alright. It's funny, when most people talk about the weather, it's idle chit-chat. With MS, we mean business! Sorry you've been feeling its effects.
Truth be told, I miss the updates too. But then, nothing's stopping me from keeping them going on the rare Monday I remember!
My week, and in fact the next few months will be getting my physical health back in order - the parts I can control at least. I did a bit of concentrated mental health work over the winter (CBT) which had many positive effects BUT had the knock-on physical effect of me saying 'to heck with it' with my nutrition. Obvious outcomes came to pass...
So I'm reading Intuitive Eating (nothing gimmicky) and doing a bit of a damage assessment. MS is hard enough for all of us without us making it harder on ourselves! Lesions I can't control. BMI I can. It's time I did!
Leanne, I hope your ON vacates the premises soon! It sounds like you've had a challenging year alright. It's funny, when most people talk about the weather, it's idle chit-chat. With MS, we mean business! Sorry you've been feeling its effects.
Truth be told, I miss the updates too. But then, nothing's stopping me from keeping them going on the rare Monday I remember!
My week, and in fact the next few months will be getting my physical health back in order - the parts I can control at least. I did a bit of concentrated mental health work over the winter (CBT) which had many positive effects BUT had the knock-on physical effect of me saying 'to heck with it' with my nutrition. Obvious outcomes came to pass...
So I'm reading Intuitive Eating (nothing gimmicky) and doing a bit of a damage assessment. MS is hard enough for all of us without us making it harder on ourselves! Lesions I can't control. BMI I can. It's time I did!
Last couple day have been very warm here in PA, but looks like it will cool off for a couple days this week. Thank Goodness!! The heat has been a big pain in my backside. Just finished another round of IVSM (third in 10 months). ON still hanging in there but just pain at this point and not a lot of pressure. So things are looking up. I am looking forward to the cooler months.
Keep your heads up and keep pushing through your daily struggles.
Leanne
Keep your heads up and keep pushing through your daily struggles.
Leanne
Not too hot here this week here in new england last week was brutal after a long power outage. Doing a 3 month wash off gilenya blood counts to low after a year on it back to neuro in sept and hopefully lemtrada since that is the last available med for me now.
summer flew by for me not looking forward to winter got hit hard last year hate the cold need to go south
hope everyone is doing well I miss these weekly roll calls
kat
summer flew by for me not looking forward to winter got hit hard last year hate the cold need to go south
hope everyone is doing well I miss these weekly roll calls
kat
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Fresh off an appointment with my neuro last week which was beyond disappointing so now I am trying to figure it if it is time to cut him loose or not. I don't like the idea of switching for a number of reasons but it is time to seriously consider it.
It has been ridiculously humid here in New Brunswick Canada for several weeks now. I did a 10 hour boat trip over the weekend and I think I am paying for that extra heat and sun today. Ugh. Beautiful trip though.
I hope everyone has a great week!
Corrie