Aa
I am feeling desperate
I am struggling with every aspect of this diagnosis of Primary Progressive MS. I was fine one day, then got assaulted by a student in my classroom, and 8 months later I am told I have this. The strength in both legs is going very quickly, I am already using a walker. I figure at the rate I am going, I wil be in a wheelchair by Christmas. It certainly takes its toll on self-image, too. The pain is very severe at times. Can someone talk me off this ledge?
Hi Bethany
I suggest that you post this question in a new thread as it may get overlooked on this one.
At the time I was being dx'd for MS I had constant headaches all the time and they were really bad. I talked to my GP about it and also 2 different neuros and they all said the same thing that it was unlikely to be connected to MS.
At the time I was taking a lot of over the counter headached tablets (never in excess of recommended doses) but I decided to stop taking them and see what happened, and not long after my headaches appeared to vanish.
I believe that for me they were linked to stress and anxiety but I will never know...but now when I get a headache I realise how pleasant it is to not have these all the time.
When you mention the closed head injury what does this refer to as maybe our dear Quix maybe able to offer some insight...if you post this again.
Best wishes
Sarah
I suggest that you post this question in a new thread as it may get overlooked on this one.
At the time I was being dx'd for MS I had constant headaches all the time and they were really bad. I talked to my GP about it and also 2 different neuros and they all said the same thing that it was unlikely to be connected to MS.
At the time I was taking a lot of over the counter headached tablets (never in excess of recommended doses) but I decided to stop taking them and see what happened, and not long after my headaches appeared to vanish.
I believe that for me they were linked to stress and anxiety but I will never know...but now when I get a headache I realise how pleasant it is to not have these all the time.
When you mention the closed head injury what does this refer to as maybe our dear Quix maybe able to offer some insight...if you post this again.
Best wishes
Sarah
Does anyone have constant, severe headaches? Because I am dealing with a closed-head injury as well as the MS, I am not always sure what is causing the symptoms. These began November13, 2009, the day I was assualted, and has continued to this day with only very brief periods of relief. Can MS cause these headaches, too?
Hi Bethany
I am not sure we have met before so just thought I would add to the thread that I am really sorry that you are struggling with your dx of PPMS. I have RRMS and for me this felt a terrible dx to receive...but I know if I had been given PPMS I would have felt desperate.
I have been through some traumatic challenges during the last few years and when thing pile up and yet another thing happens in your life it can be soul destroying so I understand how tough it must be for you with what has happened in the last year. Your assault in the classroom must have been incredibly traumatic and I am wondering if you had any counselling for this. It feels a bit like I am suggesting to loads of people to have counselling but I would not be a therapist if I did not believe 100% that it can really help people to unpack their feelings and emotions and move forward.
I would like to add as a general comment that even if we do not have the same dx, we all have the capacity to offer love and support to each other. So for those in limboland, with RRMS, PPMS, SPMS or any other condition your input to any thread is welcomed.
You have had some wonderful replies here from friends who really understand and to single any one particular response would not be appropriate...but I am sure the answers here will be of help to many people.
Don't stay on that ledge, but find the courage to look at what gives your life meaning and pleasure each and every day. I hope that you gain strength from everyone here and this forum provides wonderful free therapy for us all.
WIth love and hugs
Sarah x
I am not sure we have met before so just thought I would add to the thread that I am really sorry that you are struggling with your dx of PPMS. I have RRMS and for me this felt a terrible dx to receive...but I know if I had been given PPMS I would have felt desperate.
I have been through some traumatic challenges during the last few years and when thing pile up and yet another thing happens in your life it can be soul destroying so I understand how tough it must be for you with what has happened in the last year. Your assault in the classroom must have been incredibly traumatic and I am wondering if you had any counselling for this. It feels a bit like I am suggesting to loads of people to have counselling but I would not be a therapist if I did not believe 100% that it can really help people to unpack their feelings and emotions and move forward.
I would like to add as a general comment that even if we do not have the same dx, we all have the capacity to offer love and support to each other. So for those in limboland, with RRMS, PPMS, SPMS or any other condition your input to any thread is welcomed.
You have had some wonderful replies here from friends who really understand and to single any one particular response would not be appropriate...but I am sure the answers here will be of help to many people.
Don't stay on that ledge, but find the courage to look at what gives your life meaning and pleasure each and every day. I hope that you gain strength from everyone here and this forum provides wonderful free therapy for us all.
WIth love and hugs
Sarah x
In addition to the Health Page that ess mentioned there is its partner, one on Treating Neuropathic Pain. It emphasizes that you must increase all these meds very slowly in order to avoid the bigtime side effects.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/General-Principles-of-Treating-Neuropathic-Nerve-Pain/show/452?cid=36
Quix
http://www.medhelp.org/health_pages/Multiple-Sclerosis/General-Principles-of-Treating-Neuropathic-Nerve-Pain/show/452?cid=36
Quix
Bethany, meds like Neurontin should never be doubled. The patient is likely to get really weird side effects, and then just quit the med. Please see
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Nerve-Neuropathic-Pain---A-Primer/show/371?cid=36
and other Health Pages that talk about neuropathic pain. You need to move up very slowly, and your chances of success will be much higher.
Mark, thanks so much for all the info about power chairs. I am nowhere near that point and hope never to be. But there's nothing like hearing from those who've been there, done that, and many on this forum will be very appreciative of your comments.
It's so good to read such good reports on Ampyra. From what I've gathered, it doesn't work for everyone, or even the majority. Still, it's certainly worth trying, especially if it can positively affect so many functions other than walking. Are you heat-sensitive, and has Ampyra helped you with that? That's been my biggest problem this entire summer.
I doubt that my neuro would prescribe A. for me, but I wouldn't mind trying the much cheaper compounded version.
ess
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Nerve-Neuropathic-Pain---A-Primer/show/371?cid=36
and other Health Pages that talk about neuropathic pain. You need to move up very slowly, and your chances of success will be much higher.
Mark, thanks so much for all the info about power chairs. I am nowhere near that point and hope never to be. But there's nothing like hearing from those who've been there, done that, and many on this forum will be very appreciative of your comments.
It's so good to read such good reports on Ampyra. From what I've gathered, it doesn't work for everyone, or even the majority. Still, it's certainly worth trying, especially if it can positively affect so many functions other than walking. Are you heat-sensitive, and has Ampyra helped you with that? That's been my biggest problem this entire summer.
I doubt that my neuro would prescribe A. for me, but I wouldn't mind trying the much cheaper compounded version.
ess
Hi Bethany,
Just got home and saw your post. I think when one asks "do I need a scooter?" is when you should get it, the energy you save is so worthwhile you'll wonder why you didn't get one sooner.
This got longer than I expected, I'll blame Ampyra.
About five years ago I asked my dr to Rx and my insurance company to pay for my scooter when I was working in a large building and never arrived early enough to get a good parking spot. I used a cane for several years previously and was very embarrassed by the thoughts of using a scooter, "eeeek I'm disabled, I'm not a full human", but finally realized I would have more energy to do what I needed and wanted if a battery attached to wheels and a seat moved me from A to B instead of my right arm and right leg and I'd be safer on CT's icy parking lots and sidewalks.
I also realized I'm a bit player in just about everyone's world, their opinions of me not worth consideration, my loved ones loving me as much as ever, happier I went through my day less tired. I didn't pay a penny for the scooter, paid about a thousand to have a hitch installed on my car and a electric lift that works like a crane and is easily stored.
If your state has a Bureau of Rehab Services or similar they might pay for the lift or modifications to a car, truck or van. Some will pay for lifts and ramps at home that make it possible for one to get to and from work, it is not a quick process.
As it turned out it is easier and faster for me to take the scooter's seat off, put it in the trunk, then lift the front wheel to the much abused rear bumper, bend my right leg, grab the scooter's handle (on its back end, not handlebar) and lift the 75 pounds up and push it into the trunk where it fits quite nicely. When I get to my destination I do the reverse which is oddly a bit harder.
Just remembered, make sure your scooter can fit in your car before you buy it. If you aren't certain, ask the salesperson for a written guarantee with a full return of costs, not a credit. He ought to be able to measure your car and decide if it fits.
FYI, my Sonic Pride (not the smallest, I didn't know what I know now) easily fits in my Saab 9-5 stored front to back, fits left to right in my son's decade old Honda Accord, and his wife's newer Accura smallest four door sedan, easily fits in minivans and small SUVs, though it should always be tied down with strong cables or nylon belts to really strong anchors. The last thing one wants is a 100 pounds of scooter and chair headed towards you or any ones' kids in a crash, rear seats providing little more protection than tissue paper.
When you get your Rx call your medical insurer and tell them you want a case manager. The process for getting scooters and chairs is so complex and changes so rapidly, that it is very challenging even for an experienced case manager, almost impossible for anyone who doesn't have access to internal web sites and a well filled rolodex, though if advts on late night TV (MS, sleep problems, never heard of them) are accurate at least one company selling scooters can take care of it.
If you don't have insurance coverage, take a look on eBay for those made in China and slightly used ones, here in SW CT, metro NY there are often scooters and chairs being sold by families when the user can't use them. A local pawn store regularly gets scooters and chairs, offer 75% of what they ask, settle for no more than 90%. Make sure you get the charger too, they are expensive new, mostly interchangeable, but amperage/wattage varies and bigger isn't always better.
Look for sellers who say pickup only, new batteries, the machine new or almost new. Check them out first via email, keep your wallet closed until you get a chance to see them and drive them in person. If the machine is too far away to examine and test it is too far if it isn't new.
Bid the smallest possible amount, don't touch an older machine. Repairs are more expensive than you can imagine, a set of batteries at least $100, a broken motor $1000 installed. I've seen almost new $40K list w.c's going for $250. Not a typo.
I strongly suggest getting a three (not four) wheel scooter for use outside the house unless you regularly travel on steep hills - going across the slope on a three wheel scooter above Pike Place Market in Seattle is very tricky, though once inside a three wheel being smaller with a tight turning radius is ideal for going from end to end, inside and outside two grandchildren with a total weight of less than a 100 pounds love helping grandpa drive around town. Get the smallest, lightest scooter you can find, it is much easier to get in and out of a car even when you have an electric lift installed.
As fond as I am of my scooter (aka Phil for you Yankee fans) there is lots to be said in favor of light weight folding manual chairs if you have a smaller car or can't easily lift or let down 50 pounds from the ground to waist height and down again using your legs to push/restrain. The big problem I have with manual wheel chairs is carrying 20+ pounds of library books, whereas a scooter with handlebars can carry two large canvas bags filled to the top. Grocery shopping with a scooter is easy, I loop big Trader Joe bags on each handlebar and can get several days food and cat food, front and rear baskets for the scooter can be purchased, though the rear one is very hard to keep an eye on. One can also push a shopping cart if you don't mind drawing attention as you run through aisle after aisle of Super super markets, Home Despots, and Office over the top stores.
In favor of scooters living as I do in a too small suburban friendly town - the smiles on children's faces. I love kids, had two who are now wonderful adults, have two grandchildren 6 and almost 9 who live too far away with their far above average parents.
If you are wealthier and luckier than the average MS'er, there is a very light weight (30 - 35 pounds) electric scooter powered by lithium batteries that I lust after even though it doesn't go in reverse for reasons I'm not sure of - one has to push backwards which might be awkward indoors.
I hope I answered more questions than you imagined, but I probably missed two or more, so please let me know.
Mark (way chattier than ever because of Ampyra)
Just got home and saw your post. I think when one asks "do I need a scooter?" is when you should get it, the energy you save is so worthwhile you'll wonder why you didn't get one sooner.
This got longer than I expected, I'll blame Ampyra.
About five years ago I asked my dr to Rx and my insurance company to pay for my scooter when I was working in a large building and never arrived early enough to get a good parking spot. I used a cane for several years previously and was very embarrassed by the thoughts of using a scooter, "eeeek I'm disabled, I'm not a full human", but finally realized I would have more energy to do what I needed and wanted if a battery attached to wheels and a seat moved me from A to B instead of my right arm and right leg and I'd be safer on CT's icy parking lots and sidewalks.
I also realized I'm a bit player in just about everyone's world, their opinions of me not worth consideration, my loved ones loving me as much as ever, happier I went through my day less tired. I didn't pay a penny for the scooter, paid about a thousand to have a hitch installed on my car and a electric lift that works like a crane and is easily stored.
If your state has a Bureau of Rehab Services or similar they might pay for the lift or modifications to a car, truck or van. Some will pay for lifts and ramps at home that make it possible for one to get to and from work, it is not a quick process.
As it turned out it is easier and faster for me to take the scooter's seat off, put it in the trunk, then lift the front wheel to the much abused rear bumper, bend my right leg, grab the scooter's handle (on its back end, not handlebar) and lift the 75 pounds up and push it into the trunk where it fits quite nicely. When I get to my destination I do the reverse which is oddly a bit harder.
Just remembered, make sure your scooter can fit in your car before you buy it. If you aren't certain, ask the salesperson for a written guarantee with a full return of costs, not a credit. He ought to be able to measure your car and decide if it fits.
FYI, my Sonic Pride (not the smallest, I didn't know what I know now) easily fits in my Saab 9-5 stored front to back, fits left to right in my son's decade old Honda Accord, and his wife's newer Accura smallest four door sedan, easily fits in minivans and small SUVs, though it should always be tied down with strong cables or nylon belts to really strong anchors. The last thing one wants is a 100 pounds of scooter and chair headed towards you or any ones' kids in a crash, rear seats providing little more protection than tissue paper.
When you get your Rx call your medical insurer and tell them you want a case manager. The process for getting scooters and chairs is so complex and changes so rapidly, that it is very challenging even for an experienced case manager, almost impossible for anyone who doesn't have access to internal web sites and a well filled rolodex, though if advts on late night TV (MS, sleep problems, never heard of them) are accurate at least one company selling scooters can take care of it.
If you don't have insurance coverage, take a look on eBay for those made in China and slightly used ones, here in SW CT, metro NY there are often scooters and chairs being sold by families when the user can't use them. A local pawn store regularly gets scooters and chairs, offer 75% of what they ask, settle for no more than 90%. Make sure you get the charger too, they are expensive new, mostly interchangeable, but amperage/wattage varies and bigger isn't always better.
Look for sellers who say pickup only, new batteries, the machine new or almost new. Check them out first via email, keep your wallet closed until you get a chance to see them and drive them in person. If the machine is too far away to examine and test it is too far if it isn't new.
Bid the smallest possible amount, don't touch an older machine. Repairs are more expensive than you can imagine, a set of batteries at least $100, a broken motor $1000 installed. I've seen almost new $40K list w.c's going for $250. Not a typo.
I strongly suggest getting a three (not four) wheel scooter for use outside the house unless you regularly travel on steep hills - going across the slope on a three wheel scooter above Pike Place Market in Seattle is very tricky, though once inside a three wheel being smaller with a tight turning radius is ideal for going from end to end, inside and outside two grandchildren with a total weight of less than a 100 pounds love helping grandpa drive around town. Get the smallest, lightest scooter you can find, it is much easier to get in and out of a car even when you have an electric lift installed.
As fond as I am of my scooter (aka Phil for you Yankee fans) there is lots to be said in favor of light weight folding manual chairs if you have a smaller car or can't easily lift or let down 50 pounds from the ground to waist height and down again using your legs to push/restrain. The big problem I have with manual wheel chairs is carrying 20+ pounds of library books, whereas a scooter with handlebars can carry two large canvas bags filled to the top. Grocery shopping with a scooter is easy, I loop big Trader Joe bags on each handlebar and can get several days food and cat food, front and rear baskets for the scooter can be purchased, though the rear one is very hard to keep an eye on. One can also push a shopping cart if you don't mind drawing attention as you run through aisle after aisle of Super super markets, Home Despots, and Office over the top stores.
In favor of scooters living as I do in a too small suburban friendly town - the smiles on children's faces. I love kids, had two who are now wonderful adults, have two grandchildren 6 and almost 9 who live too far away with their far above average parents.
If you are wealthier and luckier than the average MS'er, there is a very light weight (30 - 35 pounds) electric scooter powered by lithium batteries that I lust after even though it doesn't go in reverse for reasons I'm not sure of - one has to push backwards which might be awkward indoors.
I hope I answered more questions than you imagined, but I probably missed two or more, so please let me know.
Mark (way chattier than ever because of Ampyra)
Wow! I am overwhelmed at all the responses I am receiving. The compassion I sense in all your posts has been amazing. I have a wonderfully supportive group of friends, but none of them know what all this is like, so I am grateful for y'all.
Mark, when do you say the struggle is too great, and go to a wheelchair? Did you wait until walking was impossible? Did you use one when walking distances were involved? I do not know what to do.
I am going to talk to my doctor about Ampyra. I have tried Neurontin for nerve pain, but had a reaction when the dose was doubled. Has anyone else experienced that? Are there any other medications like Neurontin to try. If that dose is adjusted down maybe I can handle it. It really was helping.
Again, thank you for all the support. I am sure I will post often as I search for my new normal.
Most sincerely,
Bethany
Mark, when do you say the struggle is too great, and go to a wheelchair? Did you wait until walking was impossible? Did you use one when walking distances were involved? I do not know what to do.
I am going to talk to my doctor about Ampyra. I have tried Neurontin for nerve pain, but had a reaction when the dose was doubled. Has anyone else experienced that? Are there any other medications like Neurontin to try. If that dose is adjusted down maybe I can handle it. It really was helping.
Again, thank you for all the support. I am sure I will post often as I search for my new normal.
Most sincerely,
Bethany
Hi there. I'm also Dx with PPMS or SPMS, it took awhile for them to find the Dx and I understand how you feel... your not alone with this and I hope you can find someone that will be able to talk with you and help.
I take gabapentin for nerve pains in my legs and arms. In the past year I have had to purchase a Power Chair to use to go to the stores etc. But at home so far I can walk around and I use a cane for short distance. Like walking to the car and my husband helps with holding his arm.
for my fatigue I use Amantadine which helps at times, but if I tire myself out, I'm resting for a few days.
I find if I know something is planned for a few days holidays or something, I will rest up and take it easy so I can enjoy what is planned.
I don't know if I'm getting this down right, but your not alone hon... we are here to chat with and if you have any questions or just need to vent and need a pick up..
hang in there friend
wobbly
I take gabapentin for nerve pains in my legs and arms. In the past year I have had to purchase a Power Chair to use to go to the stores etc. But at home so far I can walk around and I use a cane for short distance. Like walking to the car and my husband helps with holding his arm.
for my fatigue I use Amantadine which helps at times, but if I tire myself out, I'm resting for a few days.
I find if I know something is planned for a few days holidays or something, I will rest up and take it easy so I can enjoy what is planned.
I don't know if I'm getting this down right, but your not alone hon... we are here to chat with and if you have any questions or just need to vent and need a pick up..
hang in there friend
wobbly
I have RRMS instead of PPMS so I can't comment on what it feels like to get that dx. I just wanted to say that I am so glad that you are here.
I see that you have already received great advice from Lulu & Alex. Shell is such a doll she got Mark on board to share from his experience since she couldn't.
That is why I am so glad that you are here and posted. This forum is filled with wonderful compassionate people and I can promise from experience that whatever the future holds you will always feel a bit better after visiting here.
Take care
Hugs,
Erin :)
Hi Maestro,
I'm the fellow who is benefitting greatly from Ampyra, Shelly contacted me, I was dx'd 10 1/2 years ago when I had just turned 51, never having any noticeable symptoms. My left foot hurt and cramped up in a very odd way, my GP sent me to a neuro at the end of January 2000.
I'll talk about Ampyra at the end of this message.
Receiving a PPMS Dx is terrible, it took years to accept it, years aided by anti-depressants. MS brought me despair far beyond its actual impacts, far beyond my worries. My very bright PAs believe this is tied to destruction of myelin, I agree.
When, not if, you are prescribed an anti-depressant, please do a lot of research before starting it. Some like Paxil and Effexor are very hard to stop using, that said I use Effexor XR 150 which I'm happy to take, assuming I'll never stop. Talk to your dr. about side effects, loss of libido is common along with weight gain. If they can't give you good arguments for their choice find a dr. who will.
My neuro has me down as RRMS but I think I'm PPMS or SPMS, it is hard to tell.
Like you, I was told the first event I noticed was not my first MS event, but this may have more to do with insurance paying for drugs than reality.
Like you I used to cycle long distances, now, because of Ampyra I think I'd try again using my long wheel base recumbent if I could get it somewhere flat, (it is too large to move w/o a van) my house is in hilly terrain, hard enough to push the LWB up hills when I was younger, at 61 very hard. I used to do 40 - 50 miles on a Sunday morning, I've backpacked throughout the Rockies, in the Sierra Nevada, backpacked down and up the North Rim of the Grand Canyon after spending a week repairing trails. I miss all this, but after years of dealing with the Dx, am happy and realize I can get back in the mountains via means other than my feet. I will say I briefly hiked with a man who had MS or worse, he used two Canadian forearm crutches and was headed into the back country along CA's Muir trail. He used enormous upper body strength and planned to be camping for almost two weeks. He remains an inspiration.
I just had my 38th Tysabri infusion, it has helped greatly, I have no change in lesions for over three years and no change in the rest of my abilities in the same time. I've been on Copaxone, Rebif, Novantrone, and now Tysabri.
I've been using a Sonic Pride Scooter for over 5 years, it fits easily in my 4 door sedan's trunk, and goes everywhere - the train to NYC, the plane to Seattle, San Francisco, the Caribbean. It keeps me in the world, I'm regularly approached by children and spouses of folks who have trouble walking and speak at length on the benefits of electric mobility.
If anything people everywhere give me more assistance than I want, I accept graciously. I think even NYC cabbies have slowed to let me cross the street.
At home I use an electric wheelchair, I received one from a local charity that didn't look hard for a recipient, a contractor I used was on the board, knew it was sitting in a store room for over a year. Before the electric I had a manual one, but since I do the cooking in my "universal access" kitchen, the tight turning radius of the electric, as well as brakes that keep it in one place is safer and easier on my backside - it doesn't move the way the manual did even when its brakes were full on.
I've been on Ampyra since late May, for me it is the best thing since chocolate croissants.
not only am I walking better, my memory is better, my spirits up despite far too much turmoil at home, I'm remembering lines of poetry I read before '66 and lines from songs I heard in the late 60s. I'm certain I could ride my recumbent, the center of balance is low, my legs more than adequate to keep me upright at stops. Since we are all adults, certain body parts work much better. Now if my wife could take it with similar effects, I'd be much happier man.
Please, please contact me back channel with any questions you have, I'm frequently online and will respond within a day. I am watching this thread, but sometimes notifications get lost for reasons I'll never know.
Please get your dr. to Rx Ampyra and be patient, it took close to two months for me to see noticeable improvements.
My very best wishes and hopes to you. As I would say to my fellow congregants tonight, may you be inscribed in the book of life for a good year", in Hebrew summed up as L' Shanah Tovah.
Mark
I'm the fellow who is benefitting greatly from Ampyra, Shelly contacted me, I was dx'd 10 1/2 years ago when I had just turned 51, never having any noticeable symptoms. My left foot hurt and cramped up in a very odd way, my GP sent me to a neuro at the end of January 2000.
I'll talk about Ampyra at the end of this message.
Receiving a PPMS Dx is terrible, it took years to accept it, years aided by anti-depressants. MS brought me despair far beyond its actual impacts, far beyond my worries. My very bright PAs believe this is tied to destruction of myelin, I agree.
When, not if, you are prescribed an anti-depressant, please do a lot of research before starting it. Some like Paxil and Effexor are very hard to stop using, that said I use Effexor XR 150 which I'm happy to take, assuming I'll never stop. Talk to your dr. about side effects, loss of libido is common along with weight gain. If they can't give you good arguments for their choice find a dr. who will.
My neuro has me down as RRMS but I think I'm PPMS or SPMS, it is hard to tell.
Like you, I was told the first event I noticed was not my first MS event, but this may have more to do with insurance paying for drugs than reality.
Like you I used to cycle long distances, now, because of Ampyra I think I'd try again using my long wheel base recumbent if I could get it somewhere flat, (it is too large to move w/o a van) my house is in hilly terrain, hard enough to push the LWB up hills when I was younger, at 61 very hard. I used to do 40 - 50 miles on a Sunday morning, I've backpacked throughout the Rockies, in the Sierra Nevada, backpacked down and up the North Rim of the Grand Canyon after spending a week repairing trails. I miss all this, but after years of dealing with the Dx, am happy and realize I can get back in the mountains via means other than my feet. I will say I briefly hiked with a man who had MS or worse, he used two Canadian forearm crutches and was headed into the back country along CA's Muir trail. He used enormous upper body strength and planned to be camping for almost two weeks. He remains an inspiration.
I just had my 38th Tysabri infusion, it has helped greatly, I have no change in lesions for over three years and no change in the rest of my abilities in the same time. I've been on Copaxone, Rebif, Novantrone, and now Tysabri.
I've been using a Sonic Pride Scooter for over 5 years, it fits easily in my 4 door sedan's trunk, and goes everywhere - the train to NYC, the plane to Seattle, San Francisco, the Caribbean. It keeps me in the world, I'm regularly approached by children and spouses of folks who have trouble walking and speak at length on the benefits of electric mobility.
If anything people everywhere give me more assistance than I want, I accept graciously. I think even NYC cabbies have slowed to let me cross the street.
At home I use an electric wheelchair, I received one from a local charity that didn't look hard for a recipient, a contractor I used was on the board, knew it was sitting in a store room for over a year. Before the electric I had a manual one, but since I do the cooking in my "universal access" kitchen, the tight turning radius of the electric, as well as brakes that keep it in one place is safer and easier on my backside - it doesn't move the way the manual did even when its brakes were full on.
I've been on Ampyra since late May, for me it is the best thing since chocolate croissants.
not only am I walking better, my memory is better, my spirits up despite far too much turmoil at home, I'm remembering lines of poetry I read before '66 and lines from songs I heard in the late 60s. I'm certain I could ride my recumbent, the center of balance is low, my legs more than adequate to keep me upright at stops. Since we are all adults, certain body parts work much better. Now if my wife could take it with similar effects, I'd be much happier man.
Please, please contact me back channel with any questions you have, I'm frequently online and will respond within a day. I am watching this thread, but sometimes notifications get lost for reasons I'll never know.
Please get your dr. to Rx Ampyra and be patient, it took close to two months for me to see noticeable improvements.
My very best wishes and hopes to you. As I would say to my fellow congregants tonight, may you be inscribed in the book of life for a good year", in Hebrew summed up as L' Shanah Tovah.
Mark
Maestro,
I wonder if the Amprya (I probably spelled that wrong) would help with your walking. I have no personal experience so I'll ask a forum member who is on it and I'm going to find him and ask him if he'll chime in.
No ledges for you!!!!
Hang in best you can,
-Shell
I wonder if the Amprya (I probably spelled that wrong) would help with your walking. I have no personal experience so I'll ask a forum member who is on it and I'm going to find him and ask him if he'll chime in.
No ledges for you!!!!
Hang in best you can,
-Shell
Being told you have PPMS is like going down hill with no breaks. I was very depressed after being told. The NMSS has a free book you can call for on PPMS.
I was told I have had MS my whole life. Just in the past year it is increasing. I am just getting to using crutches more.
I sold my bike recently because of falls. I started horseback riding with a nice lady who worked with a therapeutic riding program. I am also swimming.
I also found a therapist who specializes in chronic illness. We talk and she also is certified in hypnosis which I found I am really good at. I use it for some of the pain. It is simple relaxation and distraction help pain.
I am just starting Trileptal for nerve and muscle pain. It is a fine line for me because I need to drive so I can't take much for pain.
I was so depressed a year ago it was not funny. Now I have accepted things and am happier than I have been in my whole life which is really weird. I really live for today.
I went to the autozone and got flame decals for my crutches.
The pain and the tiredness which I notice towards afternoon are hard. My condition is not going to improve it is not like we have relapses and remissions. I figure my attitude is what I have in my control. If I can stay positive and enjoy what I can people like being around me. otherwise it gets lonely,
I have friends with ALS, who have spinal cord injuries, some who have cancer but they are all living for today. It is humbling.
Hang in there,
Alex
I was told I have had MS my whole life. Just in the past year it is increasing. I am just getting to using crutches more.
I sold my bike recently because of falls. I started horseback riding with a nice lady who worked with a therapeutic riding program. I am also swimming.
I also found a therapist who specializes in chronic illness. We talk and she also is certified in hypnosis which I found I am really good at. I use it for some of the pain. It is simple relaxation and distraction help pain.
I am just starting Trileptal for nerve and muscle pain. It is a fine line for me because I need to drive so I can't take much for pain.
I was so depressed a year ago it was not funny. Now I have accepted things and am happier than I have been in my whole life which is really weird. I really live for today.
I went to the autozone and got flame decals for my crutches.
The pain and the tiredness which I notice towards afternoon are hard. My condition is not going to improve it is not like we have relapses and remissions. I figure my attitude is what I have in my control. If I can stay positive and enjoy what I can people like being around me. otherwise it gets lonely,
I have friends with ALS, who have spinal cord injuries, some who have cancer but they are all living for today. It is humbling.
Hang in there,
Alex
The drugs you mention are good for the structural pains - muscles, bones, etc but won't touch nerve pain. Be sure to check on this with your doctor. Several people here can perhaps give some recommendations - neurontin, gabapentin, etc all fall in this class of drug
As for the exhaustion - it should come and go. True fatigue takes you down for the count, but it usuaully passes. Again, there is a drug for that - try talking to the doc about provigil or nuvigil. People here on those swear by the pick up it gives them.
You could also talk about Ampyra for your walking - it was just approved earlier this year and the people taking it swear by it. There is a compounded version 4AP (I think) that is much,much cheaper than the Ampyra.
Sorry I can't get all the details down here - got to keep moving for an out of town appt. Search this community for any of these drug names and you will find lots of info.
here's to better living through chemistry! LOL
be well, L
As for the exhaustion - it should come and go. True fatigue takes you down for the count, but it usuaully passes. Again, there is a drug for that - try talking to the doc about provigil or nuvigil. People here on those swear by the pick up it gives them.
You could also talk about Ampyra for your walking - it was just approved earlier this year and the people taking it swear by it. There is a compounded version 4AP (I think) that is much,much cheaper than the Ampyra.
Sorry I can't get all the details down here - got to keep moving for an out of town appt. Search this community for any of these drug names and you will find lots of info.
here's to better living through chemistry! LOL
be well, L
Thank you, Lulu for your kind words. I do have terrific friends who I can be very open with, and they talk straight with me. That sort of support is priceless. They try, but just can not understand the depth and severity of the pain and anguish this has brought.
I was extremely active before all of this. I was a long-distance cyclist, having just completed a 60 mile ride one month before. Now I can not even keep the damn bike upright because my balance is so poor. I have stayed in physical therapy because it is keeping my legs as strong as possible. We have also begun to work on upper body strength in the event a wheelchair becomes necessary. My PT is even using a unit that causes the muscles that are not working well to fire while I am walking to keep those muscles toned.
Does the exhaustion ever get better? I stay at home and rest hoping that will help, but it does not. I do not seem to get any of my zip back. At times all I can do is cry because I am so weary.
I was on oxycodone for a few months for the pain and constant headaches, and that gave me more relief than I realized, but the insurance company will no longer pay for it. I had to quit taking it. Nothing else has eased the pain like that. I am waiting now for authorization to use a Fentanyl patch. I am hoping it can help.
I am glad to have this site to seek information and share, too. Thank you.
I was extremely active before all of this. I was a long-distance cyclist, having just completed a 60 mile ride one month before. Now I can not even keep the damn bike upright because my balance is so poor. I have stayed in physical therapy because it is keeping my legs as strong as possible. We have also begun to work on upper body strength in the event a wheelchair becomes necessary. My PT is even using a unit that causes the muscles that are not working well to fire while I am walking to keep those muscles toned.
Does the exhaustion ever get better? I stay at home and rest hoping that will help, but it does not. I do not seem to get any of my zip back. At times all I can do is cry because I am so weary.
I was on oxycodone for a few months for the pain and constant headaches, and that gave me more relief than I realized, but the insurance company will no longer pay for it. I had to quit taking it. Nothing else has eased the pain like that. I am waiting now for authorization to use a Fentanyl patch. I am hoping it can help.
I am glad to have this site to seek information and share, too. Thank you.
Hi Maestro,
there are a few folks around here who would be happy to join you on the ledge so it would be better to come on down! :-)
I am from a long line of teachers and have worked in the public schools. I am so sorry to read that you were attacked by a student - it happens much too often. These incidents destroy the security of a classroom for everyone involved, including the other students.
Hopefully you had good representation through all the post-event meetings and discussions.
This MiSerable disease affects everyone so differently - I am sorry to hear you have been on a rapid downhill slide. The truth is we just don't know what tomorrow or Christmas are going to bring for us.
We have to stay in the here and now. It isn't that rare for people to have dramatic reversals of symptoms and we can certainly hope for that in your case. There was a member here who was in a wheelchair for 4 years (I think!) and one day woke up and could walk again. She celebrated by going to Italy. It can and does happen.
Do what you can to stay active. Exercise as much as your body can take to keep the muscles strong.
Talk to your doctors about the pain. Request a referral to a pain management doctor who is familiar with MS. The type of pain you have is not going to be fixed through ordinary pain killers- you need something to deal with nerve pain. A palliative care specialist would be the ideal person to help.
this is a great compassionate community - I hope you will turn to us here when you are struggling again. It is much easier to get on the ledge than to get off so be sure to stick around and not wait until you feel trapped.
be well,
Lulu
there are a few folks around here who would be happy to join you on the ledge so it would be better to come on down! :-)
I am from a long line of teachers and have worked in the public schools. I am so sorry to read that you were attacked by a student - it happens much too often. These incidents destroy the security of a classroom for everyone involved, including the other students.
Hopefully you had good representation through all the post-event meetings and discussions.
This MiSerable disease affects everyone so differently - I am sorry to hear you have been on a rapid downhill slide. The truth is we just don't know what tomorrow or Christmas are going to bring for us.
We have to stay in the here and now. It isn't that rare for people to have dramatic reversals of symptoms and we can certainly hope for that in your case. There was a member here who was in a wheelchair for 4 years (I think!) and one day woke up and could walk again. She celebrated by going to Italy. It can and does happen.
Do what you can to stay active. Exercise as much as your body can take to keep the muscles strong.
Talk to your doctors about the pain. Request a referral to a pain management doctor who is familiar with MS. The type of pain you have is not going to be fixed through ordinary pain killers- you need something to deal with nerve pain. A palliative care specialist would be the ideal person to help.
this is a great compassionate community - I hope you will turn to us here when you are struggling again. It is much easier to get on the ledge than to get off so be sure to stick around and not wait until you feel trapped.
be well,
Lulu
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