Aa
Newcomer overwhelmed by kindness...
I just joined the MS group today and have been truly overwhelmed at the kindness so many of you have already bestowed upon me. You've all shared so much of yourselves, I guess if I'm really going to get past this whole denial thing, I'm up... (apologies up front for what I'm sure will be at least a novella)
I'm 34 and have had strange auto-immune issues for well over 10 years that no one could ever pinpoint, such as many intermitent symptoms resembling lupus, including occasional bloodwork showing a positive ANA. But no, thats not it. Nor is it the laundry list of other auto-immune diseases that I'm sure most of you have been tested for as well.
My mom was diagnosed with MS in her early 20's and thankfully has had a relatively benign course. She had periodic relapses that she hid well from us kids, but is definitely no stranger to optic neuritis, numbness, chronic pain and fatigue, and lets not forget good ole' depression. She just celebrated her 60th birthday and is doing quite well.
Less than two years ago, I was convinced I just needed to have my prescription changed. When I kept having problems I was told it was optic neuritis and my opthamologist rushed me off to a neurologist. He was good in crisis, (although he scared the **** out of me!) but just awful once he realized your brain wasn't about to burst any second. I hadn't paid much attention to the sudden muscle weakness in my arm and hand and was simply used to being tired... I often work 80 hours a week and have never been short on airline miles. So I did the whole IV then oral steroids routine, and actually felt better within a month. Excellent, I can pretend this didn't really happen... and the denial begins.
All of the MRI's came back without lesions and the spinal tap showed no bands. The horror of the spinal tap gone wrong, followed by an even more horrific blood patch is a story for another day... Anyway, I was told I really didn't have to worry, it was most definitely not MS. That worked well until 6 months later when I had another bout of optic neuritis, of course joined by my friends fatigue, weakness and pain, however this time the always charming, fever, can't remember, can't seem to find the words, and can't get them out of my mouth came along for the ride. Go thru the steroid drill again but this time am not feeling better. Doctor tells me to be patient and is even willing to support a leave of absence on short term disability. Seven weeks later when I still wasnt feeling great, the neuro told me to toughen up and sent me back to work. I decided it was time to change docs.
A couple of months later at the recommendation of my gynecologist I've seen for 12 years, I went to see a neurologist at the MS clinic. I saw him when I was doing relatively well so we were able to establish a good rapport. He was able to get a sense of who I am and how highly I can function when just dealing with fatigue. But I pushed it. And after 6 insane months at work, my body gave out. I was at the airport and then I just couldn't move. Stood there with tears rolling down my face, frozen like a statue. Waited it out and was able to get on the shuttle bus to my car. By the time I got in my car my right arm was flaling, fingers spasming non-stop and I could barely see out of my right eye. I told myself its just 15 minutes... you can hang in there for a 15 minute drive. Then the flaling stopped. My right arm down thru my torso was paralyzed. I knew I was relapsing for weeks (optic neuritis, cognitive issues, pain in both forearms, heavy legs etc...) but needed to make this cross country trip. If I didn't go, I would have to tell people about this disease... that I didn't have.
Luckily the new doctor was nothing short of fantastic, validating what I was going thru, saying it looks like you might actually have MS even without lesions.. it happens sometimes. I did another round of steroids. He said you have to slow down. You can't keep going at this pace... it will only get worse. So, of course I proceeded to work from the transfusion room, with a laptop and two blackberries on my lap. I begged my company for help and got none, despite the continous and obvious tremors, sweats, complete blurring of vision in my right eye, and noticeable cognitive issues. I pushed on for another two months while the symptoms calmed down.
At my eight week follow up with my neurologist, he hadn't even closed the door yet before he said you are killing yourself. We did the disability papers right then. He wanted to do another round of steroids since I had never fully recovered from this last relapse but I wanted to try some rest first. He also said to start thinking about Copaxone, that I don't have to live like this. Go on DMD's... what??? I'm not sick!! The insurance company doesnt think I'm sick. The tests say there is nothing wrong with me. This is nuts.
Okay, so rest didn't do it. Did another round of steroids after I lost more permanent vision in my right eye due to another case of optic neuritis, the fatigue and pain didn't go away, and I got a UTI. That course of treatment ended a month ago. My saint of a boyfriend took me on vacation, and by the third day of walking around I couldnt turn my head left, lift my left arm more than six inches or sit up once I was laying down. Three days ago both arms were numb. Yesterday my left foot seized up out of nowhere and my toes painfully started to make their claw. Today I only have numbness in my left arm and hand.
I was able to get a consult (as a professional courtesy to my neuro) with the top MS doc in NY. If when I see him in two weeks, he also tells me this is MS and agrees that copaxone is the only way I will regain my quality of life, that's what I will do. I am INCREDIBLY fortunate to have doctors that listen and validate what I'm going thru, unlike so many of you continue to experience. I get both sad and incredibly angry as I read post after post about the horror so many of you are living, and can't understand how so many neurologists continue to think and practice the way they do... when there are so many of us.
Sadly, I'm sure the reason my experience is different is because of my medical benefits. My awful company has incredible benefits. My disability ends in 8 weeks. I can't go back, but how can I leave? The cost of Cobra for a PPO with virtually no exclusions will be outrageous. But clearly I can't lapse... I'll never get coverage again and I'm about to take on a lifelong drug at the pricetag of $25K a year. Haven't figured this one out yet from an insurance perspective, but I am NOT going back.
So, that's me Robyn and my story. I planned on being a lurker in your community, still trying to hide from it all. I never expected for so many people, each with a story like mine (but most far worse), to reach out to me individually. You are an amazing, strong, incredibly kind group of people and I feel very fortunate to have found you! Thanks in advance for the answers to the many questions I'm sure I'll ask along the way, and reading all of this! I hope I didn't cause any new cases of optic neuritis!!
My sincerest best wishes to all...
Robyn
I'm 34 and have had strange auto-immune issues for well over 10 years that no one could ever pinpoint, such as many intermitent symptoms resembling lupus, including occasional bloodwork showing a positive ANA. But no, thats not it. Nor is it the laundry list of other auto-immune diseases that I'm sure most of you have been tested for as well.
My mom was diagnosed with MS in her early 20's and thankfully has had a relatively benign course. She had periodic relapses that she hid well from us kids, but is definitely no stranger to optic neuritis, numbness, chronic pain and fatigue, and lets not forget good ole' depression. She just celebrated her 60th birthday and is doing quite well.
Less than two years ago, I was convinced I just needed to have my prescription changed. When I kept having problems I was told it was optic neuritis and my opthamologist rushed me off to a neurologist. He was good in crisis, (although he scared the **** out of me!) but just awful once he realized your brain wasn't about to burst any second. I hadn't paid much attention to the sudden muscle weakness in my arm and hand and was simply used to being tired... I often work 80 hours a week and have never been short on airline miles. So I did the whole IV then oral steroids routine, and actually felt better within a month. Excellent, I can pretend this didn't really happen... and the denial begins.
All of the MRI's came back without lesions and the spinal tap showed no bands. The horror of the spinal tap gone wrong, followed by an even more horrific blood patch is a story for another day... Anyway, I was told I really didn't have to worry, it was most definitely not MS. That worked well until 6 months later when I had another bout of optic neuritis, of course joined by my friends fatigue, weakness and pain, however this time the always charming, fever, can't remember, can't seem to find the words, and can't get them out of my mouth came along for the ride. Go thru the steroid drill again but this time am not feeling better. Doctor tells me to be patient and is even willing to support a leave of absence on short term disability. Seven weeks later when I still wasnt feeling great, the neuro told me to toughen up and sent me back to work. I decided it was time to change docs.
A couple of months later at the recommendation of my gynecologist I've seen for 12 years, I went to see a neurologist at the MS clinic. I saw him when I was doing relatively well so we were able to establish a good rapport. He was able to get a sense of who I am and how highly I can function when just dealing with fatigue. But I pushed it. And after 6 insane months at work, my body gave out. I was at the airport and then I just couldn't move. Stood there with tears rolling down my face, frozen like a statue. Waited it out and was able to get on the shuttle bus to my car. By the time I got in my car my right arm was flaling, fingers spasming non-stop and I could barely see out of my right eye. I told myself its just 15 minutes... you can hang in there for a 15 minute drive. Then the flaling stopped. My right arm down thru my torso was paralyzed. I knew I was relapsing for weeks (optic neuritis, cognitive issues, pain in both forearms, heavy legs etc...) but needed to make this cross country trip. If I didn't go, I would have to tell people about this disease... that I didn't have.
Luckily the new doctor was nothing short of fantastic, validating what I was going thru, saying it looks like you might actually have MS even without lesions.. it happens sometimes. I did another round of steroids. He said you have to slow down. You can't keep going at this pace... it will only get worse. So, of course I proceeded to work from the transfusion room, with a laptop and two blackberries on my lap. I begged my company for help and got none, despite the continous and obvious tremors, sweats, complete blurring of vision in my right eye, and noticeable cognitive issues. I pushed on for another two months while the symptoms calmed down.
At my eight week follow up with my neurologist, he hadn't even closed the door yet before he said you are killing yourself. We did the disability papers right then. He wanted to do another round of steroids since I had never fully recovered from this last relapse but I wanted to try some rest first. He also said to start thinking about Copaxone, that I don't have to live like this. Go on DMD's... what??? I'm not sick!! The insurance company doesnt think I'm sick. The tests say there is nothing wrong with me. This is nuts.
Okay, so rest didn't do it. Did another round of steroids after I lost more permanent vision in my right eye due to another case of optic neuritis, the fatigue and pain didn't go away, and I got a UTI. That course of treatment ended a month ago. My saint of a boyfriend took me on vacation, and by the third day of walking around I couldnt turn my head left, lift my left arm more than six inches or sit up once I was laying down. Three days ago both arms were numb. Yesterday my left foot seized up out of nowhere and my toes painfully started to make their claw. Today I only have numbness in my left arm and hand.
I was able to get a consult (as a professional courtesy to my neuro) with the top MS doc in NY. If when I see him in two weeks, he also tells me this is MS and agrees that copaxone is the only way I will regain my quality of life, that's what I will do. I am INCREDIBLY fortunate to have doctors that listen and validate what I'm going thru, unlike so many of you continue to experience. I get both sad and incredibly angry as I read post after post about the horror so many of you are living, and can't understand how so many neurologists continue to think and practice the way they do... when there are so many of us.
Sadly, I'm sure the reason my experience is different is because of my medical benefits. My awful company has incredible benefits. My disability ends in 8 weeks. I can't go back, but how can I leave? The cost of Cobra for a PPO with virtually no exclusions will be outrageous. But clearly I can't lapse... I'll never get coverage again and I'm about to take on a lifelong drug at the pricetag of $25K a year. Haven't figured this one out yet from an insurance perspective, but I am NOT going back.
So, that's me Robyn and my story. I planned on being a lurker in your community, still trying to hide from it all. I never expected for so many people, each with a story like mine (but most far worse), to reach out to me individually. You are an amazing, strong, incredibly kind group of people and I feel very fortunate to have found you! Thanks in advance for the answers to the many questions I'm sure I'll ask along the way, and reading all of this! I hope I didn't cause any new cases of optic neuritis!!
My sincerest best wishes to all...
Robyn
Welcome to the best support a person can get while dealing with MS. I am Mike, I am limbo-lander. I seem to have all of the symptoms, however no lesions or bands. I do suffer from double vision. I am fighting through that currently. The usual numbness in my feet, legs, hands and arms are also problems. I am taking neurotin, lyrica, and effexor. I live in a suburb of Atlanta. I too get treated at the MS clinic. They are quite good there. I hope things go well for you in NY. Nice to meet you, Good Luck. Please keep us posted on your prgress.
God Bless you,
Mike
God Bless you,
Mike
Hey Robyn,
Nice to meet you! WOW Guuurrrl !
I truly didn't think anyone would compare to my true stubborness. Please, I mean no offense, but it's your blatent denial and disregard in order to get your work done that's got my ears perked up! Somebody has to do it right? Besides, you LOVE the fast lane don't you. Mee tooo!
I just don't know what to say, that is why I'm joking. I want to re-read your story here, to get to know you a bit better. Just poppin in quickly now to say hello and to introduce myself.
I am SL and I was dx'd w/MS last year. It's hard because if you are anything like me, you are not afraid of MS, you probably didn't break down, you more than likely figured "they" didn't know what the heck they were talking about, until the problems stopped you in your tracks.
This is a wonderful place. We are all very connected in a way that is nothing short of a miracle, a true blessing was put on our forum. We are a variety most times of of soft shoulders, expert advice, compassionate ears, and solid support.
I'm glad you've joined. I look forward to reading your story and getting to know you and giving you some time to get to know us too.
Thank you for coming our way,
hope to talk to you soon,
SL
p.s. you going to Mt. Sinai?
Nice to meet you! WOW Guuurrrl !
I truly didn't think anyone would compare to my true stubborness. Please, I mean no offense, but it's your blatent denial and disregard in order to get your work done that's got my ears perked up! Somebody has to do it right? Besides, you LOVE the fast lane don't you. Mee tooo!
I just don't know what to say, that is why I'm joking. I want to re-read your story here, to get to know you a bit better. Just poppin in quickly now to say hello and to introduce myself.
I am SL and I was dx'd w/MS last year. It's hard because if you are anything like me, you are not afraid of MS, you probably didn't break down, you more than likely figured "they" didn't know what the heck they were talking about, until the problems stopped you in your tracks.
This is a wonderful place. We are all very connected in a way that is nothing short of a miracle, a true blessing was put on our forum. We are a variety most times of of soft shoulders, expert advice, compassionate ears, and solid support.
I'm glad you've joined. I look forward to reading your story and getting to know you and giving you some time to get to know us too.
Thank you for coming our way,
hope to talk to you soon,
SL
p.s. you going to Mt. Sinai?
Just a quickie here, when KITTEN had her immediate post-injection reaction several months ago, she had never heard of it and her doctors had not told her about it, so she literally thought she would die. When I went looking for the mention of it on Copaxone's website, I found it "four pages deep" after the home page. I knew what I was looking for and still had difficulty finding any cursory mention of it. I thought that is was very misleading by the company. About 1 in 7 will have it and many of them have it more than once.
None of the DMDs really work to improve your current day-to-day conditon as ess said, but many may feel better (placebo - which is fine) because they are taking affirmative actions against the disease.
Q
None of the DMDs really work to improve your current day-to-day conditon as ess said, but many may feel better (placebo - which is fine) because they are taking affirmative actions against the disease.
Q
Hi again. You've asked for more info about Copaxone, so here goes. But first a disclaimer---I was on it for 2 months but had to stop because of unbearable injection site reactions which developed over time. Hives, welts, lumps, rashes, scabs and incredible, incredible itching. My doctor stopped it since it was seriously affecting my quality of life.
If you read the Copaxone web site, they mention injection reactions as a possibility, but from what I now know they downplay that aspect way too much. A number of folks here are on Copaxone, and almost all get some variation of what I had, only to a considerably lesser extent. It's just a very individual thing.
I'm fairly sure that the first side effect the web site mentions is a sort of panic/heart attack feeling. I guess that's pretty serious to experience, but no one here at all has had that. So all things with a grain of salt. Most people find the Copaxone side effects reasonalby tolerable, and I'm one of two who just couldn't deal with them.
Nevertheless, Copaxone will NOT immediately or dramatically improve your daily functioning. Not even their web site claims that. So I don't know who told you that, but it just isn't true. None of the DMDs will do that. I wish! For any current or future symtoms that become intolerable, all of us have to get additional prescription meds, whether for pain, spasticity, fatigue or whatever. The hope of all the DMDs is that the future course of the disease will be less intense, with fewer lesions and thus fewer symptoms. This has been scientifically demonstrated to be valid, but it's based on statistical averages. No one can predict with any assurance what will happen in individual cases.
The DMDs, however, do nothing for what's here now. That's not to downgrade their enormous importance, but it's just being real.
Good luck with your upcoming tests! And keep us informed. BTW, congrats on your new guy!
ess
If you read the Copaxone web site, they mention injection reactions as a possibility, but from what I now know they downplay that aspect way too much. A number of folks here are on Copaxone, and almost all get some variation of what I had, only to a considerably lesser extent. It's just a very individual thing.
I'm fairly sure that the first side effect the web site mentions is a sort of panic/heart attack feeling. I guess that's pretty serious to experience, but no one here at all has had that. So all things with a grain of salt. Most people find the Copaxone side effects reasonalby tolerable, and I'm one of two who just couldn't deal with them.
Nevertheless, Copaxone will NOT immediately or dramatically improve your daily functioning. Not even their web site claims that. So I don't know who told you that, but it just isn't true. None of the DMDs will do that. I wish! For any current or future symtoms that become intolerable, all of us have to get additional prescription meds, whether for pain, spasticity, fatigue or whatever. The hope of all the DMDs is that the future course of the disease will be less intense, with fewer lesions and thus fewer symptoms. This has been scientifically demonstrated to be valid, but it's based on statistical averages. No one can predict with any assurance what will happen in individual cases.
The DMDs, however, do nothing for what's here now. That's not to downgrade their enormous importance, but it's just being real.
Good luck with your upcoming tests! And keep us informed. BTW, congrats on your new guy!
ess
Wow... I am amazed by all of the warm, compassionate, welcomes so many of you continue to send my way. I don't know that thank you quite covers it, but I'll throw it out there again anyway :-)
Quix... I went and read your story and was so deeply saddened. Not about the illness per se (thats a prevailing sadness that remains for all of us) but that a doctor, a man, a fellow human being, could do so much harm to someone that came to him for help. The fact that there wasnt even any respect as one physician to another is astounding. When I think about the medication you could have been on two years earlier, and the un-necessary ADDITIONAL emotional pain and damage he inflicted upon you, I simply think its criminal... let alone against his hippocratic oath. I have found the MS Society to be very helpful in terms of information and resources... they referred me to a great employment attorney who then refused to take my money. At the very least, they should know what this 'man' did to you, and I'm sure many others, and remove him from their list of referrals. Perhaps thru them and their advocacy, some kind of review/investigation (under the possibility of malpractice) could be done on his charts to assure there aren't other people out there suffering the way you did. Just a thought... Anyway, I'm going to thank you in advance for all the free medical advice Dr. Quix. You'll always be a doctor and should be afforded the respect you earned and deserve... What you do here is amazing and after just a few days I can see how many lives you've already touched and made better. Karma works in strange ways, but all I know is you should have a whole lot of good stuff coming your way!
Ms. Ess and Heather... Can you please tell me a little more about your experience with Copaxone? I was actually told it would improve the quality of my day to day life dramatically... How did you react when you first started taking it? Where do you inject yourself? How painful is it? Side effects? I'm sorry you're going thru a rough time right now Heather, and I hope you recover quickly from this last episode. I'm glad you enjoy my stream of consciousness typing :-) I actually find it quite cathartic...
Aura... I couldn't agree with you more. The universe definitely has a way of telling you when you've gotten off course, which i definitely had. I've never been closer with my family and shockingly met a fantastic man in the midst of all of this who has been incredibly supportive. I'm actually headed to Chicago in a few weeks for the summer for a 'trial' run... but we're both pretty sure we want to make a life together. He was actually the one that suggested we go to the top doc in NY while we're there to see my family next week... and will be with me every step of the way. I truly do believe everything happens for a reason, although sometimes its pretty damn hard to see!!! I hope both you and your brother are feeling well and that you get answers quickly. Did they test you for RA?
As for you Granny, you just rock :-) You have a beautiful family, and a gorgeous spirit. I was surprised how nonchalantly you mentioned that you need a wheelchair when you relapse... like its nothing. Talk about putting things in perspective... thank you. And please don't hesitate to give me a swift kick in the butt if I whine... I'll appreciate being grounded again afterwards. I hope they find the right cocktail to make your pain more tolerable. Speaking of, sometimes I swear a glass of white wine works better than any pill when my muscles tighten up. Not even kidding...
Kathy, I just read your journal entry. To say you are not a quitter is just a mild understatement :-) I can relate to some of your story, as some of it felt quite familiar. I too battled my weight, for most of my life actually. I don't know that the scars from being teased as a kid, or the insecurities and pain from all the dating heartbreak ever truly go away. I know I still fight it every day, even after losing 70lbs from my heaviest to now.. and I'm barely 5'2! I hated that what I did professionally contributes nothing to society so I got involved with a group called Team in Training... a fundraising arm of the Leukemia & Lymphona Society. Next thing I knew, this reformed chubster was racing triathlons to raise money for cancer! I had gotten all the way up to half-ironman distance before all this stuff started getting in the way. I'm hoping maybe by next spring I'll be well enough to participate in an Olympic distance race... but this time I'll do it for all of us and raise money to find a cure for MS. You are no different...you lost 100 pounds!!! You climbed all those mountains! And nothing, will ever dimininsh those amazing accomplishments. I hope you never lose the taste of that glacier water, and that the smell that brings you back to that very happy and healthy time, overpowers all of the rubbing alcohol and doctors offices. I have no doubt you have many more stories, travel adventures and amazing feats of physical defiance to share with us, and I look forward to hearing them all. I would love to see pictures of your jewelry... and I may have something that might help a little with all of the knee problems, at least in terms of fluffy. I know that sounds silly, but let me know what kind of litter box you use...
My goodness, once I start writing I just can't stop!! My sincerest thanks again to ALL of you...
Robyn
Quix... I went and read your story and was so deeply saddened. Not about the illness per se (thats a prevailing sadness that remains for all of us) but that a doctor, a man, a fellow human being, could do so much harm to someone that came to him for help. The fact that there wasnt even any respect as one physician to another is astounding. When I think about the medication you could have been on two years earlier, and the un-necessary ADDITIONAL emotional pain and damage he inflicted upon you, I simply think its criminal... let alone against his hippocratic oath. I have found the MS Society to be very helpful in terms of information and resources... they referred me to a great employment attorney who then refused to take my money. At the very least, they should know what this 'man' did to you, and I'm sure many others, and remove him from their list of referrals. Perhaps thru them and their advocacy, some kind of review/investigation (under the possibility of malpractice) could be done on his charts to assure there aren't other people out there suffering the way you did. Just a thought... Anyway, I'm going to thank you in advance for all the free medical advice Dr. Quix. You'll always be a doctor and should be afforded the respect you earned and deserve... What you do here is amazing and after just a few days I can see how many lives you've already touched and made better. Karma works in strange ways, but all I know is you should have a whole lot of good stuff coming your way!
Ms. Ess and Heather... Can you please tell me a little more about your experience with Copaxone? I was actually told it would improve the quality of my day to day life dramatically... How did you react when you first started taking it? Where do you inject yourself? How painful is it? Side effects? I'm sorry you're going thru a rough time right now Heather, and I hope you recover quickly from this last episode. I'm glad you enjoy my stream of consciousness typing :-) I actually find it quite cathartic...
Aura... I couldn't agree with you more. The universe definitely has a way of telling you when you've gotten off course, which i definitely had. I've never been closer with my family and shockingly met a fantastic man in the midst of all of this who has been incredibly supportive. I'm actually headed to Chicago in a few weeks for the summer for a 'trial' run... but we're both pretty sure we want to make a life together. He was actually the one that suggested we go to the top doc in NY while we're there to see my family next week... and will be with me every step of the way. I truly do believe everything happens for a reason, although sometimes its pretty damn hard to see!!! I hope both you and your brother are feeling well and that you get answers quickly. Did they test you for RA?
As for you Granny, you just rock :-) You have a beautiful family, and a gorgeous spirit. I was surprised how nonchalantly you mentioned that you need a wheelchair when you relapse... like its nothing. Talk about putting things in perspective... thank you. And please don't hesitate to give me a swift kick in the butt if I whine... I'll appreciate being grounded again afterwards. I hope they find the right cocktail to make your pain more tolerable. Speaking of, sometimes I swear a glass of white wine works better than any pill when my muscles tighten up. Not even kidding...
Kathy, I just read your journal entry. To say you are not a quitter is just a mild understatement :-) I can relate to some of your story, as some of it felt quite familiar. I too battled my weight, for most of my life actually. I don't know that the scars from being teased as a kid, or the insecurities and pain from all the dating heartbreak ever truly go away. I know I still fight it every day, even after losing 70lbs from my heaviest to now.. and I'm barely 5'2! I hated that what I did professionally contributes nothing to society so I got involved with a group called Team in Training... a fundraising arm of the Leukemia & Lymphona Society. Next thing I knew, this reformed chubster was racing triathlons to raise money for cancer! I had gotten all the way up to half-ironman distance before all this stuff started getting in the way. I'm hoping maybe by next spring I'll be well enough to participate in an Olympic distance race... but this time I'll do it for all of us and raise money to find a cure for MS. You are no different...you lost 100 pounds!!! You climbed all those mountains! And nothing, will ever dimininsh those amazing accomplishments. I hope you never lose the taste of that glacier water, and that the smell that brings you back to that very happy and healthy time, overpowers all of the rubbing alcohol and doctors offices. I have no doubt you have many more stories, travel adventures and amazing feats of physical defiance to share with us, and I look forward to hearing them all. I would love to see pictures of your jewelry... and I may have something that might help a little with all of the knee problems, at least in terms of fluffy. I know that sounds silly, but let me know what kind of litter box you use...
My goodness, once I start writing I just can't stop!! My sincerest thanks again to ALL of you...
Robyn
Hello, I had to add my welcome to the rest after reading your excellent post.
You do indeed write very well and since I'm an avid reader, I'm looking forward to your future posts.
It really is heartening to read about someone with good doctors that don't need to follow some rigid textbook definition in order to believe MS may be what's happening to you. Actually, your exacerbations spoke loudly and clearly, and I'm glad you found doctors that listened and cared.
Speaking of caring, I'm happy to be a part of this forum and very pleased that you joined us. I'm looking forward to hearing how your visit with the NY MS Specialist goes.
Kathy
You do indeed write very well and since I'm an avid reader, I'm looking forward to your future posts.
It really is heartening to read about someone with good doctors that don't need to follow some rigid textbook definition in order to believe MS may be what's happening to you. Actually, your exacerbations spoke loudly and clearly, and I'm glad you found doctors that listened and cared.
Speaking of caring, I'm happy to be a part of this forum and very pleased that you joined us. I'm looking forward to hearing how your visit with the NY MS Specialist goes.
Kathy
Hi Robyn,
Welcome to our family. We are proud that you chose us to be part of your life. MS is so hard for all of us to accept. I think the majority of us went through some sort of denial at one point or other. Although for myself I was actually relieved to have a diagnosis. It took 3 years to finally get one, plus a number of doctors. I'm actually doing very well right now but I have definitely had my ups and downs. Each relapse seems to get a little bit worse each time. I've got to where I can tell when one is about to happen, so I kinda prepare myself and my family for it. It's hard having any type of disease but MS is in a class of it's own. It effects people in so many different ways. For me the pain is the worst thing. I can take having to resort to a wheelchair every time I have a relapse. It always seems to take my mobility away. In fact a year ago I spent 7 months in the wheelchair. I had to go through a lot of PT to get back on my feet but here I am up and at em. The pain stays all the time. My medication is controlling it pretty good but I still have some bad days.
Robyn, you hang in there and remember we are here for you. You will find that this is not your regular run of the mill forum. This place is special and it's the people that make it that way. We all have a lot of love to give and I'm sure you will fit in very well with us.
I'll be praying,
Carol
Welcome to our family. We are proud that you chose us to be part of your life. MS is so hard for all of us to accept. I think the majority of us went through some sort of denial at one point or other. Although for myself I was actually relieved to have a diagnosis. It took 3 years to finally get one, plus a number of doctors. I'm actually doing very well right now but I have definitely had my ups and downs. Each relapse seems to get a little bit worse each time. I've got to where I can tell when one is about to happen, so I kinda prepare myself and my family for it. It's hard having any type of disease but MS is in a class of it's own. It effects people in so many different ways. For me the pain is the worst thing. I can take having to resort to a wheelchair every time I have a relapse. It always seems to take my mobility away. In fact a year ago I spent 7 months in the wheelchair. I had to go through a lot of PT to get back on my feet but here I am up and at em. The pain stays all the time. My medication is controlling it pretty good but I still have some bad days.
Robyn, you hang in there and remember we are here for you. You will find that this is not your regular run of the mill forum. This place is special and it's the people that make it that way. We all have a lot of love to give and I'm sure you will fit in very well with us.
I'll be praying,
Carol
Welcome, Welcome, Welcome!!!
Thank you so very much for sharing you story.
You are very fortunate to be able to go to such a high qualifying MS specialist.
I will pray that you get the answers you need. I feel that often times things happen in life to make us wake up. Everything has a purpose. Perhaps whatever it is that has taken its toll on you, is trying to tell you to slow down and look at the big pictures.
I am in limbo-land as well, and all my symptoms started in February of this year. Prior I had some arthritis issues that I am know finding out could be apart of what is going on with me right now. My Younger brother has MS so like you I have been able to have some insight on the disease.
Through it all I have sat back and realized that all that really matters is that I have my family and friends that surround me and I will survive this, push on for answers, and over come the denial of what it is that I could very well have.
We are all in the same boat searching for answers and taking it one day at a time.
Glad you are here,
Aura
Thank you so very much for sharing you story.
You are very fortunate to be able to go to such a high qualifying MS specialist.
I will pray that you get the answers you need. I feel that often times things happen in life to make us wake up. Everything has a purpose. Perhaps whatever it is that has taken its toll on you, is trying to tell you to slow down and look at the big pictures.
I am in limbo-land as well, and all my symptoms started in February of this year. Prior I had some arthritis issues that I am know finding out could be apart of what is going on with me right now. My Younger brother has MS so like you I have been able to have some insight on the disease.
Through it all I have sat back and realized that all that really matters is that I have my family and friends that surround me and I will survive this, push on for answers, and over come the denial of what it is that I could very well have.
We are all in the same boat searching for answers and taking it one day at a time.
Glad you are here,
Aura
Welcome! You say that YOU are lucky to have found this group...my dear lady, THIS GROUP is lucky to have you aboard.
I thoroughly enjoyed readying your story. You write so well, it was so easy to understand all the trauma you go through. I am sorry that you have had such a time with O.N. Your sight means everything.
I am currently taking Copaxone. I just started in January. I had alot of personal issues going on in my life and started into a relapse about 5 weeks ago. It is now ending. I credit the Copaxone with making this a shorter than usual relapse for me. The symptoms were the same, mildly severe (if that's possible) but the relapse is ending more quickly with the Copaxone, than without.
Again Robyn, thank you for sharing your story and so eloquently, also. It was easy reading and humorous (although sad) at the same time. You have a fantastic way of expressing yourself. WE are indeed lucky to have YOU as a new member.
Hope you will not "lurk" and join in on the discussions. You have much to offer.
Best Wishes,
Heather
I thoroughly enjoyed readying your story. You write so well, it was so easy to understand all the trauma you go through. I am sorry that you have had such a time with O.N. Your sight means everything.
I am currently taking Copaxone. I just started in January. I had alot of personal issues going on in my life and started into a relapse about 5 weeks ago. It is now ending. I credit the Copaxone with making this a shorter than usual relapse for me. The symptoms were the same, mildly severe (if that's possible) but the relapse is ending more quickly with the Copaxone, than without.
Again Robyn, thank you for sharing your story and so eloquently, also. It was easy reading and humorous (although sad) at the same time. You have a fantastic way of expressing yourself. WE are indeed lucky to have YOU as a new member.
Hope you will not "lurk" and join in on the discussions. You have much to offer.
Best Wishes,
Heather
Hey Robyn, welcome. You're right, your case is more dramatic than most, but still lots of our members can relate. I just urge you to do what has to be done, and ultimately things will work out. You may need to on Social Security disability, in fact. Not what you want to hear, I know, yet you can't just keep going and 'running on empty.' Life has a way of not letting us do that.
I have a sister who's been burning both ends of the candle, plus the middle, for years and years and it's catching up with her big time now. Not MS, thank God, but serious stuff. I use the Big Sister privilege (which she never listens to anyway) to tell her she just has to pare down and pioritize, and she says 'But I LIKE doing blah blah and yada yada yada.' Lord, if it were that simple. I like doing lots of stuff that in the real world is not gonna happen much again, if at all. Getting to the point of accepting that is the toughest challenge of all.
Just a word about Copaxone. I hope it's effective for you, and it has been for many others. But it's a long-haul thing, really long-haul. It won't take away your symptoms or give you bursts of energy or make you feel like a new woman. It CAN slow the progression of new disease, and that makes it worthwhile from the get-go. But I just don't want you expecting miracles and then getting another slap in the face from that reality.
You are clearly a big producer with lots of ideas and energy when you're feeling healthy. I'm sure you also read a lot and have huge curiosity about what seems to be happening to your body. Even though you don't have a diagnosis, it seems they've ruled out virutally everything else but MS. So I urge you to read our Health Pages here from cover to cover, as it were. Ask any questions you'd like. We're glad you've decided not to lurk!
The members here are not only incredibly kind, but are also loaded with practical knowledge and experience. Some are very well-versed on what employers can and cannot do to you legally because of illness or disability. So I urge you to keep on participating. We'll do our best for you, and I know you have lots to share with us too.
ess
I have a sister who's been burning both ends of the candle, plus the middle, for years and years and it's catching up with her big time now. Not MS, thank God, but serious stuff. I use the Big Sister privilege (which she never listens to anyway) to tell her she just has to pare down and pioritize, and she says 'But I LIKE doing blah blah and yada yada yada.' Lord, if it were that simple. I like doing lots of stuff that in the real world is not gonna happen much again, if at all. Getting to the point of accepting that is the toughest challenge of all.
Just a word about Copaxone. I hope it's effective for you, and it has been for many others. But it's a long-haul thing, really long-haul. It won't take away your symptoms or give you bursts of energy or make you feel like a new woman. It CAN slow the progression of new disease, and that makes it worthwhile from the get-go. But I just don't want you expecting miracles and then getting another slap in the face from that reality.
You are clearly a big producer with lots of ideas and energy when you're feeling healthy. I'm sure you also read a lot and have huge curiosity about what seems to be happening to your body. Even though you don't have a diagnosis, it seems they've ruled out virutally everything else but MS. So I urge you to read our Health Pages here from cover to cover, as it were. Ask any questions you'd like. We're glad you've decided not to lurk!
The members here are not only incredibly kind, but are also loaded with practical knowledge and experience. Some are very well-versed on what employers can and cannot do to you legally because of illness or disability. So I urge you to keep on participating. We'll do our best for you, and I know you have lots to share with us too.
ess
You took a big step! The denial is hard. One of our own, slowe, was also a master of denial. She'll be by in the morning. Wow, what a story! Your attacks have really stood up and slapped you in the face, haven't they? As far as the novella, we have never been a group for the short answer, or the short story. No story worth telling, really, is short. I have to say that becasue I am the master of the epic discourse!
There's no way of describing the rollercoaster of of emotions you're already on, magnified that even before you're willing to talk about this disease that you don't have, you're applying for disability. Frankly, I believe the doctor is right. If the company is a soul-sucker, then you would not go gracefully into their arms asking for acommodations. From the sound of the severe attacks you have experienced, you were headed for disability very soon anyway.
Essdipity, one of our members, has observed that people handle this diagnosis in much the same way as they have handled other difficult news. We certainly are here to help you in anyway we can. A shoulder to bury your face in, a bowl of ice cream (usually from me) because that solves a lot of things, facts to feed your mind and fight against the monster, or just some chit chat while your brain is ignoring the facts. It's all okay.
Uhhh....we've been documenting that MS can occur without "visible lesions" for the last year. You aren't the only one here. I had "a" lesion, a stupid, little, lonesome, mislocated thing at my diagnosis. Others have had diagnosed MS and many years before the lesions appeared. The NMSS says 1 in 20 will have no lesions. The doctors that say otherwise are rigid-minded and not very observant of how the body works.
If you haven't made it to the "Health Pages" (upper right hand corner) there is an article there on the different ways you can actually have MS with a negative MRI. There are other topics you might find interesting. Here is a direct address to the article:
http://www.medhelp.org/health_pages/Multiple+Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
We don't have actual links available on the forums so it is a copy and paste deal.
Holiday weekends are often slow, but several of us will be here from time to time. I am Quix, a physician in my former life, now downed with MS and Autoimmune Vertigo. I hang around to help make sense of a weirdly nonsensical disease. I hope you find a nice place with us!
Quix
There's no way of describing the rollercoaster of of emotions you're already on, magnified that even before you're willing to talk about this disease that you don't have, you're applying for disability. Frankly, I believe the doctor is right. If the company is a soul-sucker, then you would not go gracefully into their arms asking for acommodations. From the sound of the severe attacks you have experienced, you were headed for disability very soon anyway.
Essdipity, one of our members, has observed that people handle this diagnosis in much the same way as they have handled other difficult news. We certainly are here to help you in anyway we can. A shoulder to bury your face in, a bowl of ice cream (usually from me) because that solves a lot of things, facts to feed your mind and fight against the monster, or just some chit chat while your brain is ignoring the facts. It's all okay.
Uhhh....we've been documenting that MS can occur without "visible lesions" for the last year. You aren't the only one here. I had "a" lesion, a stupid, little, lonesome, mislocated thing at my diagnosis. Others have had diagnosed MS and many years before the lesions appeared. The NMSS says 1 in 20 will have no lesions. The doctors that say otherwise are rigid-minded and not very observant of how the body works.
If you haven't made it to the "Health Pages" (upper right hand corner) there is an article there on the different ways you can actually have MS with a negative MRI. There are other topics you might find interesting. Here is a direct address to the article:
http://www.medhelp.org/health_pages/Multiple+Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
We don't have actual links available on the forums so it is a copy and paste deal.
Holiday weekends are often slow, but several of us will be here from time to time. I am Quix, a physician in my former life, now downed with MS and Autoimmune Vertigo. I hang around to help make sense of a weirdly nonsensical disease. I hope you find a nice place with us!
Quix
OK so you know you're a workaholic when you need not one but TWO blackberries, not to mention using them in the transfusion room!
Thanks for sharing your story. It sounds like you're in excellent hands, medically. It is fantastic that you are being seen by that MS doc in NY; I sincerely hope he can give you some answers so that you can move on with whatever you need to do. So sorry about the work stuff, not sure I understand the insurance impplications and would be interested in hearing more on this.
It is late and I'm heading off to bed but I just wanted to say hi and that I'll write more later. Look forward to hearing more of your story in the days to come.
db
Thanks for sharing your story. It sounds like you're in excellent hands, medically. It is fantastic that you are being seen by that MS doc in NY; I sincerely hope he can give you some answers so that you can move on with whatever you need to do. So sorry about the work stuff, not sure I understand the insurance impplications and would be interested in hearing more on this.
It is late and I'm heading off to bed but I just wanted to say hi and that I'll write more later. Look forward to hearing more of your story in the days to come.
db
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