Aa
DXD QUICKLY - DMDS QUICKLY?
Hi all - Shell (sslowe) and I have been chatting about this topic. We feel that it's been brought up here and there, but we'd like input on what people have experienced as far as getting diagnosed and then quickly deciding on a course of treatment. If you started right away, did it seem like the right decision? or did you wait a bit to figure out what your body was telling you first? We think that there is merit to both and just wondered what you all have experienced and/or heard.
I'll start it off with my experience on the topic which is that I got both dxd and started on dmds quickly. And the reason that I did start the copaxone fast was that my neuro told me in no uncertain terms that it is best to not wait because the next new lesion could be a devastating one - and I just didn't want to play with that. So now I am 1 month into copaxone and not really sure if the weird stuff I am feeling is from the copaxone or the neurontin or provigil that I am also taking, or new/worse MS symptoms. It's frustrating but I am still glad I started the copaxone asap given that warning from my neuro.
So.... how about you?
Peace -
Jennie (and Shell)
I'll start it off with my experience on the topic which is that I got both dxd and started on dmds quickly. And the reason that I did start the copaxone fast was that my neuro told me in no uncertain terms that it is best to not wait because the next new lesion could be a devastating one - and I just didn't want to play with that. So now I am 1 month into copaxone and not really sure if the weird stuff I am feeling is from the copaxone or the neurontin or provigil that I am also taking, or new/worse MS symptoms. It's frustrating but I am still glad I started the copaxone asap given that warning from my neuro.
So.... how about you?
Peace -
Jennie (and Shell)
Newly Diagnosed 3 weeks ago after a year of MRI's blood tests and LP.
For me i think this was quick but also frustrating as each test took time.
My neurologist was great and told me i have RRMS and wants me to start DMD as soon as.. so in two weeks time i'm seeing another neurologist to discuss starting DMD's.
Kerry x
For me i think this was quick but also frustrating as each test took time.
My neurologist was great and told me i have RRMS and wants me to start DMD as soon as.. so in two weeks time i'm seeing another neurologist to discuss starting DMD's.
Kerry x
Love seeing an old thread come to life -- I even loved reading how ER and Greys were on, and something about setting the VCR :) 5 short years later, and I *still* miss ER, and I don't even watch Grey's on my DVR, I just get it online.
I digress ..
Diagnosed last week .. I would guess it was a quick dx, 6 weeks from Optic Neuritis, and I have my dx. I can't stop thinking about how if I didn't call my doc about that annoying headache behind my eye ...
I go to my MS Neuro tomorrow (one week after dx) to discuss meds. She gave me a week to "digest" .. at first I thought that was silly, but after crying at night the last 2 nights, I realize now that it takes digestion, even in this day of meds and expected remission.
To the point of the original thread, I do not question that I should be on meds ASAP. I do not WANT to be, don't want to deal with injections and/or side effects, but my reading shows me that even when we don't feel MS, it can be attacking our CNS and I don't want to be debilitated later because I waited to take meds.
I have a 3-year old and 6 month old at home (both girls) and I have been whining that my 6-month old will only ever know her mommy with MS .. something that will not matter to her, but DOES matter to me ... and a friend said yesterday "your girls will see you as courageous because you DO have MS but still function like a mom who doesn't" ... boy, did THAT grab my attention and solidify my decision to start meds ASAP.
I digress ..
Diagnosed last week .. I would guess it was a quick dx, 6 weeks from Optic Neuritis, and I have my dx. I can't stop thinking about how if I didn't call my doc about that annoying headache behind my eye ...
I go to my MS Neuro tomorrow (one week after dx) to discuss meds. She gave me a week to "digest" .. at first I thought that was silly, but after crying at night the last 2 nights, I realize now that it takes digestion, even in this day of meds and expected remission.
To the point of the original thread, I do not question that I should be on meds ASAP. I do not WANT to be, don't want to deal with injections and/or side effects, but my reading shows me that even when we don't feel MS, it can be attacking our CNS and I don't want to be debilitated later because I waited to take meds.
I have a 3-year old and 6 month old at home (both girls) and I have been whining that my 6-month old will only ever know her mommy with MS .. something that will not matter to her, but DOES matter to me ... and a friend said yesterday "your girls will see you as courageous because you DO have MS but still function like a mom who doesn't" ... boy, did THAT grab my attention and solidify my decision to start meds ASAP.
Just chiming in... Althought I don't write often I do read often. For those of you who don't know me, I was diagnosed with PPMS in 2008 after a fall at work. I had a brain MRI, first neuro appt, spinal tap and diagnosis all within a matter of a few months. This was followed by Neuro Psy testing and a new Neuro due to a personality likeness. I do not take any DMD's because there are none for PPMS. My Neuro has been involved in many studies at Beth Isreal Deconess Medical Center in Boston MA and with after discussing her research and other readings we decided together not to inject something into my body just because I have MS (personal preference). After a long discussion into my past my neurologist came to the determination that I have have PPMS for the past 10-20 years. I currently take other medications for Fibromyalgia and osteoarthritis that i'm sure help keep my symptoms down. Although I do have some right sided weakness and weird feeling in my legs most of my symptoms are cognitive. Short term memory issues and reduced processing speed where the main reason I had to stop working as a medical office manager. So... I just wanted to chime and share my story.
Debbie
~live as if all your dreams came true~
Debbie
~live as if all your dreams came true~
Many know my story so I will try to edit myself. Two topics - whether to start DMARDs when DX right away? And accessing health care. I have had extreme situations on both fronts. DX with systemic sclerosis and several other diseases, and having medicaid due to divorce from abusive husband who lost all our $ - I have not had good care except for my caring long time internist. He didn't have the expertise in the specialties I needed so I had many problems unaddressed.
I had an MRI which showed lesions and symptoms of ms long before I ever even thought about the possibility. Then years later while in Hosp for something else and having just gotten a blood patch for my 3rd LP, a neuro walked in my room, said "you have a slam dunk case of ms - here's a list of meds to choose from. Pick one, let me know and well get started". My mouth wasn't closed before she was gone.
I saw her a few weeks later and she gave me no info at all. I started on Copaxone and tried for a long time to tolerate the local site reactions but they were soooo severe I just couldn't. Then tried Rebif and same thing + flu like symptoms. But it was the site reactions I couldn't take. I think due to my overactive histamine reaction. Anyway - stopped that too. Then neuro said my case was too complicated for her - gave the infamous statement "you need fairy dust" and tried to get me another doctor. None would take me.
That was years ago and I haven't seen a neuro since. I've lost my internist, have developed heart problems and worstening of GI and pulmonary problems along with diabetes - type 1. Now - talk about not knowing whether something is ms, a drug, or one of a dozen other diseases or conditions! I am the poster child.
I know ms marches on regardless of lesion activity and apparently regardless of treatment. The ultimate level of disability is found to be the same regardless of # of attacks or lesions or treatment. So, I finally chose no treatment. There have been few new lesions, yet my right leg with foot drop gets weaker and now has almost no feeling below the knee. I'm still walking but fatigue, balance, and the right leg are my most obvious ms problems. I don't think I'll survive the other diseases long enough to worry about the long term physical disability if it comes. But I'd like to be able to sort it all out.
I now see a palliative care doctor and am hospitalized for pneumonitis or pneumonia etc. I see that I'm now rambling so will try to focus. I admit to the frustration of lack of good care, while simultaneously admit to not believing there is any good care out there for me. Drs don't truly understand how to treat ms - much less someone with so many DX on top of that one. Sometimes we need to accept the fact that answers are really guesses. All the drugs are going to create their own problems too. I took a chemo drug when first DX w/ sys scl. I lost most of my hair and didn't get any better. I've tried IVIg and felt it did some good but got it when hospitalized last time - got nauseous, regurgitated and aspirated, which made them withhold my meds and I went into acute withdrawal. Being in the hospital has become very dangerous!
OK, bottom line. There is no right answer for everyone. But don't be afraid to not be on the meds. I feel it is the best choice for me and don't think it will make a long term difference. Look up the studies. They all say there's no long term diff between the treated and not treated groups in end stage disability. Just a slight reduction in # of attacks. That's not enough for me to take such strong meds.
My 2c worth. Right now I'm searching for a neuro surgeon to address an arachnoid cyst in my T spine. Its completely closed my rt neural foramen. Left has a smaller one. Its a rare condition in adults - but I wouldn't want to disappoint. Boy am I a mess.
Blessings to everyone. I know that without the many trials I wouldn't have grown so close to my Lord. I believe that. So, I wouldn't trade health for what I have with Him. It will last an eternity. The suffering will have an end. Jan
I had an MRI which showed lesions and symptoms of ms long before I ever even thought about the possibility. Then years later while in Hosp for something else and having just gotten a blood patch for my 3rd LP, a neuro walked in my room, said "you have a slam dunk case of ms - here's a list of meds to choose from. Pick one, let me know and well get started". My mouth wasn't closed before she was gone.
I saw her a few weeks later and she gave me no info at all. I started on Copaxone and tried for a long time to tolerate the local site reactions but they were soooo severe I just couldn't. Then tried Rebif and same thing + flu like symptoms. But it was the site reactions I couldn't take. I think due to my overactive histamine reaction. Anyway - stopped that too. Then neuro said my case was too complicated for her - gave the infamous statement "you need fairy dust" and tried to get me another doctor. None would take me.
That was years ago and I haven't seen a neuro since. I've lost my internist, have developed heart problems and worstening of GI and pulmonary problems along with diabetes - type 1. Now - talk about not knowing whether something is ms, a drug, or one of a dozen other diseases or conditions! I am the poster child.
I know ms marches on regardless of lesion activity and apparently regardless of treatment. The ultimate level of disability is found to be the same regardless of # of attacks or lesions or treatment. So, I finally chose no treatment. There have been few new lesions, yet my right leg with foot drop gets weaker and now has almost no feeling below the knee. I'm still walking but fatigue, balance, and the right leg are my most obvious ms problems. I don't think I'll survive the other diseases long enough to worry about the long term physical disability if it comes. But I'd like to be able to sort it all out.
I now see a palliative care doctor and am hospitalized for pneumonitis or pneumonia etc. I see that I'm now rambling so will try to focus. I admit to the frustration of lack of good care, while simultaneously admit to not believing there is any good care out there for me. Drs don't truly understand how to treat ms - much less someone with so many DX on top of that one. Sometimes we need to accept the fact that answers are really guesses. All the drugs are going to create their own problems too. I took a chemo drug when first DX w/ sys scl. I lost most of my hair and didn't get any better. I've tried IVIg and felt it did some good but got it when hospitalized last time - got nauseous, regurgitated and aspirated, which made them withhold my meds and I went into acute withdrawal. Being in the hospital has become very dangerous!
OK, bottom line. There is no right answer for everyone. But don't be afraid to not be on the meds. I feel it is the best choice for me and don't think it will make a long term difference. Look up the studies. They all say there's no long term diff between the treated and not treated groups in end stage disability. Just a slight reduction in # of attacks. That's not enough for me to take such strong meds.
My 2c worth. Right now I'm searching for a neuro surgeon to address an arachnoid cyst in my T spine. Its completely closed my rt neural foramen. Left has a smaller one. Its a rare condition in adults - but I wouldn't want to disappoint. Boy am I a mess.
Blessings to everyone. I know that without the many trials I wouldn't have grown so close to my Lord. I believe that. So, I wouldn't trade health for what I have with Him. It will last an eternity. The suffering will have an end. Jan
I am probably in one of the strangest situations. I have been on Rituximab for 5.8 years for Rheumatoid Arthritis. I was just dx'd with MS a month ago & I haven't been given any treatment options as Rituximab is used for MS also.
I have said to my Neuro that I don't know what I would do about my arthritis without Rituximab because I've spent a lifetime trying everything else available with no success. I'm uncertain if the Rituximab is helping my MS or not & I guess I will have to wait & see. I'm not sure what options I have as I can't come off the Rituximab. If the situation was different & I only just got dx'd with MS I would definitely want to start DMD ASAP.
In regards to my Length of time I took to be dx. It was 9 months from when I first saw a neurologist but I had been to the cardiologist, respiratory physician, ENT & Neuro - ophthalmologist first & had lots of testing which took another couple of years. It wasn't until I was asked to put all my problems & symptoms together that it became obvious that MS or a mimic could be happening.
I'm now hoping I will get some help with my symptoms & learn to manage things better through learning from others & places like the MS Society. Karry :-)
I have said to my Neuro that I don't know what I would do about my arthritis without Rituximab because I've spent a lifetime trying everything else available with no success. I'm uncertain if the Rituximab is helping my MS or not & I guess I will have to wait & see. I'm not sure what options I have as I can't come off the Rituximab. If the situation was different & I only just got dx'd with MS I would definitely want to start DMD ASAP.
In regards to my Length of time I took to be dx. It was 9 months from when I first saw a neurologist but I had been to the cardiologist, respiratory physician, ENT & Neuro - ophthalmologist first & had lots of testing which took another couple of years. It wasn't until I was asked to put all my problems & symptoms together that it became obvious that MS or a mimic could be happening.
I'm now hoping I will get some help with my symptoms & learn to manage things better through learning from others & places like the MS Society. Karry :-)
For those newly diagnosed....Personal gauges of attacks never became a healthpage, but I thought you would be interested in reading about how some of us "try" to distinguish. And, also see how even a couple of our veterans of MS at the time of this post, still had issue making the determination.
For those who would like to add on a response to this original question, would love to fill up this post with more testimony!
It really does stand the test of time :)
For those who would like to add on a response to this original question, would love to fill up this post with more testimony!
It really does stand the test of time :)
Wow! I am so blessed! I have a great team of medical professionals! My nurse practitioner is super - she really cares. She sent me to one of the best neuros in our area. He is really good. His wife has MS so he really knows of what he speaks! I have a pretty good opthamologist as well. He is the one who ordered an MRI because of the strange vision test results. He felt just awful when he told me the results showed MS! I won't go into the whole history right now, but I was really calm. Explained a lot! Anyway, the subject started out anyway about being diagnosed and med choices. I was given some videos and written stuff about the meds by my (new to me then) neuro and told to make a choice within a week. I was glad for the time to take it all in and felt I made a choice that would work for me. I have been on Avonex for maybe 6 years now and only once in awhile have a nasty day afterwards with a screaming headache. I chose it because it was only once a week. I'm pretty new here, but like the format. "Jo"
Well I am glad that there are no hard feelings...just a really bad day today, probably a combination of fatigue, finding out about having emphysema along with the asthma and just feeling downright smushed (if that's a word)...THEN...I was going to throw together some chicken cacciatore for hubby for supper and thought I had taken out chicken thighs to defrost but it was two legs with the backs attached! It must have been in with the thighs at the store cause hubby wouldn't eat legs so I would never buy em! So I had the salad made and everything out for the casserole and voila'...no meat! Good thing hubby called from work and he is going to pick up a deli chicken and some potato salad and some buns...so much for Italian I guess eh?? grrr...just what I needed to top off my day I guess.
Oh well, ER starts tonight and Grey's Anatomy and Survivor...which reminds me, Survivor and Grey's is on at the same time so I had better tape one or the other....wish me luck trying to figure out how to use a VCR again...it's been a while.
I can feel the vibes Jennie and I know you are new but you are on the right track...don't give up cause your heart is in the right place!
Hugs,
Rena
Oh well, ER starts tonight and Grey's Anatomy and Survivor...which reminds me, Survivor and Grey's is on at the same time so I had better tape one or the other....wish me luck trying to figure out how to use a VCR again...it's been a while.
I can feel the vibes Jennie and I know you are new but you are on the right track...don't give up cause your heart is in the right place!
Hugs,
Rena
No need to apologize as far as I'm concerned either - I don't think you came across badly. I hear your frustration and totally feel for you - so much that I am moved to want to help you... I probably should be apologizing for assuming there is anything I can do! Little old newly diagnosed me! But anyways, I am keeping you in my prayers and hope that you can feel the good vibes coming your way (northwest!).
-Jennie
-Jennie
Sweetie, you did Nothing, not One blasted thing... Now if you believe only one thing, you have to believe this.. Don't ever apologize for stating how you are feeling or thinking... There are No Judgements here. We are all on this journey together, and we are all at different stages...
Hang in there, I know you will!!! I am here for you.. and I know everyone else is too...
Sending you Loving hugs... ShadowsSister
Hang in there, I know you will!!! I am here for you.. and I know everyone else is too...
Sending you Loving hugs... ShadowsSister
I do appreciate your offers of support and I am sorry if I came across in a bad way...having a bad day today...just read yet another article about how benign MS should be treated as the physicians have no idea what is in my future. Doesn't appear that it applies to me and it makes me incredibly sad and frustrated and I can't help but wonder what I did to deserve to be swept under the rug like a bit of useless fluff...sorry but that is the way I am feeling today...
That is an awful situation, and although I understand your explanation, I don't understand how it is allowed to go on. For a moment I forgot where you were from, but in my heart it doesn't compute that simply because of where you live you are unable to find a competent doctor - not in this day and age. I will bow to your conclusion that there isn't anything anyone can do - but if you change your mind, harness me up and I will help, ok?
-Jennie
-Jennie
Sweetie, I hear your frustration. I guess I should have asked about health care in your area... I am sorry..
Just know that I am here for you, I will support you in any way I can...
Hugs... & Prayers Daily...ShadowsSister
Just know that I am here for you, I will support you in any way I can...
Hugs... & Prayers Daily...ShadowsSister
I appreciate your offer of help Jennie but I don't there is anything anyone can do short of being a neurologist that would care to see me without a referral from my gp and even then I would probably be accused of "doctor shopping or wasting health care dollars." I have had many, many people on here offer suggestions but if the health care system isn't willing to help me I feel that I am on my own and will have to possibly travel somewhere else and take a chance on trying to get a neuro that will pay attention. Thanks anyway Jennie...I hope that everyone on the DMD's are getting a positive result though...at least there is hope that way right?
Shadow...I am sorry that the DMDs are not going to work for you but I am glad that you seem to have a doctor that is willing to try other things to help you improve your quality of life. Believe me, of course I have thought of getting a new doctor! I would be crazy to not have tried but with the shortage of doctors in the province right now and with the intensely busy practices the doctors that have space for new patients, they are not able to take on someone with a complex problem such as mine...or they are not willing and yes I have heard of "well don't tell them you have MS when you first see them" but what good has that done...nothing because they are gonna find out eventually and just drop me anyway! My gp has stated that she has been told by my neurologist that my MS is in-active and that she can't do anything about that. I have provided her with the names of new neurologists but she says that she can't refer me to a new neurologist because she doesn't know any other neurologists...bull pucky...she admitted that she has never met the Rheumatologist that she referred me to but still she could refer me to her!!
Shadow, I appreciate that you responded to my diatribe and that you want to help but as I told Jennie, there isn't much that anyone can do. As I said earlier, I am awaiting the results of the neuropsych consult and I will have to take it from there...in the meantime all I can do is wait and see what happens...it's a toss of the coin really...will I have PPMS after my next relapse, will I have another relapse, will my disease remain "In-Active" or will it rear it's ugly head and do it's worst because of the lack of care from my physicians??? Have you ever seen a four headed coin??? Me neither :(
Lots of Hugs,
Rena
Shadow...I am sorry that the DMDs are not going to work for you but I am glad that you seem to have a doctor that is willing to try other things to help you improve your quality of life. Believe me, of course I have thought of getting a new doctor! I would be crazy to not have tried but with the shortage of doctors in the province right now and with the intensely busy practices the doctors that have space for new patients, they are not able to take on someone with a complex problem such as mine...or they are not willing and yes I have heard of "well don't tell them you have MS when you first see them" but what good has that done...nothing because they are gonna find out eventually and just drop me anyway! My gp has stated that she has been told by my neurologist that my MS is in-active and that she can't do anything about that. I have provided her with the names of new neurologists but she says that she can't refer me to a new neurologist because she doesn't know any other neurologists...bull pucky...she admitted that she has never met the Rheumatologist that she referred me to but still she could refer me to her!!
Shadow, I appreciate that you responded to my diatribe and that you want to help but as I told Jennie, there isn't much that anyone can do. As I said earlier, I am awaiting the results of the neuropsych consult and I will have to take it from there...in the meantime all I can do is wait and see what happens...it's a toss of the coin really...will I have PPMS after my next relapse, will I have another relapse, will my disease remain "In-Active" or will it rear it's ugly head and do it's worst because of the lack of care from my physicians??? Have you ever seen a four headed coin??? Me neither :(
Lots of Hugs,
Rena
Sweetie, have you thought about getting a NEW Doctor??? I can't tell you how many Doctors I have Fired, because of this kind of attitude... You have every right to start treatment as soon as possible...
Please keep us up to date...with what is happening about this... This Dr. Is just unbelievable... and Wrong.. That is my opinion and every one has those ( OPINIONS)..
Some times we have to take a stand and Demand that we get the treatment available early on, not be forced to wait until the MS Progresses...
Sorry, I'll get off my soap box ...for now..
Hugs...ShadowsSister
Please keep us up to date...with what is happening about this... This Dr. Is just unbelievable... and Wrong.. That is my opinion and every one has those ( OPINIONS)..
Some times we have to take a stand and Demand that we get the treatment available early on, not be forced to wait until the MS Progresses...
Sorry, I'll get off my soap box ...for now..
Hugs...ShadowsSister
Hi Again, You right that sometimes medications can mask symptoms and also increase them. That's one reason to keep your Dr. informed of any changes you experience. Most times they call pretty much tell if it's the MS or the Medication.
With MS a lot of the time it's trial and error when coming up with the right drugs. Than a lot of the time what works for one person Doesn't work for the next. For me when we found something that helped it was Short Lived... And now like I have said we have exhausted the drugs... I do take Zanaflex & Skelaxin for the spasms in the spine and extremities. For the Bladder I take Ditropan and Enablex. They don't fix it, but some times I get a little relief, and it is better than nothing...
Hugs...ShadowsSister
With MS a lot of the time it's trial and error when coming up with the right drugs. Than a lot of the time what works for one person Doesn't work for the next. For me when we found something that helped it was Short Lived... And now like I have said we have exhausted the drugs... I do take Zanaflex & Skelaxin for the spasms in the spine and extremities. For the Bladder I take Ditropan and Enablex. They don't fix it, but some times I get a little relief, and it is better than nothing...
Hugs...ShadowsSister
Is there anything we can do to help? This tears at my heart - to have you diagnosed and not getting dmds....that neuro should be written up and dismissed!
there has to be something we can do to help...ideas anyone?
Jennie
there has to be something we can do to help...ideas anyone?
Jennie
I was diagnosed VERY quickly comparatively back in 1993. I presented with Grand Mal Seizures and that seemed to be the only thing that the doctors cared about back then and once they were under control the MS was pretty much forgotten other than the MRI I had done every two years or so by my evil neuro.
In 2007, I had what I believe was a relapse but this was denied by the evil neuro via a 10 minute exam and a look at an MRI (not sure if she saw the most recent one or if she refers to the last one she did). When I asked about DMD's I was told my disease is in-active and that I didn't need to be seen regularly by a neurologist because my disease is in-active and if I have any problems to refer to my gp. When I told this to my gp I was told "well, I don't know anything about MS" (boy is that evident) and to date I have no referral to a neurologist, no hope of getting one and I am awaiting results of a Neuro/Psych consult to determine if there are cognitive difficulties.
My concern is the new data that is coming to light that states that, "even during periods of clinical remission, however, there is ongoing disease activity. The eventual result: permanent destruction of individual axons and the clinical presentation of secondary-progressive MS. So, early identification of demyelinating activity with timely intervention may significantly delay or prevent the resultant disability of CDMS. " My evil neuro has NO way of knowing if my disease is going to progress into PPMS and neither do I but I know I had a relapse (there sure has been no other explanation for my symptoms) and why should I wait around for another relapse with the possibility of PPMS looming over my head? I don't know but I do know I don't want to wait around to find out!
Rena
In 2007, I had what I believe was a relapse but this was denied by the evil neuro via a 10 minute exam and a look at an MRI (not sure if she saw the most recent one or if she refers to the last one she did). When I asked about DMD's I was told my disease is in-active and that I didn't need to be seen regularly by a neurologist because my disease is in-active and if I have any problems to refer to my gp. When I told this to my gp I was told "well, I don't know anything about MS" (boy is that evident) and to date I have no referral to a neurologist, no hope of getting one and I am awaiting results of a Neuro/Psych consult to determine if there are cognitive difficulties.
My concern is the new data that is coming to light that states that, "even during periods of clinical remission, however, there is ongoing disease activity. The eventual result: permanent destruction of individual axons and the clinical presentation of secondary-progressive MS. So, early identification of demyelinating activity with timely intervention may significantly delay or prevent the resultant disability of CDMS. " My evil neuro has NO way of knowing if my disease is going to progress into PPMS and neither do I but I know I had a relapse (there sure has been no other explanation for my symptoms) and why should I wait around for another relapse with the possibility of PPMS looming over my head? I don't know but I do know I don't want to wait around to find out!
Rena
Thanks for sharing - you are so right - there are no right or wrong decisions, but they are so varied and interesting to those of us who may end up changing meds down the road, or those who haven't started yet ---- that's the purpose of this post. I wish you the very best with your infusion - please let me know how you make out, or just post to this string, whichever works for you.
Peace -
Jennie
Peace -
Jennie
First of all.....many apologies to those I talk to via PM - I'm still having a rough time...:) About the only thing I get to do is lurk here breifly now and again...
I was diagnosed quickly once I hit the neuro - went the cardiac and digestive route first. First appt he told me he thought it was MS. Did some more tests, went back and got the official verdict 3 weeks later - that was 4 months after all my symptoms started.
He recommeded we start treating aggressively and suggested Rebif but gave me the choice. I had already done some research and agreed. That was Feb. of this year.
Rebif made me feel worse overall. Felt like I had the flu all the time, but was hoping it was doing something good also.
Saw the neuro in July, and he told me things were obviously advancing and he was very concerned. The Rebif clearly wasn't working for me. He suggested we look at Tysabri. He gave me time to research it, and come back with questions, which I did. We decided it was the best option for me at this point, based on the whole picture with me. I am not advocating or trying to say anything bad about one treatment or another....this is only my experience... :)
I am scheduled for my first infusion of Tysabri Oct. 3rd. Hoping for the best, but I am well aware of the risks and go in with my eyes open. If it imporves my quality of life, it's worth the risk for me at this point.
Best of luck to you all.....there are no right or wrong decisions, and nothing is black and white with all this... :)
Rita
I was diagnosed quickly once I hit the neuro - went the cardiac and digestive route first. First appt he told me he thought it was MS. Did some more tests, went back and got the official verdict 3 weeks later - that was 4 months after all my symptoms started.
He recommeded we start treating aggressively and suggested Rebif but gave me the choice. I had already done some research and agreed. That was Feb. of this year.
Rebif made me feel worse overall. Felt like I had the flu all the time, but was hoping it was doing something good also.
Saw the neuro in July, and he told me things were obviously advancing and he was very concerned. The Rebif clearly wasn't working for me. He suggested we look at Tysabri. He gave me time to research it, and come back with questions, which I did. We decided it was the best option for me at this point, based on the whole picture with me. I am not advocating or trying to say anything bad about one treatment or another....this is only my experience... :)
I am scheduled for my first infusion of Tysabri Oct. 3rd. Hoping for the best, but I am well aware of the risks and go in with my eyes open. If it imporves my quality of life, it's worth the risk for me at this point.
Best of luck to you all.....there are no right or wrong decisions, and nothing is black and white with all this... :)
Rita
I Hear YOU!!! and I am Listening.. It is only through Christ that I am still here. He is my Strength, my Light, My Everything. I turned to Our Heavenly Father, as soon as I hung up the phone at 3:16 PM on Jan.29, 1986.( That time was burnt into my brain.) I knew at that moment I would not be walking this journey alone. My Faith has only grown stronger as the days have past. He sees to my every need, which is very different from my"Wants". It's knowing the difference that makes things easier. I can tell by your message you to have a strong faith,,, Hold on to it. Remember God didn't give us MS, but He will give us the strength to deal with it, if we let Him.
I see every day that He is working in my Life. Mostly it is small ways, that might be missed, but I thank God for allowing me to recognize the things that come from Him.
I hope your day is filled with Love,laughter, and Peace..
Hugs on the winds from me to you...ShadowsSister
I see every day that He is working in my Life. Mostly it is small ways, that might be missed, but I thank God for allowing me to recognize the things that come from Him.
I hope your day is filled with Love,laughter, and Peace..
Hugs on the winds from me to you...ShadowsSister
I was dx quickly, but didn't start using Rebif until after I got a 2nd opinion...I can honestly say I felt better before I started it, but given the alternative??? I am just at what I like to call "A new normal".....2 years in, I'm just used to the crappy feeling, so I don't think I notice it as much!!! LOL!!!
The first neuro I went to wouldn't say "you have MS" but wanted me to start using Avonex...that's why I went for a 2nd opinion...I was dx at the MS Clinic at a local university hospital. The neuro there said Rebif would be the more aggressive therapy, and given the early stage of my MS, the best choice in his opinion...So, I was kinda dx, then clinically dx, and this whole process took about 4 months....
The first neuro I went to wouldn't say "you have MS" but wanted me to start using Avonex...that's why I went for a 2nd opinion...I was dx at the MS Clinic at a local university hospital. The neuro there said Rebif would be the more aggressive therapy, and given the early stage of my MS, the best choice in his opinion...So, I was kinda dx, then clinically dx, and this whole process took about 4 months....
Thank you for sharing your journey - you ARE in the loop for this question - you are one of us, and one that has years of experience with this nasty issue. One thing that I really hate is that I am no longer very eloquent with my words (I'm impressed that I just remembered the word ELOQUENT!) but you are clearly still very able to communicate clearly... You Go Girl! Stay away from black holes - turn your back on that feeling and head for the light.
Peace and prayers coming your way!
-Jennie...
Phil 4:13
Peace and prayers coming your way!
-Jennie...
Phil 4:13
Hi, I am most likely out of the loop for this question, but I'll share with you about what it was like for me almost 25 years ago. I had flu like symptoms for almost two year. They ( Dr.) kept running blood test every six weeks and all they noticed was the high white count with no known cause. Around June 1985, I started being woke up at night with extream burning in both my hands, followed in a few weeks with it involving my feet. I lost control of my fingers which made typing almost impossible. They wouldn't hit the right keys, this was before computers came into to play. In Oct. I had to take a leave from work. In Jan1986. I saw a new Dr. he sent me the very same day to a Neurosurgeon and after a month of testing and almost every thing being ruled out I had a MRI on the 29TH of Jan 1986. That afternoon I was told I had MS. Three major leisions and numerous minor ones. They treated the symptoms as they showed up, most didn't work, the ones that did, soon stopped working.
Today they have more medication to treat MS than they did 23 years ago. I am in what "They call the later stages of CPMS.... I think that is just a label they gave me, because there hasn't really been a treatment that has worked. Today the goal is to make me a comfortable as they can, and we aren't doing a very good job at this... But, I am hanging in there. My Kids need me to fight for every day I can be with them. They know I am getting tired and my body is worn out. Most days my spirits are high, but just last week I went into a black hole, and all of you helped me come back into the day light.
MS is very cunning, but they are coming up with new treatments for the Newly Diagnosed all the time.. Which is so wonderful...
I keep all of you in my Daily Prayers, you have become almost like my second family. For almost twenty years, I have not shared my journey of living with MS. It upset my family too much if I started to talk about it, so I didn't except when I had to explain why my Doctors where changing the course of action. I am so grateful I now have all of you to talk to openly and honestly about what I am feeling & thinking... I HATE PITY and here I only find Support...
So Love and Hugs to all of you and may you each have a Love filled Day...ShadowsSister
Today they have more medication to treat MS than they did 23 years ago. I am in what "They call the later stages of CPMS.... I think that is just a label they gave me, because there hasn't really been a treatment that has worked. Today the goal is to make me a comfortable as they can, and we aren't doing a very good job at this... But, I am hanging in there. My Kids need me to fight for every day I can be with them. They know I am getting tired and my body is worn out. Most days my spirits are high, but just last week I went into a black hole, and all of you helped me come back into the day light.
MS is very cunning, but they are coming up with new treatments for the Newly Diagnosed all the time.. Which is so wonderful...
I keep all of you in my Daily Prayers, you have become almost like my second family. For almost twenty years, I have not shared my journey of living with MS. It upset my family too much if I started to talk about it, so I didn't except when I had to explain why my Doctors where changing the course of action. I am so grateful I now have all of you to talk to openly and honestly about what I am feeling & thinking... I HATE PITY and here I only find Support...
So Love and Hugs to all of you and may you each have a Love filled Day...ShadowsSister
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