smashly86
06-19-2008, 06:55 PM
Hi there everyone,
I am 22 years old and I was diagnosed with MS about 6 months ago. I haven't done much research until recently and I found this message board. I found that everyone seemed very helpful and supportive and I think I need to talk to people who know what I am going through and how I feel. I have experienced optic neuritis, numbness in the face and numbness from the waist down, depression and anxiety, chronic fatigue, bowel problems like constipation and pain, as well as dizziness and vertigo, loss of balance, light headedness and cognitve problems. One thing that started happening a few days ago is pain on the left side of my body (feels like bruising) and lower back pain. I have experienced the muscle aches from my meds but this is different. has anyone esle experienced this? I have not found too much info on specific pains on the net so I figured I would ask.
Thank-you
I am 22 years old and I was diagnosed with MS about 6 months ago. I haven't done much research until recently and I found this message board. I found that everyone seemed very helpful and supportive and I think I need to talk to people who know what I am going through and how I feel. I have experienced optic neuritis, numbness in the face and numbness from the waist down, depression and anxiety, chronic fatigue, bowel problems like constipation and pain, as well as dizziness and vertigo, loss of balance, light headedness and cognitve problems. One thing that started happening a few days ago is pain on the left side of my body (feels like bruising) and lower back pain. I have experienced the muscle aches from my meds but this is different. has anyone esle experienced this? I have not found too much info on specific pains on the net so I figured I would ask.
Thank-you
Sponsor
Snoopy61
06-19-2008, 07:14 PM
Hello Smashly.
Pain is very common for many with MS. Please speak with your neuro, there are meds to help.
Pain is very common for many with MS. Please speak with your neuro, there are meds to help.
april1848
06-19-2008, 08:26 PM
Hi Smashly, and welcome! I'm sorry about the MS, but I'm glad you found our little family!
There are lots of people here who experience the symptoms you name every day, so you'll be in very good company! About your specific back pains, I have one too. I get a feeling that I can only describe as a red hot poker being stabbed in my back--and it's always in the same place. It was one of the many symptoms that lead to my diagnosis (September), and every test to find another cause for it came back clean. MS can cause nerve pain, neuropathy, pretty much anywhere. My MS specialist said that the lesions on my cervical spine, not the ones on my brain, are probably causing this pain.
It went away for a few months after steroids, but now it comes back when it feels like it, and always when I'm overly exhausted. A drug like Neurontin (Gabapentin) may help with the pain. It hasn't worked for me, but for others it's a life saver.
Good luck to you! Are you on any of the DMDs? You are young to be diagnosed. Please know that MS doesn't have to keep you from doing anything that you want to do. Also, feel free to vent away and ask questions here. The people here undersand! This board helped me a lot when I was first diagnosed, and it still does, every day. I'm looking forward to getting to know you, keep us updated!
There are lots of people here who experience the symptoms you name every day, so you'll be in very good company! About your specific back pains, I have one too. I get a feeling that I can only describe as a red hot poker being stabbed in my back--and it's always in the same place. It was one of the many symptoms that lead to my diagnosis (September), and every test to find another cause for it came back clean. MS can cause nerve pain, neuropathy, pretty much anywhere. My MS specialist said that the lesions on my cervical spine, not the ones on my brain, are probably causing this pain.
It went away for a few months after steroids, but now it comes back when it feels like it, and always when I'm overly exhausted. A drug like Neurontin (Gabapentin) may help with the pain. It hasn't worked for me, but for others it's a life saver.
Good luck to you! Are you on any of the DMDs? You are young to be diagnosed. Please know that MS doesn't have to keep you from doing anything that you want to do. Also, feel free to vent away and ask questions here. The people here undersand! This board helped me a lot when I was first diagnosed, and it still does, every day. I'm looking forward to getting to know you, keep us updated!
MSNik
06-19-2008, 08:37 PM
HI Smashly- I wanted to say welcome, too. Sorry to hear about the dx, but you will definately benefit from sharing with us on this board. All of us have been where it sounds like you are- and all of us have bonded in a way that our significant others, family and friends will never be able to understand...try as they might- they just dont get MS fatigue or its symtoms! SO, welcome and feel free to unload here.
As for the symtoms you describe- some of them I can relate to. Ive had ON, and my initial dx was because of numbness and tingling, which never went away. Almost 2 years now, and I still have no use of my left hand or fingers- they hurt all the time...none of the drugs they have tried have helped- so I guess Im stuck with this for life..anxiety is something I also deal with...have you tried anything for it? I highly recommend Xanax to take the edge off...what started out as me taking them every day, went down to using them just now and then- but especially in the last few weeks, I find myself taking one at least every other day, just to deal with all Im going thru...have you tried it? It really helps..depression- I think is completely normal at the six month dx stage...youve now accepted that you have this disease, discovered how yucky some of the symtoms can be..I think its perfectly normal to be depressed right now; however, this can be something more serious, so please talk to your Neuro about it...in the meantime, vent here, ask questions and shout out to us...I found that this board literally saved me time and time again, and without it, Id be lost...I think youll find it helps you, too.
What drugs are you on? You mentioned something about your medication, but I dont think you said...are you on any interferons or Copaxone? Only asking, cuz this, too, can be a side effect- depression...just be on top of it and realize that if its hindering your life, you need to ask for help. ok?
Welcome again, and whatever we can do to help you..just let us know.
Nikki
As for the symtoms you describe- some of them I can relate to. Ive had ON, and my initial dx was because of numbness and tingling, which never went away. Almost 2 years now, and I still have no use of my left hand or fingers- they hurt all the time...none of the drugs they have tried have helped- so I guess Im stuck with this for life..anxiety is something I also deal with...have you tried anything for it? I highly recommend Xanax to take the edge off...what started out as me taking them every day, went down to using them just now and then- but especially in the last few weeks, I find myself taking one at least every other day, just to deal with all Im going thru...have you tried it? It really helps..depression- I think is completely normal at the six month dx stage...youve now accepted that you have this disease, discovered how yucky some of the symtoms can be..I think its perfectly normal to be depressed right now; however, this can be something more serious, so please talk to your Neuro about it...in the meantime, vent here, ask questions and shout out to us...I found that this board literally saved me time and time again, and without it, Id be lost...I think youll find it helps you, too.
What drugs are you on? You mentioned something about your medication, but I dont think you said...are you on any interferons or Copaxone? Only asking, cuz this, too, can be a side effect- depression...just be on top of it and realize that if its hindering your life, you need to ask for help. ok?
Welcome again, and whatever we can do to help you..just let us know.
Nikki
smashly86
06-19-2008, 09:29 PM
Thank-you Snoopy, April and Nikki for the response.
Nikki, I have been off of work now for about 5 weeks because of the anxiety. It was making me ill and I was having severe panic attacks. I went to the doctor and she put me on cymbalta. I experienced really bad side affects from it so two weeks ago she switched me to Paxil. I only experience a few side affects from paxil like headache, worsened dizziness, insomnia (still chronicly fatigued though just can't sleep at night), and increased appetite. But if I could take something that I could gradually wein myself off of that would be great. I will ask my doc about Xanax next time I am in. Is your hand and fingers paralyzed AND in extreme pain? I am currently taking Rebif I am only on week 8 of my titration schedule though so I am still getting used to it. I didn't even know that depression and anxiety (or a lot of my other symptoms for that matter) where related to MS until last night. I just did a bunch of research for the first time.
April, I am sorry I am still new at all this. I don't know what DMD's are. :) Did you have the spinal tap (I think that is what is called) done to find the lesions on your spine? My neuro had me scheduled for one before my official diagnosis but then I got my second attack and since my mom was concerned about me having the spinal one done (because they have to inject something into your blood stream or something, not entirely sure) I never had it done. I would like to know about the lesions on my spine though. And if it can affect my back pain like you said, it would be nice to know.
I am looking forward to getting to know all of you. Thank-you for making me feel welcome and your kind, uplifting words. hope to hear from you soon
Smashly
Nikki, I have been off of work now for about 5 weeks because of the anxiety. It was making me ill and I was having severe panic attacks. I went to the doctor and she put me on cymbalta. I experienced really bad side affects from it so two weeks ago she switched me to Paxil. I only experience a few side affects from paxil like headache, worsened dizziness, insomnia (still chronicly fatigued though just can't sleep at night), and increased appetite. But if I could take something that I could gradually wein myself off of that would be great. I will ask my doc about Xanax next time I am in. Is your hand and fingers paralyzed AND in extreme pain? I am currently taking Rebif I am only on week 8 of my titration schedule though so I am still getting used to it. I didn't even know that depression and anxiety (or a lot of my other symptoms for that matter) where related to MS until last night. I just did a bunch of research for the first time.
April, I am sorry I am still new at all this. I don't know what DMD's are. :) Did you have the spinal tap (I think that is what is called) done to find the lesions on your spine? My neuro had me scheduled for one before my official diagnosis but then I got my second attack and since my mom was concerned about me having the spinal one done (because they have to inject something into your blood stream or something, not entirely sure) I never had it done. I would like to know about the lesions on my spine though. And if it can affect my back pain like you said, it would be nice to know.
I am looking forward to getting to know all of you. Thank-you for making me feel welcome and your kind, uplifting words. hope to hear from you soon
Smashly
Nenu
06-19-2008, 10:09 PM
Heya Smash, another Canadian! Woot! :)
april1848
06-19-2008, 10:26 PM
I'm sorry I used "DMDs"!!! I didn't know what that meant either. It means Disease Modifying Drugs, which are Avonex, Rebif, Betaseron, and Copaxone--all injections, and all interferons, except the Copaxone. Tysabri is also included--that's a monthly (I think) infusion.
I never had a spinal tap (also called a lumbar puncture); I had enough lesions, symptoms, and documented history that I didn't need one. But they would find lesions on your spine from an MRI, not a spinal tap. Also, with a spinal tap--someone please correct me if I'm wrong--they don't inject anything. Rather, they stick a needle in your lower back and take out cerebro-spinal fluid, which they test. There can be some killer side effects, especially a spinal headache, but many of these can be avoided if you do what you're supposed to. There are lots of people on this board who have had spinals and it went perfectly well for them! But if you've already been diagnosed with MS, there's really no reason to get one.
I have also taken Xanax--I suffered with anxiety and panic attacks long before the MS diagnosis came along! It's a good drug for making you feel calmer faster. It's highly addictive though. It's better to treat anxiety with an SSRI antidepressant (in my nonmedical opinion), like Paxil, Zoloft, or Lexapro, ALONG with xanax to get you over the edges. The regular antidepressants could help the chemical imbalance that causes anxiety. Cognitive behavioral therapy helps too, and it can't hurt to see a therapist when you have a chronic illness.
Please don't be "sorry" for not knowing something! If it wasn't for this board and my excellent doctors, I wouldn't know anything. When I first heard "MS", I knew almost nothing about it, especially the treatments. I apologize for using that DMD thing! I was just wondering if you're on one. I do Avonex, an intra-muscular really long shot once a week.
The DMDs may or may not slow down progression of the disease by 30%, so it's a bit of a crapshoot. There are people here on all of them (there aren't that many DMDs unfortunately) and there are people here who have chosen not to take them, and they're doing well. It is a very personal choice, and whatever you decide, if you haven't already, you'll be supported here.
P.S. I am new to this too. I was diagnosed in September and I still have a lot to learn. I read every book and website (though some are outdated) that I could. Sometimes it's better to just come here with a question, since there are some very experienced people here!
I never had a spinal tap (also called a lumbar puncture); I had enough lesions, symptoms, and documented history that I didn't need one. But they would find lesions on your spine from an MRI, not a spinal tap. Also, with a spinal tap--someone please correct me if I'm wrong--they don't inject anything. Rather, they stick a needle in your lower back and take out cerebro-spinal fluid, which they test. There can be some killer side effects, especially a spinal headache, but many of these can be avoided if you do what you're supposed to. There are lots of people on this board who have had spinals and it went perfectly well for them! But if you've already been diagnosed with MS, there's really no reason to get one.
I have also taken Xanax--I suffered with anxiety and panic attacks long before the MS diagnosis came along! It's a good drug for making you feel calmer faster. It's highly addictive though. It's better to treat anxiety with an SSRI antidepressant (in my nonmedical opinion), like Paxil, Zoloft, or Lexapro, ALONG with xanax to get you over the edges. The regular antidepressants could help the chemical imbalance that causes anxiety. Cognitive behavioral therapy helps too, and it can't hurt to see a therapist when you have a chronic illness.
Please don't be "sorry" for not knowing something! If it wasn't for this board and my excellent doctors, I wouldn't know anything. When I first heard "MS", I knew almost nothing about it, especially the treatments. I apologize for using that DMD thing! I was just wondering if you're on one. I do Avonex, an intra-muscular really long shot once a week.
The DMDs may or may not slow down progression of the disease by 30%, so it's a bit of a crapshoot. There are people here on all of them (there aren't that many DMDs unfortunately) and there are people here who have chosen not to take them, and they're doing well. It is a very personal choice, and whatever you decide, if you haven't already, you'll be supported here.
P.S. I am new to this too. I was diagnosed in September and I still have a lot to learn. I read every book and website (though some are outdated) that I could. Sometimes it's better to just come here with a question, since there are some very experienced people here!
Nenu
06-19-2008, 10:39 PM
I had a spinal done, even though my MRI reeked of MS (lesions galore) I 'failed' the evoked test, and I had at least 4 isolated incidents of unexplainable neurological events.
Then again, my neuro also does monthly blood work with Copaxone. I'm told because he likes to be 'thorough'. Well, I for one am glad he is! Would suck to have an uncaring neurologist. I'll take the over-caring one :)
Then again, my neuro also does monthly blood work with Copaxone. I'm told because he likes to be 'thorough'. Well, I for one am glad he is! Would suck to have an uncaring neurologist. I'll take the over-caring one :)
smashly86
06-19-2008, 11:24 PM
Are you currently taking any DMD's? (Thanks for clearing that up for me by the way :)) I am on the Rebif. I don't mind it so far but we will see. I get my blood work done once a month too. Just for the first year. I am going for my second one tomorrow. I guess my doc likes to be thorough too. I thought everyone had to do that for some reason.
I was kind of confused about the spinal tap because I thought my doc said something about an MRI when he wanted me to go in to get my spine checked out. But I get it now I got the two mixed up. I would like to know about the lesions on my spine (if there are any I mean) just out of curiosity. I have only had the MRI on my brain. I have had several relapses as well as many of the other symptoms so he said it wasn't necassary for me to have my spine checked out for diagnostic purposes. There was more than enough evidence. Do people often have to go in to have an MRI more than once? Have you?
Did you do a lot of research as soon as you were diagnosed? I didn't really admitt to myself that I had this "disease" until recently so I haven't done really any research until now. It is sure nice that I have people to help me learn about it now though. It's only been one day and I already feel like I have learned so much. Thanks ladies!
I am surprised, Nenu, that there aren't more Canadians on this site. I hear that Alberta has one of the highest ratio of population to MS cases in the world. I am not too sure if that is true though.
Thank-you again.
I was kind of confused about the spinal tap because I thought my doc said something about an MRI when he wanted me to go in to get my spine checked out. But I get it now I got the two mixed up. I would like to know about the lesions on my spine (if there are any I mean) just out of curiosity. I have only had the MRI on my brain. I have had several relapses as well as many of the other symptoms so he said it wasn't necassary for me to have my spine checked out for diagnostic purposes. There was more than enough evidence. Do people often have to go in to have an MRI more than once? Have you?
Did you do a lot of research as soon as you were diagnosed? I didn't really admitt to myself that I had this "disease" until recently so I haven't done really any research until now. It is sure nice that I have people to help me learn about it now though. It's only been one day and I already feel like I have learned so much. Thanks ladies!
I am surprised, Nenu, that there aren't more Canadians on this site. I hear that Alberta has one of the highest ratio of population to MS cases in the world. I am not too sure if that is true though.
Thank-you again.
smashly86
06-19-2008, 11:43 PM
Ok. I think I have this figured out properly.So my doc was going to get me to get a spinal tap, not an MRI on my spine, for diagnostic purposes and then decided I didn't need one because of the lesions on my brain and the symptoms/relapses. Does that sound right? I am just trying to figure all of this out. Do most people have an MRI done on their spine? Thanks for your patience
Tasia W
06-20-2008, 12:21 AM
Hi Smashly
I just wanted to welcome you to the board!! You have lots of support here:)
Tasia
I just wanted to welcome you to the board!! You have lots of support here:)
Tasia
Nenu
06-20-2008, 12:50 AM
I am surprised, Nenu, that there aren't more Canadians on this site. I hear that Alberta has one of the highest ratio of population to MS cases in the world. I am not too sure if that is true though.
Thank-you again.
You may be thinking of the a certain interactive global map (from CBC, 2006 so outdated a bit), it does rank Alberta up there with est. 340 cases per 100,000 people, however Atlantic Canada is 350 per 100,000. Yowsers!
I grew up in Ontario however, and they suspect the first 15 years of one's life is what sets the 'grounds' for MS. Of course, this is speculation at this point, but it is quite interesting.
MS is a VERY known disease around the area I am in now, and I find that people around me are very supportive. Some will tell you that they don't tell their employers and such, but my employer (I am still on LTD) has been overly compassionate and helpful, as has the company. I'm very blessed.
My neuro suspects that I've had MS since 25, which in Canada is actually the average age at which it is diagnosed according to the CBC info. I was actually diagnosed at 31 however (just after turning).
Thank-you again.
You may be thinking of the a certain interactive global map (from CBC, 2006 so outdated a bit), it does rank Alberta up there with est. 340 cases per 100,000 people, however Atlantic Canada is 350 per 100,000. Yowsers!
I grew up in Ontario however, and they suspect the first 15 years of one's life is what sets the 'grounds' for MS. Of course, this is speculation at this point, but it is quite interesting.
MS is a VERY known disease around the area I am in now, and I find that people around me are very supportive. Some will tell you that they don't tell their employers and such, but my employer (I am still on LTD) has been overly compassionate and helpful, as has the company. I'm very blessed.
My neuro suspects that I've had MS since 25, which in Canada is actually the average age at which it is diagnosed according to the CBC info. I was actually diagnosed at 31 however (just after turning).
MommaEMS
06-20-2008, 12:50 AM
Hi Smashly,
Welcome to the board! This is a wonderful place to learn and ask questions. I am also on Rebif started 8 weeks ago. Remember that you are not alone.
:angel:
Momma
Welcome to the board! This is a wonderful place to learn and ask questions. I am also on Rebif started 8 weeks ago. Remember that you are not alone.
:angel:
Momma
smashly86
06-20-2008, 01:33 AM
Thank-you for the welcomes everyone. It's really nice to know that I will have support when I need it and I will give as much support as I can as well. :) I am on week 8 of my rebif as well. How is it going for you?
LC33
06-20-2008, 10:30 AM
Hi Smashly86. I am 21 years old and I was diagnosed 3 months ago, so you are not alone. It was hard to be so young and receive a diagnosis like I did. I am having the majority of the same symptoms as you, but with the support of my family and friends I am moving forward each day. I hope you are doing the same. I am on Copaxone for my medicine, but can you please tell me more about Rebif? :angel:
MSNik
06-20-2008, 01:00 PM
Hi Again Smashly..
Like you, Im on Rebif, and for LC33- Rebif is a 3 time a week shot, into the skin, not the muscle- which is one of the interferon's...interferon's work differently then your Copaxone, however they have more side effects. They are also considered to be stronger of a drug..many docs start you on Interferons first, and if you cant handle them, move you to Copaxone; however some docs believe in starting lower and then gradually increasing, if each individual warrants med adjustment. There is no RIGHT choice- whatever drug you are on is what you and your doc decided and you should stick with it, unless down the road things change, medically speaking.
Smashly- I do think that you understand the whole spinal thing, but you could be missing one thing...with MS, lesions show up in the brain, C (cervical) spine and occasionally in the Thoracic spine....many docs will MRI both the Cpsine and Brain at the same time- you can asks yours why he didnt....on some occasions, nothing shows up, so the doc will do the Lumbar Puncture or SPinal Tap (same test, differnt name) to see if Obands are found in the spinal fluid....like you, I didnt need the spinal tap to verify my MS. I had over 50 lesions in my brain and no need to look further; however I did have the spinal tap because I was exposed to meningitis a few years ago and they wanted to absolutely rule it out..(not meninigitis, but MS afterall). I have also had my Cpsine MRId many times, and nothing shows up there..its all "in my head" so to speak.
You asked about my fingers/hand...3 fingers completely dead, as far as usage, but I can feel them enough to bend them, so they are not paralyzed...but they hurt- all the time. My entire left hand tingles/burns/hurts 24-7 and I doubt it will ever stop. Nerve drugs havent helped- PT hasnt helped, Accupuncture hasnt helped...i think im stuck.
as for the Xanax- like April said, it can be addictive; however it does help. And, if you only use it PRN (when needed) and you dont abuse it, by taking it twice a day or regularly- addiction isnt something to really worry about if you know what you are doing..but also, like April said, I think that the Paxil or any of the other anti depressants might be a good choice for you at least until you start feeling stronger about all this.
Im sorry you are out of work- I took 2 days off to get it togehter this week, too. My job is extrememly stressful, and Im in sales, so the pressure is intense- this week has been horrible, so Ive decided to take a long weekend...I see my Neuro on Wed, and IM seriously considering asking him to write me out of work an extra week just to give me time to regroup. Ive had a prettty horrible month!
Please keep in touch with us...were here if you need us!
Nikki
Like you, Im on Rebif, and for LC33- Rebif is a 3 time a week shot, into the skin, not the muscle- which is one of the interferon's...interferon's work differently then your Copaxone, however they have more side effects. They are also considered to be stronger of a drug..many docs start you on Interferons first, and if you cant handle them, move you to Copaxone; however some docs believe in starting lower and then gradually increasing, if each individual warrants med adjustment. There is no RIGHT choice- whatever drug you are on is what you and your doc decided and you should stick with it, unless down the road things change, medically speaking.
Smashly- I do think that you understand the whole spinal thing, but you could be missing one thing...with MS, lesions show up in the brain, C (cervical) spine and occasionally in the Thoracic spine....many docs will MRI both the Cpsine and Brain at the same time- you can asks yours why he didnt....on some occasions, nothing shows up, so the doc will do the Lumbar Puncture or SPinal Tap (same test, differnt name) to see if Obands are found in the spinal fluid....like you, I didnt need the spinal tap to verify my MS. I had over 50 lesions in my brain and no need to look further; however I did have the spinal tap because I was exposed to meningitis a few years ago and they wanted to absolutely rule it out..(not meninigitis, but MS afterall). I have also had my Cpsine MRId many times, and nothing shows up there..its all "in my head" so to speak.
You asked about my fingers/hand...3 fingers completely dead, as far as usage, but I can feel them enough to bend them, so they are not paralyzed...but they hurt- all the time. My entire left hand tingles/burns/hurts 24-7 and I doubt it will ever stop. Nerve drugs havent helped- PT hasnt helped, Accupuncture hasnt helped...i think im stuck.
as for the Xanax- like April said, it can be addictive; however it does help. And, if you only use it PRN (when needed) and you dont abuse it, by taking it twice a day or regularly- addiction isnt something to really worry about if you know what you are doing..but also, like April said, I think that the Paxil or any of the other anti depressants might be a good choice for you at least until you start feeling stronger about all this.
Im sorry you are out of work- I took 2 days off to get it togehter this week, too. My job is extrememly stressful, and Im in sales, so the pressure is intense- this week has been horrible, so Ive decided to take a long weekend...I see my Neuro on Wed, and IM seriously considering asking him to write me out of work an extra week just to give me time to regroup. Ive had a prettty horrible month!
Please keep in touch with us...were here if you need us!
Nikki
Nenu
06-20-2008, 01:29 PM
I do believe that my neuro began me on Copaxone because it was the cheapest option for me ;).
I recall at the hospital after those words of dx, he then said "There are 4 drugs, each is administered a bit differently (of course he was referring to the CRABs as we call them... DMDs in other words, but CRABs - Copaxone, Rebif, Avonex, Betaseron), each has a different price tag." So I said, "Whatever is cheapest!". I had no clue LOL.
I'm happy with Copaxone for now, however I'm only on month 2, so it is hard to say what the end result will be, as it can take 6-9 months for most to show how they're benefiting (or not) from this drug, although 22 months is not unheard of either.
I recall at the hospital after those words of dx, he then said "There are 4 drugs, each is administered a bit differently (of course he was referring to the CRABs as we call them... DMDs in other words, but CRABs - Copaxone, Rebif, Avonex, Betaseron), each has a different price tag." So I said, "Whatever is cheapest!". I had no clue LOL.
I'm happy with Copaxone for now, however I'm only on month 2, so it is hard to say what the end result will be, as it can take 6-9 months for most to show how they're benefiting (or not) from this drug, although 22 months is not unheard of either.
MommaEMS
06-20-2008, 06:13 PM
Hi Again!
You asked how I was doing on Rebif, its been really good. I had problems with Vertigo for about 5 years and thankfully it is now gone. I get a little light headed sometimes but the spinning i used to get when I would try to lay down or look up is gone!!!! That is such a blessing.
I haven't had any adverse reactions, no flu like symptoms or anything like that. I still have aches and pains and the fatigue hasn't gotten any better but I'm thrilled that the vertigo is gone.
Keep us posted on how you are doing. Have a great weekend.
Momma :)
You asked how I was doing on Rebif, its been really good. I had problems with Vertigo for about 5 years and thankfully it is now gone. I get a little light headed sometimes but the spinning i used to get when I would try to lay down or look up is gone!!!! That is such a blessing.
I haven't had any adverse reactions, no flu like symptoms or anything like that. I still have aches and pains and the fatigue hasn't gotten any better but I'm thrilled that the vertigo is gone.
Keep us posted on how you are doing. Have a great weekend.
Momma :)
smashly86
06-20-2008, 06:59 PM
I don't know much about the meds. I know a little more now that Msnik explained it. My mom has pretty much done all of the research for me and everything because I have had such a rough year that she wanted to make it easier on me. Since last summer I have bought a house, changed jobs, had ovarian tumors the size of grapefruits in each ovary, got diagnosed with MS and also lost over 115 lbs. So it's been mentally, emotionally, and physically stressful year. That is also why I decided to leave my job. My doc was giving me notes because she didn't want me working right now either but yesterday I decided to quit because my job sounds simmilar to yours, nikki, sales, high pressure and stressful. It just wasn't working for me anymore. If anything it was worsening my health. My boyfriend and my parents are very supportive though so I will probably find a low-stress part time job eventually. right now I just need to rest I think. Get my mind in the right place :).
It is a good thing you didn't have meningitis (not so good about the ms). I hear that it can be deadly. It's too bad about your hand too. But it sounds like you a pretty positive and you know how to keep moving in the right direction. That is so important I find. Sometimes it is very difficult to be positive about things like ms but you seem to be pretty good at it. You should take some time off of work if you need it. I told my manager that I needed some time off and she told me I had to wait until the end of june (not to be mean we were just busy). So I told her I would wait if I had to. Then I ended up having panic attacks at work and getting sick to my stomach from stress (plus my bowels have been in agony). And my doctor took me off. You don't want to wait until something like that happens, hey? Is your work cool with you taking time off when you have a doctors note or do they try and make you feel guilty about it?
Momma, sounds like the Rebif is about the same for you as it is for me too. I don't get flu like symptoms except for the muscle aches too. I am so glad that I am so good with needles. Otherwise some of this stuff would really not be too fun. Like getting the blood work every month, the intervenus steroids, and the Rebif.
Talk to you later everyone. Have a great day!!!!
Smashly :)
It is a good thing you didn't have meningitis (not so good about the ms). I hear that it can be deadly. It's too bad about your hand too. But it sounds like you a pretty positive and you know how to keep moving in the right direction. That is so important I find. Sometimes it is very difficult to be positive about things like ms but you seem to be pretty good at it. You should take some time off of work if you need it. I told my manager that I needed some time off and she told me I had to wait until the end of june (not to be mean we were just busy). So I told her I would wait if I had to. Then I ended up having panic attacks at work and getting sick to my stomach from stress (plus my bowels have been in agony). And my doctor took me off. You don't want to wait until something like that happens, hey? Is your work cool with you taking time off when you have a doctors note or do they try and make you feel guilty about it?
Momma, sounds like the Rebif is about the same for you as it is for me too. I don't get flu like symptoms except for the muscle aches too. I am so glad that I am so good with needles. Otherwise some of this stuff would really not be too fun. Like getting the blood work every month, the intervenus steroids, and the Rebif.
Talk to you later everyone. Have a great day!!!!
Smashly :)
Nenu
06-20-2008, 07:44 PM
I just sold my house! I had purchased it when I was still with my bf, but dealing with house on my own isn't happening :p
MSNik
06-20-2008, 08:04 PM
Smashly, tell me your secret for getting work to allow you time off and Ill send you a zillion dollars!:D No, they are not cooperating. My doc actually gave me a note 2 weeks ago, it was actually temporary disability papers- telling me I had to be off work for 2 full weeks. Unfortunately, the next day, i was supposedly heading to an expo in another city..I went. Stupid me. I plowed thru 5 of my 15 days where I shouldnt have been working and wound up feeling ten times worse than when I started!
So, I have 5 days of the 14 left at this point, and decided im not going to work until I see my doc again on Wed...thats my last "disability day"..maybe I can have him keep me out longer- I dont know. Its kind of my plan, to ask him to allow me more time....my boss WOULDNT sign the disability note- so Im not getting paid for anytime off...but if I stay out the full 7 days consecutively, then I can file it and argue it without his (my bosses) okay...I might win, I might not...but at this point, I wish he would fire me. Then, I could collect for awhile...its not likely to happen.
My life right now is a disaster...Im losing everything I worked so hard for. I do own a home, and am married, and my husband is of no help whatsoever. But thats a story for another time..
Meanwhile, hope you are having good days..and your lucky your mom is so supportive. Personally, I think she made the right choice with Rebif..its aggressive, its strong, the needle is the smallest on the market, and if you havent had any real side effects so far, then youre probably not going to get any. I too, did blood work every month for the first year. Hard to believe at the end of the summer Ill be on this drug for 2 full years! my blood work is always fine- my MRIs (whcih I have every 6 months) arent showing any new lesions- so overall, Rebif is working great for me...as for the positive attitude about my hand- if you want to laugh, search my previous posts- my attitude wasnt always positive..Ive learned, mostly thru the support here, that you do what you can and dont do what you cant. I cant change this- Ive tired everything the Neuro can think of..its not changing or fixing anything- so I just deal!
Glad you are joining in with us..its nice to have another Rebif'er on here!
Hugs
Nikki
So, I have 5 days of the 14 left at this point, and decided im not going to work until I see my doc again on Wed...thats my last "disability day"..maybe I can have him keep me out longer- I dont know. Its kind of my plan, to ask him to allow me more time....my boss WOULDNT sign the disability note- so Im not getting paid for anytime off...but if I stay out the full 7 days consecutively, then I can file it and argue it without his (my bosses) okay...I might win, I might not...but at this point, I wish he would fire me. Then, I could collect for awhile...its not likely to happen.
My life right now is a disaster...Im losing everything I worked so hard for. I do own a home, and am married, and my husband is of no help whatsoever. But thats a story for another time..
Meanwhile, hope you are having good days..and your lucky your mom is so supportive. Personally, I think she made the right choice with Rebif..its aggressive, its strong, the needle is the smallest on the market, and if you havent had any real side effects so far, then youre probably not going to get any. I too, did blood work every month for the first year. Hard to believe at the end of the summer Ill be on this drug for 2 full years! my blood work is always fine- my MRIs (whcih I have every 6 months) arent showing any new lesions- so overall, Rebif is working great for me...as for the positive attitude about my hand- if you want to laugh, search my previous posts- my attitude wasnt always positive..Ive learned, mostly thru the support here, that you do what you can and dont do what you cant. I cant change this- Ive tired everything the Neuro can think of..its not changing or fixing anything- so I just deal!
Glad you are joining in with us..its nice to have another Rebif'er on here!
Hugs
Nikki
Canadian gal
06-21-2008, 01:09 AM
Hi there everyone,
I am 22 years old and I was diagnosed with MS about 6 months ago. I haven't done much research until recently and I found this message board. I found that everyone seemed very helpful and supportive and I think I need to talk to people who know what I am going through and how I feel. I have experienced optic neuritis, numbness in the face and numbness from the waist down, depression and anxiety, chronic fatigue, bowel problems like constipation and pain, as well as dizziness and vertigo, loss of balance, light headedness and cognitve problems. One thing that started happening a few days ago is pain on the left side of my body (feels like bruising) and lower back pain. I have experienced the muscle aches from my meds but this is different. has anyone esle experienced this? I have not found too much info on specific pains on the net so I figured I would ask.
Thank-you
Hi and welcome, smashly.
I am in Canada too, in Vancouver.
The numbness you are experiencing is likely from a spinal lesion. Depending on our symptoms, and how much evidence they need to make the dx, they may do a MRI of the brain, C spine and T spine. Quite often our spinal lesions don't show very well, even in a MRI, but based on your numbness from the waist down and bowel problems, it sounds like you have them.
There is really no need to get another MRI, EVER, if you don't want to. Some people, and neuros, do so out of curiousity. Sometimes they use this information (changes in the MRI) to try to evaluate a persons 'drug of choice' too though, so a neuro may suggest one in another 2 - 10 yrs. However, it is usually obvious if a drug isn't working for a person, if they continue to have a lot of relapses.
The damage that occurs from having spinal lesions can be pretty obvious, and our doctors can estimate with precision where our spinal lesions are, based on our symptoms in a (spinal lesion) attack. Your's is likely in your lower T-spine, since you went numb from the waist down. Or, perhaps it is a higher lesion (because you had facial numbness too), but the inflammation wasn't as bad as it could have been. Where ever the lesion is, we are affected from that point down.
I have two spinal lesions, and the first one caused numbness from the breasts down (mid T-spine lesion). The second time my numbness was head to toe, so they knew it was a upper C-spine lesion. That is where they were located in the MRI, when I finally had one.
Once dx, there is no need for a lumbar puncture either. In fact, based on my personal experience, a LP would be a LAST RESORT test. :( It is certainly not necessary for you, at this point in the game.
I too have bowel issues, both from MS and Ulcerative Colitis. That has been very difficult at times, especially during attacks, but it is an ongoing/daily problem as well. After trying everything under the sun, I found Benefibre very, very helpful. You do not want to leave constipation (especially) untreated, as it can cause long-term/permanent damage.
I have had some back pain, from both the lesions, and because of poor posture (due to other aches and pains I compensate for). Massage, by a profession who is very experienced in MS, can be helpful. Otherwise, just time and laying around a lot, seems to help. Naproxen 500mg X 2 per day can take the edge off . . . but it does not take the pain away.
We tend to blame a lot of our health problems on MS too, so if something is causing enough pain, have it checked out by a doc. Don't "assume" it is the MS . . .
Sorry to hear about the dx at such a young age. I can date my symptoms back to my late teens, but they didn't say anything until I was 31. I guess I'm kinda glad about that.
Cherie
I am 22 years old and I was diagnosed with MS about 6 months ago. I haven't done much research until recently and I found this message board. I found that everyone seemed very helpful and supportive and I think I need to talk to people who know what I am going through and how I feel. I have experienced optic neuritis, numbness in the face and numbness from the waist down, depression and anxiety, chronic fatigue, bowel problems like constipation and pain, as well as dizziness and vertigo, loss of balance, light headedness and cognitve problems. One thing that started happening a few days ago is pain on the left side of my body (feels like bruising) and lower back pain. I have experienced the muscle aches from my meds but this is different. has anyone esle experienced this? I have not found too much info on specific pains on the net so I figured I would ask.
Thank-you
Hi and welcome, smashly.
I am in Canada too, in Vancouver.
The numbness you are experiencing is likely from a spinal lesion. Depending on our symptoms, and how much evidence they need to make the dx, they may do a MRI of the brain, C spine and T spine. Quite often our spinal lesions don't show very well, even in a MRI, but based on your numbness from the waist down and bowel problems, it sounds like you have them.
There is really no need to get another MRI, EVER, if you don't want to. Some people, and neuros, do so out of curiousity. Sometimes they use this information (changes in the MRI) to try to evaluate a persons 'drug of choice' too though, so a neuro may suggest one in another 2 - 10 yrs. However, it is usually obvious if a drug isn't working for a person, if they continue to have a lot of relapses.
The damage that occurs from having spinal lesions can be pretty obvious, and our doctors can estimate with precision where our spinal lesions are, based on our symptoms in a (spinal lesion) attack. Your's is likely in your lower T-spine, since you went numb from the waist down. Or, perhaps it is a higher lesion (because you had facial numbness too), but the inflammation wasn't as bad as it could have been. Where ever the lesion is, we are affected from that point down.
I have two spinal lesions, and the first one caused numbness from the breasts down (mid T-spine lesion). The second time my numbness was head to toe, so they knew it was a upper C-spine lesion. That is where they were located in the MRI, when I finally had one.
Once dx, there is no need for a lumbar puncture either. In fact, based on my personal experience, a LP would be a LAST RESORT test. :( It is certainly not necessary for you, at this point in the game.
I too have bowel issues, both from MS and Ulcerative Colitis. That has been very difficult at times, especially during attacks, but it is an ongoing/daily problem as well. After trying everything under the sun, I found Benefibre very, very helpful. You do not want to leave constipation (especially) untreated, as it can cause long-term/permanent damage.
I have had some back pain, from both the lesions, and because of poor posture (due to other aches and pains I compensate for). Massage, by a profession who is very experienced in MS, can be helpful. Otherwise, just time and laying around a lot, seems to help. Naproxen 500mg X 2 per day can take the edge off . . . but it does not take the pain away.
We tend to blame a lot of our health problems on MS too, so if something is causing enough pain, have it checked out by a doc. Don't "assume" it is the MS . . .
Sorry to hear about the dx at such a young age. I can date my symptoms back to my late teens, but they didn't say anything until I was 31. I guess I'm kinda glad about that.
Cherie
Nenu
06-21-2008, 08:10 AM
Cherie, you were also dx'ed at 31?
My biggest 'symptom' is proving to be burning mouth. 2 neuros so far figure brain stem lesion. If that's just suspicion or truth, I'm not sure, I never saw my MRIs. I could go back searching if I really wanted, but as my neurologist said, what's on the MRI doesn't matter at this point (number of lesions etc). What matters is the dx and following with the drugs.
I only take a max of 500mg of Neurontin (Gabapentin actually, the generic) and 10mg of Amitriptyline for the burning mouth. Plus my Copaxone, and OTC drugs (Tylenol) for headache.
My biggest 'symptom' is proving to be burning mouth. 2 neuros so far figure brain stem lesion. If that's just suspicion or truth, I'm not sure, I never saw my MRIs. I could go back searching if I really wanted, but as my neurologist said, what's on the MRI doesn't matter at this point (number of lesions etc). What matters is the dx and following with the drugs.
I only take a max of 500mg of Neurontin (Gabapentin actually, the generic) and 10mg of Amitriptyline for the burning mouth. Plus my Copaxone, and OTC drugs (Tylenol) for headache.
Canadian gal
06-21-2008, 10:43 AM
Cherie, you were also dx'ed at 31?
My biggest 'symptom' is proving to be burning mouth. 2 neuros so far figure brain stem lesion. If that's just suspicion or truth, I'm not sure, I never saw my MRIs. I could go back searching if I really wanted, but as my neurologist said, what's on the MRI doesn't matter at this point (number of lesions etc). What matters is the dx and following with the drugs.
I only take a max of 500mg of Neurontin (Gabapentin actually, the generic) and 10mg of Amitriptyline for the burning mouth. Plus my Copaxone, and OTC drugs (Tylenol) for headache.
I'm not sure where the lesion would be for a burning mouth. From the notes I've kept, "the neurological functions located in the brainstem include those necessary for survival (breathing, digestion, heart rate, blood pressure) and for arousal (being awake and alert). It is the pathway for all fiber tracts passing up and down from peripheral nerves and spinal cord to the highest parts of the brain."
I have heard of people with facial numbness, similar to Bell's Palsy (which can occur from MS), with the only known lesions in their brain. :confused:
The upper spinal cord influences the following:
C1: blood supply to the head, pituitary gland, scalp, bones of the face, inner and middle ear, sympathetic nervous system, eyes, ears
C2: eyes, optic nerves, auditory nerves, sinuses, mastoid bones, tongue, forehead, heart
C3: cheeks, outer ear, face, bones, teeth, trifacial nerve, lungs
C4: nose, lips, mouth, Eustachian tube, mucus membranes, lungs
C5: vocal cords, neck glands, pharynx
C6: neck muscles, shoulders, tonsils
The numbness I've had in my face included a numb mouth, tongue, lips . . . and on other occasions, the top of my head and tips of my ears. Last time they checked, I had a large lesion in the C2-C3 region, which seems to make sense for my symptoms.
I think the max they will rx of Naproxen is 750mg X 2 per day. Basically that is just three Aleve @ 250mg each. When I have a lot of inflammation, I will start with 1000 mg of Naproxen, take 500 mg the second time that day, then 500mg twice a day after that. A person should be monitored when using anti-inflammatories at that dosage, and they shouldn't take them for long periods of time. I've been using them several years, with no bad effects, so my doc rx's 100 at a time to me (and manages when I need another rx). I don't like taking meds though, so I use them sparingly, EXCEPT when it comes to the back pain. That is all that I use get me through the day though.
Cherie
My biggest 'symptom' is proving to be burning mouth. 2 neuros so far figure brain stem lesion. If that's just suspicion or truth, I'm not sure, I never saw my MRIs. I could go back searching if I really wanted, but as my neurologist said, what's on the MRI doesn't matter at this point (number of lesions etc). What matters is the dx and following with the drugs.
I only take a max of 500mg of Neurontin (Gabapentin actually, the generic) and 10mg of Amitriptyline for the burning mouth. Plus my Copaxone, and OTC drugs (Tylenol) for headache.
I'm not sure where the lesion would be for a burning mouth. From the notes I've kept, "the neurological functions located in the brainstem include those necessary for survival (breathing, digestion, heart rate, blood pressure) and for arousal (being awake and alert). It is the pathway for all fiber tracts passing up and down from peripheral nerves and spinal cord to the highest parts of the brain."
I have heard of people with facial numbness, similar to Bell's Palsy (which can occur from MS), with the only known lesions in their brain. :confused:
The upper spinal cord influences the following:
C1: blood supply to the head, pituitary gland, scalp, bones of the face, inner and middle ear, sympathetic nervous system, eyes, ears
C2: eyes, optic nerves, auditory nerves, sinuses, mastoid bones, tongue, forehead, heart
C3: cheeks, outer ear, face, bones, teeth, trifacial nerve, lungs
C4: nose, lips, mouth, Eustachian tube, mucus membranes, lungs
C5: vocal cords, neck glands, pharynx
C6: neck muscles, shoulders, tonsils
The numbness I've had in my face included a numb mouth, tongue, lips . . . and on other occasions, the top of my head and tips of my ears. Last time they checked, I had a large lesion in the C2-C3 region, which seems to make sense for my symptoms.
I think the max they will rx of Naproxen is 750mg X 2 per day. Basically that is just three Aleve @ 250mg each. When I have a lot of inflammation, I will start with 1000 mg of Naproxen, take 500 mg the second time that day, then 500mg twice a day after that. A person should be monitored when using anti-inflammatories at that dosage, and they shouldn't take them for long periods of time. I've been using them several years, with no bad effects, so my doc rx's 100 at a time to me (and manages when I need another rx). I don't like taking meds though, so I use them sparingly, EXCEPT when it comes to the back pain. That is all that I use get me through the day though.
Cherie
Nenu
06-21-2008, 12:09 PM
Geez, I don't know HOW I read Naproxen as Neurontin lol!
Busy getting stuff ready to move today. My head's swimming.
On the topic of facial numbness, I had something that looked similar to Bells or facial spasm on the right side of my face, lasting a couple months. I didn't get the tell tale droop, I had the corner of my mouth on the right being pulled upwards.
The burning mouth predated this, but my burning is 99% on the right side, upper region. It continued after the spasms etc calmed down. I still get eye twitch on that side, and very rarely twitching in my cheek/mouth area.
If I could get this burning calmed down once and for all, there goes most of my daily misery. It is generally ok if I am relaxed, but once I get stressed, it does become quite bad.
Busy getting stuff ready to move today. My head's swimming.
On the topic of facial numbness, I had something that looked similar to Bells or facial spasm on the right side of my face, lasting a couple months. I didn't get the tell tale droop, I had the corner of my mouth on the right being pulled upwards.
The burning mouth predated this, but my burning is 99% on the right side, upper region. It continued after the spasms etc calmed down. I still get eye twitch on that side, and very rarely twitching in my cheek/mouth area.
If I could get this burning calmed down once and for all, there goes most of my daily misery. It is generally ok if I am relaxed, but once I get stressed, it does become quite bad.
MSNik
06-21-2008, 12:37 PM
Nenu- if you are taking Garbapentin, it IS NEURONTIN..which is NOT the same as NAPROXIN....Naproxin is a NSAID, a nonsteroid antiinflamatory drug, sold over the counter as Aleve in the USA...
Neurontin is for nerve pain....
Be sure of what you are taking....
Cherie is right about the dosage of Naproxin, but Neurontin can be taken up to 350 mgs 3 x a day...however, that dosage will put you to sleep for a few hours! Naprosen, doesnt make you tired- its simply OTC drug for pain much like Motrin or Tylenol.
nikki
Neurontin is for nerve pain....
Be sure of what you are taking....
Cherie is right about the dosage of Naproxin, but Neurontin can be taken up to 350 mgs 3 x a day...however, that dosage will put you to sleep for a few hours! Naprosen, doesnt make you tired- its simply OTC drug for pain much like Motrin or Tylenol.
nikki
Nenu
06-21-2008, 12:44 PM
Nenu- if you are taking Garbapentin, it IS NEURONTIN..which is NOT the same as NAPROXIN....Naproxin is a NSAID, a nonsteroid antiinflamatory drug, sold over the counter as Aleve in the USA...
Neurontin is for nerve pain....
Be sure of what you are taking....
LOL, yeah I know I'm taking Neurontin (Gabapentin) for nerve pain (specifically BMS), and overall it's helping the BMS pain for the most part. I'm taking the lower end of dosage, and they've shown BMS responds to the lower ranges. It is in fact nerve pain causing the burning mouth ordeal. :(
I've taken Naproxen previously (my stomach didn't like that very much). If memory serves me correctly, Aleve is not sold in Canada.
I'd read Cherie's post as Neurontin, and after she clarified she was talking about Naproxen. One of those days. :p
Neurontin is for nerve pain....
Be sure of what you are taking....
LOL, yeah I know I'm taking Neurontin (Gabapentin) for nerve pain (specifically BMS), and overall it's helping the BMS pain for the most part. I'm taking the lower end of dosage, and they've shown BMS responds to the lower ranges. It is in fact nerve pain causing the burning mouth ordeal. :(
I've taken Naproxen previously (my stomach didn't like that very much). If memory serves me correctly, Aleve is not sold in Canada.
I'd read Cherie's post as Neurontin, and after she clarified she was talking about Naproxen. One of those days. :p
Canadian gal
06-21-2008, 12:58 PM
If memory serves me correctly, Aleve is not sold in Canada.
You may be right, come to think of it. I only live a hop, skip and jump from the border, so I forget which country has what.
Either way, at that dosage a person really needs to be monitored . . .
Cherie
You may be right, come to think of it. I only live a hop, skip and jump from the border, so I forget which country has what.
Either way, at that dosage a person really needs to be monitored . . .
Cherie
Nenu
06-21-2008, 01:21 PM
I do wish I could find Aleve here however. My TMJ has been bad the past few days. Jaws are aching :(
Thankfully no headache upon waking today however, and it's been a long time since that happened :)
Thankfully no headache upon waking today however, and it's been a long time since that happened :)
april1848
06-21-2008, 01:41 PM
I've found Aleve to be great for headaches. I've been getting them often since I was a kid, and bad ones, though I don't get as many migraines as I used to. Aleve definitely works better for my headaches than tylenol or ibuprofen.
Unfortunately Aleve doesn't help much for the Avonex side effects, but Ibuprofen does a little. I had almost no side effects the last two weeks, and today I feel miserable, and I still have a small fever. It's a bummer, because I thought they were finally going away, and I did everything I usually do last night. Oh well!
Unfortunately Aleve doesn't help much for the Avonex side effects, but Ibuprofen does a little. I had almost no side effects the last two weeks, and today I feel miserable, and I still have a small fever. It's a bummer, because I thought they were finally going away, and I did everything I usually do last night. Oh well!