simbamojo01
10-30-2006, 09:12 PM
My wife was recently dx'd (w/in the last 5 yrs) with relapse/remitting MS. She has numbness in her hands and feet that after the lates bout which happened about two years ago, has not gone away. Her symptoms started with a numbness in the feet then the hands then went up her legs to about mid torso. The "band" rested about mid torso and around the chest area. Then decided to just reverse itself one day and go away the same way that it came on. That was the second bout in about 10 years that it was that severe.
Now she is left with the feet and hands constantly numb. She gets increased numbness in the feet and hands anytime she ingages in physical activity. The neuro said she could have a case of benign MS since she has only had the two severe bouts in that time. While we are greatful for this blessing in reading the other more severe stories, I know God has truly blessed us.
I was just wondering if anyone out there had the same or similar kind of MS.
Please respond only if you are an adult.
Now she is left with the feet and hands constantly numb. She gets increased numbness in the feet and hands anytime she ingages in physical activity. The neuro said she could have a case of benign MS since she has only had the two severe bouts in that time. While we are greatful for this blessing in reading the other more severe stories, I know God has truly blessed us.
I was just wondering if anyone out there had the same or similar kind of MS.
Please respond only if you are an adult.
Sponsor
topjars
11-05-2006, 04:06 AM
Yep Im an adult (50):) and have relapsing remitting ms too.
Ive been dx a few years now and its fair to say that the REBIF Ive been on has curbed further attacks.
Ive similar symtoms...
Spasms in legs (normally when Im sitting or lying in a relaxed state) numb fingers and foot on RH side and a tingling/numb/woody feeling in LH side thigh.
I consider myself "lucky" that Im still able to get around.:blob_fire
PS:Ive been back from an o/seas trip to the States 16 weeks now and I survived the heat / fatigue associated with MS-never made Arizona but enjoyed California,Houston and Nevada
Hang in there and get on REBIF,fishoil and the odd bit of MJ
Gary
Ive been dx a few years now and its fair to say that the REBIF Ive been on has curbed further attacks.
Ive similar symtoms...
Spasms in legs (normally when Im sitting or lying in a relaxed state) numb fingers and foot on RH side and a tingling/numb/woody feeling in LH side thigh.
I consider myself "lucky" that Im still able to get around.:blob_fire
PS:Ive been back from an o/seas trip to the States 16 weeks now and I survived the heat / fatigue associated with MS-never made Arizona but enjoyed California,Houston and Nevada
Hang in there and get on REBIF,fishoil and the odd bit of MJ
Gary
MSNik
11-05-2006, 08:09 PM
Hi Simbamojo01-
I just wanted to tell you that 85% of MS patients have relapsing- remittant MS. If you need more info on the stats, please look into the national ms society. They give the most complete and correct info.
You definately want your wife to have this type....although her symptoms sound very difficult, and I can identify. Ive only had the numbness and burning (its called Parastastia) for 3 months, its not going away at all.
My docs are more concerned with me having Progressive MS, which is only about 15% of MS cases. Thats the one you dont want to have! IT cannot be treated with disease modifying drugs. As Gary said, I too, am on Rebif, and love it..at least, I love the fact that I am doing everything I can do to keep this at bay...They dont know for sure if mine is Progressive or Remittant/relapsing..so in the meantime, they keep me on this Rebif, in order to try to keep relapses away. So far, so good, but I have only been on it for a few months. MRI;s tell the tale, and since you only get one every 6 months or so, I have some time to go before I find out if the Rebif is working or not.
Gary is right though, get her on a drug, whichever one is right for her, and fishoil isnt a bad idea either, its an anti inflamatory which seems to help alittle bit. Neurontin is a drug which also is used to help the numbness....you need to talk to her Neuro about all of this.
Good luck, God bless and keep us posted!
Nikki
I just wanted to tell you that 85% of MS patients have relapsing- remittant MS. If you need more info on the stats, please look into the national ms society. They give the most complete and correct info.
You definately want your wife to have this type....although her symptoms sound very difficult, and I can identify. Ive only had the numbness and burning (its called Parastastia) for 3 months, its not going away at all.
My docs are more concerned with me having Progressive MS, which is only about 15% of MS cases. Thats the one you dont want to have! IT cannot be treated with disease modifying drugs. As Gary said, I too, am on Rebif, and love it..at least, I love the fact that I am doing everything I can do to keep this at bay...They dont know for sure if mine is Progressive or Remittant/relapsing..so in the meantime, they keep me on this Rebif, in order to try to keep relapses away. So far, so good, but I have only been on it for a few months. MRI;s tell the tale, and since you only get one every 6 months or so, I have some time to go before I find out if the Rebif is working or not.
Gary is right though, get her on a drug, whichever one is right for her, and fishoil isnt a bad idea either, its an anti inflamatory which seems to help alittle bit. Neurontin is a drug which also is used to help the numbness....you need to talk to her Neuro about all of this.
Good luck, God bless and keep us posted!
Nikki
Erica Kane
11-06-2006, 08:44 AM
Hi,
I have RR MS too. Diagnosed in 1990, still walking today.:)
My case is really an interesting one. If you looked at me right now, you wouldn't have any idea I have MS, but when I have an exacerbation - I look like someone with a severe spinal cord injury. Can't walk, lift a fork, get dressed by myself - I'm a mess. I'm like a living, breathing miracle the way I come out of these things, I even amaze myself.;)
MS is a funny illness. You really can't let the bad days get you down, because you never know what's around the corner. Remission is bound to happen in time - so you have to hang in there. :D
I have RR MS too. Diagnosed in 1990, still walking today.:)
My case is really an interesting one. If you looked at me right now, you wouldn't have any idea I have MS, but when I have an exacerbation - I look like someone with a severe spinal cord injury. Can't walk, lift a fork, get dressed by myself - I'm a mess. I'm like a living, breathing miracle the way I come out of these things, I even amaze myself.;)
MS is a funny illness. You really can't let the bad days get you down, because you never know what's around the corner. Remission is bound to happen in time - so you have to hang in there. :D
dgibson70
11-06-2006, 10:21 AM
My doctor is certain I have MS, most likely relapsing-remitting, but can't definitely diagnose me as I've only had one attack. Even though I'm only probable MS, he's certain enough that he has me on Avonex. I've done quite a bit of research and it seems that the majority of people with the RR kind remain ambulatory throughout their lives. Of course there's the occasional bout of unstable walking or being wheelchair bound, but most go into remission and are back to as normal as you can be with this disease again. That's the good thing (if there is one) of RR, you do have periods of no symptoms and those periods can last years. Your wife just might be one of the lucky ones who goes months to years in remission.
Good luck to her and you and keep posting - it does help!
Good luck to her and you and keep posting - it does help!
rachel4123
11-06-2006, 03:36 PM
Does anyone know how long the attacks happen for RR type? And what consitutes and "attack"? Does something need to go numb or can you just feel like crap and have all your extremities feel tingly/shaky and jumpy?
I have not been dx yet, but have a feeling I have this. My only symptom for the past 2 years has been imbalnce/nausea that I have almost all the time. some days better and sometimes I go a month without feeling it/. Drs don't seem to know...think it could be an inner ear disorder, but an MS neuro said it "could" be MS. Getting another MRI next week.
For the past 2 weeks I have felt jittery, tingly hands, feet, feelign of just my body not wanting to move, although I do move. Make sense to anyoen? I am wondering if I am having an Attack, even though I don't even know I have MS yet. I am quite frustrated to say the least.
Rachel
I have not been dx yet, but have a feeling I have this. My only symptom for the past 2 years has been imbalnce/nausea that I have almost all the time. some days better and sometimes I go a month without feeling it/. Drs don't seem to know...think it could be an inner ear disorder, but an MS neuro said it "could" be MS. Getting another MRI next week.
For the past 2 weeks I have felt jittery, tingly hands, feet, feelign of just my body not wanting to move, although I do move. Make sense to anyoen? I am wondering if I am having an Attack, even though I don't even know I have MS yet. I am quite frustrated to say the least.
Rachel
dgibson70
11-06-2006, 05:39 PM
I accidentally posted twice and I didn't know how to delete so ignore this little post here.
dgibson70
11-06-2006, 05:41 PM
I cut and pasted this next part from the MS Society webpage. Easier than trying to state it in my own words.
An exacerbation (also known as an attack, a relapse, or a flare) is a sudden worsening of an MS symptom or symptoms, or the appearance of new symptoms, which lasts at least 24 hours and is separated from a previous exacerbation by at least one month. The most common disease course in MS, called relapsing-remitting MS, is characterized by clearly defined acute exacerbations, followed by complete or partial recovery with no progression of the disease between attacks.
An attack can last anywhere from days to weeks to even months. Did your initial MRI show lesions? In order for your doctor to definitively diagnose you, you'll need other tests besides an MRI like a spinal tap, blood work and evoked potential tests. Remission also doesn't mean a complete stop to all symptoms, just that the current attack being experienced has gotten better. MS is disease of rule out since it's symptoms mimic so many other things. It can be a challenge to get a clear answer one way or the other so I wish you good luck and quick diagnosis, whatever it turns out to be.
An exacerbation (also known as an attack, a relapse, or a flare) is a sudden worsening of an MS symptom or symptoms, or the appearance of new symptoms, which lasts at least 24 hours and is separated from a previous exacerbation by at least one month. The most common disease course in MS, called relapsing-remitting MS, is characterized by clearly defined acute exacerbations, followed by complete or partial recovery with no progression of the disease between attacks.
An attack can last anywhere from days to weeks to even months. Did your initial MRI show lesions? In order for your doctor to definitively diagnose you, you'll need other tests besides an MRI like a spinal tap, blood work and evoked potential tests. Remission also doesn't mean a complete stop to all symptoms, just that the current attack being experienced has gotten better. MS is disease of rule out since it's symptoms mimic so many other things. It can be a challenge to get a clear answer one way or the other so I wish you good luck and quick diagnosis, whatever it turns out to be.
simbamojo01
11-14-2006, 03:26 PM
Yep Im an adult (50):) and have relapsing remitting ms too.
Ive been dx a few years now and its fair to say that the REBIF Ive been on has curbed further attacks.
Ive similar symtoms...
Spasms in legs (normally when Im sitting or lying in a relaxed state) numb fingers and foot on RH side and a tingling/numb/woody feeling in LH side thigh.
I consider myself "lucky" that Im still able to get around.:blob_fire
PS:Ive been back from an o/seas trip to the States 16 weeks now and I survived the heat / fatigue associated with MS-never made Arizona but enjoyed California,Houston and Nevada
Hang in there and get on REBIF,fishoil and the odd bit of MJ
Gary
Top,
Thanks for that note of encouragement. It is nice to see that people can still function and lead a "normal" life.
My wife was not given any drugs. The Dr. figuered with the reoccurance happening so far apart and only the current open lesion giving her not increasing fits. That it would be better to not have her on the regimine of drugs.
I am sure that knowing my wife this is a plus. I have done some reading and found that flaxseed oil helps tremendously, so I am trying to get her to take them each day although, she hates taking stuff and if I don't put it in front of her, she won't take it.
Ive been dx a few years now and its fair to say that the REBIF Ive been on has curbed further attacks.
Ive similar symtoms...
Spasms in legs (normally when Im sitting or lying in a relaxed state) numb fingers and foot on RH side and a tingling/numb/woody feeling in LH side thigh.
I consider myself "lucky" that Im still able to get around.:blob_fire
PS:Ive been back from an o/seas trip to the States 16 weeks now and I survived the heat / fatigue associated with MS-never made Arizona but enjoyed California,Houston and Nevada
Hang in there and get on REBIF,fishoil and the odd bit of MJ
Gary
Top,
Thanks for that note of encouragement. It is nice to see that people can still function and lead a "normal" life.
My wife was not given any drugs. The Dr. figuered with the reoccurance happening so far apart and only the current open lesion giving her not increasing fits. That it would be better to not have her on the regimine of drugs.
I am sure that knowing my wife this is a plus. I have done some reading and found that flaxseed oil helps tremendously, so I am trying to get her to take them each day although, she hates taking stuff and if I don't put it in front of her, she won't take it.
simbamojo01
11-14-2006, 03:39 PM
Hi Simbamojo01-
I just wanted to tell you that 85% of MS patients have relapsing- remittant MS. If you need more info on the stats, please look into the national ms society. They give the most complete and correct info.
You definately want your wife to have this type....although her symptoms sound very difficult, and I can identify. Ive only had the numbness and burning (its called Parastastia) for 3 months, its not going away at all.
My docs are more concerned with me having Progressive MS, which is only about 15% of MS cases. Thats the one you dont want to have! IT cannot be treated with disease modifying drugs. As Gary said, I too, am on Rebif, and love it..at least, I love the fact that I am doing everything I can do to keep this at bay...They dont know for sure if mine is Progressive or Remittant/relapsing..so in the meantime, they keep me on this Rebif, in order to try to keep relapses away. So far, so good, but I have only been on it for a few months. MRI;s tell the tale, and since you only get one every 6 months or so, I have some time to go before I find out if the Rebif is working or not.
Gary is right though, get her on a drug, whichever one is right for her, and fishoil isnt a bad idea either, its an anti inflamatory which seems to help alittle bit. Neurontin is a drug which also is used to help the numbness....you need to talk to her Neuro about all of this.
Good luck, God bless and keep us posted!
Nikki
MSNIK,
Thank you for your openess. About 8 or 9 years ago, we went to a neuro and he did the usual tests and while he only saw a spot he was not that concerned although he did mention a possiblity of MS. He said that if the symptoms got any worse or did not go away they would have to do a battery of tests. We only saw that particular Dr. once after for the test results because the numbness went away and she was back to her regular self.
Forward about three years, and the symptoms came back and she met with a new nuero at Mayo. He diagnosed the RR and said that he did not think he could be definitive enough to say that it was MS. He said that they were going to be doing a clinical study soon and that if her symptoms continued that she would be consulted as to whether she wanted to go on the drug study. Then the symptoms stopped and she was ok again.
Forward to another 2 1/2 to 3yrs and a new round only as I described when I started this thread, the symptoms of the numb hands and feet have not gone away. She has increased symp. when she exercises but the now, new nuero (other one's personality clashed with ours) says that she still does not have what she feels is severe enough symptoms to be on any statins.
She is ok with all of this or at least as ok as one can be. I just figured the more information I could gather the better able I would be to help her when and if the time comes.
I just wanted to tell you that 85% of MS patients have relapsing- remittant MS. If you need more info on the stats, please look into the national ms society. They give the most complete and correct info.
You definately want your wife to have this type....although her symptoms sound very difficult, and I can identify. Ive only had the numbness and burning (its called Parastastia) for 3 months, its not going away at all.
My docs are more concerned with me having Progressive MS, which is only about 15% of MS cases. Thats the one you dont want to have! IT cannot be treated with disease modifying drugs. As Gary said, I too, am on Rebif, and love it..at least, I love the fact that I am doing everything I can do to keep this at bay...They dont know for sure if mine is Progressive or Remittant/relapsing..so in the meantime, they keep me on this Rebif, in order to try to keep relapses away. So far, so good, but I have only been on it for a few months. MRI;s tell the tale, and since you only get one every 6 months or so, I have some time to go before I find out if the Rebif is working or not.
Gary is right though, get her on a drug, whichever one is right for her, and fishoil isnt a bad idea either, its an anti inflamatory which seems to help alittle bit. Neurontin is a drug which also is used to help the numbness....you need to talk to her Neuro about all of this.
Good luck, God bless and keep us posted!
Nikki
MSNIK,
Thank you for your openess. About 8 or 9 years ago, we went to a neuro and he did the usual tests and while he only saw a spot he was not that concerned although he did mention a possiblity of MS. He said that if the symptoms got any worse or did not go away they would have to do a battery of tests. We only saw that particular Dr. once after for the test results because the numbness went away and she was back to her regular self.
Forward about three years, and the symptoms came back and she met with a new nuero at Mayo. He diagnosed the RR and said that he did not think he could be definitive enough to say that it was MS. He said that they were going to be doing a clinical study soon and that if her symptoms continued that she would be consulted as to whether she wanted to go on the drug study. Then the symptoms stopped and she was ok again.
Forward to another 2 1/2 to 3yrs and a new round only as I described when I started this thread, the symptoms of the numb hands and feet have not gone away. She has increased symp. when she exercises but the now, new nuero (other one's personality clashed with ours) says that she still does not have what she feels is severe enough symptoms to be on any statins.
She is ok with all of this or at least as ok as one can be. I just figured the more information I could gather the better able I would be to help her when and if the time comes.
simbamojo01
11-14-2006, 03:43 PM
Hi,
I have RR MS too. Diagnosed in 1990, still walking today.:)
My case is really an interesting one. If you looked at me right now, you wouldn't have any idea I have MS, but when I have an exacerbation - I look like someone with a severe spinal cord injury. Can't walk, lift a fork, get dressed by myself - I'm a mess. I'm like a living, breathing miracle the way I come out of these things, I even amaze myself.;)
MS is a funny illness. You really can't let the bad days get you down, because you never know what's around the corner. Remission is bound to happen in time - so you have to hang in there. :D
Wow! What a story. I hope you have fewer of the bad than the good. R U on any meds?
It is an interesting illness seems to attach itself to just about anyone for no appearant reason.
I pray that God gives you peace with this.
I have RR MS too. Diagnosed in 1990, still walking today.:)
My case is really an interesting one. If you looked at me right now, you wouldn't have any idea I have MS, but when I have an exacerbation - I look like someone with a severe spinal cord injury. Can't walk, lift a fork, get dressed by myself - I'm a mess. I'm like a living, breathing miracle the way I come out of these things, I even amaze myself.;)
MS is a funny illness. You really can't let the bad days get you down, because you never know what's around the corner. Remission is bound to happen in time - so you have to hang in there. :D
Wow! What a story. I hope you have fewer of the bad than the good. R U on any meds?
It is an interesting illness seems to attach itself to just about anyone for no appearant reason.
I pray that God gives you peace with this.
dgibson70
11-15-2006, 08:13 AM
Just something to keep in mind. Being on any of the CRABs drugs is a personal decision but the earlier you begin the shots, the better they work.
Good luck!
Good luck!
MSNik
11-15-2006, 05:01 PM
Youre a good man, and you are doing the right thing. Read up on MS all you can, but be very careful, even things I am reading in this thread are really sketchy as far as whether or not they work. For instance, Supplements, are Not FDA approved, and although they may reduce inflamation, they may also increase the immune system, and thats REALLY NOT GOOD for people with MS, our immune systems are already in overdrive! So, read up, but mostly talk to people connected with the National MS society, or your local chapter of Ms society..
Find doctors who you LIKE, personality clashes happen, and its not fun to deal with. Also, its not unusual at all for the battery of tests to take forever and a diagnosis to take even longer...thats good, in some ways, it means the symptoms are not showing themselves in any clear way and they are far enough apart not to be causing much distress at this time....but as you stated, the future is uncertain, and knowing what you are looking at is good, but scaring yourself is bad...not everyone developes the same symptoms and most everyone has them in a differnt order..
so, good luck to you. I wish your family well, and I admire you for what you are doing.
Regards,
Nikki
Find doctors who you LIKE, personality clashes happen, and its not fun to deal with. Also, its not unusual at all for the battery of tests to take forever and a diagnosis to take even longer...thats good, in some ways, it means the symptoms are not showing themselves in any clear way and they are far enough apart not to be causing much distress at this time....but as you stated, the future is uncertain, and knowing what you are looking at is good, but scaring yourself is bad...not everyone developes the same symptoms and most everyone has them in a differnt order..
so, good luck to you. I wish your family well, and I admire you for what you are doing.
Regards,
Nikki
AllyG
11-16-2006, 05:04 AM
Hi,
I have RR MS also. Diagnosed just over 3 years ago at 26. I've had one minor relapse (numbness in face) & 1 severe relapse shortly after which is when I was diagnosed. I went on Rebif 1 mth after relapse & have been on it since with no relapses. Thank God. I hope I continue to do this well. My aunt is 40 & was diagnosed almost 10yrs ago. She was also put on Rebif straight away & has never had any relapses. You would never know she had MS. Went on to have 2 lovely children with no complications.
Although I am considering changing to LDN as a treatment, Rebif certainly seem to be working for me at the moment.
You are right - we're blessed to have this kind, it could be a lot worse. Take care:wave:
I have RR MS also. Diagnosed just over 3 years ago at 26. I've had one minor relapse (numbness in face) & 1 severe relapse shortly after which is when I was diagnosed. I went on Rebif 1 mth after relapse & have been on it since with no relapses. Thank God. I hope I continue to do this well. My aunt is 40 & was diagnosed almost 10yrs ago. She was also put on Rebif straight away & has never had any relapses. You would never know she had MS. Went on to have 2 lovely children with no complications.
Although I am considering changing to LDN as a treatment, Rebif certainly seem to be working for me at the moment.
You are right - we're blessed to have this kind, it could be a lot worse. Take care:wave:
MSNik
11-16-2006, 09:09 AM
Hi. Thanks for sharing that. I sure would love to hear more about LDN...in this part of the country, it doesnt appear it is recieving too much support, although the work which is being done worldwide, is undisputably helping! Id really like to hear if you are considering doing this with your Neuro's blessing, or if you are doing it thru some other type of dr...if you feel comortable, please share with us what it is you are considering, and why.
Thanks for your post. Good to know at least for now, that my Rebif has a great chance of working!
Nikki
Thanks for your post. Good to know at least for now, that my Rebif has a great chance of working!
Nikki
AllyG
11-16-2006, 09:53 AM
Hi Nikki,
I have yet to see my neuro about this. I'll be waiting until at least December for an appointment & I'm not sure she'll go with it.
If its bad in America - Ireland is 10 times worse!! Not the best for research & alternative treatments. My neuro only seems interested in Rebif & nothing else - you'd think they paid her to sponsor them!!! They probably do!
I read a fair bit on LDN & decided I am young enough to give it a go - I can always go back to Rebif. I know I'm going to have a fight on my hands but I'm willing to give it a go.
If you are interested in LDN you should read a book called "Up the Creek with a Paddle" by Mary Anne Boyle Brady. Her husband has progressive MS & this was/is the only treatment they were happy with. Good book - plenty of info.
If I get anywhere with my doc/neuro I will let you know. Take care.
I have yet to see my neuro about this. I'll be waiting until at least December for an appointment & I'm not sure she'll go with it.
If its bad in America - Ireland is 10 times worse!! Not the best for research & alternative treatments. My neuro only seems interested in Rebif & nothing else - you'd think they paid her to sponsor them!!! They probably do!
I read a fair bit on LDN & decided I am young enough to give it a go - I can always go back to Rebif. I know I'm going to have a fight on my hands but I'm willing to give it a go.
If you are interested in LDN you should read a book called "Up the Creek with a Paddle" by Mary Anne Boyle Brady. Her husband has progressive MS & this was/is the only treatment they were happy with. Good book - plenty of info.
If I get anywhere with my doc/neuro I will let you know. Take care.
MSNik
11-16-2006, 12:35 PM
thank you for your information and for suggesting the read...good luck to you! Ireland, US, China...we are all in the same boat. I look forward to hearing from you in December, after you see your Neuro. I want to know what he/she says about LDN, okay?? My Neuro is dead set against it, but Im looking for someone who might be willing to try it. Ive only been on Rebif 2 months, so I should probably wait until at least 6 months to see what the next MRI brings...but honestly, I dont like the idea of doing these injections...Id love to find out more about LDN.
I may start a post about it after the holidays...see who can give what info on it...
thank you again. Good Luck..
Keep me posted.
Nikki
I may start a post about it after the holidays...see who can give what info on it...
thank you again. Good Luck..
Keep me posted.
Nikki
AllyG
11-25-2006, 06:43 PM
Hi Nikki
Just thought I'd let you know. Went to my doctor for another matter altogether but mentioned to him that I was interested in LDN. He basically shot me down. Said he knew nothing about it & couldnt help me. He also said my particular neuro wasnt prone to trying new meds. She seems to push for Rebif only - when I was starting treatment - I was steered away from Avonex & Copaxone. It seems like I would need to go to a neuro in Galway (I'm in Dublin) to have any hope.
I will still talk to my neuro but it doesnt look like she'll be much help.
Hope your neuros & docs are more openminded in the states - Ireland has a long way to come!!
Arlene
Just thought I'd let you know. Went to my doctor for another matter altogether but mentioned to him that I was interested in LDN. He basically shot me down. Said he knew nothing about it & couldnt help me. He also said my particular neuro wasnt prone to trying new meds. She seems to push for Rebif only - when I was starting treatment - I was steered away from Avonex & Copaxone. It seems like I would need to go to a neuro in Galway (I'm in Dublin) to have any hope.
I will still talk to my neuro but it doesnt look like she'll be much help.
Hope your neuros & docs are more openminded in the states - Ireland has a long way to come!!
Arlene