Aa
Confused Again, or Still
I've been reading the posts about what constitutes a new attack an how to tell, and I STILL can't tell. Since September my most significant symptoms have been tingling tongue, balance issues because of feeling as if the ground is moving, and aching in the backs of my legs.
The tongue stuff is still here. Over the months the balance part has VERY gradually improved to the point where I don't notice it much if at all. Maybe it's actually gone; maybe I'm just used to it. But in any case it's really no longer a factor.
Until recently the aching legs have stayed the same. The pain ranged from annoying to troublesome, though it was never truly awful. During the past couple of weeks the left side has gotten a lot worse, and now my butt on that side is involved too. And for the past two days a new issue has arisen. In addition to the pain on the left, I have a severe burning feeling there. This part is pretty significant.
So---------- With stable or gradually subsiding symptoms for many months, and now new problems in one area already affected, is this an exacerbation, or is it part and parcel of the same attack? It's worrisome that anything at all would last this long. I'm doing Copaxone and there's nothing else I can do, so no point in neuro intervention, but I'd still like to know how to characterize this.
Thanks for your help.
ess
The tongue stuff is still here. Over the months the balance part has VERY gradually improved to the point where I don't notice it much if at all. Maybe it's actually gone; maybe I'm just used to it. But in any case it's really no longer a factor.
Until recently the aching legs have stayed the same. The pain ranged from annoying to troublesome, though it was never truly awful. During the past couple of weeks the left side has gotten a lot worse, and now my butt on that side is involved too. And for the past two days a new issue has arisen. In addition to the pain on the left, I have a severe burning feeling there. This part is pretty significant.
So---------- With stable or gradually subsiding symptoms for many months, and now new problems in one area already affected, is this an exacerbation, or is it part and parcel of the same attack? It's worrisome that anything at all would last this long. I'm doing Copaxone and there's nothing else I can do, so no point in neuro intervention, but I'd still like to know how to characterize this.
Thanks for your help.
ess
Your question really started a great conversation and lots of information to all of us newbies Thank you!
and to all that posted thank you what a group of wise people.
I guess I am bumping this up as I think for us that are new this thread has tons of information.
Good luck and thank you for the post and all of you that keep responding.
Mary
and to all that posted thank you what a group of wise people.
I guess I am bumping this up as I think for us that are new this thread has tons of information.
Good luck and thank you for the post and all of you that keep responding.
Mary
You've gotten wonderful advice from the previous posters. Some of my symptoms never have gone completely away either. The numb tongue thing crops up from time to time for me as well. The balance issue, like yours, faded but is still there and I'll get what someone called in a previous post "swirlies" (I love that word!). I also still have the pain in my legs that gets worse during certain conditions but is always noticeable during the night. Plus, my vision problems are always there but gets worse on some days. But, certain symptoms like severe tremors, will last a week and slowly disappear. Who knows with this crazy disease!!!! It's maddening!!!!
My sister also has MS and is having symptoms that never completely going away, too. She tells me that she never has good days. In her words, "On some days I feel s**tty and on other days I feel s**ttier." She's having more severe mobility issues than I am. Her doctor is thinking that she's moving more into the secondary progressive MS and is being monitored (frequent MRI's, careful exams and documentation of symptoms). Her neuro changed her drug from Rebif to Tysabri (which she's starting on Tuesday!) for a more aggressive treatment (plus she was having an allergic reaction to her Rebif).
What she does is she calls the neuro's office when she's having pain that is significantly impacting her daily life and comfort level. The other day she called about a knife-like pain in her shoulder which caused pain in the day and wouldn't allow her to sleep longer than three hours. Her neuro had her come in and she got three of four steroid shots into her shoulder and she's doing better.
What I think you should also do, besides call your neuro for the pain your having, is to keep a calendar (maybe the one that you use for your Copaxone to keep track of where you gave your shots) and put on there your symptoms and severity. Show your neuro when you go to see him. This information may prove to be insightful--especially if there's some changes on your next MRI.
Take care, Ess.
Deb
My sister also has MS and is having symptoms that never completely going away, too. She tells me that she never has good days. In her words, "On some days I feel s**tty and on other days I feel s**ttier." She's having more severe mobility issues than I am. Her doctor is thinking that she's moving more into the secondary progressive MS and is being monitored (frequent MRI's, careful exams and documentation of symptoms). Her neuro changed her drug from Rebif to Tysabri (which she's starting on Tuesday!) for a more aggressive treatment (plus she was having an allergic reaction to her Rebif).
What she does is she calls the neuro's office when she's having pain that is significantly impacting her daily life and comfort level. The other day she called about a knife-like pain in her shoulder which caused pain in the day and wouldn't allow her to sleep longer than three hours. Her neuro had her come in and she got three of four steroid shots into her shoulder and she's doing better.
What I think you should also do, besides call your neuro for the pain your having, is to keep a calendar (maybe the one that you use for your Copaxone to keep track of where you gave your shots) and put on there your symptoms and severity. Show your neuro when you go to see him. This information may prove to be insightful--especially if there's some changes on your next MRI.
Take care, Ess.
Deb
ess dearheart,
My course of MS over the past decade, has never seen complete recovery from my first attack. Some of the symptoms remained and seemed to never go away. Even after 13 years of being diagnosed with this disease. I have real difficulty figuring out when I am going into a flair up. Really, I mean that. Sometimes it difficult to tell.
I do notice that I will have a worsening of symptoms and some sensory symptoms will sneek in. My last MRI showed no new activity, none in the past 6 weeks, but at sometime between my MRI of last year and the one two months ago, I develped 4 more lesions. Ess I cannot say for certain WHEN that happened. I don't know.
One thing to remember, is that MS is always active in the body, whether it is doing it's "scar" thing or not. My course is such an up and down thing, that I cannot really say, "Ess I think that I am currently in a flair up." I just can't be certain.
Some people have very dinstinct relapses and remissions. Very dinstinct. Even with all the information we have that Quix and you, most precious lady have written up for our Health Pages, I still; after all these years find it confusing. All I have to concentrate on is that I have MS and I need to do what I have to do, to try and prevent further damage and hopefully further attacks with the drug of choice; Copaxone. I have to have faith that this drug is going to prevent what it can and realize that it's better than do nothing at all.
I have to agree with "Ditzilla" (as she calls herself now..silly girl) it's best to call your doctor. I really don't know how long it takes for the Copaxone to start doing it's thing either. I have only been on it for 7 weeks and know that you just started it as well.
I hope you get to feeling better. It's been a long time since we have "talked"
God bless you and be well,
Heather
My course of MS over the past decade, has never seen complete recovery from my first attack. Some of the symptoms remained and seemed to never go away. Even after 13 years of being diagnosed with this disease. I have real difficulty figuring out when I am going into a flair up. Really, I mean that. Sometimes it difficult to tell.
I do notice that I will have a worsening of symptoms and some sensory symptoms will sneek in. My last MRI showed no new activity, none in the past 6 weeks, but at sometime between my MRI of last year and the one two months ago, I develped 4 more lesions. Ess I cannot say for certain WHEN that happened. I don't know.
One thing to remember, is that MS is always active in the body, whether it is doing it's "scar" thing or not. My course is such an up and down thing, that I cannot really say, "Ess I think that I am currently in a flair up." I just can't be certain.
Some people have very dinstinct relapses and remissions. Very dinstinct. Even with all the information we have that Quix and you, most precious lady have written up for our Health Pages, I still; after all these years find it confusing. All I have to concentrate on is that I have MS and I need to do what I have to do, to try and prevent further damage and hopefully further attacks with the drug of choice; Copaxone. I have to have faith that this drug is going to prevent what it can and realize that it's better than do nothing at all.
I have to agree with "Ditzilla" (as she calls herself now..silly girl) it's best to call your doctor. I really don't know how long it takes for the Copaxone to start doing it's thing either. I have only been on it for 7 weeks and know that you just started it as well.
I hope you get to feeling better. It's been a long time since we have "talked"
God bless you and be well,
Heather
I'M GONNA STICK MY NOSE OUT HERE, EVEN WITH RRMS,ATTACKS OR MINIMAL FLAIR-UPS DO OCCUR.IT CAN BE A SYMPTOM THAT WAS THERE AND IT SUB-SIDED AND THEN RETURNED WITH AN EVENGENCE.
ESS,SOMETIMES WE ARE LEFT WITH SOME RESIDUAL SIDE -EFFECTS OF SYMPTOMS. IT STINKS!!!!!
THE RULE OF THUMB IS,HAS BEEN THERE FOR 24-48 HOURS.THIS SYMPTOM FLAIR-UP DOESN'T MEAN THAT THE COPAXONE ISN'T WORKING OR THAT THE MS IS PROGRESSING.
WITH YOUR CONCERNS,PLEASE CALL THE NEURO'S OFFICE,AT LEAST ITS DOCUMENTED AND HE MAY ADD A MED TO TRY TO RELEIVE IT.
JUST MY THOUGHTS.
T
ESS,SOMETIMES WE ARE LEFT WITH SOME RESIDUAL SIDE -EFFECTS OF SYMPTOMS. IT STINKS!!!!!
THE RULE OF THUMB IS,HAS BEEN THERE FOR 24-48 HOURS.THIS SYMPTOM FLAIR-UP DOESN'T MEAN THAT THE COPAXONE ISN'T WORKING OR THAT THE MS IS PROGRESSING.
WITH YOUR CONCERNS,PLEASE CALL THE NEURO'S OFFICE,AT LEAST ITS DOCUMENTED AND HE MAY ADD A MED TO TRY TO RELEIVE IT.
JUST MY THOUGHTS.
T
Yikes, the idea of SPMS has been in the back of my mind for some time, and I don't want to move it forward unless I really have to. For now I take refuge in the thought that I've had only 16 Copaxone shots so maybe it needs time to work.
Erica, thank you for clarifying meralgia peresthetica. I still don't know if that's what's happening, since it's not on the outside of my thighs and there is no numbness or tingling there. Of course everyone is different.
What a disease.
ess
Erica, thank you for clarifying meralgia peresthetica. I still don't know if that's what's happening, since it's not on the outside of my thighs and there is no numbness or tingling there. Of course everyone is different.
What a disease.
ess
What I meant was, it's not something apart from ms, it IS part of the ms, same as trigeminal neuralgia. The pain in ms is due to many different nerves. They are named for their locations, etc. My facial pain is trigeminal neuralgia, my leg pain is meralgia paresthetica, that both, for me are bilateral, means they are symptoms of ms.
I just got off the phone with the ms society of canada. I called to ask about my bilateral facial and leg pain, and described them, according to him, as classic ms symptoms. That they were bilateral meant they weren't anything else. He told me I may have to wait for a while to see lesions, that they will just likely redo my mris regularly. But that eventually there would be lesions.
Meralgia paresthetica, in ms, is due to demyelination of the lateral femoal cutaneous nerve. Still demyelinating disease. Just another sign
Erica
I just got off the phone with the ms society of canada. I called to ask about my bilateral facial and leg pain, and described them, according to him, as classic ms symptoms. That they were bilateral meant they weren't anything else. He told me I may have to wait for a while to see lesions, that they will just likely redo my mris regularly. But that eventually there would be lesions.
Meralgia paresthetica, in ms, is due to demyelination of the lateral femoal cutaneous nerve. Still demyelinating disease. Just another sign
Erica
Perhaps your situation warrants a look at the different types of MS. I went through a similar experience where I was getting progressively worse on the Rebif. I was initially diagnosed with Relapsing-Remitting MS (RRMS) which is defined by distinct attacks followed by remission. This does not always mean 100% remission especially as the disease progresses. This was the case for me.
When I was continuing to have 'attacks' without much relief while taking Rebif, my diagnosis was changed to Secondary Progressive MS. Below are basic definitions of different types of MS.
Benign MS is a misleading term since it would seem to imply a disease that has no symptoms. Some people are diagnosed with this initially after an initial attack when they experience little or no progression. They can however exhibit cognitive dysfunction, short-term memory problems and show evidence of brain or spinal cord lesions.
Relapsing Remitting MS is the most common form of the disease. Patients tend to experience an attack or series of attacks followed by complete or partial remission. As the disease progresses, the remissions seem to offer less and less relief.
Secondary Progressive MS is a second stage, chronic, progressive form of the disease where unlike the RRMS form of the disease there are no real periods of remission, only breaks in attack duration with no real recovery from symptoms although there may be minor relief from some.
Primary Progreesive MS (PPMS) is most commonly found in men. It is characterized by gradual clinical decline with no real distinct periods of remission. There may be temporary periods where the disease appears to plateau or level out. This may include some partial minor relief from some symptoms. However, the course of the disease is one of continual decline from the outset.
Progressive Relapsing MS (PRMS) is a rarer form of MS where the disease takes a progressive form from the outset with acute attacks throughout with no relief from accumulated symptoms. Unlike Primary Progressive MS, PRMS does not plateau.
Malignant MS (Marburg Variant) is a particularly aggressive form of the disease. Thankfully very rare, the highly aggressive form is defined by a swift and relentless decline to significant disability or even death often within a few weeks or months of the onset of the attack.
Chronic Progressive MS IS NOT a type of MS but rather a term that some physicians use to lump together the forms SPMS, PPMS, or PRMS.
Now that your brain is ready for a data dump, I have two points to make.
#1: It's possible that the course of your disease is changing especially if you are having new symptoms while on the Copaxone.
#2: I've learned over time what constitutes a 'new' attack for me. I'm sure it's different for everyone and perhaps a symptom journal would help you determine what your common factor is. For me, it's sudden, extreme fatigue. I have an issue with fatigue in general, but when it's sudden, severe and lasts I know something is up. No matter what kind of symptom I'm having, if it's accompanied by that type of fatigue it's a new attack. I don't know why, but for me, fatigue is my litmus test.
I agree that a call to your doc is in order. Perhaps Copaxone is not the right choice. My doc gave me a choice between Novantrone or Tysabri when the Rebif wasn't working. I chose the Novantrone, and was very pleased. Sometimes the steroids are necessary to help give your body a jump start. I think of it as the big kid on the playground holding back my immune system while my nerves make a run for it. In fact my newest course of Solu-Medrol was just delivered. I've kind of developed this ritual...the first time I took it, I stayed up all night. I was so hyped up, and had already made plans to paint my son's room while he was away. I had it done in three days. Now, I paint or do some sort of housecleaning whenever I have to do those awful but necessary drugs.
Keep fighting!
TC
When I was continuing to have 'attacks' without much relief while taking Rebif, my diagnosis was changed to Secondary Progressive MS. Below are basic definitions of different types of MS.
Benign MS is a misleading term since it would seem to imply a disease that has no symptoms. Some people are diagnosed with this initially after an initial attack when they experience little or no progression. They can however exhibit cognitive dysfunction, short-term memory problems and show evidence of brain or spinal cord lesions.
Relapsing Remitting MS is the most common form of the disease. Patients tend to experience an attack or series of attacks followed by complete or partial remission. As the disease progresses, the remissions seem to offer less and less relief.
Secondary Progressive MS is a second stage, chronic, progressive form of the disease where unlike the RRMS form of the disease there are no real periods of remission, only breaks in attack duration with no real recovery from symptoms although there may be minor relief from some.
Primary Progreesive MS (PPMS) is most commonly found in men. It is characterized by gradual clinical decline with no real distinct periods of remission. There may be temporary periods where the disease appears to plateau or level out. This may include some partial minor relief from some symptoms. However, the course of the disease is one of continual decline from the outset.
Progressive Relapsing MS (PRMS) is a rarer form of MS where the disease takes a progressive form from the outset with acute attacks throughout with no relief from accumulated symptoms. Unlike Primary Progressive MS, PRMS does not plateau.
Malignant MS (Marburg Variant) is a particularly aggressive form of the disease. Thankfully very rare, the highly aggressive form is defined by a swift and relentless decline to significant disability or even death often within a few weeks or months of the onset of the attack.
Chronic Progressive MS IS NOT a type of MS but rather a term that some physicians use to lump together the forms SPMS, PPMS, or PRMS.
Now that your brain is ready for a data dump, I have two points to make.
#1: It's possible that the course of your disease is changing especially if you are having new symptoms while on the Copaxone.
#2: I've learned over time what constitutes a 'new' attack for me. I'm sure it's different for everyone and perhaps a symptom journal would help you determine what your common factor is. For me, it's sudden, extreme fatigue. I have an issue with fatigue in general, but when it's sudden, severe and lasts I know something is up. No matter what kind of symptom I'm having, if it's accompanied by that type of fatigue it's a new attack. I don't know why, but for me, fatigue is my litmus test.
I agree that a call to your doc is in order. Perhaps Copaxone is not the right choice. My doc gave me a choice between Novantrone or Tysabri when the Rebif wasn't working. I chose the Novantrone, and was very pleased. Sometimes the steroids are necessary to help give your body a jump start. I think of it as the big kid on the playground holding back my immune system while my nerves make a run for it. In fact my newest course of Solu-Medrol was just delivered. I've kind of developed this ritual...the first time I took it, I stayed up all night. I was so hyped up, and had already made plans to paint my son's room while he was away. I had it done in three days. Now, I paint or do some sort of housecleaning whenever I have to do those awful but necessary drugs.
Keep fighting!
TC
Thank you all for your comments and suggestions. I did a little looking into Meralgia Paresthetica and the description doesn't sound like my symptoms. I'm already dealing with MS and sure don't need anything else! so I'm glad I don't match.
As to phoning my neuro, I will see what happens over the weekend. I've just finally gotten his none-too-swift secretary person to change my Copaxone prescription to 90 days rather than 30 (saves me $$ for the copay). You'd think that wouldn't be such a hard request to fathom, but it took a week. So I'd best let things be awhile. It's never wise to antagonize the neuro's gatekeeper. (Though I do have the neuro's email address, if needed.)
ess
As to phoning my neuro, I will see what happens over the weekend. I've just finally gotten his none-too-swift secretary person to change my Copaxone prescription to 90 days rather than 30 (saves me $$ for the copay). You'd think that wouldn't be such a hard request to fathom, but it took a week. So I'd best let things be awhile. It's never wise to antagonize the neuro's gatekeeper. (Though I do have the neuro's email address, if needed.)
ess
I don't know what constitutes a long dignosised member, but I have had my diagnosis since Janruary 03. One thing I have noticed is that alot of Doctors don't know all that much about MS. My first truly disturbing MS symptom was total loss of sight in my left eye. I was still waiting to get into a nuero to read my MRI that a PA had ordered, I was told that I would not regain my sight (which I did) and that I was lucky because I only hadn't been able to walk, swallow, breathe, or feel the floor or anything on my left side for 6 months.
I was offered ambien and handed my MRI report which didn't say I had MS just that they could find 10 lesions which showed contrast 2 of which were 1 inch in diameter.
Did you know that they have studies going on to look at direct correlations between hormone levels and hereditarily passed on predisposistion to auto immune disaeases such as MS, Lupus, RA, and the higher than normal levels of testosterone which supresses the natural melentonin hormone level.
If I remember right the articles about this study noted the lower MS patient numbers in the African American population and the known correlation to the hormone difference in that race vs the white population.
Good luck
I was offered ambien and handed my MRI report which didn't say I had MS just that they could find 10 lesions which showed contrast 2 of which were 1 inch in diameter.
Did you know that they have studies going on to look at direct correlations between hormone levels and hereditarily passed on predisposistion to auto immune disaeases such as MS, Lupus, RA, and the higher than normal levels of testosterone which supresses the natural melentonin hormone level.
If I remember right the articles about this study noted the lower MS patient numbers in the African American population and the known correlation to the hormone difference in that race vs the white population.
Good luck
Hi, there. I just posted something about leg pain. 'Sciatica or Meralgia Paresthetica Leg Pain'. It could be the same thing? Read up on it, see what you think.
I am also undiagnosed. I have issues with my tongue as well. I have lots of facial issues. They started with just a tingling tongue tip and itchy lips. It has changed over the last couple of years. My whole face is pretty much involved now. At the moment it's tolerable, so I'm not treating it. But the doctor had me on gabapentin (neurontin) and then lyric.
Good luck with things
Erica
I am also undiagnosed. I have issues with my tongue as well. I have lots of facial issues. They started with just a tingling tongue tip and itchy lips. It has changed over the last couple of years. My whole face is pretty much involved now. At the moment it's tolerable, so I'm not treating it. But the doctor had me on gabapentin (neurontin) and then lyric.
Good luck with things
Erica
Hey, s~
This is a good question -- one I'd like an answer to as well. I'd love to help, but I think this would be best left to one of the long-diagnosed members. Like you, my symtpoms come and go with varying degrees of intensity. It's so strange. And to top it off, as you well know, I have no real diagnosis to speak of. Just the hormone deficiency, which doesn't explain a thing.
I am sorry that these symptoms are increasing and giving you so much pain and burning. That must be so distracting to say the very least. Obnoxious and troublesome! And. like you say, you have started the treatment recently, so you wonder why the new increase in symptoms. I do, too.
I hope someone jumps in with an explanation. I really would feel better, though, if you phoned your doctor to let him know what's going on. Don't you think he ought to know? He has been so great in jumping right in with treatment for you. Maybe he'd give you steroids or something to help calm things down.
Like I said, I am not the one to comment here, but I do hope you feel better. Hang tight for better information.
Feel better,
*
This is a good question -- one I'd like an answer to as well. I'd love to help, but I think this would be best left to one of the long-diagnosed members. Like you, my symtpoms come and go with varying degrees of intensity. It's so strange. And to top it off, as you well know, I have no real diagnosis to speak of. Just the hormone deficiency, which doesn't explain a thing.
I am sorry that these symptoms are increasing and giving you so much pain and burning. That must be so distracting to say the very least. Obnoxious and troublesome! And. like you say, you have started the treatment recently, so you wonder why the new increase in symptoms. I do, too.
I hope someone jumps in with an explanation. I really would feel better, though, if you phoned your doctor to let him know what's going on. Don't you think he ought to know? He has been so great in jumping right in with treatment for you. Maybe he'd give you steroids or something to help calm things down.
Like I said, I am not the one to comment here, but I do hope you feel better. Hang tight for better information.
Feel better,
*
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