AngelOfLight82
11-06-2006, 08:42 PM
I was wondering how you can tell if someone is having an attack especially for someone who has not been diagnosed with MS yet???
Also, I understand that there are like 3 or more types of MS, but which one is the worst & which one is better to have???
Thanks! ;)
XOXO
Also, I understand that there are like 3 or more types of MS, but which one is the worst & which one is better to have???
Thanks! ;)
XOXO
Sponsor
MSNik
11-06-2006, 11:12 PM
Hi Angel, First of all, I am going to suggest that you look into the National Multiple Scerlosis for all the information you are looking for. It has very good and proven info which will answer most of your questions.
As far as the 3 types of MS, there is Remittant/Relapsing, which is what 85% of MS patients have- this is also the type which is treated with disease modifying drugs such as Rebif, Copxone and others....the second type is Primiary Progressive, followed by Secondary Progressive. Both, are exactly what they sound like, more progressive types of the disease which are not treatable with the drugs. Since there is no cure for MS, the drugs are only used to attempt to reduce the amount of legions on the brain, and prevent new ones from forming. By doing this, the drugs are supposed to help prevent relapses, and prevent new episodes or excaberations from happening. The drugs have about a 70% chance of working....
ITs very hard to diagnose which MS one has, until they have had it for awhile. Im a perfect example. Ive only been diagnosed for 2 months, with only one major excaberation- its still ongoing and IM still miserable. Is it relapsing-remittant? or is it (Because it isnt going away) progressive? The docs have no way of telling. Some epiosodes can last 6 months or longer, others last only a short time. Ive been treated with IV Steroids, and nothing got better. Think Im scared? You know it! However, on the chance that it is remittant, and its just taking a long time for my symptoms to go away, the docs decided to start me on drugs...Ive been on Rebif for about a month now. Im actually glad I am. Im not having any side effects with it, and every shot I give myself, I tell myself, this is to prevent me from ever feeling like this again in the future..will it work? Gosh, I hope so.
How does one know if they are having an attack? Its pretty easy to know. THe symptoms are there....they dont go away overnight, and they dont seem to get better with motrin or tylenol. Symptoms range, all sorts of ways...read this board, and youll see that NO TWO MS cases are alike. My sytmpoms were numbness, tingling, burning in my fingers first, then my legs and feet...it hasnt gone away in 3 months....others have the eye problems, blurred vision, pixelated site, loss of peripheral vision...still others have bladder and bowel issues, or even swallowing problems. No two cases are ever alike, which is what makes MS so hard to diagnosis. Ther really is no "better" type of MS to have.....eventually, most people do wind up progresing to Progressive, but not always. You hear about people having MS for 30+ years and being fully functional, excpet when they have attacks....in the case of Progressive, you never totally get better, each attack gets worse...
Does this help you at all? Seriously, I hate to see you with SOO many questsions, although that is what we are all here for..so ask away! Have you seen a neuro? A MS specialist? Anyone at all? Call the national MS society, or look them up- there are a ton of answers, and really good solid information available, books and literature you can read both online and they will mail you...it will really help you to get your thoughts in order so that when you see a professional, you are both familiar with what they are talking about, and have questions of your own to ask.
One thing I hear here, all the time, which is GREAT Advice, is to keep a journal of any and all symptoms you are having...how long they last, when they start, etc. If you have ANY tests done, keep a record of when, by whom, and try to get all test results and keep them. This "history' is always required when you see a specialist, and having everything available for them to review saves both time and money!
Good luck...keep asking questions, you'll never know anything if you dont ask...but, please, dont scare yourself...MS can take years to diagnos and even if you are "lucky" like me, and get answers in just 3 months, you still wont necessarily feel better....its a waiting game this disease...
Hugs,
Nikki
As far as the 3 types of MS, there is Remittant/Relapsing, which is what 85% of MS patients have- this is also the type which is treated with disease modifying drugs such as Rebif, Copxone and others....the second type is Primiary Progressive, followed by Secondary Progressive. Both, are exactly what they sound like, more progressive types of the disease which are not treatable with the drugs. Since there is no cure for MS, the drugs are only used to attempt to reduce the amount of legions on the brain, and prevent new ones from forming. By doing this, the drugs are supposed to help prevent relapses, and prevent new episodes or excaberations from happening. The drugs have about a 70% chance of working....
ITs very hard to diagnose which MS one has, until they have had it for awhile. Im a perfect example. Ive only been diagnosed for 2 months, with only one major excaberation- its still ongoing and IM still miserable. Is it relapsing-remittant? or is it (Because it isnt going away) progressive? The docs have no way of telling. Some epiosodes can last 6 months or longer, others last only a short time. Ive been treated with IV Steroids, and nothing got better. Think Im scared? You know it! However, on the chance that it is remittant, and its just taking a long time for my symptoms to go away, the docs decided to start me on drugs...Ive been on Rebif for about a month now. Im actually glad I am. Im not having any side effects with it, and every shot I give myself, I tell myself, this is to prevent me from ever feeling like this again in the future..will it work? Gosh, I hope so.
How does one know if they are having an attack? Its pretty easy to know. THe symptoms are there....they dont go away overnight, and they dont seem to get better with motrin or tylenol. Symptoms range, all sorts of ways...read this board, and youll see that NO TWO MS cases are alike. My sytmpoms were numbness, tingling, burning in my fingers first, then my legs and feet...it hasnt gone away in 3 months....others have the eye problems, blurred vision, pixelated site, loss of peripheral vision...still others have bladder and bowel issues, or even swallowing problems. No two cases are ever alike, which is what makes MS so hard to diagnosis. Ther really is no "better" type of MS to have.....eventually, most people do wind up progresing to Progressive, but not always. You hear about people having MS for 30+ years and being fully functional, excpet when they have attacks....in the case of Progressive, you never totally get better, each attack gets worse...
Does this help you at all? Seriously, I hate to see you with SOO many questsions, although that is what we are all here for..so ask away! Have you seen a neuro? A MS specialist? Anyone at all? Call the national MS society, or look them up- there are a ton of answers, and really good solid information available, books and literature you can read both online and they will mail you...it will really help you to get your thoughts in order so that when you see a professional, you are both familiar with what they are talking about, and have questions of your own to ask.
One thing I hear here, all the time, which is GREAT Advice, is to keep a journal of any and all symptoms you are having...how long they last, when they start, etc. If you have ANY tests done, keep a record of when, by whom, and try to get all test results and keep them. This "history' is always required when you see a specialist, and having everything available for them to review saves both time and money!
Good luck...keep asking questions, you'll never know anything if you dont ask...but, please, dont scare yourself...MS can take years to diagnos and even if you are "lucky" like me, and get answers in just 3 months, you still wont necessarily feel better....its a waiting game this disease...
Hugs,
Nikki
duttin
11-07-2006, 12:20 AM
Angel,
I know if I'm having a relapse is when one side of my body don't move.I have PPMS,which I have symptoms daily that subside but never go completly away.
This disease is an idividual disease and effects each of us differently.My recent attack has effected my hearing and left me with nystagmus,abnormal movements of the eyes.
Each attack leaves some degree of abnormalities but I'm fully functional.It took about 18 months to get a DX.I have had symptoms that have been relentless from the beginning.My DX was not a normal DX as for the McDonald criteria.It was based on the duration of symptoms,lumbar puncture(Highly elevated myelin basic protein) MRI's(brain clear except for occipital atrophy)C-spine clear(spinal stenosis unknown origin)Evoked potential visual-borderline abnormal,samotosensory borderline abnormal.Several blood test ruled everything else out.EMG/NCS slowed conduction right leg,radiculopathy.
One must keep in mind when going through a diagnosis process of MS that not every symptom will be directly related to MS.Even after a DX,symptoms can be related to other origins.
When I first had symptoms I thought they were directly related to 2 failed lumbar surgeries.Footdrop,numbness tingling,electric shocks running down the leg.It wasn't until these symptoms and others started above the lumbar region.This is when I had a referral to a neurologist.It took me 3 to find one that would investigate these symptoms the first 2 chalked it up to the back surgeries.
Keep a journal,I can't stress that enough to everyone.Get copies of all test and DRs notes.This will help you and any furture Drs in the future.Any test I have done I get copies of all them this way I can keep my team of DRs updated especially my GP.
Learn all you can about MS,the web is full of info.
Toni
I know if I'm having a relapse is when one side of my body don't move.I have PPMS,which I have symptoms daily that subside but never go completly away.
This disease is an idividual disease and effects each of us differently.My recent attack has effected my hearing and left me with nystagmus,abnormal movements of the eyes.
Each attack leaves some degree of abnormalities but I'm fully functional.It took about 18 months to get a DX.I have had symptoms that have been relentless from the beginning.My DX was not a normal DX as for the McDonald criteria.It was based on the duration of symptoms,lumbar puncture(Highly elevated myelin basic protein) MRI's(brain clear except for occipital atrophy)C-spine clear(spinal stenosis unknown origin)Evoked potential visual-borderline abnormal,samotosensory borderline abnormal.Several blood test ruled everything else out.EMG/NCS slowed conduction right leg,radiculopathy.
One must keep in mind when going through a diagnosis process of MS that not every symptom will be directly related to MS.Even after a DX,symptoms can be related to other origins.
When I first had symptoms I thought they were directly related to 2 failed lumbar surgeries.Footdrop,numbness tingling,electric shocks running down the leg.It wasn't until these symptoms and others started above the lumbar region.This is when I had a referral to a neurologist.It took me 3 to find one that would investigate these symptoms the first 2 chalked it up to the back surgeries.
Keep a journal,I can't stress that enough to everyone.Get copies of all test and DRs notes.This will help you and any furture Drs in the future.Any test I have done I get copies of all them this way I can keep my team of DRs updated especially my GP.
Learn all you can about MS,the web is full of info.
Toni
topjars
11-08-2006, 05:43 AM
The first attack I remember...I couldnt write my signature <see below> in a guest book at a party one night:cool:
I couldnt comprehend in my own mind what I wanted to put on paper.
The second attack was a Nystagmus event where my eyeballs tended to catch up with me turning my head a split second after it had turned...if you know what i mean.
Weird that one...it last 20 hours !:dizzy:
I couldnt comprehend in my own mind what I wanted to put on paper.
The second attack was a Nystagmus event where my eyeballs tended to catch up with me turning my head a split second after it had turned...if you know what i mean.
Weird that one...it last 20 hours !:dizzy:
dgibson70
11-08-2006, 08:45 AM
The attack that let to me being seen by a neuro was my left leg felt heavy, weak and numb. Was dragging it around. I also had cold patches on my right leg. My GP sent me for a MRI of my back thinking pinched nerve. Within two weeks of my inital symptom, the numbness progressed up into my back and below my left breast. I then was referred to a neuro who had MRI of my brain and spine done. Spine was negative, brain showed lesions. Evoked potential test and blood work all fine. LP was positive for the o-bands. This all took place in less than a year but because I have not yet had a 2nd attack, my neuro can only diagnose me with probable MS. He explained to me that the diagnostic criteria handed down to doctors is really only for research purposes as hardly anyone meets it perfectly. But, it still prevents him from making a definitive diagnosis.
As you can see from the posts here, everyone is different but the attacks are obvious when they happen. What's not obvious is the reason for the symptoms, which makes the DX process so frustrating. Go see a neuro if you haven't already and what I try to stress to everyone who searching for an answer to what is going on with them is not to let yourself get stuck on thinking it has to be MS or it has to be whatever as you just might lose sight of what is really happening.
Good luck!
As you can see from the posts here, everyone is different but the attacks are obvious when they happen. What's not obvious is the reason for the symptoms, which makes the DX process so frustrating. Go see a neuro if you haven't already and what I try to stress to everyone who searching for an answer to what is going on with them is not to let yourself get stuck on thinking it has to be MS or it has to be whatever as you just might lose sight of what is really happening.
Good luck!
lilc
11-09-2006, 09:16 PM
You know, I'd been wondering the same thing. I think for some folks it is obvious - something happens that is quite literally, an ATTACK. But I'm having one now (I finally have to admit) that began as an occasional annoyance but is getting worse. (Left arm and neck up to my jaw go to sleep. Started with once every couple of days, now happens several times a day, and starting to affect my left leg.)
I think, like so much with MS, different people have different experiences. The bottom line is, if you are concerned, see a doctor!
I think, like so much with MS, different people have different experiences. The bottom line is, if you are concerned, see a doctor!