Sam,
There are actually 4 or 5 stages of MS, and although some look at them as progressive in states, they arent. Not everyone will progress to another state. 85% of people with MS have Remittant/ Relapsing and many will stay there thru the course of the disease. Progressive is broken down even further, primary progressive, secondary progressive, etc. The way that the disease is catagorized is simply by the amount of relapses you have, how fully (or partially) a recovery you make, the length of time it takes to make the recovery.
I started out with R/R. 10 months ago I got the dx. Within 3 months I had had 4 relapses (yes, I had started Rebif, but they say it takes up to 6 months for it to really begin working). During that time, my MS specialist changed my DX to secondary progressive, because quite simply I didnt recover from 2 of my episodes. Ten months later, I still have no feeling in my left hand or fingers (other than Pain and tingling). I also have never recovered as far as my gait. (walk). However, it has now been 7 more months and I have not had another relapse- so, the fact that this is secondary also is classified by the amount of time your body stays in remission...does it constantly have relapses, go into remission for short or long periods of time? Do you recover partially, fully ,or not at all....this is what makes the different classes of MS.
You should read up on this...obviously we cannot publish websites, but you know the national site. Give them a call or look them up. This info is really important to understand. However, I wouldnt worry about it. The odds are really good that the disease will NOT keep progressing; assuming you are getting good care and are taking some sort of MS Therapy Drug.
Good luck and I hope this helps..
Nikki
I was diagnosed with RRMS in 2001, after having that and talking to my neuros, I have had it since I was a teenager, but DRs passed it off as heat exhaustion, colds in the eye, and stress. I had another relapse in January this yr, and had another MRI the results were alot diff, he called me on the phone to tell me, he said it is progressing greatly, i said so it's progressive now? he said yes, and suggested Tysabri, I have my first Infusion in June, I see him the first week of May so he said he would explian more then, but if I got any worse to call him back asap, the Solumedrol Helped a great deal, and now all I have been having are my regular symptoms as usual, but they are worse. If I get good answers when I go in a few weeks I will come back and post to u again.
I was dxed in 2002 with RRMS. but for the last year or so I've been having short episodes when I say short I mean lasting about 20-24 hrs after I go to sleep at night (usually by meds prescribed) It will go away for a while and then return how long they stay away is different the symptoms are always different was told that if it doesnt last more than 24 hrs it is not a flair up so if it doesn't last for more than 24 hrs I don't complain nor inform my nero. just wondering if I should bring it up when I see him and if it could be progressing
Smaller neurological events may not be cause to contact your neurologist directly, as there isn't a lot they can do. But you should be keeping a diary be cataloging all incidents for your neurologist to review. Anything that persists for more than a few hours is worthy of bringing up.
That way, when you see you rneuro, you can discuss the smaller events and evaluate them in the wider context of your disease. Your neuro may choose to 'officially' check some up as true relapses. In the case or recurring problems associated with prior relapses the problem may be seen as a lingering problem from the prior attack and nothing new.
An important part of prescribing the ciorrect treatment for your MS is knowing what's going on. Keep a ledger and make this easier - as a PWMS you will likely forget about half the things that went wonky befor eyour next visit anyway!
Sam, Nathan is absoutely right in this case, you should be writing this stuff down and if you arent seeing your Neuro at least every 6 months, make an appt! You want to keep him/ her abreast of these episodes and let them make the decision as to how to handle them. HOWEVER, reading your post, Im not entirely convinced that you arent having a reaction to one of your meds..in which case, you really might want to put one call into the doctor and let them decide. You say these things are very short lived, and usually happen after taking a prescribed med...thats why im wondering. ...Nathan is also right...we, with MS, tend to think EVERY LITTLE Thing is an MS symtom, and we tend NOT to want to bother our doctors with every little thing, but by keeping track of everything, at least when we do see our docs, we can really show him what life is like on a weekly/ daily or as needed basis. They need this info to evaluate where we are in the progression of the disease.
If you are recovering 100% from these epsidoes, my guess is you arent progressing, just having a slew of new symtoms...however, if they are not entirely going back to 100% in between, then you are going to want to discuss that with your doctor....things which dont entirely return to normal are usually: Visison, tingling in an extremity which has been happening for over 6 months, and usually isnt helped by any medication, a gait/ walk issue which never fixes itself...things like that.....reoccuring headaches, or reoccuring weakness/ fatigue, unfortuantely are kind of par for the course with MS..
Hope this helps you alittle..
Feel better soon.
Nikki
I just came from the nero's office she gave me a solumedrol injection. And one more tomorrow.I am also on antibiotics for a sinus infection. Seen gp for the infection and notified the nero's office of the meds he gave me.
This is the 3rd time I have been there in a month so I asked if this was the same flair up and if it has never gotten better. It did seen to be better after the first injection.This is the 2nd time I've gotten steroids her reply was that she did not know. She is a practitioner and she has to talk with the nero. Every thing comes through him first. It just seemed that after a flair up it wasn't long before it came back. This time entirely new symptoms. It is the new symptoms and the closeness of the flair ups, That prompted me to ask this question.
Last edited by unclesam612; 04-19-2007 at 11:43 AM.
Hi Sam. I feel for you, you must be going thru a really hard time with trying to get answers on where your disease is at...
question for you. You said you got a solumedrol injection. Do you mean infusion? Ive had Solu-Medrol 3 times, but each time has been 1000mg given over the course of about an hour to an hour and a half for 5 days in a row! I can honestly say usually by day 2 I feel better, but they will not permit me to stop until Ive done all 5 days. Living with a shunt in my arm for 5 days is awful, but I have a home infusion company (nurse) who comes to my house, sets it all up for me and I have learned to do the flushes and tube changes myself...is this what you had, or was it really just a shot?? Ive never heard of that and would be interested in hearing more..
I understand why the practicioner wouldnt commit to an answer...please keep in mind, your Neuro might not know either...these things are so hard to dx and keep a wrap on....much as I hate to tell you this, you might not get an answer until your next MRI...is that in the near future?? BY seeing what legions are new, which are active (if any) you might get more information. Its really a shame, because I know you really want an answer- but honestly, whatever answer you get, isnt going to change your course of action. My Neuro has me staying on the same Rebif I was on before he upped the dx to Progressive...and there is no proof that any CRAB helps secondary Progresive MS...but the new course of thinking, is there is no proof that it doesnt, either. I can honestly say that the Rebif has slowed down the amount of relapses I have had..Ive not had any since the 6 month mark on Rebif...for that alone, Ill keep taking it!
PLease let us know what you find out...and remember STRESS aggravates your symtoms!! Try really hard to relax..and not stress over this...whatever is going to happen, you seem like you have good care and your in good hands..one day at a time, pal..ok?
Nikki
nikki, I may not have these concerns if the MRI i took aout a month and a half ago hadn't shown masive activity in the brain. In five years the mri has never shown activity. I started with nathans advise and a journal of all the symptoms because he is correct when he said I may forget by the time I see the nero. This has been a reacurring thing forgetting things that is I tryed the journal once before but I kept forgetting to take it with me when i go to the nero's office. That is a little embarassing. I am only relying on the nero to tell me what is happening I haven't read the radiology report myself. with help from a dictionary I can understand it. And that helps to understand.
Last edited by unclesam612; 04-20-2007 at 03:05 AM.
Sam,
no matter what medical dictionary you use, I would advise against trying to interpret an MRI report yourself. Honestly. They didnt go to school for 9 years for nothing! They are really confusing, and sometimes are vague...let the doctor play doctor. Do yourself a favor. You are really stressed. I can hear it in your posts. Do you have a good support system within your family, or friends? DO yo have an MS support group locally where you can talk things out? IM not saying in anyway that you are crazy- but you do sound overwhelmingly stressed. Im here for you , pal..
As far as the activity goes on your MRI, I can only assume you mean the contrast showed activity. This is not unusual, either in R/R or progressive. ok? AT times, the body is going to have flare ups, and with all your symtoms, Id say its pretty safe to assume you are having a good one! That doesnt mean you have progressed, you just might have been really lucky so far, and not had much activity showing in the past..this might have been just bad timing.
Remember, I have over 50 legions on my brain! I work still and run a household. Im married and do all the normal things that people do. At times, Im exhasted!! And, at times I want to break down and cry..but I dont let any of this stop me. I cant. Its MY life, and MS wont take it away. You cant let both the unknown and your current concerns stop you from living your life. You pay good money for medical care, and if you have ANY concerns that you arent getting your questions answered, ask again and again until you do- or look for another doctor. This is YOUR life and you are NOT just another number on todays list of patients.
I know that your posts are really difficult for you. I hear it and I really do feel for you. I want you to remember that you are NOT alone and that no matter what, even if it did progress over the past 5 years, nothing is going to change. You are still going to take the same meds, and you are still going to have the same quality of life until the day comes when you give up...Its easy to worry, its hard to keep plugging away, especially on really bad days....but in the end, its soo worth it to achieve things. Did I tell you that less than 3 months ago, I graduated an Ivy League college with a 4.0 GPA?? I may never be an executive, but I proved to myself at the age of 40 that I still had enough in me to finish the courses I started 3 years ago, before I was diagnosed, and contine working fulltime. I graduated valedictorian of a very impressive school. Why am I telling you this? Because it proves that you can do anything you want to do, even with secondary progressive MS.
Hugs to you. If you need me, Im here. And, Im trying to follow you, please keep me posted on whats going on. Dont give up. No matter what, get the answers you need and deserve!
Nikki
I'm not say that I would ever give up.I just don't trust doctors I've been lied to by all but one and he moved 500 miles away. He recommended this one I think it was because he wanted to give him a difficult person because of my unwillingness to quit or just take drugs because he gave me a scipt for them.It really depends on the side effects. this would be the 6th or 7th time I have read a radiology report the last time he failed to tell me every thing. there were things on it that he just didn't talk about that I thought I needed to know it wasn't just the brain it was also the spine there was an abnormality in the thorax so I asked him about it and the radiologist did not elaborate he just put in the report there is an abnormality not what he thought it was it took the nero almost a year to be honest enough to say he did not know what it is.Funny when the pain center dr.told me in 5 min. it was the spine out of line.they did a few adjustments and a lot of the pain I was in was gone without meds. I hate drugs any way but understand for the rest of my life I will be on something.But that still doesnt mean i have to like it.I do understand this is truly a life long commitment. And by no means am I as smart as my nero just more honest. I like to know all the truth I am not one of those people that let those things stop me. This is the 3rd time I have herd a Dr say I will not walk. I fought the last two times and will fight this one too it is not a defiant thing it is just a possibility. My very first Mri showed over 30 lesions now 5 years later they just stopped counting looks like a large connect the dots. All of them are small except for one and it is over the right ventricle. I try to treat this thing as a learning experience.Learning what the report says and understanding it isn't that difficult. But they are vague. I just know this is not something that will ever go away.if I'm not careful he will over medicate me agin.He gave me so much med at one time I couldn't function. I started cutting back on them little by little.I finally I found an acceptable middle.I went from 7 pills 3 times a day to 3 pills 3 times a day and I feel much better. And I'm able to do almost any thing I want. I have many limitations but I have found ways to overcome them. Sometimes it may be asking for help but most of them is learning alternative ways to do things. I still walk fine most of the time but use a Cain some usually for balance think that I failed to mention that I'm also OCD and i think some of my wanting to learn all these Latin terms stems from one of my OCDs is I hate to hear a word that I don't understand. That report helps with that. My support group is my family but they don't always understand what I am talking about how can they they are healthy I am the only one ever in my family to have MS. So none of them have a clue. Some even think I use it as an excuse not to do things I look normal so it has to be an excuse. Others are understanding (the ones that have read the books that i gave them) You are right I am very stressed new symptoms and of all things stabbing pain in my legs.I've gotten used to the tinge ling it is uncomfortable but still tolerable.But the stabbing pain will take a little more than getting used to unfortuntaly my nero doesn't believe MS causes pain he says it is muscle spasms take muscle relaxers more often. Some thing are not just spasms. The last time I had to go over his head and talk to his boss who is an MS expert just to get a mild pain killer.It helped but I hate going to the boss to get him to do what he is supposed to already know. I get factious at times without meaning to.I took the pamphlets in the office and show him in them the symptoms of MS and ask him if it doesn't cause pain why is it in here. Never get a response just a look like you smart A**. But to get back to the support group thing the only place I can talk to other people with MS is here. I only know one other person with MS and never see her. So would like to say thank you very much for being here this is a big help. And it doesn't really matter if it is R/R or progressive just want to know. It helps when the surprises are as little as possible. proud of you getting a 4.0 GPA that is awesome. Good to hear not every body just gives up. Giving up has never been something I have done and am not about to start. I can use your story as inspiration I believe if one person can do it any one can if they put their mind to it. Thank you for your posts and insight it is very helpful. just a foot note the OCD i have is mild just small things like not understanding the words Dr's use.But it is strange I don't usually obsess over the MS just the terminology. There is nothing I can do to change that I have MS but there is something I can do to understand what he is saying without depending on him to explain. Again thank you very much.
Hi Sam. First of all, you are welcome. Since it appears that this board is a big support to you, then Im glad to be able to help you. Anytime, just ask! Its an honor to make someone feel that they are being listened to. And,I am listening.
I read everything you told me here. And, you shared quite a bit, thank you. Do you think it would be wise to find another doctor? I know, youve been thru so many, but honestly, I have to agree with you, this one seems to be over medicating you and not giving you the answers you deserve. You are smart to reduce your drugs, and I hear you when you say you dont want to be on them at all; but at this point, one super-drug might be the answer, vs. a bunch of others. For instance, i take 3 shots a week, besides the occasinal Ambien to sleep, I deal with everything else. I refuse to take pain killers- you build up too much of a tolerance to them. I tried Neurotin and Lyrica, they did nothing. So I live with pain, which is mostly tolerable but sometimes NOT- and when its really bad, I pop an Ambien and go to sleep. The Rebif doesnt cure the other symtoms, but if it prevents new ones from showing, Im all about that.
I dont know Sam..but you sound like you need soemthing that you are NOT geting from this particular doctor. Having to go over his head is bad enough, can you just schedule your next appt with his boss, the specialist?
and, yes, please use my story as one of inspriration. I hope it does insprire you , or others...it certainly gives me the strength and couage to battle this thing called MS each day!
Keep in touch. IM having a bad morning typing, but Ill be around all weekend.
Nikki
I too was on neuroton for pain it done me no good . That was one of the drugs I took myself off of gradually can't just stop that one. My wife has been on lyrica she said it helped a little but not much.Sorry the last post was so long just felt more explanation was necessary. I probably will talk to him about changing to someone in the same office. I really like the rest of the staff there a lot. Gentle, caring nurses with needles are hard to find.
No post is ever too long, if you feel you need to vent, then this is the place to do it.
And, Yahoo to the nurse comment. Ill tell you what, some of the best care Ive gotten since this started has been from nurse practioners and the nurses in the MS office where I go. Nurse week is in May...dont forget your nurses!
Yeah, Nurontin is one of those you cant stop over-ngiht. Lyrica did nothing for me, but its the same type of anti-seziure drug with the same exact warnings, etc...some say it works for them, for me- Nothing.
thanks! Dont know why you posted that, but Ill take the compliment! This was an old thread, I can only assume you read something here which you identified with. Do you want to re-open this topic of converstaion? Is there anything you need to talk about? Here if you need me..
Nikki
My neuro is trying to figure out what form of MS I have, Definitely progressive, definitely not primary progressive,but I may be in that weird 5th category where the MS is progressing but you have remissions and plateus. I had a horrible remission in July. but seem to have recovered 100% to where I was before the relapse. I actually feel great except for fatigue and leg weaknes. I WAS ON REBIF for 3 months, and felt worse on it than without. But my liver won't tolerate it, so I'm off everything until the liver settles down and we can talk alternatives. Avonex is out too--anybody read the rpt in NY Times that it turns out to be v, toxic to liver and can kill you. So who knows. Back to Mayo next month to see uro and neuro. There's a limerick there somehere!
Avonex is out too--anybody read the rpt in NY Times that it turns out to be v, toxic to liver and can kill you. So who knows. Back to Mayo next month to see uro and neuro.
Daphne, sorry you're going through this! Re: the article, no, I didn't see it but am going to look for it!
Daphne, is this a recent report about a newly discovered danger? I know there are concerns with liver function with all the CRABs so check-ups are necessary but I just searched through the Times and didn't find anything new.
Ive been searching too and cant find anything. Being on Rebif, I do have my blood work done every 3 months, and have spoken to my doc at length about liver functions, to date, everything has always been normal~ but if you have additional info, Id like to see it.
relapsing remitting or progressive 
