Relapse or aggravated symptoms? So confused

[Andipw3]

Thank you Alex. Your kind to reply. I was trying to distinguish possible ms symptoms versus maybe hoo all changes. From what I've read, they can be simular, weakness/ numbness/fatigue.. So ill get my panels done and go from there.
Also I'm having trouble distinguishing relapses from symptoms. How can you tell the difference? If I'm relapsing.. So far.. It's been very mild. Does that mean, because it's mild, it's not a true relapse? Just aggravated symptoms? Seems I'm week on week off then on again. Am I having relapses every other week?? Can't be can it??

[supermum_ms]

:D

It's really easy to inadvertently mis type, lol i've done it my self and because we don't have an 'edit' function it can be a pain in the b.....

Cheers.........JJ

[Amoonshadow]

I truly apologize. I was not referring to this site when I made that comment. I was referring to my overall experience of 14 years. I have only been to this site once. Please forgive me for not making myself clear. I use these sites to glean information from real people with MS and certainly not to be critical of anyone. In fact I think I can count on one hand the number of times I have posted anything anywhere.

My heart went out to Andipw3. I remember how terrifying and confusing those first few years with MS were. I wanted to let her know that she was not alone. It was not my intent to "question the integrity, insult, inflame or upset the wonderful people that make up this community".

I am quite embarrass that have have caused offence to anyone and again I am truly sorry.

[supermum_ms]

Hi and welcome to our little MS community,

"What ever you decide do not let the MS community guilt you into anything."

It's saddened me to read that anyone could interpret our community in such a negative way! In all the years i've been involved in this community, what has always stood out to me, is the high level of respect and support toward other people........regardless of an individual's point of view and or personal choices!

Please, please try not to make passive aggressive or negative blanket comments that could effectively question the integrity, insult, inflame or upset the wonderful people that make up this community.

Respectfully............JJ

[Amoonshadow]

I stumbled (pun?) onto this sight this morning looking for answers to severe foot pain problems. I understand your concern with DMDs. We all have gone through this struggle. I had a good exercise program in place when I was diagnosed with MS. Running, bicycling, free weights, rock climbing were all part of my life style. My running is more of a floppy jog now, I cannot bicycle anymore and my legs are too weak to rock climb.

I have had MS for 14 years and was on Copaxone for 7 of those years. There is no way to know how much the Copaxone helped because I do not have a "me" that was not on Copaxone. I am now SPMS and the doctor has taken me off of DMDs. She says that they will no longer help.

What ever you decide do not let the MS community guilt you into anything. DMDs are presented as almost a moral obligation. Even our MS societies have sided with the drug companies who are making billions off of MSers.

Find a Neurologist  that you trust and will be honest with you. This may take a bit. Do not be afraid to shop around. I went through 3 Neuros before I found someone that I trusted to help me make right decisions for myself.

The only thing you can know for sure is that your journey will be unique to you. Trust yourself to do the right thing. This is a frustrating and frightening adventure for all of us, especially at the beginning.

Be at peace.

[Andipw3]

Ok. Yes. That's it. The thought of controlling this without medicine is such a , I guess, wishful thought. I must still not be in acceptance of this. I want really bad to take a pill. But I'm not ready to go to the extremes of the side effects when I'm so early. And feeling well, " normal" if you will. So the most " natural" path is the copaxone w/ no or little side effects.. But injecting. It scares me a little. I'm very thin with little fat. I would try the 3x a week ( I think that's the new one)... Which helps it's not daily.. But where can I inject? I'm suppose to alternate. But where? Im in Arizona where the weather is such that most are very active/ fit. Funny enough I m trying to GAIN weight . Most would love to be in this position.."  Your problem is gaining weight?"  Then they roll the eyes.
A situation like this .. I need some "meat. ". So ,, im still in a state of being scared.  I can't shake it.

[supermum_ms]

Okay, I think I get where your going, try an alternate thought;

Jenny has type 1 diabetes, she's young and she doesn't want to believe she has as serious a disease as other diabetics. Jenny absolutely hates the idea of injecting her self with insulin, she wants to believe she will be able to control her diabetes with this restricted diet and exercise programme she's read a lot about. She really wants the diet and exercise to work better or just as good as the insulin her doctor has prescribed........

Q: What do you think the odds would be that nothing negative would ever happen to Jenny?

You said the 75 year old MSer your 'mother' ran into actually has progressive ie Primary Progressive MS (PPMS) which is a slow developing type of MS, and that is quite different to relapsing remitting, there is still no DMD's available for the Progressive types of MS. Wonderful MS stories are always nice to hear about but i'm sorry to say that if he has PPMS, his story is not unexpected for PPMS and he didn't have the treatment choices you actually have available to you.

Hugs.......JJ  

[immisceo]

What's the what if? Anecdotes aren't worth a hill of beans. No one's story tells you what you need to know about your own. His story is memorable because it is an extreme exception.

Exercise is great for all of us, MS or not. It stands to benefit all of us, MS or not. Exercise does not treat MS, however. The process goes on, whether we notice it or not. I don't think I could accept allowing my MS to be a run-away train that I did little to slow down. Regret is something I don't need to add to my MS journey. The 'unknowns' are challenging enough.

[Andipw3]

Ha! Yes.. Well here's an example of my dilemma. My mom ran into a couple she's known for awhile. The husband has progressive ms. Apparently diagnosed in college. Started w/ optic neuritis. He never went on drugs because there weren't any for that type at that time. So he remained active ( running, excersise) and has lived a great life. He stopped running later as he was stumbling too much.. And has some minor issues w/ his eye. But still to this day working out when he can. He's 75 . So I hear this and think. Well. Is it sheer luck ? or is there something to just going at it naturally?  I suppose there's no answer which is what makes this really frustrating. His story is wonderful. But .. Who yet knows what mine would/will be.
I'm still struggling. And I know I know... Why? You wonder. Treat it most say. But... But... What if... And that's where it is so painful for me.

[supermum_ms]

LOL ex-pat but i've been an Ozzie for...well for ever lol and it's a fun loving country and it kinda rubbed off on me ;D

I understand the psychological battle but i don't get why preventative measure are always so difficult for people to accept and it's not just an MSer's dilemma, it's really common for people to not really understand the point until after their medical condition has knocked them for six.........

Don't totally loose your head looking for the holey grail :D err i'm still waiting for the simulated pregnancy hormonal idea to get a look in, not sure what the male MSers would think of it though lol but come on.......chocolate is natural, surely they can work that in somewhere rofl

Cheers...........JJ

  

[Andipw3]

Lol! Love the humor.. British? Must be. It's the best! Ok ok.. Let me take it all in .. Write a million questions in my journal to ask the doc and see.
" you look so good" is what we early ms'ers here.. And I feel just fine too. So it's a tricky psychological battle as well. Injecting or wait. I see a
It of talk about vitamin d. I think Cleveland clinic is launching a study to possibly use as treatment.. Need to look into that . Plus ms society is going to study diet ect. So... If copaxone is one of the "natural" drugs.. Why not inject the other natural s?  Vitamin d. , B12. , Omegas. , all seem to support Myelin ... As does Copaxone ?
Hmmm.

[supermum_ms]

Lol my pea brain really hasn't woken up yet, i'll have a go at working out your  what if's.......I generally think MSers are likely thinking about increasing disability and clinical symptoms as progression, but their number of additional lesions is relevant to their chosen DMD and if it is working for them or not and is progression even if there wasn't increasing disability and clinical symptoms.

It varies on a truck load of influencing factors but basically DMD's are said to take around 9 months or more to start slowing things down, relapse reduction rates vary greatly from one DMD to the next, ranging from 30-78% [this article mentions some DMD statistics http://www.ms-uk.org/choicesdmd]

Keep in mind research typically measures relapse rates by MRI evidence and research MRI's are often stronger than what patient usually have access to, MRI strength changes the outcome eg 3T is estimated to show around 20% more lesions than a 1.5T does, and MRI's still do not show the full extent of what's going on.............if there are any MRI changes or additional lesions it means progression, so "3 new lesions" would mean relapses have occurred therefore progression.  

This bit "If there's no relapses in between except for minor on/off symptoms.. It is progressing or staying the same?" is probably not the norm for MS, still possible but the average relapse rate is around 1-2 per year. A few years ago there was a collation of researcher facts, that off the top of my head was saying per year the average was 2+ new lesions on a DMD and 6+ untreated. Which comes back to what is progression, lesion numbers or an individuals clinical symptoms or both.......

"Can you stay in RRMS your entire life if treated early??" Well who really knows when everything has changed with MS being caught and treated even earlier than ever before, but theoretically if caught early and treated then yes  if all the if's are in alignment and you jump up and down three times whilst singing Dixie lol never say never, right?

Cheers..........JJ

  

[Andipw3]

Oh don't worry.. I am very good at asking a thousand questions ! My doc has been very patient. Thankfully. I know this is a supporting community and I take as such. I'd never hold info as a complete definite. It's such a great place here though.. Brings to light conversations and inspires new questions.

So.. Once on DMD's your saying the measurement of progression begins. ? So.. Before DMD 3 lesions. On DMD for a year.. 3 new lesions. So what then do we know? If there's no relapses in between except for minor on/off symptoms.. It is progressing or staying the same? Can you stay in RRMS your entire life if treated early??

[supermum_ms]

lol i just strangled my self with my apron-cape :D

Q: Do you think because in a month I had 2 new lesions , that I'm progressing fast?
A: I don't think anyone could do more than guesstimate, there are many contributing factors and a month isn't really long enough to be a predictive measure for progression eg untreated MS could produce any number of new lesions, relapses generally produce lesions with or with out DMD's, short relapse can produce as many new lesions as a prolonged relapse etc

Basically it's too difficult to predict meaning at this stage, one month is different to the next and the next, once after you've been on your DMD for up to a year, it should be different again......

Cheers.........JJ

ps education is the key to understanding what your dealing with, we do our best to get it right but we're not perfect so it's always good to double check things with your doctor and be confident in your self :D    

[Andipw3]

Oops. Supermum. lol! Auto correct.

[Andipw3]

Thank you superman! It does indeed make sense. This ride is so erratic and confusing and I've just begun. I think I'm going to start copaxone when I meet next month w: my nurologist. I was diagnosed so quickly as others takes years. I think it's why I was so skeptical. He's a top ms doc in Phoenix so I'm going with it. Basically a bout with optic neuritis and lesion(s). Lately off and on " purring" like a cat on my left toes. The on/ off thing is strange. Nothing's consistent with me.
Do you think because in a month I had 2 new lesions , that I'm progressing fast? Brain only. I'll ask him but I'm just curious . Your all so informative here it's like I'm talking to doctors!!

[supermum_ms]

A pseudo is not a true relapse nor is it progression, basically pseudo's are the result of already having a damaged central nervous system.....

Psuedo = Joe has MS, his remitted symptoms are Optic Neuritis, left leg paraethesia and vertigo, it's been 3 months since his last relapse and he mostly feels good except for when he over heats or is too physically active. Then his remitted symptoms 'temporarily' return and he's once again stumbling, loosing his balance etc until he has managed to cool down and or rested long enough and he's bounces back to his normal again.

Relapse = Joe has MS, his remitted symptoms are Optic Neuritis, left leg paraethesia and vertigo, it's been 3 months since his last relapse, he's still learning how to balance his day to day activities with his MS but the last 3 days have been different........instead of being temporary, his MS symptoms are not going away and he's experiencing numbness in a location he hasn't had before. The consistent return of Joe's remitted MS symptoms for 3 days, plus the addition of a 'new' symptom indicates Joe is likely having a relapse.

Keep in mind that generally if your previously remitted symptoms have consistently returned for days AND OR your everyday symptoms consistently worsen for days, that would also indicate a relapse. You probably won't experience a 'new symptom' during every relapse because not all lesions are symptomatic but the continual return or worsening of your known MS symptoms would be consistent with a relapse.

New attacks or relapses are not unexpected (disease activity ie progression) MS will cause new locations of demyelination eg brand new enhancing lesion(s) and some of the older lesions have the potential to heal and those can be attacked again, basically because the demyelination process isn't final yet. The aim of disease modifying drugs (DMD's) is to reduce relapses and slow it down, best case scenario DMD's have the potentially to stop it completely. It can take 'up to' a year before you'll get any firm idea of if the DMD your taking is actually working for you or not....

Hope that helps and not confuses :D
      
Cheers........JJ

[Andipw3]

Alex thank you. That's interesting. So the issue is controll the inflammation and things will progress slower. But If lesions are forming, there is inflammation.. So wouldn't that mean progression?

[HVAC]

There are two things in MS inflammation and nerve damage. Especially in the beginning it is mostly inflammation. When inflammation comes you have symptoms. When it goes if the symptoms are gone it was inflammation. Inflammation can last for awhile sometimes. I had dizziness and falls that lasted a month then they went away that was inflammation.

With nerve damage the symptoms are permanent. When I was two I got double vision. It has never gotten better or gone away that is nerve damage. I have PPMS not RRMS so I have more nerve damage.

The remissions with RRMS are when the inflammation is gone. With inflammation you may not have progression.

Even with my nerve damage it happened when I was two and my MS has not really progressed in 50 years. My MRIs show old damage.

Alex

[Andipw3]

Ahhhh.. Thank you. That makes sense. I'll talk it over w. My doc. So.. Is a pseudo relapse considered progression? Are there new lesions bring formed?
Can a true relapse ever be mild, or are they generally debilitating?

[supermum_ms]

Hi Andi,

The rule of thumb with relapses is that your MS remitted issues return 'and or' your everyday issues get worse 'and or' you experience a new symptom for at least 24-48 hours, and there has been at least 30 days since your last relapse.

Just to complicate things and add to the confusion are what's called 'pseudo' relapses, pseudo relapses are not true relapses but the 'temporary' return or worsening of your MS issue, that revert back to your every day normal after you've cooled down and or rested.

Pseudo's are caused by things like the raise in your core temperature (Uhthoff's phenomenon) eg viral infections, UTI's, exercising, weather/environments, shower/bath, menstrual cycle etc as well as things like physical or mental fatigue, stress etc. The difference between a true relapse and pseudo's is that with a true relapse, you simply don't bounce back once you've cooled down and or rested, and your MS issues continue on for days with out improving......

Technically you can't be relapsing "week on week off then on again" but I think you 'could be' experiencing pseudo relapses, basically yo-yo-ing because of how much physical activity you've done and fluctuating internal and external temperatures. It's very common to be confused about relapses and pseudo's in the beginning, it can take some time before you work out all your subtle signs and learn your tipping point but you will work it out.

Cheers...........JJ    


  

[HVAC]

There is some evidence that hormonal changes can effect MS. I do not think even doctors can sort it all out.  

Usually with a relapse symptoms are constant for a week or more. Except fatigue the symptoms do not come and go with in the same day.

MS fatigue is like running out of gas. You are going along fine and all of the sudden there is no energy at all. Usually with rest you recover. The rest may mean the rest of the day.

If you are constantly feeling tired that might be something else. Sometimes it is as simple as not getting a good night sleep. There are medications to help with constant fatigue.

With cognitive issues you have to learn tricks. For remembering I keep a dry/erase board with the days of the week and a place on the bottom to write things I need to remember. I also have a calendar and I place notes on my alarm clock. I keep my keys and wallet in the same place all the time. As for finding words I take my time and if I say the wrong word I do not care or I make a joke.If you are hard on yourself or worry about it it makes the cognitive worse.

People do not notice as much as we do. Sometimes if symptoms are just a little worse it is not a true attack. You can always call a doctor. For some symptoms there is not alot they can do.

Alex

[Andipw3]

Ms symptoms versus hormonal changes. That's what I MEANT to write. !! ( above)