Good on ya, Snoopy for pushing yourself to be your best. I agree this is an important part of the recovery.

I hadn't thought that Bird meant that a person should just curl up in bed and give up though . . . just that they should rest when they are particularly fatigued. My fatigue comes on hard at certain times of the day, and that is not the time for me to do anything taxing. If I don't rest then, it can get ugly.

Other times though, I am less fatigued and more amibitious. That is when I will tackle whatever needs to get done.

Cherie

Cherie, your understanding of what Bird meant might be right and mine wrong

MS fatigue can knock me on my butt and I have been know to hold down the chair for of a day, two or three but I have also found exercise to make a difference in my fatigue.

Some days I can be fatigued and decide to use the treadmill and feel much better afterwards. Other days I get on it and within just a couple of minutes I know I have to give in to the fatigue and relax, nothing is going to get done.

Another option to be aware of are sleep disorders which can be related to MS. A simple sleep study can rule out a sleep disorder.
http://www.nationalmssociety.org/sit...sleepdisorders

Let me clarify my resting point here, since I wasn't understood completely!

Keri,

MS WILL make you rest one way or another, if you don't listen to your body. YOUR BODY will tell you when to rest. This isn't your regular virus anymore. This is MS. You will learn to lay low or you will keep beating your head in and finding yourself hit with MS over and over.

I learned to listen to my body the hard way! After MS slapped me down and down everytime I was determined I was in control of me!

I have NEVER never said to crawl up and lay there. No, you get PT, you see the doc, you call the doc when new things happen, you REST when your body says "na nanny boo boo, you over did it!", you exercise your brain, you do physical exercises to YOUR CURRENT capability, you deal with the mental aspects of this through friends, minister or therapy.

6 weeks into this is early for you to be adjusting fully to this new disease. Keri, talk to your doctor about these concerns and feelings you are having. They are normal. NMSS and MSF have peer counselors who will call you for free. We, of course, are here too...Find a MS support group in your area.

You are going through a grief of your "old" self. And in the end you will say hello to your "new" self. It is a spiritual, physical, and emotional journey.

And I wish you peace.

Hi everyone,

I so much appreciate all of your responses - and most importantly, I really do love that you can express differences of opinions and it can be okay! that is truly the hallmark of a great community in my opinion.

Snoopy - your experience sounds amazing. I appreciate your sharing it with me.

The bird - I hear your point, too.

both of you make valid points.

And of course, the most pressing thing (besides the incredible pain and pressure behing my right eye!) - is that this has only been going on for 6.5 weeks. ALL of it is new. And here I am on my second dose of IVSM. I'm already changing from one DMD to another. Switching from one fatigue med to another.

I know it's too fast - however, I'm kinda on automatic pilot - this is what I do - this is how I function - b/c if not, I fear I will just crawl up in a hole and not come out....I do have a therapist - and we do have frank discussions about all of this. (and of course, no matter how you cut it, right now it all sucks.) I'm also a psychotherapist myself! I'm working hard to just keep it together. I'm also just plain old tired - not just the fatigue stuff...but just tired. I live alone, I'm single, I don't have a ton of friends, and I don't have family. I feel like if one more thing comes my way - I just won't be able to do it anymore. Last week, my toilet broke. This weekend, my garbage disposal broke. My cell fone died. I know, nothing major...and I have warranties on all of that - it's just a phone call or two to make - but I'm zonked - just taking care of life stuff on top of the MS - I'm just exhausted.

The simplest little things are sending me over the edge. Last week I couldn't find my lil ice pack thingy that I use for after my copaxone shot (no longer taking now in preparation for Tysabri) - and I started to cry. Now - thing is - I'm not someone who cries! I'm walking around with a headache for over six weeks now - that rates about a 6 on a scale of 1-10. I have pain meds for it (vicodin) - but I won't let myself take it unless I hit a 9 or 10. Not to mention, when I take it, I only get relief for 2 hours, 2.5 max. Yet, I shouldn't wait to a 10 to take it. I'm going nuts.

I'm sorry, I don't mean to complain. I went to the grocery store to get something to eat for dinner. I looked in my cart - and realized I didn't get one thing that qualified as "food" (and not a snack or binge food) - but decided I'd just stop for chicken at fast food place...full well knowing, by the time I got into my car, I would not want to stop. I was right. On top of that, I REALLY truly went into the store to get Hershey's kisses with caramel...of which, they didn't have. That almost made me cry. Not that I needed the chocolate by any means.

Probably the thing that is getting me is that on Fri at my neuro appointment, he let me know that he doesn't think it is RRMS...SPMS at best....but who knows. I haven't told anyone yet - except for my therapist today. Like I said, trying to hold it together.

I joined a NMSS support group - it is a phone support group for newly diagnosed - except I don't feel like it's a good fit - b/c even though we are all newly dx, all the others have been "sick" or had symptoms for a year or more...so while the "label" is new - the other part of it isn't. All of this is new to me. I just don't know how to do this. Will this exacerbation ever end.....when will it end? Of course, there are never any answers...b/c no one knows. And that's the suckiest part of it!!

And I'm only 6.5 weeks into this - and the "unknown" of it all is just getting to me.

Now I feel all whiny...and I'm mad at myself.



Don't feel like you need to play a violin for me - I'm not playing one for myself - I'm too busy doing whatever I can to stay above water :sinking:


Thanks,

~Keri

This concerns me.

As you have said your 6.5 weeks into this. It's waaaay too soon for your neuro to decide your SP, he may be right and you might be but in my unprofessional opinion he is jumping the gun on labling you and in the process scarying the hell out of you - like you really need that right now

Have you considered seeking the advice/opinion of a second neuro. Believe it or not neuros are not created equal.

Ever since I started doing MS forums (which has only been a few years) I have tried to remember what it was like to be newly diagnosed.

There were so many emotions that I remember - fear was a big one, obsessed with the disease and discussing it to the point that my husband finally told me it was time to move on and do what we had to do to live our lives. MS had become my whole life.

Many here will tell you there is life after diagnosis, that life does go on and it can be a good life even with MS.

Keri, try and calm down. Nothing is going to get resolved quickly. If you choose to treat this disease aggressively then do so and know you can talk to us.

As far as playing the violin for you or giving a pity party - Don't worry I'm not very good at that. For the most part I am not warm and fuzzy when it comes to my responses

Keri



I'm not real good at the warm fuzzies either. I'm trying, but still. Just know that it's not just you who feels out of control like that. Things getting to you, the crying.

It's not just the ice pack, it's that last straw on top of all the other stuff you're dealing with.

One thing to keep in mind is that however ms is doing you now, it probably will change course. It's like the weather, unpredictable, which can be bad, but can be good too.

I was dx'd with c spine issues and a syrinx in '04 and I was a mess. I felt so hopeless, because they couldn't fix me and nobody wanted to believe my symptoms, much less help me. Felt like I was falling. I was crying all the time which was not like me at all.

I'm still learning. How much is too much? When to push, when to rest? It's tough. You learn it over and over every day, because it's a new game it seems. You learn about priorities, and you do what you absolutely have to do first. I learned that was NOT the cleaning, LOL.

Don't be so hard on yourself for feeling the way you feel, okay? Anybody would, in your shoes.

Keri, I wish I could reach out and give you a . . . and no, I'm not known for my warm and fuzzy's either. I remember what you are feeling and experiencing like it was yesterday, and that was 17 yrs ago now. However, the truth is that many of us grieve and panic every time we go through another change, and we often go through many ups and downs through the years.

Snoopy is right that there is no way he could know your category as yet. In fact, he is dead wrong if he is suggesting that you may be SPMS, because that category begins with years in the relapsing-remitting phase, followed later by a more progressive course. Since you have not had any notable health problems until know, and have not been having relapses, it is actually impossible for you to be SPMS :

http://www.mult-sclerosis.org/whatisms.html

If he meant PPMS, firstly he doesn't know his categories, and secondly he can not predict that for at least 1 - 5 yrs, when he sees what the disease does over time. Most people with PPMS don't have lots of inflammed lesions in the beginning either . . . so none of this is adding up.

However . . . if you do have PPMS, Tysabri has not yet been trialled on this category of MS, and it is currently believed that it is not going to be of any use to those people anyway. These drugs are for the "inflammation" that comes with relapsing nature of this disease, but it's an entirely different process (neurodegeneration) that goes on once we move into the progressive phase. A drug that specifically targets inflammation is just not intended to help with neurodegeneration . . .

Having said all that, I do not blame someone for trying any drug in the hopes that it might slow down this MonSter . . . I just disagree with a nitwit "specialist" scaring the pants off a patient to coerce them to doing it. In all honesty, my concern is for you only! He absolutely should have given you time to come to terms with HAVING MS first . . .

My story is actually quite similar to yours in that I had no family, was not married, hadn't even considered children yet, was career oriented, only 31 yrs old, and had just returned from 5 yrs overseas (had lost contact with most of my friends in that time). I was only home 2 - 3 months and had just started in a new job (a few weeks) when I was instantly paralyzed. So you know what I did when I found out it was probably MS?!? . . . I went out and found a very handsome German tourist and asked him to father a child for me, no strings attached.

So, about 6 months into this MS journey, and not yet recovered from the attack . . . I was unmarried & pregnant, they had discovered cervical cancer, I was anemic, and I had gestational diabetes. What a fine pickle I had gotten myself into. OH YEAH . . . and there were absolutely no drugs on the market to potentially slow this beast.

When I say I understand how you feel, and that you need more time to come to grips with what is happening to you, I really do speak from experience.

I've raised two beautiful daughters (one is almost 16, the other 12), and I have had some major ups and downs with this disease. I have had to learn patience and tenacity, and so have my kids.

Your neuro should not have scared you like he has, because he can not know where this will take you yet. Get another opinion.

One day at a time, Keri.

Cherie

Hi Keri,

I feel for you and what you're going through! You've had some great replies, and I only wish there was a really good answer. I can relate to what Bird, Snoopy and Cherie said, and all I can say is, this disease really stinks sometimes.

I remember when I first tried Provigil. It was like a double edged sword for me. It would give me brief spurts of energy, but increased my brain fog, so it was like I was raring to go, but only for non-complex tasks. Then I'd have the exhausted days following.

It took a long time for me to realize I couldn't go 90 mph anymore seven days a week. I come from a long line of nose-to-the-grindstone workaholics and I don't like being exhausted all the time.

I wish I could take Provigil or one of the other meds and keep going the way I used to. But I know I'd be having relapses one after the other if I did.

When I was first having my big relapses it was when I was still in overdrive. When I finally slowed down, the MS seemed to also.

I make myself get enough rest now, but I also have to eat well and exercise. Laughter and camaraderie helps a lot too.

I hope that by being here and sharing what you're going through it will help in dealing with all of this MS stuff that's coming your way.

I'll be thinking of you!

Keri, You are really a concern to quite a few of us. You asked us to listen. You got it. You also got major concern.

Snoopy is so right about getting a second opinion here. Be sure that this new neuro is a MS specialist or has a LOT of experience with MS patients currently. MS research has made a lot of progress in the last 10 years alone, so you need someone on top of MS....

Keri, as a psychotherapist, you know what you need to be doing for yourself right now. Stop. Breathe. Give yourself advice as you would a patient. The answers are in yourself.

If one therapy group is not for you. Call and ask for another. Find a local group. Keep looking. You will find a fit.

I wish you peace for today.

Hi everyone,

Thanks once again for responding.

my neuro is a MS specialist - and he is in a the largest private MS practice in southern california outside of the major universities. he knows his stuff - but he isnt pulling punches.

I think he wrote down SPMS - because he didnt want to put PPMS - which was his thought from the beginning. but we both agreed that it is too soon to know. we just know it's coming on like a blazing fire - and we need to fight it - or rather, im choosing to fight it - and he's on board.

im worried bout me too. the steroids are quite possibly messing with my moods - tho, im not sure i can blame the moods on the steroids. lol. why wouldnt i be messed up?! i dont know if im coming or going.

i know most of you have been down these roads - the shock, fear, unknown, uncertainties, sadness, etc. i swear, it's killing me - this is the part that will take me down - not the frickin MS - but this crap - the big question mark over my head.

i feel useless and inept. havent had an easy life till now - but kept fighting - going for my dreams and goals. not stupid enough to believe that just b/c i wanted something, i'd get - life doesnt work out that way - but at least there was a "carrot" in front of me - and i was going for it...but now? is there a carrot? just an empty string? I dunno. and i know it's too soon to know - but im not good at this...just waiting. it feels like a bomb...ticking - but with no timer. how do u live this way? yeah, i know - u just do - moment to moment, hour to hour....you just do. but how? that isnt really an answer!

Can you imagine how bad of a therapist i am?! LOL no really, i dont practice what i preach, so to speak.

so, like you, im worried about me, too. just trying to make it through - and now just in a holding pattern. tomorrow is last ivsm treatment. will start that new med for fatigue. trying to work a little (2 clients tomorrow?) - hopefully i can see enough to drive myself there. and as for treatment - now i wait to hear from the tysabri people...might be two or so weeks. so i wait. did i mention i hate waiting?!

where's my lil smiley with the white flag already?! rofl

~Keri