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

The million $ question . . .

It must be hard to do this as a therapist, since you know the "proposed" coping mechanisms better then anyone. In fact, I bet you're gonna' see client's issues in a completely different light now after this experience? See, there's a good side.

No, but in all seriousness, that's one job I wouldn't want to be skilled in, if something like this happened to me.

You know what? I am not a particularly religious person, but have always been spiritual. When they told me about the MS, while paralyzed and so sick, I begged for guidance many'a night. One night I got it, and I also got handed "peace of mind". It wasn't a "saved" experience . . . just the direction I needed in order to carry on my life in the same way (with the same non-descript religious convictions that I always had).

That's not to say that I don't lose sight of "faith" sometimes, but that's really what gets me through.

What will be will be. . .

One day at a time. . .

There's a reason for everything . . .

There's a lesson to be learned (so I don't have to repeat this the "next" time around). . .

A new purpose awaits me . . .

My skills are meant to help people in other ways . . .

Blah, blah, blah.

Ultimately, it's my faith (and wisdom) that I can get through every experience that keeps me going.

Cherie

I don't take anything for my fatigue. I have found that rest and/or naps are vital to my functioning and I allow myself that time to do so.

As a psychotherapist you know that fatigue and being tired are a symptom of depression. Depression is common in MS as well. Could some of the fatigue you are experiencing be depression as well.

You are dealing with a lot right now and I think it would be safe to say that mild depression is adding to you fatigue. Can you increase your anti-depressant at least for the time being? Can you take another one in addition to your current one?

As for your doc - I really don't know how he can predict your course with MS when you have only been diagnosed for a few weeks. My 1st flare was my worst, I was down for 3 months and was diagnosed as having a clinically isolated case of MS. I had one good month and then I had another flare at which time I received the definite diagnosis. And so began a year of flares every 6 weeks.

What is he basing his decision on? How did he determine that you have SPMS and/or PPMS? I was under the impression from my own research and reading that one is usually diagnosed as RRMS at first and SPMS and PPMS after there are indications of no periods of remission.

Bird and Snoopy were both correct; same ideas stated differently. Exercise is important and should be done everyday and it should be based on your limitations on that particular day. Diet, as I have found, is just as important. Although I do not fully follow it, the Swank Diet for MS has proven to be so beneficial for many MSers. I did follow it strictly for a couple of months and felt great. Then I broke down and ate some thing that weren't on the "diet" and felt worse.

Your emotional well being is important too. The more emotional you become the worse your symptoms are. The worse your symptoms are, the more emotional you become. And so the cycle continues.

Please take care of yourself. We are all here to help you along the way.