Thursday, August 06, 2009 Suz asks

Q: 6 month MRI coming up - afraid

I've asked questions here before and found so much helpful info here - still in limbo land - when i saw the doc last - january i think? she gave me the we dont' know - think you've had a one time event - caused by virus - can't tell you where this will lead - could be MS - but it's an ADEM now - SO for 6 months i've been dealing with fatigue, dobel vison, drunk walk - however i was imporiving i think or adjusting - i really can't tell anymore - had a "crash" when i went away for a couple of days. It was pretty discouraging to be feeling like i was improving - excited to go see family and on day 2 of thr trip i felt like i had gone back to the beginning. trmors, nystagmus worse double vision worse and it took a month to start to feel like the fatigue was dealable.

I sent an email to my doc because i was feeling so bad - she said people with one time events or MS tend to pay when they play - well if it's a one time event then why am i not getting over it? it's been one LONG event to me!

kind of the neverending question mark in my head - every day every minute - i even dream about doctors. My husband is very supportive but even I get tired of hearing myself trying to figure out waht i'm dealing with - new every day without really knowing whats happening or going on. some days "good" some days just so out of it. now i;ve got the appt with doc and i have to say i am terrified to go in and have no new answers or thoughts and just deal with who i am now and fish through the weeds of all of this on my own. until i have a crash or never change - this is it?? Never thought i would fear going to the doc and have them say good news - no changes - it's absolutely crazy that good news could feel bad.

i'm not even doing half of what i used to do. I think i need a new hobby and then when i get ready to do it i'm out of energy and want to laydown . i just don't know what to do? Had a great day long crying spell the other day. That helped clear out some built up anxiety. I've not cried in my whole life as much as i have in the last year. it's just so freaking surreal - alice going down the rabbit hole. and believe or not through all of this i have had some realy beautiful moments/days of bliss and happiness. it's the biggest rollercoaster ride -and i am/was? a roller coaster adrenaline junky - but this is some ride. I have to say i started typing to say that those of you answering the questions are so supportive and have so helped in my fishing through it all. sorry it ended up in a rant. seems i am having quite the time wrapping my mind around and the closer i get to the appt the more butterflies i feel. what is al of this is and where i'm headed? doc gave me amantadine for energy and i got shooting pains in my head - like a brain freeze - anybody might have ideas for alternatives? - almost deleted this - sounds so pathetic. but i hitting ask question anyway -

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Answers (5)

Lisa Emrich, Health Guide

8/ 6/09 10:12pm

Suz,

I can hear how very frightened and frustrated you are right now. The MRIs you've already had definitely show that you have lesions. That means damage and since the lesions haven't changed since your first MRI (according to your previous questions), then it makes sense that you might experience recurring symptoms, especially when you've been under stress.

It's understandable how you might be anxious about this upcoming MRI, but there's nothing you can do to change what it might (or might not) reveal. Let me tell you a little story. Last year I had a rather significant relapse and we did an MRI to get a fresh look. It had been almost 2 years since my last MRI at that time. It did show some new lesions in my spine while the brain stayed clear. That relapse was long and a few times it reared up again after I thought that it was over. But eventually those symptoms abated (mostly).

This past May another relapse started and progressively got worse. We did the IV steroid treatment in June and that helped some. But a month later, either the relapse was rearing up again and wasn't close to being over, or I was having any relapse immediately following that one. This time we took a new MRI. I thought for sure that new damage would be seen because I was having new symptoms. The report came back that everything was stable - no new lesions, no activity lit up the contrast, with the lesions measuring the same size as before.

That surprised me. I really thought that we'd see an explanation for the dramatically new symptoms as compared to last year and previous relapses. I was almost disappointed. But not everything correlates.

Your new MRIs might show changed from the previous ones, and if so then you just might get that official MS diagnosis. Your MRI might show that everything is stable in which case you will still be in limbo, unless your neurologist believes that you are currently in a new relapse and can fulfill that difference in time requirement for a diagnosis.

What you can do something about is talk to your neurologist about your ongoing symptoms (or actually waxing and waning symptoms). Some of these symptoms might have other treatments to help alleviate them.

Helen's advice on doing what you can with diet and exercise is excellent. Take care of yourself and respect your body. When you overdo it, expect to pay a bit. Learn to work within your fatigue level and you will be able to do more.

I hope that this helps just a little bit. Remember to breathe deep - long slow breath in and long slow breath out. Repeat. It helps.

Suz

8/ 6/09 11:55pm

thank you both Lisa and Helen for your insights and words...it sometimes just helps to feel you can talk to others who know what i can't even process at this point. ...it's really hard to talk about it all when i just keep going in circles - if i don't have an answer, the docs don't have an answer then what can my friends say? just when i think I can get a handle on it all I slip ...my nuerologist actually recommended i look at Dr. Swanks site - and it was my first step towards feeling a bit of control over my situation. i have a bit of difficulty for me i have so many food intolerances i'm totally confused and think a nutritionist might be a big help at this point. my gut and skin shows the signs and allergist - nightshades, gluyen, eggs, etc. for me. the fatigue just frustrates me - even mental fatigue.

i've done hours and hours of research to see if i could find something that maybe the docs were missing - so i can go in and ask questions - it's a puzzle and i dont know that i'll get any answer i want - i've exlained to her about the lingering symptons and new ones that come and go. i wrote to her once in the last 6 months to give her and update when i had the bad time after my travel - it was just a 5 hour car drive and i wasn't even driving!! then i realized before we left i was rushing getting ready feeling excited about the trip and i overdid before i even left. never gave myself a chance!

anyway - all of the info can be mind boggling with thoughts of mercury posioning, allergies, viruses, - thre's so much info and without an answer it just is completly overwhelmein when you're trying to figure it all out.

i have to write the qiuestions down because it can feel like too much information is coming into my brain and i lose my train of thought when i'm sittin gin the office.

I wrote about the "good news feels like bad news" and yor words about control hit it right on the head. i hear you - it's up to me to try to help and arm myself to feel as best i can. i need help. i sometimes just go back to thinking well they don't even know what it is so what is it i'm trying to do!? it's this awful cyclical thinking that seems to get me nowhere. it's not working. it's been a long mentally and emotionally confusing 14 months. the good the bad and the ugly so to speak. i am hopeful i figure out what the message is that im' supposed to be getting from this for my life. keep fishing. thank you - you're both very helpful and it's appreciated so much. breathing in deep - long slow breath out - thanks - i needed that.

tellnhelen

8/ 6/09 9:12pm

Two steps forward..one step back. I wanted to answer but I'm not quite sure what will help you feel better. So here goes.. It seems that you feel that your fate (destiny) is not in your control. My suggestin is that you control what you can....read, read, read all you can about easing the symptoms you know your having. You can't do anything about being in limbo or the MRI. These things will reveal whatever they do. You CAN try to address your symptoms with diet and exercise, vitamins, alkeline water and lots of rest. I hope you will be determined in your efforts because results do not happen overnight. Try different things like the Swank diet for dietary guidelines. I don't eat red meat, diary or fast foods like McD's. I do try to exercise twice a week in the pool (building up to one hour) I dont mean that my problems are solved--far from it. I'm suggesting that while you work with your doctors that YOU have some say in how it goes. Best of Luck

djax59

8/ 7/09 2:07pm

oh sweetie, i do feel for you. one time event or recurring it's still miserable.don't be afraid of a dignosis, then you'll know for sure and can get started on the meds that help keep it from getting worse. i think that the stress of not knowing for sure is worse than the disease itself. i've been a member of the "club" for 36yrs now and i think it was easier having a name to call it than it was just wondering which other part of my body was gonna quit in 6mos. forewarned is forearmed.if you have an ms support group in your area give them a call.they'll probably let you sit in so ypu can find out it's not a death sentence--everybody's is different--and it can be dealt with--and that over time you can learn to laugh about it--i've been having trouble getting back to this part of the site to read replies---so if you can figure out how to leave a msg on my profile-maybe i can get back to you that way--i'm not ignoring you--just computer iliterate:)--just know that my best thoughts are with you

ladygraycloud

8/ 8/09 10:14am

HI SUZ, THIS IS SUZANNE/LADYGRAYCLOUD AND BOY DO I KNOW HOW YOU FEEL! I'M GOING THRU THE SAME AND WAS ALSO TOLD IT COULD HAVE BEEN A ONE TIME THING--ALL I TOLD MY DOC IS I WISH HE COULD WALK IN MY SHOES FOR ONE WEEK WITH THIS ONE TIME THING! I HAVE MY NEXT MRI OF HEAD AND SPINE IN OCT AND JUST PRAY EVERYDAY I DON'T HAVE ANOTHER STROKE OR SEIZURE THAT IS WHAT I'M DEALING ALONG WITH PRAYING THAT MY 3 KIDS DON'T SEE ME IN THAT CONDITION-AS OF NOW MY HUSBAND HAS ONLY SEEN A MILD SEIZURE AND THINKS IT THE WORST EVER, GOD HELP HIM AND ME WHEN HE SEES A BAD ONE! ALL I CAN TELL YOU IS FOR ONE THING STAY ON THIS SITE AND THESE GREAT PEOPLE WILL GET YOU THRU AND FOR THE SECOND THING TRUST IN A HIGHER POWER HE WILL GET BOTH US THRU THIS--LIMBOLAND IS NO FUN--I ALWAYS WONDER IF WITH THIS KINDA OF DELAY IN OUR DX WILL MAKE US WORST WHEN THEY DO DX US--MY FEAR IS A WHEELCHAIR AND NOT BEING ABLE TO DO ALOT WITH MY KIDS BUT THEN AGAIN ICAN'T DO AS MUCH AS I USE TO WITH THEM NOW! SO WE BOTH ARE AT THE WAITING GAME AND IT ISN'T MUCH FUN!

MAY GOD BLESS YOU AND TAKE CARE OF YOU AND YOU WILL BE IN MY PRAYERS

LADYGRAYCLOUD/SUZANNE

Suz

8/ 8/09 12:10pm

It's good to know we can be here for each other to give support and share what is going on. It's so helpful to be able to talk about it instead of going around and around in circles in my own head. This site has been a Godsend. There was an excellent post about remembering our blessing and thinking of gratitude for even the simplest of things. Just finsihed baking a birthday cake for my hubby - couldn't even do it last year - so here's to small steps and friends - whether they are foundn through a website or in person. Hang in there - I understadn where you are and hope today is a really beautiful day for you.

Ms science

10/24/09 12:20am

Suz,

If you are reading this I presume you will have had your scan and been told

things look more like MS now, or, you will have had the same image as before.

Now, even if it looks like MS now and you have a new spot, really, it's no big deal.

As a neuroscientist from the UK I can tell you that MS just isn't a serious disease anymore. Why? Because there are 3 things we are doing for MS and these are controlling, stopping, and reversing. We are now already on the final stage of reversing. We are now sure there will be a cure in 5 to 10 years.

If your first scan was done within 3 months of your initial symptoms and the

6 month scan showed no new or enhancing lesions, you can be quite hopefull

of not developing MS. This is because we found that even at 3 months the

mcdonald criteria had a sensitivity of 77% and we theorise that at 6 months

that figure increases to about 80 to 85%. Let me also assure you that with

new lesions or not, it is very normal to experience a lot of new and changing

symptoms for a long time. This is because there is damage and it is healing,

as it heals, the slightest change in the nervous system can cause a new

symptom. Adem can do this for a long long time.

Good luck!

Suz

10/26/09 11:14am

Hello, thanks for responding - after the doc appt she decided to hold off on scan until 1 year has passed so i have until feb. The initial scans were unchanged after the first event 1 1/2 yrs ago. My quesiton re: adem diagnosis. I had no viral symptoms, fever etc and symptons (balance and numb arm) were noticiable month to year before the big crash - the big crash was brought on by a week of unbelievable stress on top of regular stress. It made it a snowball effect and I feel my body finally said that's it - I really do not feel this was viral induced - i also had not had an immunization shot.

My question seems now to the fact that I had disc shaped skin things on upper thighs that spread to behind knees a couple of years prior to this - went to derm - no skin biopsy - just steroidal cream given (i've had a patch of psorisis that has moved in location my whole life and hives for the sun up through teen years). so skin ongign getting worse in adult life and then stomach issues (chronic diahreah) came second - lasted (and continues to this day on and off), right arm numb for 6 months (thought it was pinched nerve) - all preceeded this event (within two years of it happening) -

regarding skin issues they are recurrent and seem to be precursors to my energy crashes. Ezcema like, discs that spread on upper thighs and one patch that never disappears completely and gets worse every two weeks or so. intense itching - weepy like a excema spot - the iv steroids i had cleared all skin things up for a few months.

The situation I believe for my doc is that the 3 lesions (2 non specific)and one large one on cerbellum was the one that was lit up - this is the cause of my continuing vision and balance issues. However, it is not a typical ms lesion - my evp, spinal, blood work all normal - except my vit D which was extremely low - now I take supplements daily and it is within good range now.

IF this was a clinically isolated syndrome or ADEM - my question remains as to what causes the "flares" in my energy level (extreme fatigue that comes and goes) - it's not normal - and my constant inflammation of my skin, and my reoccurent stomach issues - I've had colonoscopy (all clear) endoscopy (acid reflux) and allergy tests (only skin showed allergic reaction - no positive results re: food allergies from blood work).

I really feel there is a connection - some underlying bacteria in skin - would any blood work show this? what is being missed? I can't give up in searching for an answer when i struggle daily with energy. I can live with the fact that I have constant double vision and balance issues. I can adjust. I have a difficult time accepting the fact that I have to limit myself in activities to the extent doing about 50% of what I used to on good days. It's not normal and I need some answer as to why. what causes the crashes? i'm not running marathons or doing anything excessive. On good days i just feel human enough to do some things. on bad days it's in bed - heavy dragging weighted feeling. this is not like me. i'm positive and upbeat even in the difficulties of this - I have battled with situational depression but trying to keep positive re: an answer.

Thanks for any additional thoughts.

Q: 6 month MRI coming up - afraid

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