Diagnosis Shock

[hollyquinn]

So, I've had MS like symptoms for a year now. Based on results of a neuropsych test my neurologist finally officially diagnosed me with MS.

I'm in shock and I have no clue why! I've know for almost a year that it had to be MS.

I guess until she made the diagnosis in my mind it could have been something that was easily fixed, they just hadn't figured it out yet. I figured I would be relieved to get a dx, but I'm not.

Did any of you have this reaction? I'm walking around in a fog and, "I really have MS." is playing in my brain.

[CocoH]

Many of us spend so much time not knowing what is going on with our bodies. I think we get accustomed to the "limbo" and it's totally natural that you'd be in shock once you actually have a diagnosis. Now, comes the "acceptance" part. I struggled with that & don't think I really accepted this disease until I did my first shot of Rebif.

[BigA]

I think we're just fragile - at first. I was diagnosed twice in 2 weeks. Once very quickly from a busy doctor and once later on my formal apointment with a different doctor. Even 2 weeks later, the second diagnosis nearly brought me to tears. Go figure. You will find your strength. Humans are very adaptable.

[gomer]

No shock, No suprise here.......

While I only spent less than a year in OFFICIAL Limbo, I have had problems off and on since I was a teen. I had problems

In the navy off and on, got GOMERed over and over. One time I was even charged with criminal violation of UCMJ upon arrival at the base hospital, w/pneumonia. The case was dropped after I requested my sick bay records for the previous 10 days showing I had been GOMERed over and over.

Back in the 80s, voc rehab jsut chalked up my neuro issues to my diabetes, the VA sent me to the shirnk dept. They siad I was not nuts, just "adamant" something ELSE was wrong and not showing up on testing.

I had been loosing ground...more like inspecting the ground......lol...... in recent years. It was a new eye doc that officially opened the MS probable can of worms. Then my Fam doc called me in for a MS it fits talk. He pressed for me to get fully tested and Dx'd, and told me these days there were drugs for MS.

Decades after I gave up on getting any answers, the VA ran the proper testing and last Jan.... the VA doc said to you have RRMS, he then went on to say, you are not suprised are you?

I have more Dawson's fingers (clasic MS) than digits on both hands, spinal lesions, abnormal EVP (both sides) and abnormal LP.

For me, I was loosing ground as far as basic day to day mobility so I WANTED to get proper treatment to slow, halt or maybe revers(??) what was/is going on.

I went from years of using a cane part-time to cane and AFOs full time, and now a powerchair part-time, and a scooter for shopping etc. I don't like it, but I make the most of it, as best I can.

Doc Gomer Ms Sx for 50 years

[poohb3ar]

[QUOTE=hollyquinn;1248535]So, I've had MS like symptoms for a year now. Based on results of a neuropsych test my neurologist finally officially diagnosed me with MS.

I'm in shock and I have no clue why! I've know for almost a year that it had to be MS. "

i'd venture to say that most of us had that reaction. it's okay. i know my mind went numb to join my body when i got the DX. in a way i was relieved, but when everyone went to bed. i cried my eyes out, prayed, read my Bible. argued, pleaded with GOd.
it's called 'the grief process'
it's normal. you've just had a major loss in your life that no matter how well prepared you are it still hurts. allow yourself to grieve. don't beat yourself up. be kind to yourself. give yourself time to heal from this.
do what you want to do. curl up in bed, read, shop, whatever it is that helps you through this.
is there someone you can really talk to and spend time with right now?

stay in touch here. while you're going thru the process or after you're done, we'll be here to encourage and offer advice. there's awesome people here with wonderful wisdom and knowledge and love who want to help you.
hang in there! i'm praying for you.
God bless you!

[CasinoKathy]

Hi Holly, sorry for your dx! When I too heard the words "I'm 95% sure you have MS, but we have to do more tests, I was in denial. Only because 13 years earlier I was told no, and we don't know what's wrong with you! This by various other medical (docs)??!!

Yes, I know I have MS, been dx 3 years ago, but I'll be damed if I will let it beat me down. I shout and scream at it and occasionally tell it to take a ------- hike!!!

[jamilea]

Holly,

I'm sorry for your diagnosis but I must say that I'm glad you can be treated now *hugs*


Listen, I know it's probably the last thing you are thinking of right now but please do call your local chapter of the MS Society and speak with one of their specialists about your diagnosis. Ask them to send out a package to you in the mail and ask them what all resources you can tap into to get yourself involved in your disease.

It's really important. They are so sweet, you can even cry your eyes out and they will tell you it's going to be okay. They are AWESOME!

We are here for you, anytime you need.

I'm real sorry again. Hang in there!

Jami Lea

[seena]

For over a year I couldn't stop feeling, and thinking that way. Really wish I had done some kind of counseling or reading the book on Emotions and MS right away. At least you have MSworld to help.

Good luck, may God lead you through the tough times, and rejoice with you in the good times.

[LKrue]

HI HOLLY

I WAS DX IN MAY OF 2009, ACTUALLY IN 1998 MY GP SENT ME FOR A MRI FOR TRAVELING NUMBNESS, SAID I MIGHT HAVE MS, AT THE TIME I SAID WHAT IS MS? HAD NO CLUE, STARTED TO GET ON THE INTERNET, DIDN'T LIKE WHAT I WAS READING SO STOPPED THAT. MY GP SENT ME FOR MRI, MRI CAME BACK SAYING I HAD MS, THIS WAS 1998, WENT TO NEURO, HE SAID IT WAS ALL
IN MY HEAD AND I DID NOT HAVE MS. I REMEBER AT THAT TIME I WAS IN SHOCK, SCARRED AND EVERYTHING ELSE YOU GO THRU. AFTER VISIT WITH NEURO I FELT GREAT, OVER THE YEARS COULD NOT UNDERSTAND WHAT
ALL THESE SYMTOMS WERE. WELL I DO HAVE MS AND I DID HAVE IT IN 1998. STILL WAS IN SHOCK LAST YEAR, BUT DECIDED OK SO I GOT MS. AND DECIDED THEN AND THERE THAT I HAVE MS, IT DOES NOT HAVE ME!!
DON'T LET IT TAKE YOU OVER HOLLY, YOU TAKE IT OVER.
MY PRAYERS AND THOUGHTS WILL BE WITH YOU

LKrue

[Bunty]

Hi Holly

I was dx'd with RRMS in Feb this year just 2 months after getting very sick but with the benefit of hindsight I now realise I was ignoring weird stuff for a few years. To be honest, my first reaction was that at least I wasn't going mad!. I have been visiting this forum on and off since Feb and have found MASSIVE support from all the wonderful people on here that take the time to provide help and answers to those who are struggling. Today is the first day I've posted - your post struck a chord and I now realise that I've been so busy proving to everyone else that I'm absolutely fine with it, I've not allowed myself to let it sink in. Here I am, 7 months down the line, and reality has just hit home.
So, I really am sorry to hear that the shock's set in but perhaps it might help you to know that I totally empathise with all that you're feeling right now and as Jamilea says, hang in there, you are not alone and you, in turn, have helped me today, so thank you !

Bunty

[MelissaQ]

Holly, I am sorry about your diagnosis. I really think your reaction is quite normal. I think when we are in limbo there is always the chance, however slight, that we have something else going on. And I think it's normal to hold on to that hope. It's maybe kind of like a denial in a way. So, yes, an officially diagnosis is going to be very shocking I would think.

I'm diagnosed CIS right now and I hold my breath every time I go to the neuro's office or get an MRI that something new is going to sprout up and I will get that official diagnosis. I don't want it. I'm perfectly fine not knowing for sure! But I think my neuro is pretty sure because otherwise, he would not have prescribed me Rebif.

[talulah]

Yep, denial is a nice land!

I have been "peering" at this site for over a year now and this one (post or whatever you call these things) really hit home. I keep pretending I don't have MS even though I poop out so easily, can't feel my toes or fingers or lips or cheeks and cannot keep my balance or speak the words I want to say (my family finds that most entertaining when I want something to eat and I am telling them it is in the washing machine etc.) and now this "post" has opened up a flood of senses and anger and maybe I do have the damn thing and I will have to keep shooting and rotating sites on my body and take so many pills a day they barely fit in the large pill container my husband got me and I was mad at him because I realized I cannot remember what pill I took or when and now I think I may need a good cry but at least this site has shown me that there are others fighting all this! Sorry about the rant and lack of puncuation.

Now that that is out, I have to go, because my husband just called to say he is outside and he will take me home. Boy do I resent being treated like a kid that cannot drive. I can. I would immediately pull over when I started to feel my ankles and feet twisting in the most bizarre and cruel ways to sprain my own anke and work it's mean way up my leg and twisting me in all sorts of contorted ways I wasn't meant to do or go to a nice restaurant and suddenly the fork is impossible to hold because my fingers and hand and wrist and arm have to start showing off for the rest of the guests gazing in horror and screaming, take her to the hospital. Sorry gotta go, but I will be back. Thank you!

Dear Tallulah...please use more punctuation as this post is very difficult to read for those with vision problems.

[justacowgirl]

You're going to be ok.

Stick with us.

Justacowgirl

[RavenousWolf]

I don't know if this is the correct way to describe it but for me "ignorance is bliss" because I simply didn't know anything about this disease. Living in the brutal and humid heat of south Texas all of my life, being male, and Hispanic, this disease was simply out of my realm of experience.

However, it seems that so many people on this message board were very well aquainted about MS and with people who had it. For me, I didn't know anybody and I didn't even know what MS entailed.

So I just kept going on my merry way.

One neurologist even said that my disabilty was very mild. However, I have never viewed myself as disabled and I feel there is no reason to behave like that because I don't have much, if anything, that limits me; other than age.

I am in denial too

I am in denial too. I went to the doctor this week and for the THIRD time I heard that I have MS and broke down sobbing in the doctor office.

In telling my sister about this, she said the only person that does not know that I have MS is me.

I read a post this morning on here somewhere telling other what it feels like to have MS. No disrespect to the author but it made me break down in tears knowing that what he wrote I could be saying to myself.

It described all these symptoms that I have been living with but don't seek care for. I still try to blame all the symptoms on something that I am doing, like "I just need to exercise more", or "I need to go get new shoes", or " I need to pay better attention to the conversation".

Yesterday I went to the grocery store and came home with nothing. Not even sure what I went there for.

I chose items based on what I could carry from the car to the house and then I looked at it all and left without anything, knowing that I would not be able to get any of it in the house.

I really need someone to help me do all my chores. I can't get the laundry done. But still I don't have MS, according to me.

I should have posted this in the babbling forum but I don't know where that might be. Sorry!

Thank you for listening.

~ spy