Shouldn't be but thrilled
 

Hey y'all just got off the phone with my doctor, and it is MS! :D No more wondering if I'm just being a baby over pain, no more questioning why my body is at war with itself. I know it would probably be better if I was just being a baby over pain than having this terrible disorder, but still just too happy to know at long last what is wrong with me... Well aside from the psychological issues :p

But it's been a long time coming from, suspect, to nearly confirmed to finally CONFIRMED! So relieved, and so happy to have an answer.

It is a little bit weird to be happy about getting diagnosed with MS. I had the same feeling when my doctor finally diagnosed me.

Isn't it great that they at least believe you, and you don't have a bunch of doctors looking at you thinking you're a hypochondriac??? I hated that feeling. (they still do it sometimes tho, even with the diagnosis)

I'm happy I know what it is, but I'm still supremely peeved that I have it.

When I got my diagnosis I felt such relief. Finally someone believed that I was feeling what I was feeling. Someone didn't think I was just being a crybaby, or a hypochondriac. Go on a diet, they'd say. Get some exercise, they'd say. Learn to control your stress, they'd say. But finally I had proof. I felt vindicated.

Congratulations ... or my sympathy ...
 

I sort of know the feeling. Back in '95 I went to my PCP because I weakened when I was too warm and I was stumbling when walking. I also got that annoying electrical buzz down my back and leg when I looked down. (L'hermittes Syndrome).

About 10 years earlier I had experienced a gran mal seisure caused by a major blood clot in my brain that put me in a coma for several days and a month in the hospital. Turned out that stroke was caused by a blood disorder I'd inherited from my mother called Protein S Deficiency. It killed her at age
40.

I was worried I'd had another stroke.

Next came the MRI's, the LP and the EVP's. That made the final MS dx not as bad as the alternative.

We get it - we aren't really happy about having a sucky disease liek MS but are happy it is confirmed and "it" has a name. Almost like sweet justification for knowing for years that something was wrong. Limbo time was the worst; at times I felt like I had to fight to get cared for & properly diagnosed. Heck, I had one doc label me as hypochondriac housewife LOL

BTW- side benefit of official status: all those medical forms became so simple to fill out. Under the 'what's wrong' section all you have to put is 2 little letters. MS says it all :wink:

Welcome to the club nobody can leave - we will teach you the secret handshake and send along the Tshirt :hug:

*******
I was promised a really cool jacket! I already have a blue scarf to tell the world I belong to the "Crips" (gang- red is The Bloods)

Woohoo! T-shirts! Thanks y'all, my doctor seemed to be tripped up when she was talking over the phone with me since like a dog begging for biscuits I was "yeah...yeah! Ehhheheeee" while she was solemn and throwing out... 'Unfortunatelies' but my friends in town and even my pain mgmt doctor did give me a big smile and a congratulations before remembering that it's not really good news...

Then I got condolences lol. Which makes me wonder how much of this disease shows who your friends truly are. Only a few people I know gave the standard sympathetic nod with the mutters of 'terrible shame', but they were all ones I considered acquaintances anyways, my imaginary friends didn't like their imaginary friends. Though it's not like I have a ton of friends, though I'm finding I have more than I thought. My mother has been telling people at her work, and laughs since the ones that really know me, all have the same 'that's wonderful!... I mean terrible but...' Reaction.

It seems I've become something of a local celebrity, once famous for painting penguins on her stores windows, now known as MS girl, able to make people question their humanity over their excitement for me. We'll see how they feel in a few years, how much they whine over my never calling, or coming out to play though :p I'm just happy that none of them feel too bad for me, or treat it like a death sentence, that to me is far worse than an excited hug over an answer before they like me remember it's not an especially happy answer.

I was happy when I got the dx...until the box of Copaxone was delivered. I cried as I opened the box and saw the syringes. it made the disease VERY real:(

i knew my workup was pointing to MS and i had already begun to research it.
when i got the phone call from my dr confirming the dx i too cried. i knew things wouldn't be the same.

2 yrs later i had to give up my job and career. however, i've been lucky. i've been pretty stable for 11 yrs. still driving and independent.

listen to your body. it will tell you when to stop and go. and you'll figure out what if any accommodations you need to make to the disease.

glad you have an answer. at least now you have control and can make a medical plan.

I researched the disease as well, beforehand, the first time it was mentioned as a probability was ten years ago by my old GP, of course he also threw out some others that were much worse than MS. I guess the best or worst of this disease is that there's not much telling how fast or how far you'll progress.

I seem to be holding steady at a two/three year malfunction, but it's not like a lot of things out there where the doctor can map out your future, I might be completely wheelchair bound tomorrow, or never, blind in six years or six months or have 20/20 for life. But the unknown doesn't frighten me too much since it's the same for could happen, as for not. Removing any mentally automated symptoms, which would have been more of a concern if it was something else. So knowing the doctors and researcher can no more tell me what to expect than a seer can tell me the winning lottery numbers, helps me at least.

I can be as stubborn as I like and force myself to do as much as I want, without having the folks in white coats convincing me I can't, won't, or just give up. There isn't a cure, but for the same token there isn't really a prognosis, which I find greatly assists my mental state. Of course I haven't started sticking myself yet with meds, that might influence me a bit, but then again I've been a walking pharmacy for the past ten years already so it's just adding one more shot or pill to the mix.

And it's not like I'm trying to be unrealistic either, or overtly optimistic, one thing is certain, I won't be running any marathons again in this lifetime, won't be able to take the backpacking trip across the Appalachians (carrying everything we need for a month's journey on foot), and more than likely won't be training horses, at least by myself anymore. But I should be able to go camping still, might be able to enjoy a short hike, and could potentially train a horse or two with a bit of help. My life isn't over, just different but then it was before the dx...

Now with a dx, at least I know why it changed so much, that I didn't just adopt some defeatist attitude somewhere along the way and suddenly become a lazy whiner. I suspect most of you know or can well imagine the berations I handed myself, not that I think it will stop completely now, but hopefully I will learn my limits and come to accept them. It's strangely liberating, if one can say such a thing about a degenerative disease???

I'm still in limbo and would really like an answer ... just so I could have a plan of some sort. I suspect I will be relieved -- actually, after the ups and downs and all the things that have been implied, then un-implied -- well, I suspect I won't believe him initially if it comes to an actual dx :rolleyes:.

I'm going to say congratulations on your dx because I know intimately how crazy limbo is. Having said that ... it's a journey on both sides of the diagnosis.

Be well.

When I was diagnosed I felt sick... and scared... and powerless....and relieved....all at the same time.

I cant describe it properly, but knowing I wasn't just a hypochondriac, and knowing that the beast had a name was somehow liberating. Like the hypochondriac who writes 'see I told you I was sick' on their headstone, that validation was so very important to me.

It didn't stop me from feeling scared and lonely and devastated though. Remember this was thirteen years ago, and the treatments, information and outlook has improved a lot since then.

it's good that you are no longer in limbo - I was fortunate enough not to have much of that - but what there was, was awful. our dx is not a reason to celebrate but there are so many worse things out there that you (and I) could have.

I just remember being relieved that I didn't have a Brain tumor.:eek:.
Especially since the Neuro who DXed me was a reknown Brain Surgeon.

I'm glad to hear you finally have a name to your symptoms. I totally understand the relief of now knowing what it is that you are dealing with. It's kind of bittersweet in a sense. So, welcome to the club. :hug:

Congrats! I am just entering this world of MS. I do not have the diagnosis yet but I had no idea that some thing was wrong until I started having double vision. (one eye covered) After two eye exams and a referral to a neurologist/eye dr. Who ordered an MRI (last week)
I couldn't imagine a doctor not taking my symptoms seriously.
I have another autoimmune disease so I think some of it blends in like the fatigue and pain. so we will see. I do not like that I am waiting 2 weeks to go over the mri report that clearly states lesions and suspect for early MS.

I was honestly convinced for a while that I had Motor Neurones when I started slurring and tripping over myself before I had my first 'major' attasck- imagine my relief!

As I said...bad but could be so much worse

Hi Summer, welcome home..:hug:

I too was thrilled to hear "It's MS" from my neurologist. I had worked it up in my mind to be something much, much worse. (Not that MS is a walk in the park, I was relieved to finally have answers too to explain what was going on with my body, as many had, by that point, labelled me a hypochondriac.)

I was relieved too. For several years I'd been thinking it might be a brain tumor or a spinal tumor. Or maybe just stress, but if it was stress, why weren't the symptoms going away when the stress eased up?

So it was settled--it was "just" MS. A weird demyelinating disease that happens to some people for no known reason.

Happy Diagnosis!
 

It's not weird, I think anyone with neuro symptoms understands what you said.

I'm 2 years now with numbness, tingling, pins and needles, random sharp pains, muscle spasms, gripping pain, limp, occasional slurring, hives, space walking, sea sickness on land, incontinence, occasional space cadet, muscle twitching orchestra, severe fatigue and swallowing difficulties.All happened within two years.

I went from playing tennis and travelling to What The Fudge happened to my body?

We get dismissed by sooo many Drs that we start thinking we are going mental.
Drs tell you it's stress or normal. I've been "normal" for over 30 years. I KNOW what "normal" is for my body :p

I have a brain lesion and am having final spine MRI in a few weeks. My Neuro said this will probably be the last test I need for diagnosis because I have so many symptoms.

I am sorry you have a horrid disease but I'm happy for you that you've been diagnosed and can start treatment :)