[michael178]

It feels like the world is divided into groups: those wishing to diagnosed with MS, and those who have it who wish they did not. Which group are you in.

[cricket52]

Michael:

There is a third group. Those in limbo who would like a diagnosis - so they could get back some empowerment and validation so they can manage their illness.

Since MS is a dx of exclusion they are waiting, sometimes for years, to get the help and support they need.

MS wannabes? I am sure there are a few hypochondriacs and cyberchondriacs who look for any excuse for attention.

As for those who have MS - they deserve all our respect and support and attention.

[Judy2]

Hi Michael!

Sorry to say I've been in the second group you mentioned for 17 years -- and probably 14 more before the official diagnosis. Now I'm in a wheelchair, constant pain, dizzy, eye problems, cognitive issues, spasticity -- and the list goes on. Tried all the CRABS with disasterous results but have been on LDN for around 2-1/2 years.

For those who "want" ms, forget it -- it's not all it's cracked up to be!!!! Take care.

[Chris66]

That's a pretty simplistic judgment.

Wanting a dx so that it's possible to move on (and hopefully forward) with a firm reality as a starting point is not the same thing as wanting to have a disease, in this case MS. I was dxed in 1991 and yes, you bet I wanted the dx. Did I want to have MS? Please, give me a break. But I did want to know what was wrong with me -- and I knew something was terribly wrong -- so I could go on from there.

Very few people actually want to be sick. Assuming that they do because they're searching for answers is a terrible indictment of their sanity. Yeah, sure, I get tired of people detailing every single little thing that's happening to them. But when I look back at the prodromal stage of my own MS, both before and after dx, I realize I did the same.

Chris

[michael178]

Yes, it is simplistic, and I apologize for ruffling so many feelings. I just found out my DX, after a seven year wait, so I assure you I know how you feel in the limbo of uncertainty. The irony of waiting is, of course, once you know, there really is no getting on with your life, you just imagine that's how it will be. But, at least, you can tell your friends you have X or Y or whatever it is. In my case, it is one of the leukodystrophies, Cadasils Disease to be specific. I was originally DX with MS, then three years later I was undiagnosed, and told I had an adult onset of an unknown leukodsytrophy which is the second largest group of people with a white matter disease. So I have experienced all of the groups. I have been undiagnosed, been diagnosed with MS, wished I didn't have it, and then learned to be wary of what you wish for.

[doydie]

I think Cricket might be in that first group. She has sx, has had a lot of tests and all she wants is just to have a dx so she can get the respect from the medical world that goes along with it.

Fortunately for me, my neuro gave me a dx of probable MS so I can get the treatment I need. Her and I have talked about the fact that after 10 years, most of the sx are the same and the MRI is exactly the same, just one big ol' bad lesion. So is it still probable MS. But she is content to stay with that dx until something else shows up. So I am content also.

Good luck Cricket.

[Chris66]

"The irony of waiting is, of course, once you know, there really is no getting on with your life, you just imagine that's how it will be."

I felt this way, too, for about six months after my dx. After that, my life would let me wait no longer. My family wanted me to leave my work immediately (I had my own business boarding and training horses and teaching riding) to retrain for something more "suitable" (a.k.a possible from a wheelchair). I had to decide what to do with my life. I decided to stay with the horses for a number of reasons, chief among them that I wasn't prepared to live as if I expected disablement, particularly when nobody, including doctors, could predict that. As it turns out, I was very unlucky. I've never regretted that decision, though. I learned a lot during that time, about horses, riding, and about being sick.

After I knew for sure that MS was taking away my life with horses I went through another period of months when I was sure my life was over. Then I went back to school. I had a blast at school and ended up getting a degree before MS took that away, too.

Life always goes on, no matter how much you imagine it won't. My current life certainly bears no resemblance to the life I was planning. Oh well.

Chris

[Pegshere]

Hi Chris,, I am also another horsewoman, who got sidelined by MS,, I still ride,, my husband picks me up, and sets me in the saddle,as long as I can sit my saddle, I vow to ride,,, was a barrel racer, roper, rodeo queen..

I use a cane,, do pool therapy.. was a Phys ed teacher,, so many venues I did,, and then MS...

I was DXed in 2 weeks,, told my husband,,"stay or go".. he chose to stay...

my horse senses when I am not balanced, and adjusts,, he sniffs my knee,, bless his heart,,, amazing animals horses are...

[cricket52]

"I think Cricket might be in that first group. She has sx, has had a lot of tests and all she wants is just to have a dx so she can get the respect from the medical world that goes along with it."

Thanks Doydie. Respect and support. I do get that from my MS neuro but definitely not from my PCP. During my last major 'episode' he said it wasn't possible to walk into his office one day and not the next. Well, I must be the queen of hypochondriacs because it is possible, it has happened before and it will probably happen again. I see my MS neuro once a year. Meanwhile my signs and symptoms have progressed to the point where leaving the house is a major challenge. I told my sister the next time I have a major setback she is to put me on a bus and ship me to Ottawa. I'll figure it out when I get there. It's hard when your neuro is 5 hours away and in the winter it might as well be on the other side of the country. Northern travel is a challenge. See below - those black things on the highway are bears - it's a northern Ontario street gang.

Michael fits what I think must be one of the worst possible scenarios though. To be dx'd with MS and then undiagnosed must be horrible. I can't imagine how frustrating, confusing and scary that would be. Having a rare disease as a final dx can't be pleasant either. It took him all those years to get to the point where he at least knew what was happening.

Medicine is not an exact science. Having a quality of life is important and for many of us is that too much to expect? My MS neuro is the one physician who 'gets' that. Forum support is part of how I cope during the rough spots.

[Chris66]

Hi Peg:

I had to stop riding altogether maybe four years ago, mainly because I could no longer sit unsupported, and my abs and lats are so weak. My balance is shot, too, and I can't hold my arms in position. I was, as I have said, very unlucky. Not that many PWMS are affected throughout their entire body as I am. Now I'm sort of like an incomplete quad -- and the MS continues to progress.

My horses, too, were amazing in their accommadation to my disability. But horses are Zen masters of living in the moment. Unlike us, letting go is a part of their being; they don't agonize over what was, but only concern themselves over what is, and there is no future in horse. We could learn a thing or two from them!

I very much hope that you'll never have to give up riding.


Chris