world is divided into 2 groups
 

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.

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.

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.

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

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.

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.

"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

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...

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. :p 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.

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

{{{{ Chris }}}},, we do the best we can, thats all God wants us to do,, I wish , this disease made it easier for everyone to deal with life as it is,,

hang in there,,

my horse Don Ho,, { he loves water}, a quarter horse,, my husband found him, and trained him for me,, put him through the paces for me, to make sure, he was safe,, water, hills, timber,, he passed with flying colors, so far, he hasn't let me down,, cept the time, we both fell off a cliff, { ground was dry, and it crumbled} and Don Ho, rolled down the hill,, kicking me, breaking my ankle,, ,, his fault ?? naaaahhh,,,,

The great thing about a life lived with horses, as mine has been, is that I unconsciously began understanding how to get into the now and live each day as it happens. Of course, when working with horses, if a person isn't in the moment happening bodily injury (or even death) can happen. This way of thinking became a habit and has been a great help to me in coping with my life with MS. My frustration, grief, and anger levels are, at times, so high it's insane, and I sometimes wonder why I'm not insane -- or at least clinically depressed. That I'm not either I attribute to my parents, whose solid upbringing grounded me emotionally, and the horses, who taught me not to dwell on or in the past, get in the now, and not worry overmuch about the future.

I've had many horses in my life but my last horse, a TB named Magic Hero (that's his picture above), is the horse in my heart.

Chris

Hi Michael,
My husband was diagnoised with MS. 8 months ago having a real hard
time with the energy problem he has been on--AMANTADINE 100mg. capsules
was taken 4 a day-- he is now on RITALIN 5mg. 2t.a day--he is crawling- if
any one out there has any suggestion's would really appreciate it-- he was
never sick a day in his life till this--he is 57yrs. old really doing a number on
him--he is on the REBIF injections 3T a week.would appreciate any in put.
TAKE CARE
SUSAN

Hi Susan:

In my experience there are two different kinds of fatigue. The first is what I call "hit you over the head and put you to sleep" fatigue, and this is the fatigue that seems to be helped by meds such as Amatadine, Ritalin, and Provigil. It is this sort of fatigue that most PWMS seem to experience.

The second sort of fatigue is neurological muscular fatigue, which is closely related to weakness and has no element of sleepiness in it. This is the sort of fatigue that affects me. When I crash, it's difficult for me to even lift my elbows up to my WC's armrests, hold my head up, or accomplish a transfer from my WC to the couch. Sadly, no med I've ever taken for fatigue (and I've tried them all) touches this fatigue. The only thing that helps even a little is simply to remain still for several hours.

Chris

Susan,
If anyone solved the MS fatigue problem, you would hear an MS cheer around the world. In the MS support group I went to, it was acknowledged as the worst of all symptoms, even the guy in the wheelchair thought so. I took Amantadine too but it had little effect on me. I have also taken ritalin , and now I take Strattera, it has the same type effect as ritalin, but is non narcotic. It changes the mix of neurochemicals in the brain. It is also smoother, without the jitters of ritalin and one pill works for the entire day. In my case it also clears up the brain fog which I greatly appreciate.
In a lot of ways, the first days of MS are almost the hardest. And I sympathize with your husband. I too was very healthy when it hit me in my late 50's.
Actually, I hate to mention it, but at your husband's age he is considered too old to get MS, just like I was.
If he has other indicators pointing away from MS, like a clean spinal tap, he might want to get a second opinion at an MS specialty clinic...but, be warned, the alternatives to MS, the other white matter diseases, are almost worse than MS. They are usually fatal, and they have no treatments. On the positive side, though, they are usually very slow moving so the fatality only applies to the younger people who get them, and not having a treatment makes life so much simpler, there are no worries about what you're taking and whether it works or not. Good luck to you. P.S. You should go with your husband to a MS support group in your area.

Miserable,
If anyone would solve the energy/fatigue problem, everyone with MS would cheer. It is one of the worst symptoms, and meds usually cannot deal with it. Sorry.

Ooh, another Strattera user! Don't you love it? I previously took Provigil and then Ritalin--not (primarily) for fatigue but for "brain fog" related to dizziness--but Strattera is far and away better, in my case at least. It's given me back my head, and thus my career!

REgarding horses--have all you horse lovers read Jane Smiley's work, especially her book "Horse Heaven"? In that book, horses are characters. She really gets into the minds of horses. I never knew anything about horses, nor how amazing they are, but I have learned a lot from reading her books. She's a fantastic author.

Nancy T.

I'd just like to add that there are some out there who just want an answer.

For two months now (and from reading, I know some have been waiting longer for a dx), I've been having neurological problems. I think I have some things that go back further than that (ie - numbness & tingling on my right side). Every test I've had has came back within normal ranges -- and I've had MRIs, spinal tap, and EEG.

My life has came to a much different place and that's been the hard part. Because of my tremors, fatigue, and balance problems, I'm unable to work at the moment.

I don't wish MS on anyone -- but according to a specialist at Duke I saw, my symptoms are most closely inline with that prognosis. I don't care what it is, I just want to know what it is so I can know how to live my life...

thanks for letting me vent and add my two cents...

Welcome to Neurotalk, MrsWufie.:)

I hear you and I understand your frustration in waiting for a DX. Some wimpy damn Neuros, need to get with the program and use everything at their disposal to DX their patients, instead of dismissing thm as headcases.:mad:

Good luck Mrs and let us know how it goes.

:grouphug:

Thanks Sally!

You are completely right.....

Yes, mine started as a dx of a complicated migraine at the end of February....and by this point I'm questioning everything I know but the Lord!

Hi MrsWufie. Are you getting treated for any of your symptoms even w/o a dx?

I got my dx 4 months after my first onset of paralysis. They pretty much knew but had to wait until another episode.

I think having a DX definately validates everything you are going through. Without one, I think you will always have that doubt in the back of your mind. You also can't get on a CRAB if you want to. But some can get treated for their symptoms, and I hope that is the case for most of you...

Jena,
The only medication I'm on is neurotin to help slow down my nerves. So far, I can tell no change (other than controling the trigiminal neuralgia pain I was having). My neuro doesn't want to do anything at the moment -- and it's driving me crazy! She doesn't want me keeping a health diary or anything --which I think is odd since I'm having episodes of incontinence. And, I'm currently undergoing physical therapy. My feelings are if they can't find something, I'm going to do all that I can do on my end to try to make myself stronger.

The one thing I've learned is that the medical system moves slower than molasses!