Re: doubts about MS dx and possible MS

[Guest guest]

You know Sharon...I did in the beginning..Even when I did my own research and realized I did have MS..I diagnosed myself a week before the doctors did...My husband said...no that can't be...I told him to come and look..that I had all the classic syptoms and I have had them all a long...It can't possibly be anything else...

But then..Like many of us, I actually HEAR those words come out my doctors mouth and I go into shock..because that day was then a complete blurr...Nurses coming to my home doing the IV and steroid thing, Plans being made asap for my therapy to start...(I didn't get to chose mine..I was just placed on it)...my head was spinning....Then I started going through all those stages a newly diagnosed person goes through...All Year..Yep doubts...and lots of them..but it was more of a Denial doubt..Not accepting the fact that you have a disease..that was my hardest issue to accept..

Toward the end of my first year...I began to believe and accept..Yep, I have it. As a matter of fact, I have reason to believe that I have probably had MS for over 20 years or all my life and just never new it..Just little signs like, when I was teen I would have heat strokes constantly..stuff like that.So, now..I have no doubt anymore...I know and simply deal with each day as it comes. I like to think that I simply had and we all do from time to time...a great deal of MIXED emotions. Which I happen to believe is completely normal for what we all go through daily.

Hugs,http://andcoverageforall.info Owner/Founder And Coverage For All 2 Yahoo Grouphttp://health.groups.yahoo.com/group/ACFA2/

[Guest guest]

I don't think your feelings are Irrational...these are your feelings..and they are Very Real, you know?? You can't sit there and just discount your feelings like that!!! Feelings are very real and each person feels something differently. Please don't discount your feelings, Sharon....you know what you feel.

Hugs,http://andcoverageforall.info Owner/Founder And Coverage For All 2 Yahoo Grouphttp://health.groups.yahoo.com/group/ACFA2/

[Guest guest]

Hi Sharon!

For several years I too had the dx of transverse myelitis. For those

who don't know, this is a very rare disorder that you can think of as

"single sclerosis". It attacks the spinal cord (NOT the brain) and is

supposed to have one attack, then stop. Supposed to. For me, it just

kept "smoldering", and I couldn't get off steroids or a handle on my

symptoms. I wound up being treated in all the ways a patient with MS

would be treated, but without the right set of initials! Finally, we

discovered a lesion on my brain, and so the MS diagnosis was made. We'd

been testing all along, and knew a lot of things that this disorder was

NOT...and sometimes that's good enough for me.

For years, we've treated the symptoms of a spinal cord disorder, no

matter what the diagnosis was, and this continues. The only advantage

of having MS is that it makes the paperwork a bit easier, and that

people think that they know what is wrong with you, and are a bit more

understanding.

So, I don't worry about it. I know that IVIG, and Avonex help me a lot,

as do the other meds that I'm on, and that's good enough for me!

Sam

in Boston, hot and muggy!

[Guest guest]

You know, I didn't mean to sound smug here....

The day before I was diagnosed with TM, my neuro mentioned MS as a

diagnosis, and I just lost it. Literally couldn't talk about it. The

only person that I knew who had MS (they thought) was a young woman who

was severely affected, in a nursing home, and couldn't speak or walk.

That couldn't be me! So being diagnosed with TM was a relief. Little

did I know what a "kissin' cousin" TM was to MS!

Lucky for me, I have good insurance, a wonderful family, and supportive

medical team. I'm in one of the "Medical Mecca"s of the world, and

medically educated enough (we all should be!) to work with my team to

find a good treatment plan and good docs to work with. I know it is not

that way for everyone, and I do apologize for sounding like I knew it

all...

I've come to the point of taking the symptoms as they come and just

going on with my life, resting if I need to, going as much as I can,

listening to my body. I know I'm blessed.

Thankfully,

Sam

luthyen wrote:

Hi Sharon!

For several years I too had the dx of transverse myelitis. For those

who don't know, this is a very rare disorder that you can think of as

"single sclerosis". It attacks the spinal cord (NOT the brain) and is

supposed to have one attack, then stop. Supposed to. For me, it just

kept "smoldering", and I couldn't get off steroids or a handle on my

symptoms. I wound up being treated in all the ways a patient with MS

would be treated, but without the right set of initials! Finally, we

discovered a lesion on my brain, and so the MS diagnosis was made. We'd

been testing all along, and knew a lot of things that this disorder was

NOT...and sometimes that's good enough for me.

For years, we've treated the symptoms of a spinal cord disorder, no

matter what the diagnosis was, and this continues. The only advantage

of having MS is that it makes the paperwork a bit easier, and that

people think that they know what is wrong with you, and are a bit more

understanding.

So, I don't worry about it. I know that IVIG, and Avonex help me a lot,

as do the other meds that I'm on, and that's good enough for me!

Sam

in Boston, hot and muggy!