NeuroTalk Support Groups - Testing underway; looks like MS

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Testing underway; looks like MS

Hi. This is not my first time in these forums. I grew up with epilepsy and when this was BrainTalk I received so much support.

First an apology - I posted this on another site but did not receive responses. So am trying here as I really need support.

This is not my first time in life with health issues. Epilepsy (since 12, well controlled) a fall down the stairs, broken back, aspiration pneumonia, breast cancer (double mastectomy), two children with serious chronic health problems (the biggest challenge of them all)... None ave been insurmountable.

I'm happy to report, and extremely thankful (!) that I am currently able to work full time, take care of my kids and my wonderful, wonderful dog (single Mom) and to enjoy "the little things"...

But...

I am now going through a full workup for MS. Brain, all spine, blood work.

And the other health "stuff" did not make me "mad" - I was anxious, scared, but swore that none of the "stuff" would ever get the best of me. I still struggle with my one child's serious chronic health issue (anorexia) - it is terrifying.

Why now do I/my kids need to go through another "thing"? That is of course a rhetorical question, and I guess that I am just venting but sure feel the need to do so.

My brother has MS; he was diagnosed 5 years ago. He has had bad periods, and yucky medicines, but overall has been very lucky in terms of his symptoms.

I am finally getting tested... I have resisted it thinking that it would not make a difference. But after tripping, falling, pain, and now serious walking and balance issues, I went to my internist who sent me to a neurologist (I have seen neurologists all my darn life with the seizure disorder) to do a workup.

Saw her last week; she is a calm, nice, practical woman and I am glad to have met her. She was very forthright. She said, after having me do all of the "tests" that my symptoms are not normal at all. I have had years of what I have called "my leg pain" - diagnoseded with 'restless leg', fibro., etc. but this is now of a different intensity and quality. I have fallen/tripped multiple times. I am "wobbly" for lack of a better term, feel like I am going to fall, cannot walk without lurching... am in pain more often than not (it used to be that I would have periods without any problems); cannot walk up or down stairs without extreme efforts - avoid curbs, etc. Hyperreflexia, one side more than the other. I'm scared about mobility.

I was trying to think positively about getting a balance dog (even before the true diagnosis) but right now I could not keep up with the training. I do have a wonderful partner dog who needs very little care at all. Iwas a runner, fit, could bench press my own weight.. and now am unwell.

Tomorrow are 4 MRIS. Next day is ENG and bloodwork. Next week results discussion.

So Im not blind to what may or may not be coming. But just MAD.

I don't know what else to say; I don't like to complain. I don't want to tell my family because of my brother.

I did say something to both kids (teens) - as I learned a lesson in the past. When I found out I had breast cancer, I did not tell them until I needed a full mastectomy. And they felt betrayed/that I had kept a secret. so I just said, "You know I have had my "leg pain", and that I have asked you to help me with things a lot more lately so I saw a doctor and I am going to have some tests". They asked "for what", and I said, it could be something very easy to deal with, like nothing (!) or it could be something that we will just deal with, as we have done in the past. My daughter, who worried that I would die from the breast cancer, said "Will this make you die?" and I said no, I truly don't think so - we will figure this out.

Enough writing - if you have read this thank you...I just don't really want to deal with this - not to whine, just to say "Darn it all!".

Welcome KP and thank you for sharing your story with us.:hug:

Hi KP. I don't blame you for being mad. That's a lot to digest. I was overwhelmed just finding out I had MS in a short time so I can only imagine what you must be going through. Hang in there. :hug:

Hi KP -- welcome to neurotalk. I hope you can get the support you need from us. No need to apologize for being mad and fed up! I feel like I've had my quota of "bad life events" too but always managed to scrape by pretty well. Then I recently got dumped on again. So when the next bad thing comes along and you are really tired of it all you have to just ask the universe "Really??" "More?" If it wasn't so overwhelming it would almost be comical! Keep us posted and I hope the news is better than you expect. :hug:

hello and welcome to NT,

you have a full plate and it's admirable how you have dealt with it all.
keep us posted and we'll be here for you.

Hi there, KP. Welcome. I think you'll like it here. We laugh together, we cry together. We prop each other up when needed. I think you'll fit in just fine.

Welcome KP-

Our lives stories read very similar - epilepsy, broken neck, disabled kid, etc. I hope what I have to offer helps you "exhale" for a small period:

When I was at the testing stage I had a dear friend re-orient me in a way that helped me immensly. She said to me:

Jane, imagine for a moment the doctor just finished telling you "You have MS" What exactly would be different in your life? You would still be like you are right now, not suddenly much worse or much better. The only thing different would be you would have a 'name' for what has been going on. But you would be given the luxury of being able to plan better, be able to fill out all those damn doctor's forms with just two little letters. You would be able to do something about it. Remember you are still the person we all know, you just know have a new diagnosis.

KP I hope you find out what is going on with your health, regardless of whether it is MS or something else. I hope you can do something about it (insurance? medication, etc). Just take it all one moment at a time & keep things in perspective. And... of course it is okay to get mad as hell - after all, it is a club nobody asks to join.

Looking forward to getting to know you better - we are a fairly wonderful family, full of wit and wisdom (and some really bad humor too!)

Welcome to NT...there is a lot of info, support, and whine parties here;) If we didn't have a place like this to vent, where friends understand exactly what you're feeling and dealing with, I think we'd all do a Thelma and Louise....

Try to keep a symptom journal with dates of onset, as well as your list of questions for your doc. If possible, bring another set of ears with you. It can be overwhelming, and I have cognitive issues that inhibit my memory, so DH coming with helps the neuro by telling him what he sees me going through and he also remembers what the doc says...

You've had a lot to deal with...especially with your children's issues. Prayers for you and your family as you deal with another challenge.:hug:

Keep us up to date...