What is (or was) your biggest fear upon diagnosis?

[sllowe]

Hi there,

We all have so many varied experiences, thought it would be good to ask what was your biggest fear when you heard you had MS? Or, one of the infamous mimics? And, I don't want to exclude our limbolanders -- you are a huge part of our family here. This is for you too! I hope this helps you too.  If even small, there had to be something you were scared of. If you feel comfortable, spill it! It's a good way for us all to get to know one another a little more.

My fear was that the Drs were wrong. As far as I was concerned, I definitely had a stroke. I wasn't afraid to have MS, just didn't believe they were right. Heck, I knew nothing about MS. And, I was smack in the middle of my 1st attack. I was definitely scared (though I'd never have admitted it to anyone then) each day waking up to what I lost most, which was the ability to think and react all at the same time - it was chewing, driving, looking, reaching, writing, listening and responding to people, etc.  Whole nother meaning to walking and chewing gum at the same time, haha

Seriously though, what got you going?

-Shell

[Audrey_M]

My biggest fears? I’m in Limbo Land, so that’s my jumping point. I’m going to echo a lot of what others have said.

-I guess I’d have to put on top of the list not getting a DX and continuing to see the quality of my life and health decline. Right now, it’s the fear of the unknown. I’m not the same person I used to be physically, mentally or emotionally. I have accepted that much of what is going on is the new me and is not reversible. If I knew what it was, I’d be in a better position to mentally and emotionally prepare myself to be able to deal with it.

-Like others of my age group, I worry about how this will affect me financially. I’m in my mid 50’s and a single parent of a 20 year old. What if things get to the point where I cannot work? My employer does not offer disability insurance. I have little built up in retirement plans and having worked for non-profits for many years.We have just eked by financially. I have no nest egg and would not be able to afford health insurance. Ironically, when I was in my 20’s, I worked on Wall Street and was raking in the big bucks. My life would be much different now if I had followed that path, yet I am happy with the choices I made.

-As far as a diagnosis is concerned, I would be relieved to have one, no matter what it could be. I then would be in the position to understand what is happening to my body, what I can or cannot expect as the disease progresses and make my own choices. I remember when I was younger thinking about how I would respond to a diagnosis of cancer; my thoughts on the subject are very different now. With a diagnosis, I would be able to take it one day at a time, knowing that I am deliberately choosing my path.

Thank you for bringing up a very important topic.

This is also the opportunity to stress the importance of having a living will and to understand what it can and cannot do for you. Laws vary from state to state. If you have strong beliefs in terms of medical intervention, please take steps to write a living will. If the thought scares you, think of it this way; a drunk driver is much more likely to kill you than MS.

Audrey

[momma2abcd]

my main fear is ending up in a wheel chair, my legs get weak after awhile and start hurting so then that leads to me to fear if my husband will be with me till the end of my life if I end up in a wheelchair will he continue to support and love me.

My other fear is every time something hurts in my body I think it is something else and maybe not MS and it could be fixed but I let it go and that situation gets worse but I just pass everything as MS symptom.

[MsWobbles]

Give feeding tubes a chance!!  Once you have a PEG tube, you can still eat normally if you want to.  Of course, once you lose the ability to swallow that ends that.  But still, most people I've heard from who had feeding tubes greatly appreciated them and wished they had gotten them earlier because the feeding tube allowed them to stop the lengthy mealtime struggle they had had before getting the tube, helped them to get the nutrition they needed for maximum performance.  Have you spoken to any people with feeding tubes?  If not, it might help put your minds more at ease.

I have had a couple of times when I could not swallow at all.  But then after napping for 4 or more hours, I regained my ability to swallow - it was fatigue that had blocked it.

WAF

[MsWobbles]

Hi, sllowe and all!

Thanks for including us Limbolanders too!

My biggest fear is not getting a diagnosis, of dying like my mother did with similar symptoms of weakness, falling, balance issues, aspiration, respiratory trouble etc, but no diagnosis.

Second biggest fear is being given an incorrect diagnosis.

Third fear is being diagnosed accurately with ALS.

That's it.  Those are my 3 biggies!!  Thanks for asking!

Weakandfalling

[Jepster]

I've been thinking about this for the last couple of days and I've come to the conclusion that the reason I don't currently fear anything is because my Sx so far have been mild and have cleared up, bar pins and needles. I guess it's different reading about other people's Sx than having them yourself. 

I was diagnosed last week, mainly due to a radiologist's report stating pretty categorically (apparently) that my lesions fulfilled the McDonald criteria. Clinically I doubt I'd have come close.

Having read people's stories on these boards, in some ways I feel a bit guilty about my diagnosis - there are so many people out there in limboland who're really being hit with awful Sx and yet are being dismissed by the practitioners. Therefore I guess that my main feeling towards the Dx is 'false pretender' - I'm really, really grateful for my current position, but wish that everyone could find medical support for theirs.

[doni54]

Ummm...I have many of the same fears as some of you, but I guess my biggest fear is to never have a dx, whether it be MS or some other monster.  It's hard to live through days when you can't think, or walk or talk and your own family looks at you and you know they wonder if all this is real........sigh........

I can remember feeling validated about MS when my GP said, "You are classic MS, what's wrong with your stupid Neuro?"  That lasted a couple of months, but I KNOW without a firm dx from a neuro that I am still consider a "Limbolander".

I have gone back to work as I didn't have a choice, and it becomes really difficult to hide my health problems.  Having to get up 2 hrs earlier than most folks would, just so that I can have plenty of time to take care of bathroom duties and pray that I don't have an accident on the way to work, or at work.  

The days when the tremors take over and I'm using the computer and my fingers go nuts and click the mouse 4 or 5 times instead of one, or when I'm having to answer the phone and call people over the intercom and I can't form the words......it's just so embarrassing.

My second biggest fear is losing my eyesight.  My right eye is never clear anymore and some days practically useless.  I think I can handle the urine/bowel incontinence, the twitches, the buzzing, the burning, the spasms, the spasticity, the numb leg, the walking like Frankenstein's monster, etc., etc., etc.  But the thought of losing my eyesight..............I just don't know what I would do, or how I would ever handle that.

One bright spot is that soon I will be covered by health insurance and maybe, just maybe, I will have the opportunity to get my dx and at long last not be wandering around lost in the land of limbo.............

doni