So many questions...

[Micheleh]

I am not diagnosed as of yet.... My Neuro is sure that I have MS though due to my latest issues. My arm is going numb/tingly/burning/pins and needles on and off for the last few months. According to my Neuro I have shown every sign except for actual vision loss and losing the ability to walk. I go for yet another MRI of my brain and spine on Jan 22. The doc says with my arm doing what it is he is almost positive I have developed a lesion on my spine. The only thing preventing my dx is the area all my lesions are. They are on the outer portions on my brain. Right now I am ok with the dx of demyelinating disease of the central nervous system, unspecified.

I guess my questions are..

1. Will this lump in my throat and anxiety go away when I get the dx or will it get worse?
2. Why am I so terrified to get the dx? I mean it won't change my life like winning the lottery, but still I am scared ***less!!
3. What was the first thing you changed in your life after your dx?
4. How fast are your symptoms progressing??
I have so many more, but my brain is foggy..

Thank You!!!

[Thinkimjob]

Well, at least you'll know for sure.

The diagnosis itself still came as a shock to me, even though I knew it was coming, because there's that natural human instinct to hope for the best and to tell yourself it won't happen to you.

It's hearing it, and seeing it written down, and then it's real.
I walked around in a tearful, stunned mullet daze, telling myself it just couldn't be true for quite a few weeks.

It's like any terrible loss. The grief never goes away completely, but it becomes less intense and bearable. It's a cliche, but you do get used it, and you won't think about it all day every day.

First thing that changed was having to give myself injections, which I didn't mind because I wanted to do something, anything to try to stop it.

As for progression, no one really knows. I've had this for 16 years, and it only got hard in the last few years. Better drugs these days will probably mean more "good" years for people.

[tommylee]

[QUOTE=Micheleh;1438895]

I guess my questions are..

1. Will this lump in my throat and anxiety go away when I get the dx or will it get worse?

For me, I just got used to it. After a few years it seems to go away or I just accepted it.

2. Why am I so terrified to get the dx? I mean it won't change my life like winning the lottery, but still I am scared ***less!!

Could be because it is like awaiting a sentence? Like, You are waiting to be sentenced to life with MS. ?

3. What was the first thing you changed in your life after your dx?

I started taking better care of myself, eating better and resting more.

4. How fast are your symptoms progressing??
I have so many more, but my brain is foggy..

They seem to be moving slow. However it is a constant struggle to figure out how I am going to work with my constantly changing body.
I do not know how much of what I deal with is MS and what is just getting older?
My wife seems to suffer from a "foggy mind" as much as me and she does not have MS.

I have been Dx for 15 years, symptoms for 22 years. I can still walk and pass for normal most days. (but it takes effort)
Life goes on, it is just a bit more difficult. It just does not flow so naturally anymore for me.

Welcome. I hope you find some support here and other places.

[Mable]

One major change I made in my life was to avoid drama. That was my neuro's idea. As he was sending me off after my diagnosis, he said, "Stay away from people who bring you down."

So, I quit people and organizations that looked like they were remotely unhealthy. In the past, I would have tried harder and suffered more. Now, I tell myself that taking care of myself means staying peaceful.

It's worked out well for me.

[zeak]

My first reaction was : bittersweet, I knew I had it long before dx, just had to get the dr's to take me seriously. Then I got mad, cried, came to this miracle site, it is that to me, here I can be ME. Honest with how I feel, think, need, and I hope I can help others here also.
I welcome you here, but am sad that MS made us "talk".
After a while your lump in your throat will lessen and MS, if that is your dx, will become a fact of life, a journey as we say here. Each is different and we all deal with it in our own way, maybe some guidance from more "experienced" fellow MS friends.

[1936siols]

questions

Maybe I'm nuts but I was diagnoses when there was no medicines and and all doctors told you there was nothing wrong. When I finally got a diagnosis I was so happy because I was finally told there was something wrong. I was driving home from the doctors when I started to realize that Ms didn't sound like a good thing to have. I had never heard the words before.

On the way home I stopped at the library to see if I could find out what MS is like. I was brought up that you had to accept the bad along with good. I have gone through the whole relm of symptoms. If it exists I have had it.

Many things I couldn't do so I just had to find a different way to do them. There honestly isn't anything I haven't found a way of getting around.

Now the treatment and ways of dealing with it are so different when I was diagnosed. They would come up with new drugs that were going to work miracles but it didn't. It would be dropped and a few years later there would be another drug that would be dropped. The miracles just never came true.

[KatieAgain]

One major change I made in my life was to avoid drama. That was my neuro's idea. As he was sending me off after my diagnosis, he said, "Stay away from people who bring you down."

This is probably some of the best advice you will ever get. I did exactly the same, but it took me a few years to figure it out. I eliminated all toxic people out of my life!

My MS was initially running a very benign course, that changed after about 6 or 7 years. It got ugly really fast, stabilized, got really, really ugly, and I am stable once again thanks to my DMD.

Everyone is different in regards to progression, and MS is a big deal...a really big deal.

One thing I did on diagnosis and we just had a thread about this is made a Bucket List. I did not wait to do things until later in life.

[venice]

For me, the diagnosis brought relief. I was pretty sure it was MS, so having that label applied was reassuring. It explained issues I had had before, and made me feel like there was something specific I could tackle. I do have anxiety and fear (and anger and sadness). Seven months on, these feelings are less severe, but they are always there, and I am not sure they will ever go away. I think I will always grieve for the lost me and be anxious about the future.

One of the first things I did was read as much as I could, as widely as I could, about it. Lots changed and continues to change. I started doing less, which is really, really hard for me, and I still have days where I completely overdo it, and then pay for it. And, I started taking a DMD: as quickly as I could get on it, I was.

I don't know how fast my disease is progressing but I have had several symptoms that were not there at diagnosis, which took me by surprise, b/c I was expecting to be dealing with the presenting issues, not with new ones. The ones that seem to be the most stubborn are burning on the sole of one foot and increasing issues with my right foot/leg in terms of some stiffness and sensitivity (e.g., to cold). These worry me the most.

[Micheleh]

Thank You everyone!!! I have 1 more question.. How do you deal with body parts going numb just out of the blue?? I am having issues with all 4 limbs...

[1936siols]

Questions

Many years ago there were no medications so I took none. I did ACTH treatments that is all there was. I had so much numbness I could not walk or use other limbs. That didn't work to well so I relearned to walk without feeling in my legs by watching every step I took. The same with other limbs. I got pretty good at it.

[Kimba22]

Thank You everyone!!! I have 1 more question.. How do you deal with body parts going numb just out of the blue?? I am having issues with all 4 limbs...

Hi Micheleh,

Sorry to hear about the numbness! Here's a link about numbness from the National MS Society. There's not much that can be done for it, except possibly IV steroids. http://www.nationalmssociety.org/abo...ess/index.aspx depending on how severely this is affecting your life, I think a call to your doctor is in order. It may be hard for you to believe now, but there are people who do just learn to live with it. It just becomes our new normal.

Best wishes ,

[Micheleh]

My Neuro has me on 2,400 mgs a day of Gabapentin for spasms and the numb.tingly/burning feeling. The medicine works, but leaves me very very dizzy, tired, and confused. I guess I am trading one nuisance for another...
I just don't know what to do...

I guess I will just deal till 2/11 and then ask a bunch of questions.... Gotta buy a pad and start writing them down...
Anyone have some suggestions on questions I should ask??