Reaching out...

[palmtree]

It's been almost 5 months since my dx. I have been trying to be so brave and hopeful, trusting that the steroids and DMDs were going to make this thing go away.

Now it's all coming down on me now like a ton of bricks. I had more numbness and throat problems so my dr. ordered another mri. No more lesions, good news, just another episode of ON. She said my symptoms were just an activation of the existing lesions. This is so discouraging because it means I'm "stuck like this". All the numbness traveling around my body, the choking and a brain that doesn't seem to be working very well.

After 5 days on steroids at home, I feel so wired and so alone. When I go out people just see a person walking by. They cannot see what's going on inside me. I've told a couple of my friends that I have MS but I don't want to dwell on it.

I like to have something "going" in my life but Dr. appointments are taking all my time and energy. When do I get a break? I read all the threads on this website of people living with much worse disability than mine and wonder, How do you do it?

This time of year I usually feel energized. We have the balmy Santa Ana wind and beautiful sunsets. Halloween is coming and a few months of cool weather to look forward to. Right now, I see only the black of Halloween, not the bright orange pumpkins.

Maybe when the steroids wear off and I can get some sleep things will look different.

Just need to express all this to someone who can understand. I'm so empathetic when others are struggling but right now, it's me!

[tejokid]

Reaching back

Hi palmtree--we're almost the same age, but you are just setting out on your MS journey, and I was diagnosed 20 years ago. When I asked that first neurologist what I could expect, he said, "There's no way to know." Many things have changed since then--science has given us a lot of little miracles in the guise of new medications and understanding about the disease. The good news is that more of those little miracles are in the pipeline all the time, and the outcome will change our lives by leaps and bounds.

The bad news is that there's still "no way to know." Each of us is traveling the same road, but like your LA freeways, the manner in which we travel varies widely. Mopeds next to Silver Shadows, vintage (OK, that's me) clunkers wishing we could get back in the fast lane. The journey you are on will be different from anyone else's, but we all share the same fears--we can run out of gas, blow a front tire, get blindsided by someone running into us, see smoke coming out from under the hood when we know that whatever is wrong, we don't have the resources to fix it.

Newly diagnosed, you are unsure and maybe near-paralyzed with fear. But from the vantage point of two decades since diagnosis, I can tell you that you're stronger than you think and more resourceful than you can imagine.

Your profile states that you were an architect, so you know that structures need a solid foundation, and that they are built from the ground up. Dealing with MS is analogous to that--right now your are laying the foundation to build this new, unasked for version of yourself. There are some challenges with the terrain, the blasted building codes to deal with, and whoever commissioned the structure keeps throwing changes at you that require going back to the blueprint and starting over.

Whatever uncertainties you face in living with MS, this much is true: You are still the architect.

[SNOOPY]

palmtree,

I understand as I'm sure many here will.

Unfortunately, there are no miracles with this disease -- even with steroids and the DMDs. Nothing will make this disease or it's symptoms go away...permanently.

Residual symptoms can be common for many with MS and learning to live with symptoms is part of learning to live with this disease.

At this point do not assume you are "stuck like this." MS is a strange disease. Your symptoms could improve at anytime even a year or more down the road. Nothing is set in stone and there is no time limit.

I found my first 2 years were the most unstable years -- trying to understand MS, trying to find what I could or could not do, the uncertainty, finding my limits and how far I could push those limits. One year after my diagnosis I had another exacerbation much like the first one and in some ways a little more severe.

This disease sucks. After all these years there is still not much known about MS.

The treatments for MS are mediocore at best (my opinion) with the medical profession not knowing if they are working or not.

I hope you see some improvement soon.

[CrazyCatLady]

I was dx'd 3 1/2 months ago. I dont have any words of wisdom (if I did I would use them on myself too.) All I can say is that you are not alone and hang in there. I come here often for support, the chat room is great, I have never had a bad experience there. Most folks here are very supportive and understanding. Also maybe look into local MS support groups. I keep wanting to do that but have yet to do it myself.
Keep your chin up.

[palmtree]

Thank you for you kind responses. I apologize for being such a "downer". I love the analogy of cars running out of gas, crashing, and blowing up. It's so true! Having a sense of humor is good medicine. Tonight I went out to get something out of my car and the handle to the tailgate fell off, so timely. I almost laughed.:rolleyes

It's also good to remember to stand up straight, that is when I know which way is up.

[Thedish]

I was diagonsed 1 year ago this month. When I first found out I was so relieved that someone could tell me what was wrong that I cried. Yes, I was scared but at least I could hopeful, be put on medicine that may make me feel a little better and something much more serious was not wrong with me. There are times when I get frustrated about little things like being tired a lot of times and cronic utis, or taking things to help me go to the bathroom each night. Oh and the painful back and numbness of my feet that have been that way for over a year.... Shall I go on
I feel fortunate that I know what is wrong with me and if I look back at certain things I know I have had this for a long time. I still try and live my life like I did before and I really don't dwell on it at all. I know when your in pain and your symptoms are driving you crazy that its hard not too but it will get better hopefully.
I still work (14 hours) yesterday. I bartend and I will tell you that you just need to make some adjustments and try to take care of yourself and be positive. It could be much worse!!!

[Toomnyhats]

palmtree, I highly recommend finding a local support group. I went to my 1st meeting this past weekend and it was wonderful!

While I find the people here wonderful, warm, extremely encouraging and always available, there is just something about talking to living, breathing person standing in front of you.

Here is a link to start the journey of finding a local support group: http://www.nationalmssociety.org/fin...ter/index.aspx

[jamilea]

PT,

You ARE strong, You ARE brave and you can do this. I know exactly how you feel. It's EXTREMELY hard to have your brain not work right anymore and it's like you've lost control of your own body's functioning and it's a horrible nightmare. You are going through a grieving process and it's natural.

I'm so sorry that you aren't feeling well. We are here for you anytime you need to vent. Please know that everyone experiences this disease on different levels and that doesn't discredit anyone who isn't as "disabled" as someone else. It doesn't matter. Our own personal experiences are disheartening and just as bad as the next person's issues.

{{{BIG HUGS}}} for you and here's to hoping you feel better. My heart goes out to you. I know what it feels like to have people around you yet feel so alone inside, so empty and you just want to scream and break things. Keep moving, keep pushing forward to good things, take care of yourself, take it EASY on yourself, rest and feel better soon.

Love, Jami Lea