Don't even know what the title should be...

[October22]

I haven't been here for awhile but I lurk and read some posts here and there. No offense to anyone but some of the stuff scares the heck out of me.

I know no one knows what's going to happen and there's no crystal ball, everyone's different, blah, blah, blah but in harsh reality....it really doesn't matter what I do or don't do, does it? I have a spinal cord lesion that they think is responsible for my dizzness/vertigo. Well, that's not ever going to get better, right? So the best I can look forward to is getting worse and worse over the years? I will never feel better than I do right now? (Which is crappy most of the time.) There will most likely be NO cure in my lifetime.

I first heard the words, "It can't be anything other than MS" 1 year and 15 days ago and I still can't get a handle on what I'm supposed to do now.

This bout of crappy depression is probably due to my upcoming FOURTH MRI in a year and the appt with the neuro that follows that. Can't I just go ONE day without thinking about the future horror I have to look forward to??

Sorry for the long vent. I have no one I can talk to. Thank you all for listening.

[loopey]

Don't feel bad for feeling bad

I completely understand how you feel. I have the dizziness/vertigo/bad balance and other things that make my life miserable sometimes. And I am also afraid and negative sometimes. My crying jags are the worst!

But I still have hope. I hope that the DMD is going to prevent further damage. I hope that I can cope with the good days (I still feel like crap) and know that the bad days (when I feel even crappier) will pass.

I try to do this one day at a time because I have so much to live for. My husband is great. My sons.

I hope you can find some hope too. This is horrible, no doubt about it but please hang in there!

[Thinkimjob]

Well, a cure ain't likely any time soon. But, it truly isn't as bad as you fear. With any luck, you have many, many good years and years ahead. And the drugs are getting better all the time.

I've had this thing since 1997. I still work, and I can still walk (it's not pretty, but I can).

[pennstater]

Hi October22,

I remember like yesterday feeling like you do. I have dealt with vertigo and dizziness on/off since 1993. Most of the time, it is
not an issue. Have had relapses with vertigo and have learned how to deal with the lightheaded and dizzy feelings. Vestibular therapy helped. But when the vertigo does rear its ugly head, it is no fun. I do hope you get some relief soon.

My neuro told me it takes most people 2 years to accept their diagnosis and move thru all the normal stages of grief. About a year into my diagnosis I was a mess...up and down emotions.

My neuro recommended a psychologist and it really helped. It was a safe place for me to let out my anger and fear without worrying about upsetting family and friends who were trying to help, but would never fully understand. Do you see anyone for depression?

[Cat Mom]

Please don't apologize for venting, even those of us who do have someone to talk to, NOBODY fully understands what it's like if you haven't experienced it.

Are you on a DMD? What other meds/supplements are you taking?

Reading some posts scares the crap out of me too! You're not alone here. Don't be afraid to "let it all out" when you need to, it really does help and knowing that there's a huge population who do understand.

Jen

[22cyclist]

October22: I also have the dizziness/vertigo from a brainstem lesion and it can very much decrease your quality of life. One thing you can try, and that works for high cord lesions and brain stem lesions is Valium. It quits them down. It is about the only thing that helps CNS dizziness according to my MS specialist. I also am on Tysabri, and that has stopped a lot of the dizziness that I was feeling. So, yay! bonus there! Now it is at a level that I can live with. I don't think about it everyday, or feel it for that matter. Vestibular therapy did not work for me.

I hope that you will try the Valium at least, it helps so, so much.

As for the depression, the others have given great advice. A counselor would be of great help to assist you in adjusting to having a progressive disease. It sucks. No two ways about it. I am sorry you have it. I am sorry we all have it. However, you are in great company here. You don't have to suck it up. You are allowed to cry, throw a fit, do whatever you have to do to get through it.

I hope things get better soon.

Take care
Lisa
Moderation Team

[Temagami]

Hope is a wondrous thing- I had the dizzies for over a month and now it is just about gone. This whole thing started with spinal and brain lesions- I recovered from the physical losses- slowly, but bit by bit. Going dairy and gluten free has helped- tested it last week and got significant reactions, so back to elimination.

Not saying I don´t get anxious with new sx, it´s just that you will put one foot in front of the other and find a way to cope b/c there really is no other alternative.

I am optimistic that either stem cell will be the cure or they will discover that it is due to an infection and attack accordingly. I teach some really bright students and have hope that they will be motivated to study science.

Just doing something- diet, dmd, exercise,mindfulness will help- check out dr. george jelinek´s web site -overcoming ms

[dyin_myelin]

I haven't been here for awhile but I lurk and read some posts here and there. No offense to anyone but some of the stuff scares the heck out of me.

I have a spinal cord lesion that they think is responsible for my dizzness/vertigo. Well, that's not ever going to get better, right? So the best I can look forward to is getting worse and worse over the years? I will never feel better than I do right now? (Which is crappy most of the time.) There will most likely be NO cure in my lifetime.

Hi October. We're sort of talking, albiet not in person. The more militant pollyannas on this mb will confirm that I am not an optimistic person by any means. It is very difficult to cure cancer or an autoimmune disease. It is us and we are they, and anything cytotoxic to our own cells is bound to kill us too. That being said, I think we will come to a place where MS is managed like any chroinc and difficult disease.

The MS Society has just committed 7 million to myelin repair research, and tomorrow morning 70,000 US researchers will work towards treatments and cures. There is certainly a financial incentive to develop a breakthrough, and MS is not an orphan disease. In fact, I'm sure you're experiencing this as well, everyone you tell says "I know someone with MS." As a costly disease, insurance companies will also welcome an effective treatment or cure.

I don't know about spinal cord lesions, but I do know brain lesions can heal. I've had my first day dizzy free in seven months. This disease sucks and we will probably have some bad years ahead, but I don't think it's totally hopeless. -L

[Thinkimjob]

Ah, but pollyanna or "eff" it all now. I lurch between the two. I truly didn't/ don't let myself think about how bad things were/are. I think thinking about it too much is an error, but the not worrying means you don't look for the best drugs, so trying to maintain a plucky stance is counterproductive.

If this was cancer, I'd have been doing every last thing possible. But there's time, and you want to live as "normally" as you can for as long as you can, you keep soldiering on pretending everything is a-ok.

It's not. MS may not be a killer disease, but it there are worse things than death.

Sorry, sorry, sorry, 16 years, I'm not that bad. Not that good, either.

Oh death where is thy sting, oh grave thy victory...

[SEAMSGUY]

Hi 10/22- Like most here, wish there were some magic words to offer. Of course there aren't.

I don't like all the so-called Pollyanna happy talk either. Life with MS sucks. But all we can do is try and focus on this day. Tomorrow can bring a whole range of things, but all are unknown.

Hang in there, we care about you here.

[Alicious]

I have a spinal cord lesion that they think is responsible for my dizzness/vertigo. Well, that's not ever going to get better, right? So the best I can look forward to is getting worse and worse over the years? I will never feel better than I do right now? (Which is crappy most of the time.) There will most likely be NO cure in my lifetime.\

Not necessarily. I'm not trying to blow sunshine, but I had a 17x4x5mm lesion in my spinal cord at diagnosis. I was hobbling, had no fine motor control in one hand, and had no sensation in the skin on 1/3 of my body. 18 months later the radiologist could find no evidence the lesion was ever there. (On an MRI, of course. I'm sure it would show on a microscope.) My point is that your body may heal, and the symptoms may get better. No guarantee, of course, but having a lesion with symptoms doesn't necessarily mean you will have it forever.

Now, this is MS, so there will always be new lesions, but hey, some healing is still possible.

[aitch10]

This is all scary and it sucks and it is the cause of a million tears, but all you can do is keep on keepin' on. Sometimes that's easier said than done though.

((hugs))

[onlyairfare]

Guess I am on "the Pollyanna side," but this is my story and I am sticking to it!

I have had MS since 1975, and my MS specialist calls me "benign MS" because I have had it so long but still have a low disability score. I have on-going fatigue, bladder issues, and a weak right leg, but to most people "I look so good." I've been married more than 30 years, we've raised 3 healthy kids, and I still work full-time in a good job.

I've had ON many times (all fully resolved after a few weeks), but those episodes quit a few years back, and my vision is still correctable to 20/20. My job does not require long walks and I have given up hobbies such as hiking or anything that requires time outdoors in hot weather. A disappointment, but I can live with it.

As it happened, my MS was diagnosed during a time when I was seeing a psychotherapist anyway for depression because my baby had died. That therapy was very helpful in coping with two medical disasters at once. So of course my bias is that if you are finding the MS stuff depressing (and who doesn't), do consider seeing a therapist.

Sometimes MS lesions do get better. I've had two near-death health events, but neither was related to MS. I look at the MS research going on and I do think healing and a cure will become possible.

That is my Pollyanna story and I am sticking to it. October 22, I wish you all the best in your MS journey.