Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I have lived with MS for about 20 years, I did not know what was wrong I was was told over and over again nothing was wrong.
Last dec went paralized waist down, I was told I had MS. Went through steriod treatments, they did not last long.
A few months later I was told I had progressive MS and there are no treatment options, as the MS was left unchecked for all of those years.
The MS drugs are not for people like me, they try to prevent this not treat it.
now living in a long term hospital, I can not live at home because of the care I require.
I am in emotional overload, I am angery at my old doc for not listening to me. Because of him I was not givin a chance.
I am scared, sad, and everything else. all at once.
Last week I was paralized chest down, when it became hard to breath they gave steriods. A couple of days later I can move my legs. Do things that I have not been able to do in awhile. But already I am losing funtion. Now everyday I will lose more and more until I am paralized from chest down again.
Sorry for the rambling,
my question how do cope I have only a couple of months to get used to the idea of never going home. To deal with what is happening to my body, that it is long term and now to go down the road of knowing how paralized I will be in a couple of weeks.
second isue how to get through the days without going insane.
My Hubby does come in everyday to see me and we talk on the phone 2+ times a day.
Any thoughts???
Last dec went paralized waist down, I was told I had MS. Went through steriod treatments, they did not last long.
A few months later I was told I had progressive MS and there are no treatment options, as the MS was left unchecked for all of those years.
The MS drugs are not for people like me, they try to prevent this not treat it.
now living in a long term hospital, I can not live at home because of the care I require.
I am in emotional overload, I am angery at my old doc for not listening to me. Because of him I was not givin a chance.
I am scared, sad, and everything else. all at once.
Last week I was paralized chest down, when it became hard to breath they gave steriods. A couple of days later I can move my legs. Do things that I have not been able to do in awhile. But already I am losing funtion. Now everyday I will lose more and more until I am paralized from chest down again.
Sorry for the rambling,
my question how do cope I have only a couple of months to get used to the idea of never going home. To deal with what is happening to my body, that it is long term and now to go down the road of knowing how paralized I will be in a couple of weeks.
second isue how to get through the days without going insane.
My Hubby does come in everyday to see me and we talk on the phone 2+ times a day.
Any thoughts???
Different options for motorized chairs might help you.
Me, I feel my worst emotionally when I feel useless. I don't know your degree of disability, but computers can come equipped now with voiceover so you can do everything vocally, even type. Write about your experience, find a cause you can support online, etc. Look for people in your home that really need companionship and see what you can do for them.
I'm sorry I don't have better advice!
I'm so sorry to hear what you are going through and it is criminal what the doctors have done to you. I hope you believe in God and I will pray for you. This is just a thought but have you thought about looking into Clinical Trials, I've read there are ones looking for people that have progressed. If you want I will find the link for you so you can look to see if there is something near you. Other than that there is nothing more than prayer I can do for you, I wish there was more, just let me know if you need or want the link.
God Bless
Dave
Frankly, anything I say is going to be inadequate to address what you're going through. I'm so so sorry. :(
You should be angry at your old doctor - twenty years is way, way too long for anyone to have simply brushed aside symptoms. I was undiagnosed for six years, and that still makes me a bit bitter, but twenty is insane!
I second the advice of getting a second opinion if you can. Or are you just treated with staff physicians at your long-care facility? Could your hubby arrange for another specialist to come in? I'm not incredibly knowledgeable about health care in Canada, but perhaps another doctor would have different suggestions. Also, I echo oleblue's comments about Clinical trials - it could be an option for you.
Also, is there a staff psychiatrist/psychologist/therapist/whatever at your facility? I think talking to someone could be helpful. I don't know *anyone* who would react well to what you're going through, and it might help you cope. You sound like an incredibly brave person to me and I'm glad you have such a supportive husband - he sounds wonderful.
As far as lessening the insanity, have you thought about audiobooks? When I'm feeling bad and have to spend a lot of time resting, they can help pass away the time.
There has been a trial of it and it can stop the pace of worsing symptoms.
They are using the sideffect of low/no white count as a treatment. Give a baby dose every three months to keep white cell count low but not gone. I don't know how I feel about it.
I do have a power chair and I can go out when I want I just have to be back for nights.
the staff here are great
being sick for so long at home I was house bound I only talked to my Hubby and the psw's who came in I have been going through this almost alone. I pushed everyone away.
I did not know of getting support on-line I don't know why I did not think of it the MS socity told me about this web site
being able to chat with people who understand not feeling quit so alone has helped
the problem I am having is the emotional black hole I seem to be in and what to fill my days with
All I can offer is my sympathy and thoughts. I have no idea about what to do. I am at a lost. So I only hope that you continue to vent and talk to us and tell us about your experience. Please share with us your experience.
To make a long story short, I have been in your shoes. Both times I thought it was over. I just finished a 30 day hospital stay. I could not move my hips or legs or feet. I had little strength in my arms. Holding a hairbrush was too much. I could not sit up on my own. However, once again I am home.
Don't give up hope!!!
I can only say the same as others have, what gross negligence & I actually hope you can sue the one who ignored all your problems for 20 years. Don't know anything about the system there but there must be some recourse on to him. If not, guess you just got to move on as best you can.
Re chemo: I know of one person who went on it here, sounds similar to what they are talking about - a trial & watching carefully. He did actually improve while on it. Don't know how he is now as haven't seen him online for a while. If there are no other options & it is monitored carefully I would certainly consider it strongly.
As for what to do during the day, you have a power wheelchair so in nice weather when you are up to it take it out to the local park, zoo, anyplace that interests you & spend some time there admiring nature/animals - people & kids playing. That can cheer you up easily & while away some time. Surprisingly you can also meet nice people there too just by sitting out (in nice weather) & being open to talk to them too, which can be hard to start with too.
Ask where you live or your husband or where you live or someone you know - to find out about day activities in your area. I don't know the set up there but I know a lot of people can be picked up & taken to a day activity (even listening to music & supposedly discussing it over afternoon tea etc). Maybe something in your area. Even if you just go & listen/watch thats something to do.
Sometimes librarys have discussion times about books, you might have read it or part of it & then they talk about it & again have morning/afternoon tea too. If you have any churches near you (of any faith) often they have ladies groups which might be craft, movies or just get together to chat.
Just some ideas of where you might find things to keep you occupied when you can do them. Hope something is in your area that interests you & maybe just go & see what you think.
Also are they giving you any physiotherapy there at all. If not, see if you can get some gentle exercises to do with whatever parts of you will move & co-operate that day. As we say here "move it or lose it".
Whatever you need to do or want to do try it & stay on here so we can help you or listen to you.
Hugs
My heart goes out to you and I will include you in my prayers. There is nothing more I can add except my warmest regards to you and your husband.
Can you have a date night with your husband where you can go to a restaurant even if it is at Arbys and maybe spend the night with him?
I agree with the library's usually have a free book club and if they don't you could ask to start one. Or maybe start a literacy program at the local library or church. This would give you a way to continue to give back as Shelly said.
Keep coming out here to this or other MS boards but see if you can get some counseling too. Maybe a local MS support group is out there or you can start one.
Good luck with the chemo trial and everything else. Know people are thinking of you and wishing you the best.
EP