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.
When I first had to live here at the hospital it took me awhile to except that I would not walk again or pee on my own again & a few other symptoms.
Even though I was here I still had a life I volunteered at the sexual assault center worked on the crisis line. I went out on outings went home & so on
The last few months have not been easy for me. I have been getting a few new symptoms. They have been hard to live with. I have violent muscle spasms my back arches & head snaps back. My arms jerk as well. They have put me on drugs that make me sleep all of the time & when I am up I have trouble thinking quickly so I had to give up my volunteering. Even the groups that I take park in here I had to give up most of them.
My eyes are getting worse I have been dxed with optic neuritis I keep having attacks & my eyesight continues to get worse. I have trouble reading reg books (I have over 300) I am slowly getting books though kobo a couple a month I can enlarge the text.
Either of these symptoms may take away my power chair. If they can not stop the back jerking of my back/head/arms I can hit people & hurt them or me. & if my eye sight gets too bad I will loose the power chair. Loose my independence.
I am also having more weakness in my arms. So I am having to be fed more often. I am needing help with more & more things. Need support around things.
I am having trouble coping with things as I always read to cope. Now I have trouble with the drugs I am on I am too tired to read.
If anyone else have to cope with these things let me know how you do it. Is there any treatment that works & does not knock you out???
Even though I was here I still had a life I volunteered at the sexual assault center worked on the crisis line. I went out on outings went home & so on
The last few months have not been easy for me. I have been getting a few new symptoms. They have been hard to live with. I have violent muscle spasms my back arches & head snaps back. My arms jerk as well. They have put me on drugs that make me sleep all of the time & when I am up I have trouble thinking quickly so I had to give up my volunteering. Even the groups that I take park in here I had to give up most of them.
My eyes are getting worse I have been dxed with optic neuritis I keep having attacks & my eyesight continues to get worse. I have trouble reading reg books (I have over 300) I am slowly getting books though kobo a couple a month I can enlarge the text.
Either of these symptoms may take away my power chair. If they can not stop the back jerking of my back/head/arms I can hit people & hurt them or me. & if my eye sight gets too bad I will loose the power chair. Loose my independence.
I am also having more weakness in my arms. So I am having to be fed more often. I am needing help with more & more things. Need support around things.
I am having trouble coping with things as I always read to cope. Now I have trouble with the drugs I am on I am too tired to read.
If anyone else have to cope with these things let me know how you do it. Is there any treatment that works & does not knock you out???
I wish I had a chance to try cannabis but it won't be possible soon enough. And at this severity it may not work. As my MS became more aggressive around 2007, spasticity dramatically took a turn for the worse.
Magnesium is a good supplement to take at adequate doses for mild disease. And I think its wise to take and maintain it for as long as it helps. But when spasm gets to this point you are way beyond it's reach theraputically. I have tried everything - maxed out on drugs although adding zanaflex gave a slight improvement.
I have botox every 3 months which is not working anymore, a phenol injection to release a contracture, trigger point injections every few months to deal with the twisted and inflamed musculature caused by the repeated spasms in the same areas.
I meet with 2 Medtronic salespersons tomorrow, one of whom has a baclofen pump. I am going to discuss how this will help me and the up and downsides. This was arranged after I told the Dr. I will not consider surgery without seeing the device and getting information.
There is no question I cannot live in this much pain anymore.
medtronic.com will be happy to give you info and refer you talk to someone who has had it done if you are interested. They have been doing this now 10-15 yrs.
Technology is supposed to give you more control and indepemdence. There is a lot of it today!
I'll report back on my meeting
Keep the faith Kayce. I know its not easy. There are visual aids to help to
Melanie
Thank God for technology!
I also have Kobo and love it, but I only get free ones.
Also if we didn't have internet, we wouldn't have met and im grateful for your experiences. Knowing this things helps us make informed decisions.
I can still stretch my spasms Thank God.
Looking forward to the answers.
Alma
In part I want the pump as beclofen pump as I am maxed out actually over the max dose 30 mg 4x day total 120 mg/day
I was told the med's work in the spinal canal but most is lost in the liver & body. So I could take a lower dose & work. Then I will have room to take more of it. As the drug works without snowing me.
Just get a good, experienced doc. Talk to Medtronics rep. Please.
You deserve better. My heart and thoughts go out to you.
best, Esther
I am blessed with a great husband, family, and job. I still work from a scooter. I still am finding joy each day. My heart goes out to you all. I know how hard this is for all of us. Lots of love and if you have any questions about the pump let me know.
I was told to try two med's before they would consider the pump the ones snowed me worse then the bedcolfen so I am back on valium they want me to try the med again then on to the 2nd drug they want me to try
I just want to get part of my life back