My latest flareup started in July - I could not move off the couch for months. Then I got better briefly to the point I could walk my dog like 1/2 mile. And now I can't walk far again. So then a few weeks ago I shot myself with the 3 week of the Titration pack of Rebif - so I was on only 50% of the full dose and I was out of my mind with anxiety. I swore I would never shoot myself with that again. As it is I load myself up with anti-anxiety meds daily. I'd have to be so drugged up via IV to take Rebif ever again and the big question is - What Quality Of Life Is That?!
As it is I take so much Baclofen and Neurontin every day that I am zonked out. I am either dizzy, tired, feeling loopy, can't look at a computer screen or the tv or all of the above just from those meds - and still the pain in my legs is not under control. So again I ask myself - What Quality Of Life Is This?!
I realize I have no choice on the pain meds if I don't want my legs to spasm like crazy and be in excruciating pain. But man alive. How am I suppose to work? I can't. I can't think, I can't always look at the tv/computer, sometimes I just have to sleep to get the pain to stop and my mind to calm down from overload. And these people want me to take more interferons?! I can't. My neuro told me that Copaxone does not work on Spinal MS as well as the interferons - has anyone else ever heard this? My body just can't seem to handle them without driving me insane. I'm already on an anti-depressant and emergency anxiety pills to hold it together daily - why would I want to shoot myself with something that makes me nuts for lack of a better term? I want to walk - I do - but I cannot handle that huge dose of interferons. Does anyone else have moderate spinal ms and trouble walking and is on DMD's? What did your doc recommend?
Because right now my quality of life sucks and I have to figure out how to stop this disease, walk and stop the pain....sans interferons.
11 comments:
My husband has spinal MS, he is still walking but uses a cane for out of the house and tires quickly. He has a foot drop and his gait is weird, he has an AFO but refuses to wear it because it gave him a blister once. (men)
He started on Avonex - had bad flu symptoms every time and after 1year developed antibodies, then moved to Copaxone - severe reaction to every dose after 3 months had to stop, then Betaserone for nearly 4 years but he wasn't good about taking EVERY dose. It seemed to stop working even when he was taking it - he lost a lot of function in the last year on Betaserone.
Now he's on Tysabri - no relapes on it at all in the past year. Some slight improvements in cognitive function (better short term memory). NO improvements in the walking BUT to be fair he has not worn his AFO and he has not done the exercises given him by the physical therapist to improve mobility. He has not done any strength training exercises either. I tell him you're not going to regain strength in your legs miraculously while sitting on the couch.
I too wonder sometimes about quality of life. As new meds continue to be added, more side effects are added. Sometimes I wonder if it's worth it. I also have lesions in my spine, but I've only experienced a brief time with difficulty walking. My feet and legs sometimes become numb, but other than fatigue, I can walk fine.
It's interesting that your doc said Copaxone doesn't work as well with spinal MS. Thats what I have and that's what I'm using right now. Although my doc did say we may switch.
I hope you find your answers, and I truly hope you get better quickly. I'm keeping you in my thoughts.
Now go get married will ya?!!
Tricia - what is an AFO?
Abby - I leave Saturday and get married next Tuesday in Jamaica! :)
what is the difference between spinal MS and brain MS?
I am not on any MS meds yet. My choice would have been rebif but yeah...I was wondering about the quality of life thing. I cannot be laid out when I have my son to take care of. So you are saying the rebif caused you anxiety?
MS does suck!
Thank you for sharing all this. I hope you find something which works for you.
Hi Lanette--
My neuro doesn't care for Copaxone because he doesn't feel it's as effective (in general) as the interferons Rebif and Betaseron. He seems to only like it for mild cases (the same with Avonex)or if there isn't tolerance with the interferons. I don't know if this is what your doctor is referring to.
I'm sorry you're going through all of this. Did your doctor mention Tysabri, or are you thinking at all about taking it?
Jen
Merelyme & Jen - Spinal MS is lesions in your spinal cord/column. Brain MS is lesions in your Brain. I have both. However, spinal MS is the MS that leads to disability - hence my problems walking since July. I have been on Avonex and Copaxone when I first found out I had MS 2/2003 then nothing for a few years and then wham this past July I couldn't walk - as I have 4 or 5 lesions in my spine. Tried Rebif because my doc said it works best on spinal MS - Made my anxiety so bad I was climbing the walls - no more rebif for me.
Yesterday I had a Neuro appt and now on to Tysabri next month (after I do some research on it)...
Lanette,
Just want to correct something you said...a lesion in either the brain or spinal cord can cause disability.
And Avonex is an interferon, too.
The interferons and other MS drugs don't work for everyone, as you all know.
The MS drugs' purpose is to reduce the frequency of attacks and severity of attacks - not to eliminate the lesions. With the presence of lesions comes inflammation. That is treated by steroids. Reducing the inflammation can improve the function of the nerves and allow the brain to remyelinate.
Like many drugs, the body can develop anti-bodies to it and this is sometimes what makes the drug ineffective. These drugs are most effective in the early stages of relapsing remitting MS. Studies are showing that by being treated early, you can delay the onset of degeneration of the brain and disability. Sadly, they cannot prevent MS from continuing its course, only delay it.
S.
Lanette,
My lesions are primarily in my cervical spine. At last MRI (4/08), at least two existing lesions seemed to expand and merge together into one which spans from C4-C6. It's 3 cm long. (Here's a photo) There are a couple smaller ones in there too.
I'm using Copaxone and it seems to be doing well. My neurologist isn't interested in switching just yet although I didn't have a significant relapse. But it was the first big one in over two years so we're kinda happy.
Shauna - Yes I realize that a lesion in the Brain or Spinal Cord can cause disability. I was just repeating what my new Neuro told me in that he said the Spinal Lesions are the ones that cause disability in reference to walking. He made it sound like 100 times worse regarding walking disability issues.
Bottom line is I am just freaking out right now about how long this is lasting and how it isn't going away. I've lived with MS from childhood when my Mom had it and saw her disease progress and now mine is and I'm just not dealing real well with it right now. Primarily because for the past 5 years I operated as if nothing was wrong - I had no big symptoms like I am starting to have now.
I'm just going to go on vacation and try to deal when I get back. Forgive me for freaking out a bit - this leg stuff is just all new the past 5 months - and I don't want to loose my legs.
Lisa:
See I think that's great that they actually tell you where your lesions are and measure them to keep track. My Neuro (who may soon be my ex-neuro) just reads the radiology report to me which says I have several 4-5 lesions in my Thoracic spine. He showed me a few on my MRI, but did not take the time to locate them all if you will or measure or anything. He's a drug pusher and I don't like it. I will have to find someone else I think...again. Errrr....
Thanks for sharing your story, it gives me hope that some good doctors are out there and good results can happen.
Lanette,
I know you are getting ready for your trip and might not see this, but....
I only know those details because I pick up a copy of the radiology report for my own records. Also, at the end of my MRI session, I am asked for wait for just a little bit to receive a CD of the films.
On that CD will also be past MRI session conducted at the same radiology clinic. It's really a nice set-up and was put in place about three years ago.
Before then, I would need to go by the clinic to pick up the actual films and report to take to my follow-up visit with the neurologist.
So, it's really the MRI clinic that makes this so easy.
I wish you the very best on your vacation/wedding. Looking forward to lots of stories when you get back.
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