Problematic Symptons getting in the way of life

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Problematic Symptons getting in the way of life

Postby ranbar » Sat Apr 13, 2013 11:48 am

Right now I am whiney because the stiffness in my right leg is really causing me problems. I abandoned efforts to attend my 14-year-old sons concert because my inability to get up into my husband's truck was such an embarrassment, we got into a fuss and I just told him to go without me. I am heartbroken. I feel as though my MS is causing me to be unable to participate in the activities of my son's life, that it's easier for everyone if mom just stays at home. Life with MS sucks. :cry:
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Re: Problematic Symptons getting in the way of life

Postby jimmylegs » Sat Apr 13, 2013 12:25 pm

welcome to the forum r, sorry to hear you are having a bad day :( i am injured right now, i hear you re difficulty w vehicles!
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Re: Problematic Symptons getting in the way of life

Postby ranbar » Sat Apr 13, 2013 6:03 pm

Thanks Jimmylegs. I am glad you are doing well with no meds. I have been on meds since my diagnosis in 2003, but I still feel like I'm losing the battle. My first Neurologist told me that the diets had no effects on MS and dismissed alternative methods as quackery, so I never investigated them. I developed antibodies to the inferons, so switched to Copaxone four years in. I just started Aubagio, the oral med, because I tired of giving myself injections. I'm just tired of dealing with it all, and I'm frustrated. I just want to hear about others with this disease who might help me be more successful.
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Re: Problematic Symptons getting in the way of life

Postby jimmylegs » Sat Apr 13, 2013 6:47 pm

if you do find yourself curious re the nutrition side there is LOADS to read out there.

this is just my take on the nutrition side of things: regimens-f22/topic2489.html#p15460

(oops I almost just linked you up to a soils map there :S multitasking!)
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Re: Problematic Symptons getting in the way of life

Postby Music » Sat Apr 13, 2013 7:11 pm

Hi ranbar,

Yes life with MS does suck but where there’s a will there’s a way right? My hubby’s trucks have always been too high for me to get into so I’ve always been lifted into them – I hate being picked up. We usually use our SUV which I’m also too short to get into so we “made” a portable step for me to step on. My husband pulls me up out of my w/c and I then slide over on to the seat.

My husband’s Aunt also had a step made to get into her daughter’s SUV. She steps on to it with assistance and then her skinny mini daughter shoves her in. Quite comical actually - but we all make it work. I hope tomorrow is better for you.
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Re: Problematic Symptons getting in the way of life

Postby ranbar » Sat Apr 13, 2013 7:24 pm

I'm glad I found this site. I've never communicated online before, but already feel better since reading all of your responses. Thanks everyone.
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Re: Problematic Symptons getting in the way of life

Postby HappyPoet » Sat Apr 13, 2013 8:56 pm

Welcome, ranbar,

So sorry you missed your son's concert. You've been given good ideas to help you--my idea approaches the problem from a different perspective. I missed my son's graduation from MIT, but a psychological trick of sorts helps a bit which might help you, too...

I now blame missed events on the specific symptom(s) involved rather than on "MS." Thinking this way means you missed your son's concert because of muscle spasms in your leg, not because of "MS"--this tactic also means family and friends will hear and say "MS" less often, which can be helpful for them, too. Weak, I know, but it does help a bit.
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Re: Problematic Symptons getting in the way of life

Postby ranbar » Sat Apr 13, 2013 9:26 pm

thanks. good idea, since it removes the power from a general, broad statement.
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Re: Problematic Symptons getting in the way of life

Postby lyndacarol » Sun Apr 14, 2013 9:30 am

I also welcome you to ThisIsMS, ranbar.

I am sorry, too, that you missed your son's concert. If a similar situation occurs in the future, could a friend or relative video tape the event? I know it is not the same as "being there" but you would see it, and actually it would be nice for you AND your son to have the memory recorded for all time.
Last edited by lyndacarol on Sun Apr 14, 2013 10:13 am, edited 1 time in total.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Problematic Symptons getting in the way of life

Postby ranbar » Sun Apr 14, 2013 9:43 am

Thank you. My husband did video tape it for me. I appreciate all of the responses. We live in a remote area, where there are very few resources available. I find that, past the Neurological viewpoints, there is little help for dealing with the day-to-day dealings with MS. It seems as though everyone I know who has MS has little to no physical struggles. This makes me feel alone in my fight. This forum has connected me immediately to others that fight a similar battle to mine.
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Re: Problematic Symptons getting in the way of life

Postby centenarian100 » Mon Apr 15, 2013 1:50 pm

Sorry you missed the concert ranbar.

That really sucks. Maybe you can deal with this sort of thing in the future by trying to leave earlier so that you have more time for transportation or getting a portable step to help get into the truck.

Don't let MS control your life.

You might want to check out a book called "multiple sclerosis" fifth edition by Rosalind Kalb which addresses a lot a day to day issues along with other MS related issues.

You may want to talk to your neurologists about higher potency medications (tysabri,fingolimod, etc.) if you are getting rapidly worse.

Even if you don't believe that diet has a direct effect on MS, there are still many general health benefits to eating a healthy diet and you should not neglect it

best of luck

-c
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Re: Problematic Symptons getting in the way of life

Postby ranbar » Mon Apr 15, 2013 5:26 pm

It was suggested I go on Tysabri, but I am concerned about the lethal side effects. I didn't realize it helped with mobility, and other symptoms. Doesn't it have a 2 year use limit, for best results? What then?
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Re: Problematic Symptons getting in the way of life

Postby CaliReader » Tue Apr 16, 2013 8:59 am

If you're looking for an answer from someone who is pro Tysabri that is not me. Also, I'm a patient. What I've learned is from my own quest for treatment.

One of the problems with Tysabri, aside from the risk of a lethal brain disease, is rebound effect. When the doctors advise you to stop because your risk of PML is too high, symptoms can get much much worse.

Have they talked about Gilenya? Campath? These also have real risks, but as I've tried to do my research and make my choice of treatment they both looked safer to me than Tysabri.

As far as I have seen, only Campath and Tysabri can help with mobility and neither is certain to help with that.
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Re: Problematic Symptons getting in the way of life

Postby centenarian100 » Tue Apr 16, 2013 10:12 am

ranbar wrote:It was suggested I go on Tysabri, but I am concerned about the lethal side effects. I didn't realize it helped with mobility, and other symptoms. Doesn't it have a 2 year use limit, for best results? What then?


tysabri doesn't have a use limit, but increased length of use increases the risk of pml.

One big consideration is to get a serum JC virus ELISA to stratify risk of pml. You may want to ask for this blood test.

Another factor is whether or not you have previously been on immunosuppressants (azathioprine, cyclospirine, cyclophosphamide, methotrexate, etc.)

Here are the statistics:

Image

campath and gilenya also have side effects.

campath: risk of various infections, autoimmune thyroiditis

gilenya: first dose decreased heart rate/sudden cardiac death, macular edema, pulmonary/liver/heart issues.
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Re: Problematic Symptons getting in the way of life

Postby ranbar » Tue Apr 16, 2013 6:03 pm

All information is helpful. thanks

Have you found info on INSAID use with MS?
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