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wondering if I should take meds?

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Posted 11/12/2006 6:15 AM (GMT 0)
I am gonna try to make this brief, quick history.  I was only recently diagnosed, but I have had problem for about 20 years.  I had  a sever attck when 19, I could barely walk for like 4-5 days.  Went away for approximatley 5-6 years.  Then a little attack, and discomboblulation for a few years, then from 25-32 or so no problems at all.  All the while I was able to backpack miles into the mountains with minimal discomfort.  I am not 38 years old and can still do most things.  I have gait issues and tinglin etc at night.  I Still workout, can walk a mile or so before I get the gate issue bad.  Minor fatigue.  I have never in my life ever experianced any pain.  Just discomboblation.  I have some bad days where I can walk less, and loss of balance a little.  What i am saying is, that if I just periodcally rest (unfortunatlly I have a job where I walk all day) I am cool.  Should I take the meds?  Would meds help just bad gait and a liitle bit of fatigue?  Is it worth the side effects?  I know this is very vague, but my doctor says not too because I seem okay, but I just wonder?  Sorry for bad typing but this is my laptop.  Thanks in advance.

P.S. I am going to college to be a teacher (easier on MS!) is there any finnancial aide for M.S. victems.  I have paid my dues for 25 years and could use a lil help.  thanks and good luck to all. :-)

Posted 11/12/2006 6:30 AM (GMT 0)
Hey Gunzen

Welcome to the board! I hope u'll feel comfortable here and know we'll all try to answer any questions or concerns u have. Feel free to ask anything u like.

I'm not dx'd but can tell u what i've learned since beginning to have the same kinds of probs u have. The sooner u'r on the meds (Copaxone, Rebif, Avonex or Betaseron) the better. They don't cure u or heal u'r current symptoms, but rather try to slow progression and ease or slow down the flares. It's good to be on a med now before u progress to a point that u feel u should've already taken that step...before maybe u progress further. The symptoms u have or may have in the future may go away and never return, but they may stay with u or go away and others replace them. There's no road map with ms and no way to predict things, so being on a disease modifying drug is well worth it.

I'm sorry, i don't know of any financial aid oppertunities for people with ms, but others here will prob have some info for u on that. Best wishes to u and hope to hear more from u!

rhonda
Posted 11/12/2006 6:35 AM (GMT 0)
thank you for the reply so quickl, that is what I figured, are the symptoms/costs really bad, I have a decent job/budget, but is it really expensive?

Posted 11/12/2006 6:46 AM (GMT 0)
Hey Gunzen

I'm not sure of the cost, honestly, but u can check with the ms society to see what sort of help there is with the meds. I'm pretty sure they are expensive tho. I know there are places that help with the costs and i'm sure if u've been dx'd u'd get the help. Also, u'r med insurance should help as well. This will be a great question for those here who are on one of the meds. Take a look at this site and i'll try to find some other sites for info as well. Have u researched any of the meds or made any decision on a med u'd like to start on? Since u said u'r doc didn't feel u needed it, i imagine u haven't. If not, u'll need to look into that and check out the side effects and consider which one would fit best into u'r life. U'r doc should give u some info on that as well, but i'd also do my own research on the topic.

www.nmss.org

rhonda
Posted 11/12/2006 2:12 PM (GMT 0)
Hi Gunzen,

 

   Did your doctor say what type of MS you have?  There is a type called benign MS which has few attacks and minimal problems after 10 to 15 years and that particular type they don't prescribe meds for because it's not considered progressive.  If you do have Relapsing-Remitting MS then you should probably be on medication since MS is very unpredictable.  It really depends on if progression is being seen on MRI's or attacks that come more frequently and symptoms that don't go away over time but stay and worsen.  If it were me I'd be asking the doc why he feels the progression therapy is not necessary right now.  The answer of you seem to doing ok right now is not really a good answer to this question. 

 

   The meds are expensive.  Full price right now varies depending on the med but you're looking at about $1000 a month.  With a diagnoisis insurance companies should pick up most of the cost though, and there are financial assistance programs to help with cost if you have no insurance and cannot afford them.  NORD is one company that provides this service and there are others as well. 

 

   Good luck with your college plans!  Come back and let us know how you are doing.

 

Kimber

Posted 11/12/2006 3:26 PM (GMT 0)

Gunzen said...
I am gonna try to make this brief, quick history.  I was only recently diagnosed, but I have had problem for about 20 years.  I had  a sever attck when 19, I could barely walk for like 4-5 days.  Went away for approximatley 5-6 years.  Then a little attack, and discomboblulation for a few years, then from 25-32 or so no problems at all.  All the while I was able to backpack miles into the mountains with minimal discomfort.  I am not 38 years old and can still do most things.  I have gait issues and tinglin etc at night.  I Still workout, can walk a mile or so before I get the gate issue bad.  Minor fatigue.  I have never in my life ever experianced any pain.  Just discomboblation.  I have some bad days where I can walk less, and loss of balance a little.  What i am saying is, that if I just periodcally rest (unfortunatlly I have a job where I walk all day) I am cool.  Should I take the meds?  Would meds help just bad gait and a liitle bit of fatigue?  Is it worth the side effects?  I know this is very vague, but my doctor says not too because I seem okay, but I just wonder?  Sorry for bad typing but this is my laptop.  Thanks in advance.

P.S. I am going to college to be a teacher (easier on MS!) is there any finnancial aide for M.S. victems.  I have paid my dues for 25 years and could use a lil help.  thanks and good luck to all. :-)

Mostly I echo what everyone else has said.  You need to talk with your doctor about why he doesn't recommend the meds.  Many neuros (and the National MS Society) recommend starting them early.  I'm not sure what you mean by "discomboblation"...

but it sounds like you're experiencing some pretty typical signs of MS...difficulty with gait, balance, fatigue.

The meds WON'T change any of the symptoms you experience. They're not designed for that. They ARE intended to slow the course and progression of the disease, and perhaps you won't get any further damage than you now experience.  But no, they won't help with balance or fatigue or gait -- there are some meds you can try for some of those things, but not the meds generally prescribed for MS.

They do cost a lot...but if you have an insurance plan that pays for prescription drugs, the plan will usually cover at least some of the cost of the prescription for this, too.

As for financial aid for MS "victims"...depends on the college. Some colleges have financial aid for people with disabilities, or scholarships.  The National MS Society also offers modest scholarships, generally for children of folks with MS, but you could check there and see what might be available: www.nmss.org is the website.

 

Posted 11/12/2006 3:59 PM (GMT 0)
Hi Gunzen, If u click on treatments on that website it may help u decide. Also just generally read everything there. I did and it helped me a lot. Try to contact the Vocational Rehabilitation Department in your state. If u qualify they usually pay part if not all of your tuition.

This is a great place to come if ur feeling down or have questions because somebody usually has an answer or at least a suggestion of where to go to get the answer. Come back and let us know how everything works out. Bye.

Sheila
Posted 11/13/2006 5:28 AM (GMT 0)

Thank you very much for all of your replies.  I actually remeber the term Benign being mentioned by my doctor.  I am going to make an appointment with him to discuss what I read here.  I dont believe I have had a major attack since the first one 20 years ago.  Maybe some minor ones, but nothing like the first.  I am not fooling myself.  I know know I am sick, was just wondering about he side effects.  I have insurance, I have a full time job, and I have never actually been to fatigued  to work.  So I was just wondering what the cost /benefits were. 

I read what you guys are saying and I think you all are very brave.  I get mad sometimes when I see someone just "walking down the street, but compared to what some of you are suffering from I should shut the hell up actually.  I hope I do not seem allof about this.  I just wanted to know.  Thanks again for all the help.

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