multiple sclerosis

angelac1978 · May 31, 2002

the National MS Society website is http://www.nmss.org

they have tons of information there

There are basically 2 types of the disease, chronic-progressive and relapsing-remiting, The first type is where you have symptoms all the time and they get worse over time. The second type is where symptoms will appear for a period and then they will lessen or disappear. Relapsing-remitting can sometimes develop into chronic progressive as the disease progresses.

My mom has chronic progressive MS and has had it since she was in her late 20's/early 30's (she's 55 now), this was back in the 70s when this disease was rarely diagnosed, most patients were told they were imagining it or just trying to get attention, or at least this is what my mother heard from doctors. The good news is that treatments for MS have improved dramatically over the past 30 years. My mom was in a beta-seron trial back in 94 or 95 but the medicine was really affecting her moods and general well-being. The most important thing to remember with this disease is that attitude is EVERYTHING! When my mom was diagnosed in 1981, the dr told her she would be in a wheelchair in 3 yrs and bedridden in less than 10. Well lemme tell ya my mom is as stubborn as the day is long and just recently has she started using a wheelchair to go to the grocery, mall etc. If your sister, and family in general, can stay positive and not focus on the bad days, it can make all the difference in how the disease progresses. What med is your sister taking? She might want to look into clinical studies (they go on all the time!) where the $$ of meds would be less or none at all! I hope this helps and if you ever need to vent or someone to listen, you can email me, ([email protected]) I have lived with MS all my life, I don't ever remember my mom not having symptoms and can probably relate to what your family is going through. My mom's favorite saying is "this too shall pass" and remember that attitude is sometimes stronger than any drug!

Brownbetty · May 31, 2002

Just curious, what were your sister's initial symptoms that sent her to the doctor that lead to her diagnosis?

shay · May 31, 2002

I also recommend the MS society link that angelac1978 gave you. One of the families I baby-sat for during nursing school, the father had MS. He was diagnosed in his late 20's, but they didn't tell anyone about it until he was in his 40's when he started showing symptoms (severe limp). He and his wife were very active in the MS society, and he was actually getting experimental drugs and treatments at a local teaching hospital.

I would suggest that the first place your sister start is the MS society, they can point her in the right direction, as well as provide her with a support group which is something she sounds like she really needs right now.

Please remind her that people with MS can go for years living healthy, full, active lives and even though they may have exacerbations there is remission too. Hopefully she will take our advice and contact the MS society so she can start seeing that for herself.

Just keep in mind that right now she is going through the grieving process, and may not be open to contacting the MS society right away. We'll pray for you both over here.

discarded APN · May 31, 2002

First take a deep breath and try to relax. It's hard, I know, but you can do it.

I have MS, I was diagnosed about 3 years ago. At the time my leg was numb again and working in Neurology someone finally thought that maybe we should do MRI scans, (with and without contrast) brain and spinal cord. Multiple lesions were found and I was told that I most likely had MS for about 15 years. During those 15 years symptoms had been blown off. You know, imagining things, looking for attention, whatever. I've been on beta serone and copaxone. Both of these companies have patient assistance programs. Beta Serone's is called Pathways and will provide help with the cost of their meds for people who are uninsured or underinsured. The company who makes Copaxone also has a program like that. Information and phone numbers are available through your doctor's office. They will also work with your insurance company to help you get those meds pre-certed before you start taking them. Pathways will supply the syringes needed for injecting the medication as well as the patient teaching needed. Copaxone comes with the syringes and is also available now with pre-filled syringes. Both of these meds are given sub Q, Copaxone is daily and Beta Serone is every other day. Avonex is another of the MS drugs and is given IM once a week. You can get lots of information on line from the drug companies.

You will all need a good support system. Besides the National MS society there are also local branches with support group meetings. Your sister can call them and request printed information. I've found that they will only send it to the person with MS, if that person calls and requests it. They wouldn't send it without that personal request.

She can get pamphlets on energy conservation, the different meds available, bowel and bladder problems, emotional issues, employment issues (not that these will all apply to her). You name it they have information on it. Have your sister call them and get a copy of each of the available pamphlets. MS is one of those things that is different and changes not only from person to person but also from day to day, week to week, month to month in the same person. Your sister will learn to take it one day at a time and she will adjust to the changes. She may have very mild symptoms, can go into complete remission, have relapses and then to into remission for long or short periods of time. I think one of the most frustrating aspects of this disease is the unknown. If I knew from day to day what I'll be experiencing I think it would be easier to cope. I've learned professionally as well as personally that people can deal with just about anything when you know what to expect. Sometimes I feel like I'm playing "MS roulette". You know, spin the wheel and see just which part of my body isn't going to cooperate fully that day, LOL.

Sorry this is so long. Please feel free to pm me if you'd like. I'd like to help you both.

Take care.

abby27 · May 31, 2002

Thanks for all of the support, everyone!

I really appreciate it.

A couple of weeks ago my sister started having really severe pain in her right eye and her vision was really blurry.

She just does not want to deal with it. My parents went with her to her doctor's appointment Tuesday and that's when she got the bad news. And she will not return any of my calls. I know that she just needs time to get used to it. She's only 22. She wants to go back to school so she will be able to have good benefits later in life.

I'm going to ask her if she wants to move in with me and my fiance so she can save money for her medication.

Anyway, thanks for listening!

Abby27

Brownbetty · May 31, 2002

Your sister and your family are in my prayers.