Ask MetaFilter questions tagged with multiplesclerosis

How do I make plans for the future knowing I have MS?

Anonymous — Fri, 27 Oct 2006 19:19:37 -0800

A few years ago I was diagnosed with MS. Since then, I've grown increasingly confused about how I should plan my future due to the possible future effects of the disease. At this point I've completely lost perspective on the matter, and the more I think about it, the less sure I am of any decision being the correct one. I'm hoping for some objective advice. I was diagnosed about four years ago. In that time, I haven't had a single symptom. I see a neurologist yearly, and my physical exam is normal, EDSS is 0. My MRIs, however, have shown a few lesions coming and going over the years, and I had a spinal tap that was abnormal in all the expected places, which is where the MS diagnosis comes from. I got pretty educated about things, and to be honest, it didn't really bother me a whole lot until recently. Not having any symptoms and holding on to a vague notion that maybe "they" were wrong really kept me in a state where I didn't think about it too much. But lately I'm thinking about it all the time.

I'm 30 years old, and have accomplished very little compared to what most people have by my age. I'm not married, no children, no career to speak of, and until recently, no college. From highschool on, I'd basically worked to eke out a living, and not really pursued much else. However, since my diagnosis, I've gotten engaged, and start taking college classes to help me rectify the career issues. But the more my future starts to shape up, the more I feel constantly worried and upset about whether I'm making the right choices. It basically boils down to trying to negotiate my life with the possibility/probability of becoming disabled hanging over my head. Of course, the nature of MS is that it's impossible for me to know how likely it is to happen to me, how long I have until it happens, if it happens at all.

My biggest worry at the moment is college/career. My work will pay for my college 100% if I attain a degree or certificate in one of a set of pre-approved healthcare fields such as nursing, etc (though I'm not pursuing nursing). None of these really accommodate any disability. Free college is great, and I've already started taking classes. At the same time, I'm knowingly choosing a career that I won't be able to do if I can't walk. I feel like it's my only reasonable hope to go to college, and make decent money, but I don't even know how long I'll be able to work. And I don't know if my employer will feel it's pretty disingenuous of me to get a free ride through school knowing that I knew it's not likely I'll be able to do the job until retirement. It's got me thinking that I shouldn't bother at all, that a career is something that I shouldn't hope for. And other times I think, hey... the other kids in my classes might get hit by a bus in a year or so. They're not having to worry about a choosing a career that accommodates bus trauma. Why should I behave as though I'm disabled before I really am? And then I think, boy, when I am disabled, I'll wish to god that I'd planned ahead for it. I go round and round with it.

And of course, whether to have children is an even bigger, though less immediate issue. I always wanted to have children, it's always seemed like one of the most important things one could do in their life. But again, now I'm not sure whether I should bother. I don't know how long I'd be able to take care of them, and while MS isn't strictly inheritable, there's an increased chance that my first degree relatives will have MS as well, and I'd feel awful of course, if my children ended up with it. I wonder how my children will feel towards me, having had them knowing I had MS. But then again, I don't want to reach the end of my life and regret not having any.

Honestly, I feel like if I'd gotten all this out of the way when I was 20 like I was supposed to, I wouldn't have had to worry about these things. I could have gone to college and had babies and had a clean conscience. Now it seems like no matter what I do, my conscience cannot be clean.

Unfortunately, something like this isolates you. I can't ever tell my coworkers, I don't feel comfortable telling any new acquaintances since I was diagnosed, and the friends who know never speak of it or ask about it, probably stemming from basically not knowing what to say. I don't blame them, I know it's uncomfortable for them too. Of my family, some are so extremely upset by the subject that I don't even like to talk to them about it anymore, because I don't like upsetting them. The rest generally don't know what to say. I've been to MS boards, and really, it's hard to whine to people who are actually experiencing the symptoms that I'm worried about. And I know that any of them would love to trade places with me, but still my problem is real and valid to me, if not exactly tremendous in comparison to others, if that makes sense. I suppose a councellor would help, but between school and work, I can't imagine trying to squeeze another thing in right now. I appreciate any input, it would just be great to find out what someone who isn't my mom thinks.

If I've left out anything, I can be reached at anonyfilter@mail.com

Technology compatible with multiple scleroris

occhiblu — Wed, 23 Aug 2006 11:15:41 -0800

Suggestions for computer technology for people with multiple sclerosis. (Asking for a friend.) Does anyone have any thoughts about how MS patients with electrical sensitivity can avoid becoming technologically obsolete? A physical therapist is trying to help one of her patients get a new computer but every new computer, LCD TV, wireless or remote device seems to cause him pain (starts in his hand when item is turned on, worsens to face and knees...and the pain lasts 2-3 hours). Has anyone run into this before and found either a way to block the electrical signals or certain devices which do not cause the symptoms?

How do I support my SO with MS?

golden_lady — Tue, 15 Aug 2006 14:13:59 -0800

I'm in the early stages of a new relationship with a man who has MS. He is having a hard time dealing with his illness and is incredibly depressed. How can I be supportive to without be patronizing or overbearing? Recently, I reconnected with a friend I had not seen in 6 years, and we have started dating. In the interim, he was diagnosed with multiple sclerosis - about 2 years ago.

His experiences so far have been less than good. His S.O. at the time of his diagnosis broke up with him because she couldn't handle it. He lost a job (retail) about 9 months ago because he had an episode and spent two weeks in bed, and hasn't worked since. He lives with his father, who seems to think his son is not sick - just lazy. His insurance will not cover the cost of drug therapy, and his father's income means he cannot get subsidized Copaxone (though his father makes little to no contribution to his living expenses).

It's been difficult, because he is determined that I not worry about him. After a recent doctor's appointment, he fell into a deep depression and got blazing drunk. He told me that I shouldn't waste my time with him, that I deserved better than to tie myself to him, that all he would do is drag me down. Afterwards he didn't remember what he said, but I did.

I've been reading up on MS, learning what I need to know. I ask him questions or make suggestions: Has he looked into Medicare? What about working in a call center where he wouldn't have to be on his feet? Maybe he shoudl look into going back to school? How is he feeling today? Slowly he has opened up to me, but my suggstions a generally brushed off. He seems to have no hope of ever leading a "normal" life.

I really care about this man. I can see myself spending the rest of my life with him. But at the same time I want to help him. He's done counseling and anitdepressants in the past, and he's reluctant to go down that road again. What can I do to help him? I don't want it to seem like I'm nagging him, but at the same time I see so much potential in him - so many things he could do and accomplish. How do I make it clear that I'm not disappointed in him as he is now (he tends to jump to that conclusion based on past experiences) - that honestly I love him just the way he is - but that there's so much more he can do?

How to arrange celebrity contact?

Anonymous — Fri, 28 Jul 2006 15:37:40 -0800

How to arrange contact with a famous singer for a very deserving young woman? Okay, so I know this must sound like movie-of-the-week type of territory, but what the hell... I have a relative, wheelchair-bound with multiple sclerosis, spina bifida and (long story short) a long history of related health problems - she wasn't supposed to make it past about four years old, and now she's 20. Unfortunately, many of these problems have been catching up with her lately; she's about to go back into hospital, and, well, without getting into details here, she's not quite knocking at death's door (thank god) but all of us in her family are worried about how much longer she has.

So here's the thing: there's a singer, Delta Goodrem, that she really is the world's biggest fan of... she knows every note she's ever recorded by heart, has her room plastered with Delta posters and books and stuff, loves her more than pretty much anything on earth. And, yep, I would desperately love to be able to arrange it for Delta to be able to contact her in some way - if not through an in-person visit (we're in Ireland), then at least a phone call or something.

I know someone like Delta Goodrem can't be on the unreachable level of someone like Britney or Madonna, so this has to be doable. But more importantly, you can't imagine what a dream come true this would be for her - and there *really* is no more deserving soul on this planet to have someone like this happen to. She's endured more than most of us could ever comprehend, and if ever there was a type of person you couldn't help but fall in love with the instant you meet her, she's it - she's as sweet and incredible as they come.

So... what are my chances, and how could I go about making something like this happen? Who could I contact? (Just in case, if anyone reading this is in a direct position to make this happen and needs proof or more info, I've set up a dummy e-mail account at deltatalk123@yahoo.ie)

Thank you so much...

HMO no wanna talky.

evil holiday magic — Tue, 20 Jun 2006 14:25:59 -0800

How do I maintain communication while dealing with HMO? My mother was recently diagnosed with an early stage, slow growing form of cancer in the uterine lining, which we were informed would give us the luxury of about a month to figure out treatment options. The OB/GYN who'd done the initial biopsy (and would be doing the surgery) referred us to a couple of doctors for an office consultation, and they discussed the options in detail. One of the doctors was very communicative and helpful. We took notes of what options were recommended (D&C and Progesterone IUD; or a hysterectomy), and it was understood that we would consider the options and would have to go to another specialist for further consultation before deciding on a path of treatment.

She's been living with multiple sclerosis for about fifteen years, so we had concernss. We consulted with her neurologist to go over treatment options and find out what conflicts, if any, might occur between hormonal and surgical treatments offered, and her MS medication (Copaxone) or even the MS itself. Stress on her, even emotional stress, can cause a flare up, and that's what we're trying to avoid.

Shortly after the first consultation with the two doctors to which the OB/GYN had referred us, the OB/GYN, who'd admitted no specific knowledge of MS, has been pushing for a certain path of treatment (D&C and Progesterone IUD), and his only communication with us on the matter has been through broken-english speaking assistants who only want to nail down the surgery schedule (to do what he's unilaterally decided).

The neurologist and other people we've talked to who've had cancer experiences recommended the hysterectomy instead, but they admittedly also lack knowledge one way or another specific to this case. We have tried contacting the OB/GYN's office to talk briefly about the path he pursues so aggressively, but our messages are only returned with solicitations to pin down a surgery date.

I'm no self-styled internet doctor, but even as a layman I want to hear that there's a logic behind the recommendation of one treatment over another, if only to know that there is a logic. The path the OB recommends may be the best, but the fact that he won't discuss it with us gives us no confidence in him. The stress of imminent surgery is stressful enough, which is why it's absolutely essential that my mom can be assured that all factors have been considered.

So...

Any recommendations for dealing with this doctor and this situation?

How do we get the HMO to work with us?

evil holiday magic — Sun, 08 Jan 2006 19:20:22 -0800

My parents are members of an HMO, but our dealings with them have been frustrating, and we need help. (*Catheter references inside.) My parents are members of a popular HMO, and my mom has multiple sclerosis. She has been luckier than many who have it, but a product of it is that she's been catheterized. She's been good about flushing the hose with saline, but sediment from her vitamins and medications does cause it to eventually clog -- usually earlier than the monthly schedule issued by the HMO.

When she first started the catheterization program, my parents would go off to the hospital (exposing themselves to germs) to get the catheter changed. A nice nurse later revealed to us that all along my mother was qualified to have a nurse come to the house to do it when necessary. This worked well for a while.

More often, however, we end up with a nurse (we'll call her the 'bad nurse') who we don't think has much regard for us. We were told by a couple nurses at the HMO that the standard change schedule is one month, and anything off that schedule must be requested on a case by case basis.

* On several occasions, my mother's made requests for changes, only to have days pass, before my father (who received a perfunctory training on this) finally had to change the catheter himself late after work.

* We've asked several questions of the the bad nurse, only to get contradictory answers. We've checked up on simple requests we've made for standard supplies (which she agreed to) only to find that they were never followed up on.

* I noticed the bad nurse's case notes were completely wrong regarding the nature of my mother's incontinence.

* My mother has complained that the nurse's method of installing the catheter is painful/disturbing by comparison to that of the other nurses.

* My mother's questions or comments are often met with unexpected accusations of her not taking her medications.

We want to get a different nurse to come in (several kind and gentle nurses, who've gotten along well with my mother and the rest of us, have offered to be the one to come here each time), but the 'bad' nurse also happens to be the case manager, and is the most local to us; so even when we request someone other than the bad nurse, from her superior, we often end up with her anyway.

We don't know what our rights or options are, and the bad nurse is stonewalling us.

MS Ride Prep/Training

FlamingBore — Mon, 11 Jul 2005 22:09:10 -0800

Last Thursday I found out my brother has Multiple Sclerosis. This morning I found out that New Mexico is having The Atomic Tour MS 150 Bike Ride in just under a month. I signed up for it. Now what? I'm not in the best shape, but I've been working out for almost a month now, 6x a week, including duration and interval cardio training and circuit training. Before that I was riding my bike to and from work several times a week, but that's only about 3 miles each way.

Other than the obvious (ride, ride, ride) what are some things I can do to prepare. What can I expect on this ~75 mile each way/2 day ride?

I assume if I totally tank the organizers will make sure that I get back safely, is that a safe assumption?

Any tips for fundraising beyond hitting up friends/coworkers?

multiple sclerosis treatments and advice

mdn — Wed, 20 Apr 2005 12:29:48 -0800

Multiple Sclerosis: what tips, tricks, medications, supplements, treatments or therapies are worth trying? My mother was diagnosed with relapsing-remitting MS about 10 years ago; about 5 years ago she was rediagnosed with "secondary progressive" MS, which means that things started getting significantly worse.

In the beginning she had trouble with balance, and had some memory/cognitive issues, but on good days was pretty normal. Now she can't walk at all without a cane and/or a strong arm, and generally needs a wheelchair. My sister's boyfriend commented that she seems as if she has alzheimer's (the doctors say these cognitive issues are just specific to the form of MS she has, which is apparently higher on the spinal cord than some forms). Her hands shake too much for her to drink out of cups anymore, and she is often too weak to sit up straight.

She is living in london with my grannie & a live-in assistant, & they have (gov't provided) caretakers who make sure the house is clean and that she gets her disability benefits & is able to eat, etc, but they do not provide any medicines or treatments that are actually geared toward improvement. At first I thought this was just because there are no such treatments, but casual conversations and simple googling has shown that most MS patients in the US are fighting the disease, not simply being nursed.

Her condition is devastating to me and I am not quite ready to give up, if there is any hope. So, please let me know of any avenues worth exploring or emphasizing. She is not really motivated to improve things herself, probably (at least partly) due to symptoms of the disease itself. Are there any programs or trials you know about that would be worth trying, in the UK or the US? Are there meds that have had a significant impact on anyone you know? My sister will be going along to a doctor's appt in May (we haven't been able to talk with them by phone) but any info or thoughts that will help us determine what might be useful are appreciated.

I made this comment earlier, which is sort of relevant.

How to find housing for a disabled person.

cmonkey — Tue, 15 Jun 2004 09:09:46 -0800

Finding housing for a disabled person? My 52 year old mother is confined to a wheelchair, due to multiple sclerosis. Her kids have all moved out, so she's trying to find a small condo or house that could accommodate her disability. Preferably one that's already been remodeled with wider doors, door handles in easy places, a kitchen that someone in a wheelchair could use, etc.

Has anyone been through this before? Are there any nonprofit groups or realtors that work specifically with the disabled?

The MS society wasn't of much use, and her current realtor has just been able to find retirement castles that are either age restricted or income restricted.