MS resources wanted

[boxofdelights]

The MRI showed lesions in the ocular region of Nixie's brain. The doctor at that hospital said he thinks it's MS. I don't know whether they have to run more tests to be sure? I don't know much at this point.

They transferred her to another hospital with a neurologist on staff. She'll stay there for three days of steroid treatment. We're trying to decide whether Mungo or I or both of us should go be with her. I'm better at emotional support, but he's pretty good, and also not afraid of driving an unfamiliar car in an unfamiliar city. Also he's a nurse, so better at getting information from medical people.

Tell me what you know about MS. Good resources about living with chronic illness in general also appreciated.

Comments

[sasha_feather]

:( . <3

The best book I've read about chronic illness as disability is The Rejected Body. It's an academic book but very readable.

[j00j]

<3

[redbird]

What I know won't fit here, and some of it will only come to mind if we're discussing a specific symptom or question; if you want to take this to email I'm vr@panix.com or redbird@dreamwidth.org, and I recommend looking at the MS Society's website.

In the very short term: I had steroids for optic neuritis, which means vision problems caused optic nerve inflammation. Nixie will almost certainly be given steroid pills to taper down from the IV dosage; mood swings and more-than-usual-for-her hunger are common from steroids, so make sure there's food in the house that is already cooked or doesn't need cooking, or at most a quick zap in the microwave. (Whatever her usual habits, this is when she might grab either peeled baby carrots, a hard-boiled egg, or some ice cream, but probably won't take the time to make an omelet if she has raw eggs and a block of cheese.)

MS is a varied syndrome, and it may take a while to figure out how serious hers is. One of the difficulties here, at least for me, was that uncertainty: "how serious" doesn't just mean the effects of this incident, but whether she will have more attacks ("exacerbations"), and if so, what form they'll take and whether/to what extent she'll recover after an exacerbation.

There are now a lot of what the doctors call "disease-modifying agents," drugs that can stop or slow the progression of MS, some of which may also help with some of the symptoms. Choosing one is likely to involve questions like tolerance for risk, likely side effects (which vary from person to person), and whether she's comfortable with injections. She may also be prescribed/offered treatment for specific symptoms; mine include an antidepressant, gabapentin for pain, and a stimulant for fatigue and executive function issues.

There's also a lot of snake oil out there, because MS is one of the (many) things where the normal course of events is that it can flare up and then quiet down, so anything at all a person does during a flare-up (from dietary changes to pills to reciting a specific prayer every day at moonrise) can appear to be helping. This also means that anyone she mentions the diagnosis with may offer suggestions, ranging from the merely annoying to the expensive and/or dangerous.

I found that with this diagnosis, it's easy to think of it as the possible cause for a huge range of symptoms that didn't come immediately after an injury. If you-a-person-without-MS would see your doctor about something, it's still worth consulting your doctor about that thing if you have MS; if Nixie's MS "progresses," she'll wind up figuring out when to call the neurologist immediately and when to go to a primary care physician.

One bit of good news is that about a third* of people who are told they have MS never have any further symptoms—that can mean either a life that looks just like that of someone without MS, or that they're left with some amount of impairment after the incident that led to the diagnosis, but it's stable and doesn't require medication or ongoing doctor's visits, even if the person needs (different) eyeglasses or a cane.

*that's an approximate fraction remembered from 20 years ago, but this is certainly within the range of ordinary outcomes.

[tylik]

I was slightly involved with a research group that worked on MS, but that's probably at a un-usefully detailed level. But a close colleague had both symptoms and lesions a couple of years back when I was worked with her, and would not have diagnosed with MS until a second occurrence. (She had both a professorship, a marriage, and two young children, so she was pretty freaked out about the possibility of her life becoming drastically more limited. As someone who has gone through various phases of chronic illness, we had some pretty intense talks.)

Similar recollections on the number vis a vis non-reoccurence. There might be more information in the particular MRI that leads the doctor to say that... but there's also so much room in terms of different data sets, communication skills and delusions of godhood among physicians, I'd collect all the data first.

[snippy]

I have a coworker with MS; this person occasionally uses a cane but not as often as one day a week, and goes for an MRI annually. Otherwise seems to have no apparent issues; has had two different successful careers, has a life partner, travels for pleasure.

[seascribble]

I'm afraid I don't have any resources, but I did go to grad school with a girl who had an MS diagnosis (probably at about the same age, actually) and who started taking meds for it and found a lot of relief from her symptoms. Thinking good thoughts for Nixie and the family. <3

[kathmandu]

I don't have any informational resources, but sending best wishes.

[wcg]

I have no expertise to share, but this has to be frightening for you. So I figured I'd say I hope things work out well and she can be stabilized if not cured.

[clawfoot]

That's really scary. I don't have any advice/resources, but I'm thinking of you all and hoping for the best.

[watersword]

Oh gosh, I hope she and you are coping as well as possible! I'll be thinking of you.

[randomdreams]

Oh my.
I had no idea Mungo was a nurse, by the way.

MS patients get bombarded with the most awful barrage of expensive bogus treatments.

As others have said, for a lot of people a diagnosis can be followed by years or a lifetime of no symptoms. I very, very much hope that is the case for her.
I know multiple local people with MS who may be willing to talk to her about it.

[loligo]

I have no useful advice, but I'm sending good thoughts to you and your family!

[mishalak]

My cousin once removed has MS. She lives with it, but it does tend to dominate her life rather like if someone ends up with gradually increasing visual problems. Because it is an incredibly physical world and is not set up to accommodate people seamlessly as they have problems that periodically shut down some part of their physical body. That said she has had a full life with all the ups and downs, marriage, children, etc.

Not all problems can be solved, but all problems can be managed.

[sam_t]

Thinking of you. I know it's particularly stressful to wait and find out if there's a problem and if so which of many problems it is.

The UK MS society was recently very useful to someone for whom this was a possible diagnosis. I expect some of the information on their website will be country-specific, but they may be useful as a different perspective. I don't know as much about the MS Trust (also UK) but they also have online resources. There are also a fair few online support groups around, including ones aimed at a younger audience.

I've recently been told about a charity which helps people with MS get into or continue their involvement with sports, particularly cycling and running, linked to the BikeMS fundraising event. I haven't investigated them at all myself, so am just passing on the name in case it it's useful: they're apparently called Meat Fight.