melasnus

So sad:
https://www.bbc.com/news/entertainment-arts-45930409

tanman

That's terrible.

For some reason I was thinking Salma Hayek and for a split second thought wow the MS really changed her.

IDrinkMolson

Wow, I saw her on the Gong Show earlier this year and she looks great!

GoldenJCJ

I definitely think she’s one of those actresses that gets better looking with age. She’s always been cute but I never really felt she was super attractive until just a couple years ago.

It’s sad to hear that she has MS, I’ve always liked her in everything I’ve seen her in.

rw2516

Had a cousin with MS. Hit her in her early 20s. She lived with it for 50 years with the medical know how of 1960s - 2010. Hopefully they've made some progress since then.
For first 10 years I didn't noticed any change in her. I moved away and didn't see her for 25 years. When I saw her again she was in a wheelchair and couldn't walk anymore. Still looked otherwise healthy, as if she was ok and just sat in a wheelchair. I didn't see her again so don't know how bad it got. It was 15 years after I saw her that she died from it. I think she was 72.

Bluelitespecial

I have a close friend with MS, she was diagnosed in 2014. She had It pretty rough at first and was in a wheelchair for three years. She has gotten injections and now walks with ocassional symptoms. I only hope she can have a long and normal life as much as possible. I saw the news on Selma Blair I hope she can find the right treatment for her.

melasnus

Her eyes are bewitchingly haughty...gets me every time.

Obi-Wanma

I have MS. I was diagnosed 5 or 6 years ago. Apart from a few quirky things, I'm good so far. MS medications today are a lot better than they were years ago. They're ridiculously expensive, but they drug companies themselves pay for them and it comes off of my deductible, so it's actually saving me money on my health insurance to be on it.

I should contact Selma and see if she wants to hang out and talk about being from Michigan and having MS. We have so much in common, lol.

Rival11

How bad is it really though?? I keep seeing that MS is very treatable but then I hear of people ending up with issues later on. I'm just very curious about this and don't know much about it.

tanman

Oh wow. Glad there aren't too many complications for you.

Yeah you should definitely do that and let us know how it goes

JeffTheAlpaca

She is 46 and still looks good. Hope she can beat this.

andicus

I can't speak for Obi-Wan, but as an overall, it's a horrible disease.

When you hear that it's treatable, treatment mainly involves delaying progression of the disease. There is no cure.

Treatment, itself, can be unpleasant, depending on the drug. Possibly daily injections, if you're lucky three times weekly injections. If you're really lucky, you can take a pill form. However, at least one of the pill forms can be dangerous as it can cause a lowering of lymphocytes, which makes you susceptible to PML(an infection of the brain, often resulting in death.) As Obi-Wan mentioned, they're also very expensive, but some companies are good with providing medication to those that can't afford it, and/or don't have a drug plan.

Regarding the disease, while persons afflicted can appear normal, fatigue is very common and can be overwhelming. Balance issues can also be very nasty. Memory issues can really suck, too. I.e. there can be a lot of issues that are not apparent to a casual observer, but can significantly affect the person with the disease.

Obi-Wan, sorry to hear you suffer from this. I know, all too well, how awful it can be. Which drug are you taking?

Obi-Wanma

It's kind of a crapshoot really. It all depends on when you catch it and how soon you start treatment. And even then you could have an attack that disables you.

When I was diagnosed, how it was described to me is that your immune system starts attacking your brain. So you have these attacks, and what symptoms you have depends on what part of your brain is attacked and where the lesions are. Symptoms from MS can be all over the place and can affect so many different things. So you might have an attack, and let's say that one side of your body stops responding the way that you expect it to.

If you're already diagnosed, what they generally do at that point is put you on a steroid drip which helps you recover, but you don't really come all the way back. Your "normal" gets a little worse. If you keep having attacks on the same part of your brain, that's when things start to get really bad.

For me personally, I've had ongoing bowel issues for close to 20 years, and there was never really a cause found by my GI doctors. When I was diagnosed with MS though, the way it was explained to me, it really started to make sense to me that it was all related to my MS. I had already adjusted to a "new normal" in that area before I ever even considered the possibility of MS. I only wish it could have been found sooner, but who thinks to do an MRI of your brain for bowel issues?

When I was first diagnosed, I was having a really weird issue where I was cold all on one side of my body. Like my left arm and left leg were cold (even when running them under warm water) but my right arm and right leg were normal. I went to the hospital for that, because it was so strange, and I underwent a battery of tests to rule out a stroke, and no signs of a stroke were found. Only then did I get the MRI done, which lead to the initial diagnosis of possible MS, which other tests later confirmed.

That particular symptom has never really recurred, and I've only had really one major attack after that. Earlier this year I had an issue where one side of my mouth was sagging a little and one side of my body was slow to respond. I was also slurring my words a little, not because I didn't know the words, but because my tongue was numb on one side. It was really more of an annoyance than a major issue (I was still able to function and do my job during this time), but I went through another steroid drip to get me back to normal. I don't really have those effects anymore, but there is still a slight sag to one side of my mouth that really no one but me notices.

I'm on a oral medication called Tecfidera that suppresses my immune system, and the idea behind that is that it should reduce the frequency of attacks. I don't have to get regular IV's or injections or anything like that. Side effect of that of course is that I get sick a lot easier. I've had some of the worst sinus infections of my life this year, but otherwise I'm doing ok and no major physical or mental issues. Of course, I could always have an attack that could cause some major issues, but I guess I've been relatively lucky so far. It's also one of the drugs that could leave me susceptible to PML, but my neurologist monitors my white blood cell count regularly, and I'm told there's really no danger unless that starts dropping (it hasn't), and if it did, they would change my medication. Fatigue is also an issue for me, but I think it's mainly due to my irregular sleeping habits. Trying to correct that with going to bed earlier and medication, but even with the medication I find it difficult to get more than 6 hours of sleep at a time, regardless of what time I go to bed.

My neurologist actually says there is a medication that's on the market that is an IV drip and you only have to get it once a year, and most people have no side effects after that, but the immediate effects of the IV are rough, and also most insurance won't pay for it until you fail on at least 2 other medications first. I'm on my second medication. I was on Gilenya (another oral medicine) before Tecfidera, but my liver enzymes were climbing to an unhealthy level while I was on that. Nothing unusual about my bloodwork on Tecfidera so far (been on it since March).

Noonan

My wife has MS. Diagnosed in her early 20's and had to re-learn to walk. Was in rehab for over a month. Now, you wouldn't know she has it from looking/talking to her. Treatments have come a long way. Thankfully she has the progressive type rather than regressive. Progressive means she can have episodes but recover back to normal. Regressive type usually means that with an episode, whatever symptoms showed up could be permanent.

Rival11

Thanks for the info guys, clears a lot up. The way it normally always sounded to me was that once you were on treatments you're fine, read somewhere as welll that you're looking at most (and definitely not in all cases) a 7 year shorter life span but then I even hear of people living longer as well.

I won't lie either I'm also curious as while I'm very healthy and workout all the time, just this past Sept. a ran into my own possible "brain" issue - I went to the doctor because I was lightheaded (NOT dizzy) for about 8 days straight - I was really stressed out at the time and when I saw the doc I had a fever (I never get sick either so I didn't even know). Everything came back perfect except for my CT scan - they found a calcification on my cerebellum, did and MRI and it didn't really show up any better - saw a neurosurgeon who said he wants a better look but isn't too concerned but he's sending me for a 3 MRI's - 1 MRI for the brain and 2 MRA's (Dyes) for the neck and brain - seems he's only looking for a possible AVM (basically, a tangled wad of blood vessels - it's possible that if I have it, it's something I could have had since birth) - my symptoms didn't match anything but my regular doc just wanted to do the scans because I've never had them. AVM's can be deadly but I have to be honest, I don't think I would have a craniotomy even if I was told by the neurosurgeon that I should do it. I would do gamma knife but that's about it. We'll see.

rw2516

I had an AVM and this is what I know about it.
You're born with it. It's a birth defect. When you are forming in the womb the process that forms your blood vessels goes haywire and forms a clump of extra vessels you don't need. These vessels are all tangled around each other in a wad. It's benign in the sense that it's being there causes no problems. You can live your whole life with it there and never have a problem.
The problem is that these vessels don't have the structural integrity of normal vessels. Over time they leak, blood can seep through the walls or they can just break.
For whatever reason it occurs almost exclusively in the brain. In my case it was the cervical spinal cord which is much rarer.
The vessels had slowly leaked and over time formed a clot. It was the clot causing me problems.
Had surgery. Doctors didn't really know what was up until they got in there. They removed the clot but left the AVM alone because it was deeper in the cord and they didn't want to go poking around in there.
I recovered.
Seven years later problems began to reoccur because the AVM had continued to bleed and formed another clot.
This time they removed the clot and the AVM. That was 1981 and no problem since.

Think of a mulberry bush. Your blood vessels are the bush, and the AVM is this little mulberry attached to the side.

andicus

I think you're mixing up your terminology. Relapsing-Remitting is the type where you can have issues (relapses) that are often temporary.

Most progressive forms of the disease mean that you have issues without (or mostly without) any remission.

FWIW, this topic is (now) probably better suited for Other.

JeffTheAlpaca

I think Jack Osbourne got diagnosed with MS 6 years ago but he seems like he is doing fine.

Celebrities have the money to get the best treatment.

Bluelitespecial

Most notable celebrities with MS are Jack Osbourne and Montel Williams. Annette Funicello also had MS and passed away from how much it progressed.

Rival11

Yeah Mods, if this get too sidetracked, feel free to move or split it.

Went for my MRI and MRA's yesterday - would have been able to do it without sedation but I didn't know the cage they put over my head covers the mouth as well - that and the table was pretty damn uncomfortable too - was in that tube for over and hour (with being pulled out twice).

First, I want to say this about contrast dyes (gadolinium) DO NOT get it unless it's absolutely necessary - my neurosurgeon requested it but when I got there I asked the nurse if I really needed it, she asked the radiologist and within two minutes he said there was no need for it - remember, it's your body and if you've done your research and don't like what you found out, tell them - don't ever go by the "Well if the doctor ordered it then I must need it" mentality. Of course there are exceptions to this, that's common sense.

Today I went to the neurosurgeon for my results - what he thought was a possible AVM was just calcification remnants from what he said was a stroke when I was a baby - he said he was on the phone with the radiologist who reviewed the MRI and MRA scans and they both came to that conclusion - he showed me in the room as well (so weird looking at your brain on giant monitors). Crazy, I asked why I don't have anything physically wrong with me he said because really it's very minor but still a stroke - said my cerebellum was bigger on one side than the other as well (atrophy is very common with strokes and such) - I asked if it would continue to shrink he said he didn't really know but to not worry either he advised to scheduled another MRI two years from now but said that if I have zero gait problems to not even bother getting it.

What a stressful month and a half it's been - still hasn't hit me that I'm ok yet either.

Oh and sorry, I know I don't have MS so I'm off topic but This just recently happened to me and I wanted to share as I've been posting here......wow, for 14 years.

Noonan

You're right. No one tell my wife I mixed up the terms! Been trying to learn as much as I can while we've been together but there's so much info and data.

Double_Oh_7

I don't know... have you seen Teri Garr lately?

Obi-Wanma

Relapsing is what most people have when they are first diagnosed (I do too), but it can eventually turn to progressive.

andicus

It can certainly be overwhelming. I would hope she would understand.

Yeah, while money can have some effect (in being able to afford these very expensive drugs), it certainly has its limits. It's not as though there is some 'cure' drug for any forms of MS that you just need to be able to afford.

JeffTheAlpaca

Maybe she is not as rich as the other celebrities who got it and she has not done anything on TV or movies in decades probably.