Is this MS?

June 16, 2008 8:08 AM

I may have MS. Now what?

It might not be MS, but there's definitely something wrong.

I have experienced many of these symptoms, some getting progressively more apparent, over the past 2-3 months: http://www.mult-sclerosis.org/mssymptoms.html

Yes, I have a doctor appointment scheduled. But I'm a wreck.

posted by anonymous to health & fitness (19 comments total)

Wish you weren't anonymous.

Do you often feel that there is something wrong with you but you just can't pinpoint what it is?
posted by sondrialiac at 8:15 AM on June 16, 2008

If you have a positive MS diagnosis, your doctor should be able to explain what happens next with regard to the progression of symptoms, what medications you will need to go on and what to expect. Your doctor should also give you resources to deal with the mental and emotional issues surrounding a positive diagnosis.
posted by bryanzera at 8:25 AM on June 16, 2008

That's a generic list of symptoms for the most part. You probably dont have MS. You should accept that fact that its nearly impossible to self-diagnose common illnesses, let alone serious rare ones.

You should learn to relax until you see your doctor.
posted by damn dirty ape at 8:27 AM on June 16, 2008

Now what?

Now you remember to breathe, and use the tremendous self focus you're feeling to care for yourself emotionally and physically.

Waiting for an appointment and, after that, for test results is going to be very stressful. Spend the time managing that stress.
posted by tkolar at 8:30 AM on June 16, 2008

I have had a permanent disability (cerebral palsy) from birth. While my symptoms do not match those of MS, I can offer some advice and guidance on coping with health related stress, such as you are experiencing.

First, I'm sorry to hear that you're going through a rough period right now, but know that you are doing the right thing by going to the doctor. It's a scary step, and no one wants to find out a worrisome diagnosis (if it is indeed MS or another condition) - but just take one day at a time. Precautionary measures or early intervention is key to a healthy body. Good job for knowing your body and knowing when it isn't working properly.

Second, take care of yourself. With my chronic condition, I find that my medical issues become worse when under stress. If you can, try to eliminate as much external stress in your life as you can. I'm not saying you should give up work/school/volunteering/sports/etc. - I'm merely suggesting that you know your limits. Some days it's a struggle for my body to work, and while I much prefer walking to the grocery store 20 minutes away to pick up food, I know that it's safer (and less stressful) to order groceries online for delivery due to having balance issues during the winter months. Adaptations that extreme may not apply to you, but it's the same advice I give people who say, may have a arm or leg in a cast. Know that your body isn't at its prime right now and you might need to adapt and adjust (even temporarily) to your situation.

Third, have you ever thought of counseling? Even if it is nothing - you are going through a stressful time right now. Having someone to confide in might be a good thing. Or, if you're not into therapy, find your support network (friends/family/tribe) if they are willing and able to cope. They may not know what to say or do in your situation, but if all you need is a sounding board, I hope they can help. Either way, try to find a support network, that's important.

Fourth, know that it's a dynamic and not static state your in. Some days are worse than others while some days will be better than others. Just accept it. It doesn't make things easier, it just puts things into perspective. Yoga and stretching help me find my focus in this regard. Sure you might have to wait for tests, specialists (and maybe a few rounds of it if they can't find out what's wrong the first time) and it is frustrating, but breathe. You can only focus on today. Not the past and not the future. Yes you can "what if" as much as you like, but I try (not always succeed) to focus on what I can do now and not what I can't do.

Fifth, find your passion. During various long months of rehabilitation, I've acquired many different skills I would not have otherwise gained. Art, music, knitting. Immersing yourself in an activity that you enjoy can make you forget about your woes, even just for a little while.

Sixth, continue to live life. I can't stress this enough. Do what you can. Try not to let an unknown scare you (it's hard, I know). Try to carry on though. You never know what adventures will come your way, so continue on the journey of life. I may sound like Pollyanna, but it's helped me get to where I am today. You just have to keep moving.

There are no easy answers or solutions in times like these, but it's important to do what you can, know your limits and to take care of yourself. Good luck.
posted by carabiner at 8:38 AM on June 16, 2008 [6 favorites has favorites]

Wait - you haven't seen the doctor at all yet? Relax and stay off the internet. Those MS symptoms are so common and non-specific. I know this isn't what you want to hear, but those are exactly the kinds of symptoms that are really easy to imagine when you're feeling worried. I obviously don't know anything about your specific symptoms, but it's unlikely that you have MS.

Also keep in mind that normal, healthy people experience "MS symptoms" all the time, sometimes because of a different health problem, sometimes because tingling in the hands is a part of life. I don't want to be dismissive, but based on your question, I think this has gotten overblown in your head. Certainly do go to the doctor, but I don't think you need to be on MS Watch every second of the day until then.
posted by robinpME at 8:48 AM on June 16, 2008 [2 favorites has favorites]

I notice that that symptom list leaves out something really crucial for MS: there need to be at least two lesions separated in space (neurologic localization) and time (MS remits and relapses-- at least 3 months apart). Self diagnosis is unproductive; take your actual symptoms to the MD.
posted by a robot made out of meat at 9:03 AM on June 16, 2008

Seconding staying off the internet. Seriously. Please, please stay off the internet. I would have saved myself a lot of grief if I had listened to people who told me this.

I spent almost a year in neuro test hell, and had convinced myself during that time I had, among other things, MS, a brain tumour, a very very rare vascular disease that typically only affects those of Asian descent (I'm Caucasian) and was in general a walking stroke waiting to happen at 28. I *did* have valid neurological symptoms, and now I do have a label for it, but thankfully, the brain is a miraculous thing that, combined with one tiny pill a day, has taken care of things all by itself and is now 98% fine! But that year I spent trying to figure out what was wrong with me, instead of letting the doctors just do their job, was one of my worst years, if not the worst. The internet makes it so much worse, because it only documents the absolute worst case scenarios. There is no doctor there to tell you that "no, that is not what it your problem is, because although, yes, you do have symptom X, you do not have A, B and C." If you're trying to research a doctor provided diagnosis, then the internet is a wonderful tool. But it does more harm than good as a diagnosis tool for those without the appropriate medical background.
posted by cgg at 9:25 AM on June 16, 2008

Seconding, stay off the internet.

I'm currently going through the process of being diagnosed with an entirely different disease. Although MS has been ruled out, I can leave a big tick next to many of the symptoms on that site.

See a doctor.
posted by popcassady at 9:39 AM on June 16, 2008

My sister was recently diagnosed with MS about six to seven months ago. It is important to note that MS looks like a lot of other things, and vice versa. Really nailing down whether or not you have MS can take a number of tests... and sometimes people don't know if they really have it until they have their first real relapse (in my sister's case, a bad and sudden case of Optic Neuritis, which was originally misdiagnosed by an ophthalmologist). Not to scare you but my sister went through a few spinal taps, MRIs and some other stuff before they knew for proof positive that it was MS.

I agree with everyone here who says, see a doctor first before you start jumping at MS. If you are really truly worried it could be MS, I guess you could go see a neurologist first. My sister, unfortunately, first found out about her MS through her first major relapse and ended up going to the emergency room to be diagnosed. She went through hell. :/

Don't wait that long, go to a doctor and see what's up.
posted by tittergrrl at 10:04 AM on June 16, 2008

I've had way too many family members and close friends get hit with MS. The things about it is that it's different for everyone. Yes, there's a lot of symptoms listed that you might have on that site. But as many people have mentioned, it's a pretty generic list of symptoms, some or all of which could point to something else. You're doing well to see a doctor on this. I've seen people with some symptoms, some with others, and some with yet others. My sister is living a fairly normal life 3 years after diagnosis. My mother was in a wheelchair 2 years after diagnosis, and two friends have lived fairly normal lives for 20+ years after being diagnosed. Another friend is 6 years since diagnosis, and she's still working but has rough days. MS is an incredibly difficult disease to pin down. The symptoms are only a starting point in diagnosis.

Stay away from internet diagnosis sites for a while. One thing doctors don't really like to hear is "I think it's *insert condition here* after checking the internet." This is something they've trained for well over a decade for, and a LOT of the time the problem people thought they had from internet research isn't even in the same ballpark. The thing I use medical sites for on the internet is simply to see if this is something that I should check with a doctor about. Let the docs do their job.
posted by azpenguin at 10:24 AM on June 16, 2008

OK, let's assume you do have MS. There's no specific test to determine if you have it, so you'll spend probably a few months having MRIs and tests to rule out Lupus and other illnesses. If they can't rule anything out, you end up with a diagnosis of "probable MS". If (and again if it's MS, it's a few years of waiting and watching to determine what course it's taking (relapsing-remitting, etc))

If they think it's MS, you'll talk to your neurologist about medication. There's a bunch of stuff out there for MS, and you'd probably have to inject yourself once (or more) per week. After that, you may live a long and reasonably healthy life. Chances are good, even with MS, that you won't need a wheelchair. In fact, you probably know or see someone with MS and don't know it, since many people with MS look just fine. I know it seems scary because the only people you see with MS are in bad shape, but that's because the rest of the people with MS are doing just fine and not bothering to mention it to anybody.

MS is not the end of the world. Really. The worst part for most people is that it's scary and unfortunately not a completely predictable disease; if you ask your doctor "What will happen to me?", you should expect an answer of "We don't know, but with medication you'll probably be fine for a long time".

Good luck and try to stop obsessing. Odds are, you're going to be OK.
posted by stefanie at 10:32 AM on June 16, 2008

Your brain needs a hobby while you wait for that appointment, even if it's just saying "While something scary *could* be happening to me, I don't know that for sure and it won't do me any good-- and will make me feel worse-- to sit here and obsess over it. This is why they came up with medical science, after all, to take care of people who have concerns about their health. Now I'm gonna watch cartoons/ knit/ read a book for a while and kill time before my appointment."

It sucks, but you're certainly not alone in that kind of "what is my body doing behind my back" fear. It takes work to learn to accept that your body is going to do what it does regardless of how much you sit there and stare at it and wish it wouldn't, and the only thing that makes a difference is taking some kind of constructive action.

Which you're doing by seeing your doctor, so relax.
posted by fairytale of los angeles at 10:49 AM on June 16, 2008 [1 favorite has favorites]

First, see your doctor(s) before freaking out. All those symptoms can be MS, but they are also very common symptoms of anxiety. So the more nervous and stressed you are, the more you may be feeling it physically. Whether you do or do not have a neurological illness, consider taking steps to relax and get the worries off your mind, whether by distraction, exercise, making plans for the worst-case scenario, even medication if your doctor recommends it. Good luck!
posted by Mr Bunnsy at 10:58 AM on June 16, 2008

I was in a similar situation some 12 years ago or so. I'd already been dx'd with Lupus a few years before that, but then I started getting new, weird symptoms. The main one was a tingling sensation in one limb or another. This was before the Internet was popular (or before I even had a computer), so I did my research at the library. Several of my other symptoms in addition to the tingling pointed to MS. I made a special appointment with my rheumatologist to tell him of my concern. I felt like he shrugged me off; all he did was have me alternately stand on one foot, then another, then push against his hands and resist him when he tried to squeeze my fingers shut. He then told me not to worry about it. That was a Friday afternoon, and I literally worried myself sick all that weekend. I couldn't eat, I threw up, I lay in the fetal position in bed a lot. (I'm not exaggerating.) I only started to feel a little better on Monday when I spoke to a friend's mom, who is a nurse; she told me that the pushing against the hands bit was a standard preliminary test for MS - the doctor was checking for any weaknesses and that he would've ordered a CT scan or MRI had he found something questionable.

Anyway, it eventually turned out that my symptoms were due to vasculitis, an inflammation of the blood vessels that is a not uncommon manifestation of Lupus. All these years later, I still remember that horrific weekend and how sick I made myself . I realize now that all the worry in the world wouldn't have helped even if I had been dx'd with MS. So, as hard as it is, try to close that part of your mind concerned with your symptoms until you see the doctor and get further testing. There are a LOT of conditions/maladies that present similar symptoms to MS. I wish you the best of luck and some peace of mind in the meantime.
posted by Oriole Adams at 11:19 AM on June 16, 2008

I thought I had MS once, and I really worked myself up into a state about it. I had a lot of those symptoms on the page that you linked to. Like others have said, they are symptoms for many things, including anxiety. I had anxiety and the more I worried about having MS the worse the symptoms got. Please try not to worry too much before you see your doctor. I recommend finding something that is very distracting like reading novels or watching movies.

It's very, very common for people to think they have MS and have it be anxiety. After I had my experience with this I did a web page about it and am working on a book. I was on the Today show last April talking about it and they got a huge response from the show.

I don't think we are supposed to self link but if you want a link to my site, you can email me. My gmail name is the same as my mefi name.
posted by Melsky at 2:00 PM on June 16, 2008

Diagnosing MS is very difficult even for trained neurologists who have a battery of tests to employ. "I diagnosed myself with MS by looking at a symptom checklist on the internet" has nothing to do with what I do when I tell a patient they have MS; rather, what you have done is closer to "I got a ridiculous idea in my head and frightened myself with it."

Go to the doctor. Let the doctor help you make sense of the symptoms you're experiencing. That is what doctors are for.
posted by ikkyu2 at 6:13 PM on June 16, 2008 [1 favorite has favorites]

I have (a diagnosis of) MS, have had this disease for at least 11 years now. My walking range is limited, and I won't work over 40 hours per week, but I'm working - and as an attorney, not counterhelp down at the Goodwill, and I still take care of myself and my pets. If you do have MS, it can be rough, but it's not the end of the world.

There are loads and loads of other things that look like it, though, so try not to get too flipped out by it. Hell, maybe I should go nag a new doctor myself. That last neuro seemed kinda lazy.
posted by dilettante at 7:37 PM on June 16, 2008

Be prepared for doctors to blow you off, too. Keep trying til you get what you need. My friends with MS and Lupus both had 5 years of doctors telling them it was a) stress, b) depression, c) PMS, d) diet, e) hypochondria.

They ended up getting diagnosed when they shelled out real money and travelled to an actual expert outside their regions and HMOs. (One now goes to UCLA and one I think goes to Stanford or someplace, but they only have to go once or twice a year, if that.)
posted by small_ruminant at 10:32 AM on June 17, 2008