I'm doing better than I think!

[lstrl]

Please excuse the rant, but I'm very irritated today and there's nothing that will get rid of it except for when I crawl into my bed and forget all about it for a night.

After going to the MS clinic this week and talking to my doctor's PA about my lab/MRI results, he seems to think that I'm just doing wonderfully! My MRI couldn't have looked any better and I might even have a benign case of MS! My walk speed has increased (from a day where I'd done things before coming in compared to first thing in the morning. No, my walking hasn't changed, and for a little 25 foot walk, nobody is going to see what's wrong with me anyway!), and I have no new symptoms! Yeah, in a month's time! Clearly he must not have read everything that I've been through this year.

This has been a really rough year for me. I felt so bad in the summer, with weird things going on that I figure must have been a pseudoexacerbation, and then my vision started screwing up and still bothers me (I'm assuming this was a flare considering I've never been one to have vision problems and I just woke up one day with double vision). My fatigue has gotten so bad that, if I don't nap, I can barely keep my eyes open and make it through the day. People don't understand how I can be so tired when I don't do anything. They also don't have MS either.

So I've got a PA who completely disregards my symptoms because they don't match my MRI results (thinking that Avonex must be this wonder drug for me), and then my family thinks I'm being overly dramatic and trying to make my MS look worse than it really is. I mean, how could I possibly be tired when I don't work? I'm such a lazy bum who sits at home all day and does nothing. I need to just go out there and get a full time job like everyone else.

Every time I go to the MS clinic, I'm usually the only patient in there that doesn't use a cane. Yes, I understand that I get around better than them, but it's like, because all those people are so much worse off than me, my problems must not exist. I don't want to be compared to someone who has had MS much longer than me and is much older than me. If I compare myself to a time maybe 2-3 years ago, everything about my life now is totally pathetic. I'm not okay with people looking at me and thinking that I'm doing so great when I'm not. I'd like all of them to experience this "greatness" and see that it's not so grand after all.

[hunterd]

that is exactly how I feel on some days. I do not experience the comparison issues that you speak of and my doctor realizes that just because my MRI may not show any current activity that doesn't mean that I am not experiencing any new difficulties.

On days that my symptoms are making things difficult for me, I tend to sleep a lot. While I may not say exactly what is bothering me, I will be more general about it to avoid further explanation ( which will probably not be understood anyway).

In times like these no one that does not have MS themselves can relate to what I am going through. I hope this makes sense to you.

[Thinkimjob]

I do understand. In my case they've stopped saying how great I'm doing, which made me want to scream, "You have no idea!" and started "admiring my courage", which is fairly alarming.

As for doctors being all happy about how brilliantly their drug of choice is working/ will work - salt, grain thereof. My doctor told me how "lucky" I was to be able to have Aubagio.

I feel horrendous on the stuff, which she prescribed, then buggered off for three weeks' holiday. Even the pharmacist was worried, so we've made an independent decision to cut the dose in half.

MRIs only spot lesions. Hopefully this new scan that shows myelin damage will be of some use.

I hope you feel better soon.

[MSwhileOverseas]

I can so relate!

Compared to February 14, 2013 the day of my diagnosis and at the worst of my recognizable flare I am doing great but compared to February 9, 2013 I'm not doing good at all.

My life and my abilities are not the same but since it's not always visible to others they don't get it and it sucks!

That is why I like this site so much, because we all understand!

[heliotrope]

I have pretty clear walking issues - if you're watching my feet. I still move pretty fast, but I tend to have to correct my balance a lot or end up dragging one or both feet.

I had a conversation with a friend recently, and this topic came up. The one thing both of us agreed upon is that most people don't look down. Unless you have an issue that screams in people's faces, they're not going to see it. It's sad.

[Tawanda]

I've got a PA who completely disregards my symptoms because they don't match my MRI.

One thing that helps me in these types of situations, is that when it comes to Multiple Sclerosis, you don't get it until you GET it. My mother had M.S., and I never really understood her suffering until I was diagnosed.

I forgive insensitve clods like your PA because I think they are well meaning, and they are lucky they don't GET it the way we do. I wouldn't wish this disease on anyone (except maybe people like Charles Manson and the like...).

[Tawanda]

I had a conversation with a friend recently, and this topic came up. The one thing both of us agreed upon is that most people don't look down. Unless you have an issue that screams in people's faces, they're not going to see it. It's sad.

I could not agree more (I recently "Netflixed" a documentary called "Man Without a Face" about a guy who had something similar to the elephant man...everyone on the street knew he had issues!).

[MSW1963]

I love my MS doc, but....

My MS doc very enthaustaticly told me I would live well into old age. I smiled, as I looked at my extremely fit, vigerous and attractive 70yr old MS doc. I always considered myself totally lucky when it comes to good genetics. I won the jack pot in may regards, and used to imagine myself working, traveling, maybe an extreme sport?, at 70yr of age, as I now view my doc.

It's exactly what scares me the very most, the idea of surviving well into old age.

[Tawanda]

It's exactly what scares me the very most, the idea of surviving well into old age.

...and feeling like crap every single day! I definately prefer quality over quantity in that respect. A long life with M.S. vs a long life without M.S. is like comparing apples to oranges IMHO.

[Portia]

You have described my own situation perfectly, lstrl. Sometimes I wish that some of my friends, coworkers, medical professionals could feel like I do for just 15 to 30 minutes. Just a short time so that they could understand that I may look ok but I'm not ok. Why do I always walk better on appointment days? At my last appointment, the doc evaluating me for the EDSS asked if I could walk a mile and how long it would take me. I said yes and maybe it would take 25 or 30 minutes. He thought that was great! Well sure, I guess compared to what it could be. But how about what it used to be? And they never ask about pain either.

I feel lucky to have one friend who asks about how I feel, and if he doesn't understand he asks me to explain it. He still doesn't get it half the time but he pretends he does, haha.

[Thinkimjob]

Hello, Portia. The trouble is with MS, is that it will never go away. Ten minutes, could deal with that. Ten days, ten weeks, ten years even. But the rest of your life?
It's beyond understanding until it happens to you.

[AnneLouise]

Portia, they never ask about pain because "there is no pain with ms!" I had two neurologists say this to me. What, spastic muscles aren't painful? Especially ones due to a faulty nervous system?

I kick myself for not saying anything. I just looked at them like they were crazy. Because they were. I honestly don't know where they're getting their information from.

It really is beyond understanding until it happens to you.

[lstrl]

I can totally relate to the walking a mile thing! I used to go to a park that had a 1 1/4 mile trail with my mom. Back in the day, I'd run that trail (I could make it a lap and a half before taking a walking break) and it was amazing! Now it's very risky for me to even go. I'll make it maybe halfway through and my legs get so messed up and my balance is so awful that I don't know how I haven't fallen yet, and I have to sit down just to finish the trail and not get stuck out there. The last time the bench I always sit at was taken so I had to keep going. It got so bad, I had to work so hard to fight back the tears because I was so upset that I couldn't make it. I've never been back.

I remember in nursing school that in the definition of pain, it is what the patient says it is. You can't go by the way they're acting, if they tell you it's horrible, you're supposed to believe it's horrible. To say a disease causes no pain is just ignorant when you're not living with it. How would you know? It's not like you've experienced it for yourself (that totally irks me). It's funny how it seems like practically every medical professional has forgotten what they learned about pain while in school. Now everyone who complains about it must be a drug or attention seeker.

[Windwalker]

I totally understand where your coming from. I look with envy upon people like you. Don't take that the wrong way...my MS took my ability to walk at 49...I envy people with MS that can still walk, work, take care of themselves. Not a thing in the world wrong with that.

This does not mean I don't know what your going through and that it is horrible...I do.

Maybe you are doing better than you think.