Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hold on folks. This is gonna be a long one. I'm frustrated. I'm frustrated with the way people treat me. Yes, I'm dramatic. Yes, I'm the kind of person who googles everything and complains about everything. That's me. I have panic attacks and health anxiety. I'm a bit of a hypochondriac. But I feel like that comes with the territory of where I've been. I'm an anomaly. Tests are always half positive. I get a sun rash and have a positive ANA but I don't have Lupus. I have severe dry eyes and test positive for Sjogrens at the opthalmalogist but blood tests are negative. And I have had an abnormal MRI and a positive spinal tap but I don't have MS.
I went to the eye doctor today because I've been having trouble with night vision. First thing he says is, "so you have a clinical diagnosis of MS now?" And of course I say no. And after a great eye exam that shows I have 20/15 (better than perfect vision) he says, "for lack of a better word, sometimes MS causes things like this. I'll let your neurologist know." So i told my husband tonight that I went and he got mad at me. "You're killing me with the doctor bills," he says, "why would you go to the doctor for that?" He was genuinely upset that I got my eyes checked.
When I couldn't see or walk or smile everyone was suddenly worried about me. When they said MS, people cried and tried to console me. They looked back at the last few years and felt bad for doubting me. Then the doctor said, "well it's a 80-90% chance this is MS, we'll monitor you" and I did my steroids and I got better and now everyone thinks I'm bullsh*tting again. If I'm tired or dizzy or can't see at night, maybe it's all in my head. Maybe I'm just imagining it's happening because I'm scared because of what happened to me. Nobody believes me. Doctors do but not the people around me. I feel like my life would be easier if the second event would just happen. Give me the diagnosis. Maybe then they'll take me seriously.
I went to the eye doctor today because I've been having trouble with night vision. First thing he says is, "so you have a clinical diagnosis of MS now?" And of course I say no. And after a great eye exam that shows I have 20/15 (better than perfect vision) he says, "for lack of a better word, sometimes MS causes things like this. I'll let your neurologist know." So i told my husband tonight that I went and he got mad at me. "You're killing me with the doctor bills," he says, "why would you go to the doctor for that?" He was genuinely upset that I got my eyes checked.
When I couldn't see or walk or smile everyone was suddenly worried about me. When they said MS, people cried and tried to console me. They looked back at the last few years and felt bad for doubting me. Then the doctor said, "well it's a 80-90% chance this is MS, we'll monitor you" and I did my steroids and I got better and now everyone thinks I'm bullsh*tting again. If I'm tired or dizzy or can't see at night, maybe it's all in my head. Maybe I'm just imagining it's happening because I'm scared because of what happened to me. Nobody believes me. Doctors do but not the people around me. I feel like my life would be easier if the second event would just happen. Give me the diagnosis. Maybe then they'll take me seriously.
Instead, why not put all of your energy and attention on the Lottery. That way your effort and focus is on an outcome that has something positive and meaningful; like millions and millions of dollars.
Right now you are chasing after something that has no value. Even though chasing after the Lottery will produce absolutely nothing for you, you can at least occupy your thoughts with millions of dollars.
As far as other people go, and their opinions, you can only control what you say and/or do, and your own reactions. Don't waste your time worrying about what others are thinking, especially if they think you are making this stuff up. You don't have time for that and need to make your health the number one priority. Continue to follow up with the doctors, and please, please, please don't worry about the opinions of others. Remember, this is one of the "invisible diseases"..... others can't see it, and very rarely can relate to it.
(((HUGS))) to you, and post here anytime! :)
were all messed up or that my face was paralyzed, they took it seriously. My husband even admitted that in the days leading up to it he thought I was exagerrating. I know that the things most of you deal with on a daily basis (aside from mobility issues) are largely invisble and having a diagnosis doesn't make them any more visible. I try not to stress about it but I also have to advocate for myself even in the little things. If I'm fatigued and I need a nap and I need my husband to take care of the kids for a few hours I want him to know that I'm not just being lazy. Or if I take an FMLA day off work I want my boss to believe that I really am dealing with vertigo, not just skipping a day of work. I know it doesn't matter in the long run but the doubt is palpable. People think I'm a nut job.
Its apparent that the first reply has not experienced loss of vision or maybe their life is so boring with all their energy. I know personally MS has scared me, it has robbed me of the more enjoyable things in life, it has taken my energy that I use to spend on playing with my kids, enjoying my husband time, friends time, working, etc.
The fact is until it has taken it from us we don't know what we had. It then when we get frustrated, pissed off, spending our energy, money our time on going to drs getting test after test done only to hear its in our head. When really no one knows our body better then our selves. But hey that's why they call it practicing medicine right? Practice makes perfect.
You know something's wrong, something's not right. Continue searching until your satisfied with an answer. Its the only way you will get your energy back. You owe it to your self.
Christysms
Christysms
One last note, please, let's not attack one another here. Don't we get enough of that from those "healthy people"? Let's remember, we all have bad days or inadvertently say things that may offend.
Gentle hugs, Linda
let us no!!! hug!! ticky
I have been in your boat with the loss of eye sight, family and friends not supporting nor believing you. Its hurtful, stressful and everything else. Thank God.. we (including you) have a web site such as this one to come and vent, let our frustrations out, get advice, support and just to have someone listen (even if it thru typing) the knowing you can let it out somewhere is a satisfaction.
Please, please, please dont let someone discourage you from coming here and venting. Even tho you are letting your anger and frustrations out I can honestly say that is how some days I get thru my worse days. Just being able to read other post, learning how they deal with it or what I may expect sometime.
So tho it may be a bad thing to others or a pain to listen, look or read what others may post, to some of us it helps us. Its just sad that others are so unhappy with their own life or disappointed in decision they may have made, that they cant find anything else better to do then throw nasty, negative, hurtful things out about someone elses bad days.
We all have those bad days. We are ALL entitled to bitch about them!!! Please rest and try to have a great day/weekend.
Christysms
Having an "invisible" illness is tough. Its hard when people are constantly telling you "you look so great, you aren't sick!" when you feel like udder crap on the inside. The cycle of getting sick and getting better is exhausting at best but its even more challenging when others are trying to discount when you don't feel well but look good. Sometimes it feels like we HAVE to make an effort to look sick to be taken seriously. At least that's how I feel sometimes. I hope tomorrow is a better day for you.
And this is with a dx of ms. And while I hate it, it gives me a sense of validation and it tells me I'm not crazy. It's all in my head. Literally. But I'm not crazy. And it makes me feel crazy.
I hope my comment above was not misunderstood. I didn't want this thread to turn into a bashing session against RavenousWolf. I have seen this kind of thing happen in the past and run people off of our site when they need us the most. Let's ALL be considerate to one another, knowing that sometimes this disease causes us to snap at ones we care about when we really don't mean it, out of frustration or just having a bad day.
Love and Gentle hugs to all, Linda
My only regret is that I was not more forthright with my condition. You see I was involved in a very serious car accident and used that as an excuse for my gimpy foot drop walk. It wasn't until I filed for SSDI and came clean to my kids and family (husband always knew).
I am glad I was able to do what I could when younger with kids and family. I am now just a grandmother who walk with this wild looking "gimp stick" to my grand kids.
Hey to vent is good cause ms is I think the most frustrating, unpredictable, and crazy symptom disease there is and also a great "excuse for" disease, that when some things happen.
Find and join a ms support group. There you find great friends and understanding.
Hang in there and remember ms is the enemy and if you give in or let it have any part of you it wins. I treat it as such and fight it 24/7 however I can.