Hi all! How many doctors did you have to go through until you were happy or as happy as you feel you're gonna get? We all know there's something wrong, and we want to know the answer to treat it, but when the diagnosis finally comes, some of us want to run away from it (me being one of those people).
MS has been suspected for many years, so I've known the treatments and it scares me to death. I keep thinking the doc could be wrong, the medication could harm me or I'll mess up doing it, something! Then I think maybe the MRI was wrong. For so many years I thought I'm finally gonna get treated, but when I went to a Neuro, I got treated horribly and the Neuro didn't agree with the radiologist. This happened several times, so nothing got done, and I continued to suffer. This went on since 2003, same thing, every time.
Now, here I am with a new brain MRI from last week that states (to make it short) "In the supratentorial white matter regions note is made of multiple subcortical and perventicular high T2 foci consistent with the clinical diagnosis of Multiple Sclerosis. This MRI was at a new imaging center and the radiologist didn't compare it with any prior study, so this makes it more real to me, and to be quite honest, I'm freaking out, scared to death, and at the same time, I'm incredibly angry.
I feel like my life is over and I have no family who gives a dang or wants to understand. It's all in my head, or it's all anxiety, I've heard it all! Mean people, mean doctors!
Everything else has been ruled out (or so I'm told), but I want somebody to question me to ask if some other test could have been forgotten. Am I alone in this? I can't be. I don't know. I've always wanted to know, even suspected, and now that it's here, I don't believe that God can give me something I can't handle. I'm overwhelmed! :(
Hi and welcome to our little corner of the web, you might like to read our health pages (window box on the right of your screen) just about everything is covered in the health pages, choosing a DMD , denile, MS mimics etc
I'm really sorry this has happened to you, it shouldn't happen like that but unfortunately your not the first and i'm sure you'll not be the last to go years and years before dx.
Feeling overwhelmed is a normal reaction to news like this, even when you totally expect it, it can still be overwhelming so please be kind to your self for a while!! It may feel like your alone but your a mum and grandma, and you've found us, so your really not alone in this.
We're international so basically there is someone on the forum 24hours a day, so if you ever need to vent, or ask a question no matter how silly you think it is, there will be someone here to help or try to help. :-)
Welcome to the forum. I'm going to do my best to step (I may pounce, lol) all over those fears for you and release you from this overwhelmingness (is that even a word, haha)
I went to one doc who dx'd MS, and a 2nd who confirmed. I still didn't believe so much.
It's been 5 years and from time-to-time I still wonder hmmmmm is something else at play or is it MS. BUT, and this is a big but - delaying treatment may put you smack into a situation in your future where meds won't work. See what I'm saying? So, that's advantage #1
Advantage #2 - while there was no comparison, you can get the imaging from the past, bring it to them, and they will compare. Futher relieving you that they were compared :) It's to your and your doctors benefit to know if there are changes in your CNS.
Advantage #3 - disease modifiers will not kill you. But, your fears are scaring you to death you mention. Least with meds you can feel some control over this beast. And, control over these fears.
Advantage #4 - WE totally understand. Many in your world will not, so no sense exhausing yourself w/them and their lack of compassion to care. The good friends and fam will reveal themselves overtime.
Advantage #5 - Docs didn't label this as anxiety, or all in your head. They gave it a name, you just need to believe it, treat it, and keep on keeping on.
We care :) Your not alone anymore!
Welcome to the forum. And, we hope to help :)
Does your current neuro concur with this recent MRI? I am in the same spot as you have been: my MRI reads the same as your current one, but the neuro and radiologist don't agree. This must be very scary for you; hang in there and realize that now you can begin treatment and start feeling better. Wishing you the best,
Finding out definitively that you have MS is both good and bad news. No one wants to have a disease than cannot be cured (at least not yet). That's the bad news.
The good news is that you can actively combat MS, not that you know what you're fighting. There are lots of good drugs and more on the way. MS is not a death sentence! It's a pain in the A*** but it's not a death sentence :-)
As you decide with whom to share this new information you will learn more about who your friends really are. I've been blown away by the support I've received from all aspects of my life.
So, I'm sorry and congratulations :-) Ask lots of questions.
I went to 2 docs before I got a dx. I was dx in July of last year. I was fine until I started experiencing major sx that lead me into a full on relapse.
When that happened, I went to the ER, and saw 3 more different neuros because the relapse was so surreal. It wasn't until I saw a neuro at the Cleveland Clinic that I believed 100% that I have MS.
I have some lingering sx from the relapse that I don't think will be going away. Two things that have really helped me is seeing chiropractor and a counsellor. I would see someone that doesn't push meds, because I know a lot of us are on so many meds already.
I'm also going to start juicing in the am because since my relapse I don't have an appetite until dinner.
It's ok to be mad, or sad, or even feel relief. There are a lot of good people on this form that will help you in your darkest hour.
Hi, Toxicgem! Welcome! I know all of it seems surreal, sometimes, but it's not a death sentence, or anything. Go on with your fun activities, pace yourself if you get tired, and take your DMD. I'm all for living well with this MeSsy disease, and I'll keep having fun as long as I can. I have good days and bad days, and there's so much I CAN do!
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