My new neuro called this morning....his assistant called really. And she read me his notes regarding my MRI's. He agrees and confirms the diagnosis of MS. So funny how almost 3.5 years after my original Dx that I am fairly shaken by this confirmation. I was almost certain that I had to have been misdiagnosed. And then when this new neuro seemed very hesitant to agree to an MS dx I was really becoming certain I was misdiagnosed. Nope. I'm here to stay y'all, lol. So I still have my ophthalmology testing on the 5th and then I meet with his assistant on the 19th. I have to say I am relieved that I have dodged having to get the lumbar puncture! I think....knock on wood, quick!
I guess it's really time to start accepting and move forward. Happy Hump Day everybody!
XOXO's, Cassie
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cassielynn71
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Yes ma'am! Now that I've had a few hours for it to "re"sink in, I'm going to be okay. I've got all of y'all, a great family, and a few close friends for love & support. And honestly things could always be sooooo much worse!
hope you can learn to realize this is good for you ...now you will start with the fight of it ...don't let it stop your normal life for it sounds like you have been good at it already....love and much happiness is in the future ....have a great day and read some jokes and laugh ...smile it is not the end...
At least, now you can move forward. Having a proper DX is important and can remove a lot of uncertainty. That alone can be positive. You can do MS, there's a lot of good treatment that hopefully will work for you.
Yes. Exactly. And I've been on Copaxone for almost 3.5 years and I've been stable for 3 of them, w/ the exception of a bout with Optic Neuritis while on Ampyra. Got off of the Ampyra and I've been "okay" ever since. All is well in my world again
Glad you got a definitive answer finally. Now you can start getting properly treated for it. As for the spinal tap, it depends on where you're getting it done. I had one done in Italy without local anesthesia... That costs money you know so don't be a baby...and with extremely rude doctor and nurses. It took me over a week to recover from that. Then a repeat... the American way... with local anesthesia and a very good neurologist who explained everything before she started, while in progress, and what to expect afterwards. It took a day and a half to recover from that.
An answer is reassuring. To my mind, knowing is better than not knowing because with knowledge, we can move forward. You lived with uncertainty and conflicting opinions for a long time, now that burden is lifted. And that's great news!
Wow, I remember those days! Still hoping they got it wrong. It couldn't be, not me? That was a very long time ago. It took me a couple years I guess to accept it enough to start DMT's. Yes, you probably should. You have to do everything you can. But, here's something that really doesn't affect anything else. Look into diet and M.S., hint, eliminate all processed foods typically full of things added that never occur in nature. This is not a new thing, and even some doctors specializing in M.S. believe in it, even if they don't preach it. I definitely do. So,...your DMT of choice AND lifestyle change regarding what you put in your mouth. The pills, shots, or infusions as hard as they are, will be easier than diet changes. BUT, DMT's did not do nearly as well as diet changes for me, and others. It's been over half a decade since my last relapse, and I'm slowly dropping "M.S. battle wounds", and slowly getting better every day!
Life goes on. Time to start your battle! Everyone's got one type or another battle of their own. M.S. is hard, but doable. Others things out there, yeah some of those really scare me. This you CAN do, as hard as it may be. We're here to help.
I am so glad to read others who want to try something besides medication. I agree this can work and for me it has so far. I tried medication for a couple years but have not used any for the past 5. Diagnosed in 2012. I just got a repeat MRI which shows nothing new in my brain but a new plaque in my spine. I am still reluctant to medicate.
Lol, I know right?! I've been mostly a voyeur on here for a few years now (4), even before my original dx. I'd had blood tests & symptomology narrowing it down to Fibro, MS, & Lupus (so I had joined all 3 groups). Then I had that defining moment in my health history when the entire right side of my body went "numb" along w/ a 7 month long headache. Bam! Welcome to MS. I still have internal issues that are, at present, unanswered...but let me deal with one Auto Immune disease at a time for now, thank you!
I am thankful to have a place full of warm and welcoming people to run to when I need to vent, research, laugh, empathize, or just see what everyone is up to
For me the spinal tap was the final confirmation. Once the puncture occurred, it was pure, raw, unadulterated pain, but after a minute I breathed and the pain was gone. Afterwards they tell you to drink plenty of caffeine as it reduces the chance of leaks at the puncture site. Sorry, I gave up sugar coating comments a long time ago
I've had 2 spinal taps and my experience was the fear of it was much worse than the actual event! After the numbing all I felt was pressure and then it was "perfect posture" until I got home to bed, laying straight on my back with my pillow punched down.
I was the same way. When I received the confirming second opinion of MS, it still hit me like of ton of bricks. All the original emotions came rushing back through me and I had to work through it all over again. But, it was reassuring to know I was doing things correctly, such as I started the DMT upon initial diagnosis. Keep on being the best you!
Yes, exactly! I was going through a difficult loss the SAME day I got my original dx. So I kind of went on auto pilot and just did everything I was told to do while I was grieving and trying to push through my days as it was. I really think that is why I never fully accepted this whole MS thing. So getting this 2nd confirmation truly hit home. Like it's REAL now. Even though I've been walking w/ AFO's for 2 yrs and on Copaxone and other meds for almost 4, lol. The brain and how it works is a true mystery!
As bad as it is to be dx with MS at least you know what you are dealing with and can treat it accordingly. Glad to see you are on a DMT. Copaxone worked very well for me until a couple of years ago when the injections were almost unbearable. I had been on it for 10 years. I am now on Ocrevus which is working wonderfully, that is when the nurses can get the IV in. I pray you stay stable.
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