Still new to this disease: New to the site... - My MSAA Community

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Still new to this disease

Gnugirl profile image
7 Replies

New to the site. Dx Dec of 2015 with RRMS. Still trying to navigate this 'new normal. Having a tough time with the pain and crazy symptoms. Feeling good and then within minutes knocked down. I say it is a good day when I can get dressed without falling over. Reading up on CBD oil for pain management, not sure of it yet, not wanting narcotics for anything. Looking forward to reading others stories and learning new ways to deal with this.

7 Replies
Jesmcd2 profile image

Hi Gnugirl and welcome! Sorry about the navigation of your MS. It's a roller coaster ride for sure, and no 2 rides are ever really the same. 😕

But the good news is, we get it! We all have it! Not like it's a good thing, but we can relate! 😊 And help eachother.

Like you said, feeling fine one min and not the next is a hard one to handle!



Gnugirl profile image
Gnugirl in reply to Jesmcd2


Fancy1959 profile image

Gnugirl, it's Fancy1959. First and foremost I would like to welcome you to our family. You have found an incredible chat room and we promise that it will always be a safe place to come and ask questions, voice concerns, or simply speak to others who truly understand what you're going through.

The best thing to do is to not let this Beast beat you. We are as humans extremely adaptive and we must learn to beat the Beast by adapting how we confront it. I never fall over when I dress because I dress sitting down. That's the best example I can give you but it goes for everything I do. Do your research on CBD oil and see if it sounds right for you. More and more people are using it for anxiety control, pain management, stress release, an aid for sleeping, and more. It was recommended to me by both my neurologist office and my family doctor. Both assured me it was not the least bit addictive and had all narcotic elements in it removed as it is marketed as CB oil. I look forward to talking to you more. Please take care until we speak again and please remember that together we are stronger! Fancy.

Gnugirl profile image
Gnugirl in reply to Fancy1959

Fancy1959, Thanks for the welcome!

I am reading up on CBD as much as I can before making a purchase. I will be talking to my Neuro as well. I am from PA and had been thinking about applying for medical marijuana then found out I would have to give up my right to own the guns I have and never be able to purchase anymore. That was a deal breaker for me. So CBD education is my focus now. I refuse to take narcotics for pain but need something.

I am happy to be here. I have a very wonderful family that give me GREAT support, but it is nice to be among those who truly understand.

Wishing you a HAPPY day,


greaterexp profile image

Welcome to a great, supportive group! We understand so well what you’re feeling.

There have been many posts about cannabinoid products with either CBD or THC, or both. You may try typing in any of those words in the “Search My MSAA” box in the upper right of the page to find all posts related to this topic.

Gnugirl profile image
Gnugirl in reply to greaterexp

Thanks for the welcome and the info. It is good to be here with others that 'get it'. My family is great and supportive, but sometimes it is just nice to be with those going through this also.

Making the best of what I've been given!


Lilith08 profile image

Welcome! I’m not far behind—Dx April ‘16 with RRMS. Am fortunate, for now at least, that my physical state has not been affected too much; spasticity in my arms made it difficult for a while, though, as it kept me from taking care of essentials like cooking and keeping house. A combination of meds (Baclofen), PT, and maybe dumb luck has helped an awful lot.

My new normal has been coming to terms with cognitive dysfunction. In one sense, it’s been a relief to discover that there was a medical reason for the increasing difficulties I was having over the past decade-plus with my work—to the point where I thought that, at 47, I must have been in early stages of dementia. After neuropsychological testing, attempts at cognitive retraining, and continued struggles, I decided perhaps it was time to check in with my neurologist (had CIS in 2014) and that’s when I received my diagnosis.

I’m now on long-term disability for just over a year and still struggling psychologically with that. That’s the flip side of the relief of getting an answer. At least I’m no longer spinning my wheels at a job I can longer do. The psychological effects of that were far more damaging than where I am now.

Well, that was a long story! Sorry...

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