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A MyMSTeam Member asked a question 💭
Owasso, OK

I haven't been diagnosed yet, but on paper (to the VA)the nearologist says it is ms. As of right now I have no care plan, waiting to see eye doctor in May. My cognitive issues seem to be horrible. It's like I know it sounds wrong when I'm talking, and I have to really think about what someone is saying or what I'm seeing. It's like it just takes longer to click. I have been trying to find a timeline of decline, but it seems most people really are affected atleast 10 years after diagnosis. I'm… read more

April 2, 2019 (edited)
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A MyMSTeam Member

Hi Cope: I did not even know I had MS until I got attacked my a Hurricane Katrina individual who was hotel hopping. When I finally was diagnosed, he said I probably had had it for most of my life. Like Jaclyn said, we've all been where you are now. My one piece of advice would to go see a neurologist who deals specifically with MS and let him do a spinal tap. That will tell you for sure whether you have MS. That same neurologist can sit with you and figure out a care plan. I know one thing that helped me was after I got diagnosed, I spent 2 weeks at TIRR in Houston which is one of the best rehab hospitals around. They helped me learn more about MS, deal with the physical and emotional changes going on and showed me ways to do everyday things around the house or just getting dressed. Also check to see if there is an MS office anywhere in the state where you live. They have lots of great help to offer and using the MS Society, does not cost you anything, I've made a lot of great friends through them. They can help you with finding doctors, getting assistive devices to help you and give you information to help you in the daily struggle of living with this horrible disease.

April 2, 2019
A MyMSTeam Member

When I was first dx that I had ms and I was dealing with the pain issues my office was 63 miles away from my home. One morning I had double vision while driving to work. This continued for a week so I went to my optometrist. He examined me and prescribed new glasses that would merge the two images. The following week with my neurologist he diagnosed the issue as an ms exasperation. A course of oral prednisone merged the images.

The point from all of this is that you need to get with your neurologist and be specific to the neurological changes that you are experiencing.

April 2, 2019
A MyMSTeam Member

I’m so sorry. We have all been where you are right now not really understanding the disease or how it will affect us. Everyone is different for sure. Just know that you do have support and can ask anything on here. 💜

April 2, 2019
A MyMSTeam Member

Remember, you're fine. You're going to be fine too.
That might not be answers from doctors, friends or even you but I have faith in you and know you'll be fine. I think you hitched the horse up to the trailer backwards a bit. Wait for the diagnosis. They tested me for a range of diseases before landing on MS. I know this part is hard but wait for your medical team to "catch-up to you " with an MS diagnosis. I think when you start exploring MS symptom progression you'll find there are no time periods over which you can count on MS reaching a certain cognitive or physical symptom level. Try to relish in this MS fun fact, you are officially a medical mystery and that will either scare you or it will excite you. (both for me) I ignored obvious symptoms for more than 10 years (I thought about it and am trying out for a Monday morning quarterback) so I think we will be for more than 10 years but that's just me and MS treats everyone differently.

April 2, 2019
A MyMSTeam Member

Totally agree with you Ender. Had the double vision too and it stinks. Could not even stand riding in the car cause of it. Had surgery to correct mine and IV steroids. Still have it once in a while, but it goes away when I rest my eyes.

April 2, 2019

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