Recently diagnosed in the last few years? - My MSAA Community

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Recently diagnosed in the last few years?

Kokomo26 profile image
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I was diagnosed in July 2014 and have gained support, understanding and information from others who have been recently diagnosed. I had intense vertigo, facial twitching and fatigue like I've never experienced that brought me in for diagnosis. I thought I might have a brain tumor. Now two years later I have a bunch of symptoms, but all mild to moderate enough to live with without need for medication (other than my Copaxone). The rundown of my symptoms: stiffness and weakness in my arms and legs; numbness and tingling in my face and limbs; heat sensitivity; fatigue; some cognitive difficulties. Changes I've made that I believe have made a difference include an improved diet (a smoothly in the morning; more raw salads and veggies; more fish and less meat, low salt); supplements like vitamin D3, tumeric, fish oil, B12; daily exercise and stretching; and a good attitude ☺️.

Questions I've been grappling with:

I understand many people make near full recovery from attacks, but I seem to have a bunch of mild to moderate symptoms that persist. Is that your experience?

What do you do that helps you manage your MS? What works for you?

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Kokomo26
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normwithms profile image
normwithms

Hello Kokomo26 I was diagnosed in 2008 but I have had most of my symptoms since the early 70s. I to thought I had a brain tumor that would take care of it's self one way or another. Since I was diagnosed, I have been on Copaxone and have tried the MS diet and the same supplements you are using. I was in construction and I had a few large gardens so the exercise was a given. I have read of people making complete recoveries but almost all have been tied to a product or surgery that costs a lot of money. It looks to me you are doing all the right things especially the good attitude. Take everything the doctors tell you with a grain of salt. Most of there pills, the side effects give you more trouble than they help. Do not let your body get warm. Keep cool emotionally as well as physically. Aspirin, a cool wet towel on my neck and a nap seem to be my best cures. The MS I have is a slow creeper. I have never had a relapse or any long term events just small incremental decline and quick temporary odd things. I can no longer work construction so I work at a desk job. I walk with a walker or crutches depending on terrain. I can still drive, but only short trips. The best way I know how to manage MS is to live your life the best way you can and ignore or swear at it when it gets in the way.

PS. Make a good life and be happy, MS hates that.

Kokomo26 profile image
Kokomo26 in reply to normwithms

Thank you normwithms! Your wise words of advice made me smile, especially you PS.

It's interesting that in all the years you've been living with MS you've never had a relapse, but "small incremental decline." Is this considered a progressive form of MS? Forgive me for asking... I'm still learning what all these terms mean in practical life terms. I haven't had a relapse since my diagnosis in 2014, but I feel like I have more numbness, tingling, and weakness in more of my body; and much more cramping. Is this "symptom creep"?

Thank you again for the wisdom.

normwithms profile image
normwithms in reply to Kokomo26

Hello kokomo26 I wish I could help on an explanation but I can only tell you what has happened to me. In 2008 I had a back problem while digging in the garden. I thought I had a slipped disc because it knocked me to my knees and would not let me standup straight. I laid on a hard floor to see if I could put my spine back in place but it did not work. I tried a few home remedies to no avail. I waited a few days but the pain did not go away. I finally went to the Doctor who sent me to another Doctor. He stuck electric pins in my legs and kept asking if I could feel them. I have not been able to feel a lot of pain in my arms and legs for many years. I am an electrician and have been shocked and cut for almost 40 years. I just thought my nerves had died or gotten use to it. That Doctor who stuck me with pins sent me to another Doctor a Neurologist who told me I had MS. The Neurologist gave me a course of steroids and the back problem went away. I began going to a MS Neurologist who started me on Copaxone after a MRI. That was 8 years ago. Since then the numbness, and tingling have started in my right leg and move to my left leg and on to my hands. Last year the MS Neurologist changed the diagnosis to Secondary Progressive. I can tell you I have had the foot drag and the cramp since I was in High School that is why didn't like track.

Sorry for the long explanation but I have had things happen to my body all my life that I just write off to some stupid thing I did or a brain tumor or what ever. MS to me is just a name for what I have been cussing at for the last 40 years.

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