Last reply 8 months ago
Finally diagnosed,but is it a good thing

I had my first problems 4 or 5 years ago with numbness and tingling on most arm and also having the ‘hug’ and numbness to the front of my legs. Diagnosed with delamination disease caused by MS but they needed to see progression before diagnosing MS.
My first lapse was driven by extreme stresa
Since then and it has been fine. My left hand has lost 40% of feeling to half of it but I can live with that (even being left handed!). If I fall ill I get some of the nerve damage again creeping in but nothing major… I didn’t consider it a problem really and it was something in the back ground which i never thought about.
However, recently i have again been under intense stress and as a result I have been having dizzy spells and feelings of vertigo. Again all manageable, stop and take a breather no big problem either. I have also been having some weakness at the knees when doing vigorous exercise, is long walks, bike rides etc. Together with my dizziness I feel a little unbalanced at times. Although mountain biking I am a little more wobbly, it’s just frustrating more than anything.
I saw the neurologist and am booked for another MRI in a week or so but my symptoms were as such that he diagnosed me with having MS. I have not really taken it in and nor will I. I will carry on doing what I am doing until i cant
Before being diagnosed, I knew it was a possibility as back then progression was needed for a diagnosis. Things have changed since. The theory to diagnose as soon as possible so medication can be taken to limit the damage caused by the lapses on the long term.
I am feeling different know, as I have a diagnosis , short term I am more accepting of the symptoms. I dont want to be, I want to carry on in my mindset of managing it as I go on so I can lead a normal life… it has worked so far. The consultant said last week after the tests etc “James, considering everything, you are managing really well”. I didn’t think I was that bad to be honest!!

Reading on here I am lucky, I only get weakness, dizziness and weak knees but not all the time. I gym 2 -3 times a week and I am active too. I will bounce back i am sure but just kind of managing things at the moment. I dont even know if i am progressive or relapsing, i think the latter as stress seems to be the driver.
In my mind the fitter I am, the less it will impact on me. Weak knees when your legs are not strong anyway will limit your life, having weak knees when your legs are strong will help you stay active – that’s the theory anyway.

I hope you dont mind, I had to share as still coming to terms with it, or not maybe?

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1 year ago

@cooper , it’s good to write it all down. It doesn’t change anything, but it does help “put it in a box”!

Be careful about being in denial. MS doesn’t like to be ignored or disrespected and will be very scathing when it decides to bite your bum. Rather than ignore it and carry on regardless, you need to consider ways where you and your MS can live in harmony together.

Yes, I agree with your “use it or lose it” approach, but be wary that your “new” body is more intolerant of a rise in core body temperature. This will exacerbate your MS symptoms until you cool back down.

By the way, all MS is progressive. Relapsing/Remitting MS (RRMS) is just characterised by periods of experiencing new symptoms, then recovering from them. However, the recovery is never quite 100%.

1 year ago

Thanks Stumbler for the advice. I shall bear that in mind. I have not really read into it too much and i have denied any drugs historically too. I will take something prescribed moving forward to limit any damage. My permanently partial numb hand is testament to not taking any medication.At the moment I cant disregard it as I seem to be dizzy most of the time when moving.
I do need to remain positive, therefore will tackle things when they come up. Maybe I should also read further into steps to take to limit lapses etc?

1 year ago

Hi welcome to the club.
Keeping fit and active will help, but don’t push yourself to hard.
You wouldn’t run your car flat out all the time, when it’s got a fault.
Listen to what your body tells you.
Don’t push it to hard, it will throw the towel in when it gets driven to hard.
Been there, seen that and suffered for it.
Which really made things a lot worse.
Just a friendly heads up…
One last bit of advice avoid stress as much as you can…easier said than done I know but has to be said.
Happy trails.

1 year ago

Thanks @highlander for the advice.

So far I have been lucky with my experience and of course want to leave it as such.
I wont burn myself out, I limit myself to about 1.5 hours at the gym and most of it is not cv. Of course at the start by using the stepper for knee strength for 8 or 10 mins, then its resistance machines and free weights, so not too much.
If I feel I am really pushing it i shall stop

1 year ago

From my experience, and from all that I have read and I do read a lot, it’s important to go on MS medication as soon as possible. Waiting is not a good idea.

1 year ago

Thanks @itasara, I am waiting for my MRI then referral to the MS specialist so I can get a prescription.
As soon as I have one i will be taking it

8 months ago

@cooper I just recommended the documentary on Netflix, The Game Changer.” How much meat is in your diet? I have cut down quite a bit but not entirely and I do eat some dairy like eggs and also chicken and fish. If this documentary is true it could make a big difference to cut down more and even all eventually.

8 months ago

its good tjat uou got officially diagnosed
o feltS sinve early cjildhood daignosed 2004 stopped treatments first three yrs took them back 3 or 4 yrs stopped again 8 yts took it again last year buy stronger type
im still fine if anyone looks but active inside

8 months ago

I was diagnosed in 2005 and put on a DMT (copaxone) that by today’s standards is not very effective. While I had occasional flare-ups that were knocked back with massive steroid infusions I really wasn’t impacted much by MS.

I always felt that the diagnosis of MS affected my life more than the disease itself. The maintaining of insurance and possibly employment was more troubling than any physical impact of the disease.

Now I feel it creeping up on me and two good Neurologist groups believe I am transitioning to SPMS (as like 80% of remitting MS people do) so I have been moved over to Ocrevus.

There are some that believe a more aggressive stance against MS should be taken and a highly effective drug used on the front line. If you search up Aaron Boster on you tube you will see him promote that position. That is fine. I may have done that if effective DMTs were available back when I was diagnosed ;-0

Living by looking in the rear-view mirror is not that effective…I encourage you to face forward honestly with your blinders off and go for it. Push every day but know your personal limits so as to not antagonize the beast. We learn where that line is. To see what a person can do and how they can fight I try to keep on top of the MS is BS guy – Dave Bexfield and the FU MS podcasts. I learn and do all I can. I can’t afford denial any longer- maybe you can’t either. Good luck- keep an eye on this forum as well πŸ˜‰

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