Multiple Sclerosis: Kerri on MS and feeling out of control

[LuvRuins62210]

re: 'Out of Control' Kerri, so sorry you had those dark, deep, 'moments'. But dear lady, thank you for your open, precise, detailed experiences. I've walked this M.S. journey for nearly 20 years. FInding your video and a few other's this evening spoke volumes. I'm in the midst of a debilitating relapse....and rather ticked off about it. But, found real solace in your words. Thankful to find real, kindred honesty. Very cool. Guess I'd better buck up. :o)

[kezzcass]

@LuvRuins62210 Thanks so much - wow this was over two years ago and I am humbled it spoke to your heart. I am sorry you are going through a relapse right now - I understand the anger and frustration. I hope you recover fully and quickly. Kerri :o)

[Snooglez]

There's this documentary called "Under my skin" It's about Lyme disease and there's a doctor who discovered that there's a connection between the Borrelia bacteria, MS, and Alzheimer's. 8 out of 10 brains who had Alzheimer's were test positive for the bacteria and they talked about MS in the same fashion. I thought it was a pretty interesting.

[bluejaysification]

There has been a major discovery by an italian scientist. Please Google Dr. Zamboni or The Liberation Treatment. People r saying this might be the cure!

[kezzcass]

I hope so - I have been looking into it too :)

[wachteropdemuur]

Thanks for this honest video. I recognize so much...

[karena321]

After 34 years, I still get that sensatiion periodically. Relax, it should go away. Try not to give in to MS. You can't go c-r-a-z-y, but just relax, & do the same things that you are doing to get better., and you will forget about it, unless you make yourself remember. Good luck, & Best Wishes!!

[cujojila01]

you know i have wrote you and told you my chest was numb now it went up my neck aswell, i decided why call my nero doc he didnt put me on steriods even though he says call if weakiness in my toe i think what the heck what about the neck a grow tired on docs ect now my eyes are getting more blurred i am really sad right now but kinda mad too, just because he gives these 15 minute exam's and i felt like a animal waiting for a shot. anway talk to ya latere much love michelle

[kezzcass]

Hi Michelle, I know it is frustrating going to Drs and not getting the answers you need. Especially when they don't connect that you are a 'person' and not just a 'disease.' Have you tried other doctors? Here in Aus we get a MS nurse we can call anytime (even for the smallest of things) and she brings the Neuro on board if she thinks something needs review. I find this a great support. Do you have that where your are? Kerri xo

[Miwetzel]

Hi Kerri,

thanks for your video - I'm also member of the MonSter club - and I do have similar feelings from time to time.

I can understand that 'out of control feeling' - and this is also what I don't need - and being not used to.

But - we never give up. My big dream is to go on a marathon run or walk - this is what I'm going to do in the future.

Will you join me? Don't know when it is going to happen - but it will.

all the best for you and take good care

Guido

[kezzcass]

Hi Guido, I used to do fun runs from time to time before my legs 'went' a couple of years ago. I am only now starting to think perhaps I could do something like that again! - with a great deal of training!!  When you go for that dream let me know - it would be encouraging to hear. Keep well, Kerri xo

[angelusa73]

Sorry you have to feel this way! I understand completely what you are going through.

Thank you for sharing your experience with such honesty and candor.

[kezzcass]

Thanks! I have been watching your videos too - they are very encouraging.

[ernahnotme]

Hi Kerri, I felt exactly the same when my physio/ot program ended (a few years ago), I wanted to continue on with the program but the coordinator said there is a waiting list for other people, I felt sad/upset for weeks and months, then I realised life goes on and to continue on with the exercise plan they set out for me. Hang in there Kerri, tomorrow is a new day, keep up with the program they gave you :)

[kezzcass]

Thanks Ivan, the next part of the story is really good as I was able to join a group of young women (20s & 30s) who all have various neuro conditions, we exercise with a physio for an hour then have coffee. It has been absolutely paramount to my recovery and a lovely spin off has been to make some new friends and have a laugh. I hope the group can continue for a while (although like you said a lot comes down to funding!). Wishing you the very best! :)

[dmplaura]

Oh definitely! While we're all unique, there are certain similarities. I think I actually read 2/3 of people with MS will experience L'Hermittes (to varying degrees).

The funniest comment I heard about this in particular was 1 woman telling me she dealt with L'Hermittes by headbanging in time to music. I just pictured it and burst into laughter :p

[kezzcass]

That is so funny - it would certainly give more intensity to the music!! I will have to give it a go! lol

[dmplaura]

L'Hermittes scared the CRUD out of me when it happened to me (before I was diagnosed). It eventually went away hun. I've had it come back once, but it was only brief. I do hope it goes away and stays away for you. Excellent video Kerri, you're such a strong woman. You've put into words what's so very hard to speak of about the disease.

[kezzcass]

Thanks Laura. Helps to hear that others have walked through these things before me and are ok.