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stumbler
6 months ago

@melmel1 , OK, so not Harrow. So, which part of London are you in?


stumbler
6 months ago

@melmel1 , you have this one in Walthamstow :-

https://www.msaction.org.uk/


melmel1
6 months ago

@stumbler I would go to Harrow if there was no other ones but it’s far I am in south east London X


melmel1
6 months ago

@stumbler thank you x


stumbler
6 months ago

@melmel1 , Swanley any good?

http://www.swanleytherapycentre.org/

then there’s Guildford, which I know isn’t London :-

http://www.samsoncentre.org.uk/


melmel1
6 months ago

@stumbler think there maybe fast trains to Guildford frm London, the Walthamstow one u showed me looks interesting , they do massage too πŸ˜€ x


dramaqueen
6 months ago

used to go to walthamstow only through blackwall tunnel and on a13 about 45 min drive. I live Lewisham. Let me know how you get on havent been for 25yrs.


melmel1
6 months ago

@dramaqueen your close to me, how did you find the oxygen therapy, how are you and how is ur ms treating you X


dramaqueen
6 months ago

28 YRS Progessive not great walk with a walker not far. Just got electric wheelchair but idrive. Go Eltham
leisure centre to the lions club a hydro pool to move in water anyone with permanent disability can use this facility. I attend Downham leisure centre for gym and seated exercise to keep what movement i have. This is for ms. I was pretty young when i attended walthamstow to be honest i felt a little overwhelmed as the people that attended were probably how i am now and it upset me. I dont know about the therapy i found it wasnt for me but believe we are all different. Best wishes mel you still look young and beautiful. If you need any info let me know.


melmel1
6 months ago

@dramaqueen Aww thank for the kind words, im trying to stay strong even though hard sometimes, I was told I have ms by a general neurologist now the ms specialist wants further tests eye evoked test lumber puncture and another mri, I know they have to be certain but the waiting is reall torture esp when you have new symptoms thank god there seeing me as a day case end of the month and all the tests will be in one day,xx


grandma
6 months ago

@melmel1 it’s good that youre trying everything early on, prevention is better than cure as they say so anything you can do to prevent deterioration is good. Up and at em girlπŸ‘βœŒπŸΌπŸ˜


melmel1
6 months ago

@grandma thank you hanging on in there x


dramaqueen
6 months ago

Well lets hope they were wrong. I was diagnosed with an eye test with electrodes on my head i hope thats enough. I never had a lumber punch ask around as this is supposed to be very uncomfortable.


stumbler
6 months ago

@melmel1 , I agree with @dramaqueen . See if you can get the MRI and visual Evoked Potentials (VEP) before they consider the Lumber Puncture.

The MRI and VEP may give enough information to allow a diagnosis, without having to bother with the Lumber Puncture.


melmel1
6 months ago

@dramaqueen I’m scared now lol X

@stumbler I would rather not do the LP did you ever have the LP and VEP x


dramaqueen
6 months ago

The eye test should be enough. I think a lumbar punch gives you a headache like no other. So i’m told. Its your body you decide their not in control you are. Sick of Doctor knows best approach. When you get older you realise. Dont be controlled ask for an MRI instead, as stumbler suggested. Dont worry just be assertive.


stumbler
6 months ago

@melmel1 , I’ve had the Lumber Puncture twice and the VEP once.

I tried to avoid the second Lumber Puncture, but the Neuro insisted it was required. This second one was a piece of cake.

Have a read through of the McDonald criteria for diagnosing MS :-

https://www.mstrust.org.uk/a-z/mcdonald-criteria

and you can see whether the Lumber Puncture is required.


melmel1
6 months ago

@stumbler thank you I had a lil read tried to understand it, I wanted to ask with progressive ms does that mean the inflammatory stage is over and you don’t get new lesions or am I wrong, thank you x


stumbler
6 months ago

@melmel1 , when you transition to progressive, you cease to have periods of recovery, so it’s just a slow decline…………


paige_wheeler
6 months ago

I’m in the US and have never heard of this. What is it and how does it help?


stumbler
6 months ago

dramaqueen
5 months ago

Hello mel hope your ok have you sought oxygen therapy yet. I deleted the long list of conversations i was having with the girl from ireland and ive lost her from my list you wished to share cake. Can you explain as i can’t remember her details i didn’t delete her deliberately?
Can we reconnect. Best wishes sandra.x


melmel1
5 months ago

@dramaqueen Hi darling I’ve had a right day of it had a eye evoked test MRI and lumber puncture today, the MRI had a panick attack in it when they started putting on this like cool air blowing on my mouth and nose couldn’t breathe was awful, and then the lumber puncture was not successful as they couldn’t get the fluid from the spine or should I say could not find it, it was painful too, how are you doing these days lovely to hear from you, hope you have had a better day then me lol , was it @jane_watts ? Xx


dramaqueen
5 months ago

mel the same happened when they tried to do lumbar punch on me but they keep trying. good for you they couldn’t do it. I’ve had so many MRI scans as I have been on research programs for ms. Can you believe i actually nodded off after a 45 min scan? Well, you have had a busy day. WAS this at uclh.?Have a better day tomorrow the sun should still be shining. I’ve been seated exercise and gym at Downham Leisure center. You could go if you’re not busy MS pay some we pay 2.70 another young black girl goes shes in her twenties the rest of us are about 45 upwards.


dramaqueen
5 months ago

Tomorrow will be a better day Sleep well Sandrax


melmel1
5 months ago

@dramaqueen hey Hun can you beleive I was in the MRI for a hour and half was supposed to be a hour but cause of when I was panicking they had to redo some of the MRI as I was moving, I have to do another lumber puncture at some point with a X-ray to guide them where to see the fluid in spine, I’m starting healthy eating tommorow I’ve put on so much weight and had enough and going to go back to exercising all this comfort eating is doing me no good, it was kings college , are you exercising often? X


watsoncraig
5 months ago

Did a trial of hyperbaric and there was an improvement (in speech anyway) but they recommended a course if 15 sessions over 3 weeks and that amount of time off is an issue


stumbler
5 months ago

@watsoncraig , the intensive course is required to get your saturation levels increased. Then you would just require weekly top-ups.


dramaqueen
5 months ago

From the scan and Eye thingy they should have enough info why the need for more. Question them. Remember it’s your body. Poor you so long in the scanner.
I only go on a few machines at the gym as some are hard to access with agility probs and dead leg. haaaaaaaaa
We then move to a room and do seated exercise and band work. I go on a Tuesday midday only once a week. I wouldn’t be there if i didn’t have MS. I have to keep moving and socialize.
I am trying to lose weight looking into insulin resistance. Not a diabetic yet but if i dont sort this belly it is in the post.Sandrax


melmel1
5 months ago

@dramaqueen I called the secetary of the neurologist today and asked her to ask him if we can leave the lumber puncture it was awful, I know what you mean about keeping moving and socialising X


dramaqueen
5 months ago

Good for you.

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