Hi everyone i have just had a ms diagnosis 17th fed 23 . Symroms i am getting are fatigue numbness in hands and in full left side . Muscle spasms . Mobility. problems (walking)and balance poor , lesions on brain told it was at stage 2 . Now i have been been referred to the douglas grant rehab ctr in Irvine Ayrshire . Has anyone else had dealings with this rehab ctr ? Could you please offer me any advice 5hanks John
I can’t help you with information about the rehab centre, but just wanted to welcome you to the forum. I’m sure they will be of help to you. Your local MS group may be able to tell you more about them.
Hi ziola
Thanks you very much for your kind words and advice its much app reciated . I feel since i have received my diagnosis i feel confused and a little scared not just for myself but also for my.wife she does not keep well and has some big health conditions and i dont want her to to get worse trying ro help me , I have my 1st appointment with the rehab.ctr on 28th of this month and i should have more information so i.just need to think positive . Thanks again John
Hi John, welcome to the forum. It’s a great place for any help, concerns you have. I was diagnosed June last year, similar symptoms to you. Right side weakness, mobility problems, balance and I have foot drop. I go to a rehab clinic every 2-3 weeks, first appointment we went through all my symptoms, how long I have had ms, medication I take. From there the physio gives me exercises to work on and go back every few weeks to see how I am doing and get different exercises. Hope that is of some help, Angie
Hi John
Just to say hello. I have never heard of stage 2 lesions? What does that mean?
Hi angie thanks for your reply and advice its much appreciated , i was a bit worried about this rehab app but you have helped me by explaint more . Can i please ask you.if you have mobility issues also ? as i find this the most concering symtom and it scares me John
Hi i asked my neuroligist if my ms was in early stages as it didint feel that way ( thanks dr tiagi ). Hs reply was stage 2 and that i have had ms linger than 1st thought as an earlier scan i had for dementia was ruled out . I assume it was his lousy way of explaining both scans and lumber punchure showed it was bad my symtoms are numbness . In full body . Probs with bladder bowel . Fatique. And poor balance . Thanks for pointing this out as i could’nt find anything about stage 2 either .
Hi John, yes I wouldn’t worry about the rehab. The physiotherapist I see is very helpful and doesn’t push me to much. I have a mobility issue as my right leg has a constant limp, doesn’t help I have foot drop either. I have tingling in my right hand and toes. Balance is an issue when I get really tired, wouldn’t take much for me to fall over(which I have done a few times)
The positive side of this is determination, I work in a nursing home 3 days a week. I love my job and I’m probably not doing myself any favours as I do get really tired physically as well as emotionally but I won’t give it up for anything. You will find a way to accept ms if for a better word as we have to really, take care. Angie
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Hi Angie your symtoms are similar to my own and your advice is very appreciated . Take care best wishes John
Hi i beleive my neuroligist just has a not so good way of explaining things (thanks dr tiagi) . I asked him if it was at early thange and he said 2nd stage as scan showed 3 lesions on brain and he then reffered me to a rehab ctr in irvine . I have fatuigue . Numbness full body but more on right side and especially both hands . My balance and mobility is poor . And bowel and bladder probs . Starting.now to get headaches and have had memory probs for about 4 years I think based on that he came to conclusion it was worse then 1st expected
Hi thanks for letting me know about stage 2 ms .I was trying to get more info on it with no Joy. I beleive that my Neuroligist is not very good at explaining it as when i asked if it was early stages that was his reply . I have 3 lesions on my brain from a previous scan for dementia so i have had this ms for more than 3 years maybe thats explains it and that my symtoms are getting worse thanks (dr tiagi )for confushion. Cheers John
Hi Johno1605
I was finally diagnosed in December last year, with similar symptoms - fatigue, balance, bladder, walking, numbess/pain all on the left hand side. My diagnosis is progressive MS, which basically means MS is still doing its thing. Most people start off with Relapsing Remitting MS, a symptom appears, gradually gets better or goes away completely, there’s a period of being ok then something else comes along and gets better etc. People with RRMS can go on to develop Secondary Progressive MS which means that symptoms arrive, but don’t go away and after a while, another symptom joins in, and so on. Which is, I think where you find yourself.
Having an appointment at a rehab centre is great - I attend the Brightwell Centre in Bristol for oxygen therapy once a week, they also have fully trained physios who work with people with MS and other neurological conditions every day. Others have described the initial assessment appointment - which is a way of getting a base line for you, and to evaluate what exercises/therapies would be best for you.
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Hi Theresa B
Thankb you for explaning my concerns in a better way .its so good to hear from someone who has more insight into same experiences as myself and for taking the time to share with me . You are so kind and its very appreciated thanks . It sounds like you are facing this head on and making progress and getting support you need can i.please ask you more information about oxygen therepy and how you are feeling with this . I hope it helps you. John
Hi Johno1605
The oxygen I have is in a Type 2 hyperbaric chamber, which seats 7 at full capacity, each person wears an oxygen mask with an oxygen intake and outlet pipe on either side, the outlet is at negative pressure and there is a valve which stops exhaled air coming back into the mask.
Once seated, with masks on and attached to the pipes, the door to the chamber is closed, and it is pressurised. There are different pressures as not everyone can take the same amount of pressure. There is a saturation period where you have a week at each of the 3 pressures, starting with the least moving up to the highest to see which feels comfortable and has the best result - you have an assessment before you start and at the end of each of the 3 weeks to check this.
It’s a bit like when you fly in a plane - your ears can pop a bit, but the oxygen tank operators explain how to clear your ears so it doesn’t hurt before you go in. It takes about 10 minutes to reach the appropriate pressure, and then you sit in the tank, with a good book or laptop (with headphones) and breath oxygen for an hour. After that, the pressure is brought back to normal and you unplug the pipes and leave the tank.
To start with, I would get a bit tired for an hour or so straight afterwards, but now it’s OK.
I find it really helps with fatigue, balance and pain - I sleep much better too. Oddly, you get used to being able to do that bit more, be less tired etc. very quickly and it is only when you have to miss a few sessions that you really notice how much it benefits you. In 2020 due to Covid, no-one could have oxygen therapy for a few months and by the time we were able to have it again, we were all struggling hugely with fatigue, balance and pain issues.
When I first started, there was a lovely lady in the same session, who had been having oxygen therapy for nearly 40 years and swore it had helped slow down her MS - she was in her 80s at the time.
Johno I think the recent research would say your balance of risk is best to get on a heavyweight DMT (MS med) soonest to give you best long-term outlook. Good luck.