Myself, along with some friends from the local MS group took a trip to our local MS Therapy centre the other day. Must say we were very impressed with the staff who were very friendly and caring, they showed us around and advised us of the treatments/therapies we could have.
We were reviewing the therapies on offer afterwards which I think are very reasonable priced considering the centre is self funding and relies on donations and charity.
I believe that 20 sessions in the Hyperbaric Oxygen chamber costs around £75.00, (the first 5 sessions are free). Now everyone I have spoken to who has used this therapy say it has helped them. (We spoke to a few regulars who swear by it).
Obviously you have to have £75 and I fully understand that not everyone does in these days of austerity but what price some relief from your MS?
The others in our group thought it very expensive but I do wonder whether people in this country are so used to getting everything free on the NHS that they can’t see that it could be beneficial to use this type of alternative therapy. I say alternative as the NHS do not sanction it for MS as they say there is not enough scientific proof that it helps us! A bit like Cannabis I suppose.
I know that my friends find the money for other things in their lives and regularly help financially with the costs of grand children. I do not have grand children and I suppose I would do the same if I did but when you are unable to have any other treatment (DMDs aren’t suitable) or have progressive or benign MS, then surely it’s worth saving up for some treatment to make your life more bearable.
Or is it just a middle class luxury?
I’d be interested to know what other people think?
I am with you on this one, and would actually go a bit further and say that I think its incredible value for 20 sessions.
Compared to any other activity such as aquarobics or something which averages around a fiver a class, £3.75 a session.
Guys…you can’t buy a large Starbucks for that price!!
I would personally make sacrifices elsewhere to have the therapy if it helped in any way, though I’m lucky that my husband is still working so he is very generous in anything to help make life more comfortable for me.
I’m not sure where this therapy is available, do you have the details to share Corkie?
I wouldnt call it middle class luxury, i dont think you can put a price on any symptom relief, i would gladly pay £75 and more, to get ANY sort of relief from my horrible symptoms, i dont think its unreasonable at all, there is no help for us with progressive MS and i think its up to us to try and find at least some symptom relief,for ourselves,whatever it may be,
i am going to my local therapy centre to have a look round, and see about it myself.
Speaking as a PPMSer, I am not too bothered about scientific evidence and prefer to find my own path. The cost of HDOT at the Therapy Centre’s is ridiculously cheap when compared to market rates and you have little to lose by trying. Make sure you can clear your ears and all should be fine.
I don’t think you have to pay for Oxygen therapy at the MS Therapy centre near me. It wasn’t mentioned when I was asking about it a few months ago. I didn’t finish the discussion because circumstances didn’t allow, and I’ve never gone back to ask more.
I’d also became very tired and wanted to get home for a long sleep rather than wait before we could finish our chat. I was going to give it a go, but have ear problems where they are gunked up the other side of my eardrum so I wanted to get that cleared up first. Still waiting! lol
Your therapy centre is a lot cheaper than mine. When I asked (a couple of years ago), I was told £10 a session and I had to have about 20 in the first three weeks to begin with. So I thought, “Ooph!, maybe I should investigate this a bit more!” Did a load of research and discovered that no study has found that HBOT helps MS, but that it might help with spasticity. Apart from that, there was a bit of evidence for and against it helping with bladder problems (so the jury’s out), but that was about it. So, not having any real problems with spasticity or bladder at the time, I decided to save my money.
If that changed / wasn’t being helped by meds or if I was SPMS or PPMS I would definitely give it a go though. Apart from anything, I understand that the Therapy Centres are a great source of support because they give you the chance to meet other MSers and make new friends. That alone could be worth it, but I guess it depends on your circumstances, as you say. And where you live!
So amongst my friends are two who have tried it (at the same MS Therapy Centre).
One will have nothing more to do with it.
The other swears by it. Same reasons as rizzo listed: improvements in spasticity and bladder function.
The only things that stop me from trying it myself is that there is some evidence that it can lead to cataracts (and I have an incipient cataract in one eye), and there is a vague caution about having it if you have had major chest surgery (and I am 12 years into a triple bypass).
You might want to read what the MS Resource Centre say about it:
Hi I think the price is cheap for 20 sessions (I realise its not cheap if you don’t have much money though - its difficult finding money). I paid much more for 14 sessions and now I go once a week and it costs me £10 each time (£40 a month plus I travel 110miles each visit to the centre so ther are added costs there too).
I have to say though that it is the best thing I have ever tried and it has definitely helped me and for me it is visible. I used to be blue or purple or deathly pale and people were always asking me if I was okay and shouldn’t I go to hospital, but after going to HBOT I am now a pinky colour so it is obviously helping oxygen travel round my body which must be of benefit to me. I’m tired after the treatment, but then have energy for the week until my next visit, if I miss a visit my colour starts to go back to its multicoloured blue/purple/pale hew.
It has definitely helped with my breathing and since I started going I haven’t experience the dreaded hug that has plagued me since childhood. I only wish I had found HBOT earlier as for me I see it as life saving. I wish it was free for people so that everyone had the opportunity to try it to see if it will will help them or not. I realise its not clinically proven, but it works for me so I’m happy with that.
Thank you for all your replies, I didn’t say that these prices are voluntary contributions and if people found it hard to pay they could just make a donation. I must say that getting there 3 times a week (finding someone to drive me plus added tiredness) would be more of a reason not to go, I admire you Mary, it really must be helping for you to make all of those visits and travelling 110 miles each time.
It would be nice not to have ‘the hug’ as it’s one of my worst symptoms.
I didn’t mention that one woman who had only one week of treatment had been able to get a full night’s sleep, something she hadn’t done for years.
We were told that it can help fatigue, pain, bladder and bowel problems but I suppose it is once more down to individual experience.
MS; as I’m sure you have realised is not one size fits all as far as treatments go. The expense is purely subjective; to some it may seem a lot; to others it is cheap.
Being I’m old and decrepit I was one of the first to try this treatment when Professor James first introduced it to Action and Research into MS (ARMS) 35 years ago at the West London Hospital.
At that time I used to hang out with Ronnie Lane of the Small Faces pop group and we were joined for dives by Viv Neeves who rose to fame as the first nude model in the Times newspaper.
Viv was a beautiful woman and I told her this treatment must be taken with no cloths on; but she accused me of lying; would I!
Anyway back to the point; after a few dives it was doing nothing for me and I thought ‘what a waste of time sitting here with a mask on;’ yet Ronnie and Viv thought it was brilliant in fact Viv actually bought her own chamber.
So you see everyone to their own; it’s really suck it and see. They are nice people and you will at least meet others.
I go to my local MS Therapy Centre for HBOT, once a week and have been for the last 18 monthsish.
I’ve not noticed any real improvements after ‘the dive’ but possibly have a bit more energy.
The cost is similar to the one you quoted, £75 for the first 15 sessions and then £10 a session after that.
The centre does provide a valuable meeting and social centre for people with MS. It also provides other treatments very reasonably, physio, reflexology, yoga to name but a few.
I have a lot of time for the centre, it is a very friendly and welcoming place and they operate on a shoe string.
I go because it can’t be doing any harm, is possibly doing some good and I occasionally get to ‘meet’ the rugby players from our local premiership side . Being in a confined space with Matthew Tait once for an hour made a middle aged woman very happy . They use it to help recovery after injuries so there must be something in it or they wouldn’t waste their time and money.
I go to my local MS Therapy Centre for HBOT, once a week and have been for the last 18 monthsish.
It sounds as if you are visiting Canterbury; as there is a rugby club next door!
They are certainly a lovely bunch of people, very positive and caring. I do hope they are able to raise money for the new centre, as some of my friends were rather shocked that we were entering what did seem to be a porta cabin.
I hope you do get some benefit from it; sometimes it does seem to take a while.
They also operate on a shoe string and are based in a unit on a industrial estate, which has its limitations. Parking is a big problem and most of their customers are a bit dodgy on their pins so parking and walking in is not an option.
I remain unconvinced that it has made any marked difference to me. I don’t particularly notice if I miss a week whereas others say they do. As I said it is not doing any harm and with SPMS what have I got to lose?
lf you can get to one of these centres easily - then go for it. l believe you have to go very frequently to begin with.
The nearest one to me - is just too far away for me to travel otherwise l would definitely go. My brother was a professional deep-sea diver for some years and he had to use the hyperbaric oxygen chamber regularly. When l asked him if it would benefit me he said - whatever condition you had - you would feel good after.
Just do be aware that HBOT, although generally safe, is not without side effects and there are certain medical conditions that are contraindicated in having HBOT.
You should not have HBOT if you have COPD or emphysema because of the risk of oxygen toxicity, you should not have HBOT if you have a history of major chest surgery, pneumothrorax (collapsed lung) or heart disease and you should not have HBOT if you are at risk of cataracts or IF YOU HAVE A HISTORY OF OPTIC NEURITIS.
Get the OK medically before having HBOT and keep your expectations realistic,
I started HBO at the beginning of the year, our centre suggests donation of £10 a session, and you have to do 15 sessions (in a row, one each day) for induction, I found that part very expensive. Now I try to go once every one or two weeks. I have no idea if it is helping or not but I live near the centre so its easy for me to get there so I think why not? I enjoy meeting people at the centre too who know where I am coming from, and to be honest its nice to HAVE to sit down and rest for two hours!
My outgoings have gone up a lot since my diagnosis, I pay to exercise, I pay to eat really well, I pay for supplements, and I go to HBO, BUT I don’t feel I can not do these things now, yes it makes money tighter but I’d rather be healthier for longer if I can do anything at all about that.