I went to St Georges last week and saw the Dr my Neuro consultant referred me too. She confirmed my diagnosis as Primary Progressive MS. I asked her about treatment, she told me that there isn’t any for this type of MS.
What I wondered if there is anything I can do that might help myself. I’ve got some new exercise DVDs to try out and see if they help a bit. I’d really like to be able to get around without any trouble. My Dad takes me to where I need to go but if he gets a job that he’s been interviewed for I would be stuck. Dial a Ride wouldn’t let me become a member. I think I will see my Dr this week and write a good letter for me to include in applications.
If you have any other advice that any of you can give me that would be great.
I know you were sort of prepared for your official diagnosis but hearing the words is somehow different.
So now you’ve got to plan how you are supposed to fit your life around the diagnosis.
Starting your exercise plan is a great start. But you could see if you can get some help from a physiotherapist. In my area we have a multidisciplinary Community Neuro Team which includes physio and OT amongst their number. The MS nurse is connected, as are the bowel and bladder services. If you have anything similar in your area, you could get a referral from your GP. Or just ask your GP for a physiotherapy referral. Or even a hydrotherapy referral. I think there are some sneaky hospitals who have pools tucked away and don’t tell anyone about them!
You should be able to get a bus pass from your local County, Borough or Metropolitan Council (depending on where you live). In West Sussex they are free bus passes.
I don’t know how long you’ve had MS symptoms, but assuming it’s six months at least, you could apply for PIP, depending on how much your walking is affected. Have a look at the PIP self assessment on https://www.benefitsandwork.co.uk/ to see whether you might qualify for some extra money. If you don’t at present, just tuck it away in the back of your head for later, just in case.
Try Dial a Ride again now you’ve been diagnosed. And Anthony’s suggestion of a scooter is a good one, you can get some nifty little folding scooters that fit in the boot of a (your Dads) car!
In addition to the good advice you have already received, I would recommend looking at the Overcoming MS website and availing yourself of their free book. It has useful advice about diet and exercise, for instances.
As you probably know, a new drug called Ocrelizumab is being currently assessed by NICE to determine if it will be funded through the NHS but the ruling will not be made until later in the year.
With PPMS, I found I had to learn, mainly the hard way, what my new limits were and pace my day accordingly. You will find out for yourself when the best time of day is for physical and mental activities and learn to allow plenty of time to recover.
While it’s true that there are no approved treatments for PPMS, it might be worth taking a look at ldn as a possible treatment option and see what you make of it. My GP has prescribed on the NHS since 2004, so perfectly legal and highly unlikely to do any harm. It doesn’t work for everyone, but what does? The advice on getting a physio assessment is excellent and keeping our muscles strong is vital. Do you have a local MS Therapy Centre? http://www.ms-uk.org/sites/default/files/choices_ldn.pdf
Sue, I already have a Physiotherapist at Croydon hospital. I have my 2nd appointment with her on Friday. I had a nice chat with her in my 1st appointment. She felt sorry for me when I told her about my last disastrous visit to see Shaun Evans in Oxford. I was glad he didn’t see me unable to get up.
I’ve already tried to claim PIP but I didn’t pass their untruthful assessment. To see how I’m affected they really need to see me after I’ve walked down the road to my local shops.
I will go to my Dr’s this week. He’s really sweet and helps me out a lot.
Wow Jo, as Sue said, expecting a diagnosis then hearing the words confirming PPMS is a strange shock. I’m assuming you’re young if your dad is job hunting. If you’re unsure of using a scooter or Powerchair to get around, they save your energy and you can travel on buses, trains even planes. But as you’re unsure about them, you can hire them from Shopmobility places. A great way to try them, quite cheaply.
I admire your determination to make the most of life and every opportunity. There is lots of info on the Home Page of this MS site, including great publications of various symptoms, free of charge & you can apply to have them posted to you. I qualified for a free bus pass way before the age of Senior Citizen, just based on my diagnosis and inability to drive.
With exercise, I recommend doing Pilates. It help builds core strength, and is really good for improving balance and posture, which help with walking.
Where abouts do you live? I’d have a look at your local council’s website too, as it should have details about services for people with disabilities. Here in Sheffield we also have something called Community Transport, which offers various options to help people with disabilities to get around, so you could see if there’s something similar where you are. And see if there’s a local branch of the MS Society or MS Trust, as they could have some good tips for where you are.
I just thought, you failed to get PIP based on the last assessment. Now you actually have a diagnosis, probably more evidence of your inabilities. I suggest you reapply, even wait a couple of months then reapply. This time, start collecting evidence now. So that when you apply you’ll have proof of what you are saying.
And in the meantime, obviously continue to try improving your core. As you’ve already started doing.
When I wrote my post I omitted to include a few words about Biotin. There is some useful information about it on the MS Trust website, as below.
A number of people on the forum do use it; I have been taking it for about a year now. There is a thread recently started on the subject:
It has not stopped my progression but I do feel it has slowed it down and stabilised some of the symptoms. For instance my bladder control has improved and I am able to walk a little better, although I still need a stick and/or a rollator. It’s not a miracle cure but a useful weapon in my armoury.
Wow! Thanks for all of your messages. They are all very useful.
Since I was last here I’ve been referred to an MS Nurse at St Georges who I will be seeing on Wednesday. I also was called from the appointment maker at St Georges. I’ve got an appointment in June for an MRI scan, lumbar puncture and they will be taking my blood too. So much has happened since my 1st visit to St Georges. My Physiotherapist has also referred me to an occupational therapist and to a group who talks about fatigue. I’d like to go there and find out what I can do to stop me feeling so tired and sleeping during the day.
My Dr has recommended that I appeal straight away hoping to get a different decision, after I send all of my letters confirming my diagnosis to them. I have had a phone call from a lady who works for Dial a Ride. She’s coming to my house on Friday to talk about becoming a member.
So I think that is me for now. I’m sure I’ll be back very soon.