Hi
I have been to see a Neuro today - who really didnt want to see me at all (she has referred me on to an MS specialist, so why she asked me to come in is beyond me! - she wouldnt be drawn on ANY questions at all and just kept saying “well perhaps the MS specialist will talk to you about this in December”!!)
Anyhoo,
She once again suggested I have PPMS based on my medical history . I asked about therapies and drug treatments as I started my first signs of MS last December and have still yet to be spoken to about about any treatment other than 3 days of steroids. I asked about physiotherapy and she said she would ask my GP to organise something. I wanted to know what physio would do for me, what it involved etc but she didn’t answer anything. I gave in asking as it was quite obvious that she just didnt want me in her office talking to her and she gave me a form to hand into reception to discharge me from their care.
So, what will physio do for me, what does it involve? Simple questions… can anyone help please?
Anita
x
Sorry Anita can’t help about the physic but I had a very similar experience with my Neuro. She just wanted to wash her hands of me and pass me on to the MS specialist. She also thinks I have PPMS from my history but wants the specialist to confirm the dx. I will be glad to get it at last as I have found the Neuro less than satisfactory. I had to wait 5 months between my 1st appntmnt and my follow-up. All I’ve done is wait this year with my health deteriorating quite significantly. The only meds I’ve been offered is Gabapentin for the pain by my GP. Anyway I hope you get some satisfactory answers and relevant physic asap. Tree65 xx
A decent physio will assess areas of weakness and tailor an exercise programme specific to your needs. I suspect this will involve some core stability work, which really can help.
My understanding is that steroids are pretty pointless for ppms, so perhaps there is still some uncertainty about the type of MS you are blessed with.
Thank you both
Yes she did ask about the effect that steroids had on me and I had to report it wasnt really that major a difference. My legs felt like they had a bit more stamina at the time but nothing more apart from insomnia, weird dreams and smell induced memories flooding my brain.
So that explains why they stuck me on a 3 day steroid treatment and why they didnt do very much - the Neuro was unsure and just wanted shut of me and this kept me busy for a while whilst waiting an unearhly long time to see someone who might have a bit more knowse about MS.
I am looking forward to some physio, I am tempted by yoga (after watching waybaloo with my young son and trying to do Yogo with him!) but it would probably be too much right now. Perhaps I can aim to go to a class after some physio.
I think yoga is an excellent choice of exercise for us MSers and as long as you stick within your comfort zone, all should be fine.
There are no approved treatments for ppms, but I find that ldn helps most symptoms and has significantly slowed progression. Take a look at www.ldnresearchtrust.org and see what you make of it.
Hi, I had physio at home once a week for 6 weeks. Yes it was tailored to what I needed. Some core balance exercises and leg strengthening exercises.
I still do them and they have helped. She also gave me some good advice… like when I’m strong enough to leave my mobility scooter outside shops and walk into the shop (I use folding walking stick). Also I live in a building with long corridors with hand rails (sheltered housing) so she encouraged me to walk up and down every day. I know it sounds silly but somehow I didn’t think that walking indoors counted… daft I know. Now I go for a walk up and down the corridors every day when I can manage it.
One of the best things that it was somebody who was happy to talk about my MS… who actually listened and who understood!!! Did me as much good emotionally as physically!
Pat x
Hi Anita
I have recently taken up pilates which seem to help, also had appointments with a neuro physio who gave
me a set of exersises which i do daily at home. There are some really good work outs on the MS Therapy
website. Hope this helps.
Peter x