just been diagnosed with ppms

[Phil]

my name is Phil i am 40 and just been diagnosed primary progresive ms i have major mobility problems at night my legs give up totally and i am wheelchair bound outside the house. i have bad fatigue most of the time i am receiving no help or medical treatment from nhs, any advice would be most gratefull. Phil

[Scully]

Hello Phil,

 

Welcome to the forum boards. Always nice to welcome new members.

 

So sorry to hear about your diagnosis of PPMS. I am also a PPMS'er, having been diagnosed about three years ago.

 

There are not many drugs to halt or slow the progression of PPMS. We are a small percentage of MS patients. My own London neurologist told me that in his opinion there are no drugs for the type of MS I have.

 

I take medications to combat some of the symptoms. Amatriptyline, Baclofen and Gabapentin. My worse symptoms are sensory pain, and muscle spasms. I am still mobile, but use a wheelchair fo anything over about 30 metres.

 

I have a Neurophysio, with whom I have three, six week intense physio and excercise. And an MS Nurse who sees me as and when required. She has listed me as a willing drug trial participant, but I've not been chosen for any drug trials thus far.

 

My meds, MS Nurse and Neurophysio are all provided by the NHS, as is an Occupational therapist, who makes sure I have canes, a rollator, and my wheelchair.

 

Have you not been offered any sort of help by your GP or Neuro? If you haven't, then I would be inclined to go to your GP and ask to be referred for physio and an OT.

 

Scully

Edited 4 Mar 2012, 2:23 pm by Scully

[Phil]

thanks scully i am going to see a neuro at kings collage end of march but have been waiting since november, ms nurse came to see me gave me leaflets and said she would be back to see me in 12 weeks, my physio said he dont want to see me anymore coz theres nothing they can do, i have a care manager who got me wheelchair but i have to use crutches indoors coz they say a frame is not safe because i keep falling.

[Scully]

Hello Phil,

 

I can't understand a physio saying they can't help you? It may be worth checking with your GP or give the MSNurse a call. Ask them if you can see a Neuro-physio or rehab physio. These are different to your normal physiotherapist in that they treat neurological conditions such as MS.

 

It is important as they work on the core muscles, thus making you steadier on your feet and preventing falls.

 

Good luck at Kings, try and take a brief list of questions with you, I always forget to ask something or another so take a list. I was diagnosed at The London Neurological and Neuroscience Hospital in Queens square. But I've hear great things about Kings.

 

Do you suffer pain or muscle spasms? If so, has the GP prescribed you anything for those?

 

Scully

[Phil]

hi scully thanks for reply ive just had visit from ms nurse coz i called her out but she did not mention anything about physio,she was only interested in me moving to amore suitable property hopefully in about 3 weeks time then she will come to re-asess my walking aids, i dont suffer pain but i do suffer spasms however i am getting no treatment what so ever not evan for my fatigue, when i move i am going to start going to mstherapy centre at canterbury to have oxygen treatment and physioi cant go at the moment because i cant get down the steps at my house thanks Phil

[happyandy]

Hi Phil and welcome

 

I would expect you to be offered Baclofen for the spasms. I know Scully and myself take it and from my own point of view it makes the world of difference.

 

Andy

[Hezza]

Hi Phil and from me too,

I, too, would suggest asking your MS Nurse about a Neuro Physio referral when you next see her as well as asking about medication to help with your symptoms. I've not received physio myself but do know from other MSers how valuable they find it to be. MS Nurses can be invaluable but they only know what we need, and what is bothering us most, if we tell them.

 

Fatigue is a tricky symptom to manage - with or without medication. There is medication that can be prescribed but it comes with side effects and doesn't suit everybody. My 1st MS Nurse encouraged me to see if I could manage my own fatigue, without meds, if I could and I largely manage to do that. I pace my days, take plenty of rests and try to eat well and exercise. I am getting a battering from the Fatigue Fairy right now but that's because I had a busy weekend with visitors

 

I hope your move gets sorted out and goes smoothly for you.