Forum

Finally got dx not good news

Hi Everyone,

Sorry I have not been around on the forum for the past week or so, this is because I recieved my final diagnosis on Monday.

I have been diagnosed with ppms or primary progressive ms which there is no medication for only medication to manage the pain so ohh joy I have to live by being resigned to the scrap heap.

This has progressed very quickly as 18 months ago I was able to run and walk properly. Now I have to use 2 crutches to help me with my walking and balance.

Where am I going to be in an other 12 months, will I be able to work again? I have not been able to get any answers as ppms develops differently in each person and this scares me.

So instead of looking on the dark side of this disease I have been looking to the more positive side where I have decided to start charity fundraising for ms research and ms support. I will post more details when what I have decided to do and what charities including ms society I will be supporting.

Robert.

What an inspiration you are. Commisulations on your diagnosis, but so impressed you have been able to find a way to take control of it. Looking forward to hearing about your plans! Leah :slight_smile:

Thanks leah,

I will need to get meds for pain sorted out first before anything else.

My neuro is in charge of the research centre in glasgow and when I found out that no research is being done on ppms, that is when I decided to do something about it for as long as I can.

Robert.

My mistake I meant to say reaearch is being done all the time into ppms but there is no meds available at the moment onlt pain relief for ppms.

Can we get a spell checker on forum please, fed up posting all the mistakes.

Robert.

Stop correcting your mistakes Robert, I have…be a rebel like me lol You already know I’m happy to see you back :slight_smile: Look forward to hearing about your fund raising ideas when you are ready. Noreen x

Hi Noreen,

Rebel for a cause lol

Robert x.

You’re a good man, and everyone is here for you. I’m sorry to hear your news, as we all are, so big virtual hugs to you. Xxxxxxx

I think I’m in Same position as you I could run a year ago too I use crutches to help me due to balance I can’t walk far due to stiffness your a inspiration good luck with it all.

Hi Alysea,

Thanks for comment,yeah the stiffness is a pain but I am not doing anything strenious. I used to dj in clubs and online radio stations in scotland.

One thought is to do regular charity nights in various nightclubs to raise money for various ms charities inc ms society.

This is still just a thought though?

Robert.

[quote=“Beverly f”] You’re a good man, and everyone is here for you. I’m sorry to hear your news, as we all are, so big virtual hugs to you. Xxxxxxx [/quote] Hi Beverly,

Thanks for comment, Remember im always here for you and anyone else who needs me.

Hugs xxx

Robert.

Hi Robert, sorry to hear about your diagnosis. Has anyone mentioned physio to you? I’ve got PPMS and balance and walking are my main issues. I have access to a physio through work so I went to see him just after I was dx and asked if he could help, he said he could and he was right. He set me exercises to do at home to strengthen my core muscles and they are working - I do walk better and I use my walking stick less than I used to. At my last review he changed my programme - his aim is for me to have 3 or 4 sets of exercises that I do in rotation.

A neuro physio is usually recommended for people with MS. Mine isn’t but he has worked with people with MS in a previous job and he understands what’s going on in my body and what will help.

If you don’t have access/can’t get a referral to a physio, google “MS exercises” - there are plenty out there.

Good luck.

Hi Mitzi,

Im currently waiting for my nhs physio getting in touch with me. I recieved a letter to say that the trac team had recieved my referral and will be in touch in due course.

I also have an appointment with another charity organisation called revive ms support that integrates all the services into a one stop shop from physio,councilling,pillates,yoga,keepfit ect. That is happening today.

Thanks for the info anyway mitzi much appreciated.

Robert x.

Hi Mitzi,

Sorry I forgot to add to last post that I am glad to see your physio treatmtnt is working for you. Hopefully it will be the same for me.

Robert.

Hi Everyone,

Just to let you know that I have had an excellent day today. I had an apointment with MS Nurse at revive ms support.

I now have a physio, counsellor,reflexologist, circuit training and fatigue management plus access to other areas if I want.

All of which starts next week.

Robert.

Wow Robert, you have been given access to an excellent team of professionals…really happy for you :slight_smile: Make the most of them :slight_smile: Noreen x

Thanks Noreen,

Have you got anything like that in your area? I just did an online search of ms support in my area and had a look at what came up.

Robert x.

Hello Robert

There is nothing in my area like what you mention. I’ve had physio and OT referral which was really helpful and I can be referred again in the future if needed

I see a lovely local therapist for Reiki and indian head massage so I’m happy

Noreen x

Hi Noreen,

It is nice to see that you have a good team around you. It is just a pity that there is nothing else in your area.

Robert xx.