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Feeling dreadful & No Support

Been ages since ive logged in and had a read sometime ago i asked about injections and cant find it but many many thanks to all those that replied , since i asked ive been put on Pregaballin and i was so happy for about 4 weeks i felt wonderful and normal whatever normal is , im now upto 225mg twice daily , my recent MRI showed no change other than dmylenation in the optic area and 2 scars so as it was before, my sight hasnt improved much now since Jan/Feb so 17 months on i think its the best its gonna get in the the left eye, i feel chuffed theres no change but feel hung out to dry as my MS Nurse is nice when you see her but no replies to emails or contact , i havent a clue when my next neuro and ms nurse appointment is and my local support group when i made contact said if you find a place to have a meeting you can hold 1 but i know nothing of MS or how to help folks in this arena.

Im guessing its all got me down and the PTSD has really been a struggle but the RNLI have made contact and are going to help so theres maybe light at the end of the tunnel though its a case of ring and tell them im strugggling but im not the type to ring and ask for help or to say its got too much, itts okay on here as there are folks that understand the struggles but a voice on the end of the phone im not sure will work out as im not 1 for saying help, we will see anyhoos ive ramble long enough and im sure its just everything piling up and getting me down and tomorrows another day , hope everyones keeping okay and being able to enjoy the sun all the best

sheep

Don’t for get there is always support on here for everyone. Try and keep your chin up high and proud, but we all know there are good days and not so good! Take care.

Hi Sorry to hear you’re glum at the moment. Sometimes things just build and result in us feeling rubbish. I’m glad to hear RNLI can help, do use what ever support they can offer. I suppose I’m lucky in that my MS nurse sends appts on a regular basis (3 monthly roughly but relapsing often). I have no idea when I’m seeing neuro again though saw him when dx and that’s it. Are you doing ‘normal’ things to put a smile on your face? Bike/seeing folk etc? L x

Hi Sheep

I’m sorry you are feeling down at the moment. We are here for you whenever you need to chat so keep popping on here to say ‘hi’ or to have a rant, whatever helps. We do our best to understand and be here for you.

Re the local support group - I’m not sure you need to know how to help folk with MS, sometimes they just want to meet others in the same boat like yourself and have someone who understands the frustrations rather than someone with answers. You could try putting an ad in the local paper to meet in a pub and see who turns up? Take it from there. At my local branch we often don’t discuss MS at all, we chat about all sorts of other things because we know we have MS in common …

Tracey xx

Hi Sheep, it`s unusual to hear you not being so good. You often give me supportive words or advice.

So now it`s your turn and we are all here for you, so keep hanging in there lad and hopefully things will get a bit better.

Why not ask the MSS about how too set up a local social group, if there isnt one near you/? Maybe they will help with advertising a new group.

luv Pollx

Many thanks for the replies yep to just be able to talk to someone who feels the way i do about life is all im after not sitting hours talking about ms but talking about normal subjects , my PTSD councillor has been really good and now the RNLI are offering to help so that side of it is fitting nicely but i know no one in face to face life who is on the ms wavelength so to speak , still thinking of setting up a group got plenty of ideas etc on what to do as a group so just need to take that leap :slight_smile:

Definately in a better place today respect sheep