neartic

hi i had my first attack in 1989 i stay in Greenock on the Clyde i was a hgv claa1 driver ,i was in Milton Keynes delivering when i woke up in the morning i could not feel from my waist down, it took the local NHS 13 years well a private hospital i had to go to because i could not get a scan at my local one the local NHS never once did they tell me what was wrong one scan at a private hospital and the doctor told me it showed the damage to the myelin coating and at the base of my brain, to this day my doctor will not say i have MS he just says symptoms like MS he has not got a clue about it so how does he know, i do not receive any medication for it i have remitting MS i used to see a neuro surgeon at the SOUTHERN GENERAL hospital in Glasgow every 6 months that stopped as far as i am concerned the NHS in Scotland has let me down so bad they and the local doctors dont listen to a word you say as if its not there its you imagination

hiya

welcome to the site….

was it nuffield u got mri done? thats where my first one was done several years ago. why did neuro stop seeing you or you seeing him/her?

u sound angry-and i am not surprised! this ms malarkey is uninque to everyone-they say 4 flavours-i beg to differ-theres as many kinds as there are folk!

however-hopefully u will find some of ur answers (or similar) amongst us

ellie

Hi Ellie, yes it was the Nuffield off great western road, dont know why they stopped seeing me i changed doctors few months back because the other doctors were doing nothing all they used to give me was co-codamol, i was in hospital last may now i have ulcerativ colitus when i came out i started itching all over i went to the dematologist they gave me moisturiser to put on no explanation, went to the doc we have an MS nurse comes every 6 months she said see the MS sepecialist in the southern general, i asked the doc about it because he has to refer you he would not do it till the deratologist said it had nothing to do with the skin, i need a brick wall to talk to i would get more answers and sense from it, Gordon

Hi Neartic Sorry to hear you feel the NHS in Scotland has let you down. I live in Glasgow and the Southern General is the hospital I go to. I see Dr Rachel Thomas who specialised in MS and I can fault her at all, I see her every 2 months ( I know this will reduce over time) and I find her really understanding. When was the last appointment you had with Neurology at the southern? Didn’t they give you the contact details for the MS nurse who’s based at the southern as it’s not right only being able to see a MS nurse every 6 months at your doctors. Once you see the dermatologist if your doctor is going to refer you I’d ask if he could refer you to her as she is specialised in MS. This may have already been the consultant you seen as I don’t know how many they have at the southern. I hope you get this sorted. Polly x

  • can’t fault her! Trying to type to fast lol Polly x

Getting doctors onside can be like walking through treacle. Ask for a referal to the Rehab team as they have a lot of contacts which can get you the right help from the right person.

Staying fit and relaxed will help (believe me I wasted years fighting it - there will only be one winner), go with the flow. What you cannot change don’t try to just work out how to do things differently.

Sensory problems caused by MS can affect the whole body (itching all over - typical) or one tiny area. My hearing is supper sensitive, a knock on a bone gets a pain feedback within a heartbeat which is magnified 10 times and we won’t talk about neuropathic pain, nerve spasm, muscle spasm…

Live the life you have finding positive helpful people and ditching the rest. You only have one chance at it.

Best of luck.

Moira

ps hospitals and consultants who hinder and not help are not based only in Scotland.

i know it has been 2 years since i seen anyone at southern general the last time i was there i waited 45mins then was into see someone i had not seen before , he said to me hello Mr L what are you here for he did not have a clue they never sent my notes up from IRH or my doctors i had to sit and explain it all from the beginning i was nearly in tears by the time i had finnished i felt like no one gaves a dam, and after all that nothing came out of the appointment i was left to try and carry on as before, i have numbness in my arms and hands i have problems doing things also from the knee to my toes is numb, i find it hard to balance some times and walking if i go anywhere i have to make sure i give my self plenty of time because if i cant get parked close it takes me a while to walk i cant get a blue badge because i am on low rate DLA, feels good to get this out sorry folks. Gordon

Well, Gordon,
This is the one place where you can have a rant. A lot of us have over the years.

Anyway, one thing at a time, low rate DLA has nothing to do with getting a Blue Badge. It’s actually the other way round - Higher Rate DLA made a BB almost automatic (you still had to apply, and then you got it). The criteria for a BB is really how far you can walk - and it is currently based on about 20 metres. If you can only walk less than that before stopping to rest - on a good day - and your balance problem means that you have to have a stick, then you should apply.

My advice would be to download the application form from

and fill it in in pencil. Then you can adjust the words until they look right. After that you can fill the form in on-line, and apply. Just remember to keep the pencil draft, so that in three year’s time, you can remember what you put down. Crack that one, and life gets a bit easier - then you can attack the next problem.

Geoff