Good evening all, Hope all are well. So its been very confusing with my referral. Doctor urgently referred me after a walkless visit to a n e. (Have been to see doctors loads in this time and was heading for a referral anyway) I got a call a few days later to see the neuro a week later (would of been this week) anyway I got a letter last week to say my appointment is beginning of july. So phoned neuro to say I had already been booked in. They had no appointment for me (someone didnt book in right) anyway she says on my notes its an urgent one but still putting me in for 6 weeks times… is this right? Can see this being a long drawn out wait. Feeling a bit deflated. X
Hello Six weeks is the standard waiting time according NICE guidelines. If you want to, you could contact PALS at your hospital and explain about the mix up and change of appointment. Good luck x
Hi blossom, Thank you for getting back to me. I thought that was just the standard waiting time. Very frustrating to know you may be seeing someone and then a big mix up happens. Will try pals thanks hadn’t thought of that. Do you think it may be worth a chat with my gp? I hear the waiting in general is a nightmare from start to dx. How long was yours if you dont mind me asking. Xx
Hi blossom, Thank you for getting back to me. I thought that was just the standard waiting time. Very frustrating to know you may be seeing someone and then a big mix up happens. Will try pals thanks hadn’t thought of that. Do you think it may be worth a chat with my gp? I hear the waiting in general is a nightmare from start to dx. How long was yours if you dont mind me asking. Xx
My referral to the neurologist was quick. I was referred for chronic headaches/migraine. Never thought about MS at the time to be honest. My diagnosis was quick compared to a lot of people’s but looking back I’d been having problems a long time but related them to a form of arthritis I have. Hopefully things will go smoothly for you, everyone’s experience is different How are you feeling at the moment? Are you happy to wait? If not then contact PALS and let them know your not happy about mix up. But you make your own decision about if you think it’s worth it. Good luck x
Bet that was a right shock for you. How did you feel when they said it was ms? Hoping it goes smoothly. Ive had problems with my legs for about 4 years with pins and needles and pain. But they put it down to sciatica. Been treated for all sorts back related. But past year ive suffered with migraines also tingling has started in arms and face. Been to doctors monthly this year. But past 3 weeks I havent been able to walk so ended up in a n e and that was the final one for my doctor. So here I am. Im ok just wish I could walk without falling of hurting. If im honest I want to wait as im frightened of the oout come but also want to be seen asap so I can get some help. Thank you so much for talking to me 
Hope you are ok how are you dealing with it all? Xxx
Bet that was a right shock for you. How did you feel when they said it was ms? Hoping it goes smoothly. Ive had problems with my legs for about 4 years with pins and needles and pain. But they put it down to sciatica. Been treated for all sorts back related. But past year ive suffered with migraines also tingling has started in arms and face. Been to doctors monthly this year. But past 3 weeks I havent been able to walk so ended up in a n e and that was the final one for my doctor. So here I am. Im ok just wish I could walk without falling of hurting. If im honest I want to wait as im frightened of the oout come but also want to be seen asap so I can get some help. Thank you so much for talking to me Hope you are ok how are you dealing with it all? Xxx
I was diagnosed last august so I’m adjusting ta. I just take each day as it comes. It was a shock for me. I’d gone to see my gp who is lovely and asked if she’d got my MRI report. She said I shouldn’t really access it for you but I will. She was as shocked as me, in fact I ended up reassuring her, saying I’m going straight home and I’ll be ok. Showed the report to my husband and he just held me while I had a good cry . It is a frightening time, the not knowing. Wait if you feel that’s better, six weeks will soon pass. If your having problems with balance/falls get your gp to refer you to physio. You could also go to your local disability shop and get yourself a walking stick. X
Hello
It was exactly the same for me - I couldn’t understand how urgent = six weeks.
My GP had a good idea and ordered MRI scans and blood tests in the meantime - on the basis that the neurologist would have something to look at rather than simply order the tests when he saw me the first time. That seemed to kick things off and they ended up seeing me much sooner.
Might be worth discussing that with your GP
Best wishes
David
Last august so still quite fresh for you. Have you got a good support network? How you finding everyday life now? Sounds like you had a good doctor on your side. I have seen so many and finally got a great one thats very supportive. Im happy to wait though im ok in my bubble of denial tthat nothing is wrong with me I thought about a walking aid but to be honest I feel a bit reluctant to use one I dont know why maybe because of my age. Do any of you use one and how are you finding it? Thanks for that info david I didnt know the doctor could actually order an mri! May have to have a word so speed it up a bit. My gp ssent me for the blood test so at least I dont have to worry about that now. Thanks guys you’ve been a great help xxx
Last august so still quite fresh for you. Have you got a good support network? How you finding everyday life now? Sounds like you had a good doctor on your side. I have seen so many and finally got a great one thats very supportive. Im happy to wait though im ok in my bubble of denial tthat nothing is wrong with me I thought about a walking aid but to be honest I feel a bit reluctant to use one I dont know why maybe because of my age. Do any of you use one and how are you finding it? Thanks for that info david I didnt know the doctor could actually order an mri! May have to have a word so speed it up a bit. My gp ssent me for the blood test so at least I dont have to worry about that now. Thanks guys you’ve been a great help xxx
Hello joe87
Yes, I get plenty of support from my family and friends and I feel very grateful and lucky.
I do have very good doctor and I’m glad you have now.
If your happy to wait then do…it won’t be long
I use a walking stick now for balance and to prevent falls when outdoors. I also hold on to my husband and only walk short distances because I tire easily. It’s something to do with spatial awareness, everything closes in on me when out in the open…I walk like I’ve had a few too many
I hated using a stick at first, I thought everyone was looking at me, everyone was…I’m gorgeous Sorry!!! I’m trying to be serious. I’m used to the stick now, in fact I get complete strangers happy to help me, which is lovely.
It’s better then falling, that made me feel sick and in pain.
Give it some thought.
Noreen xx
Lol! Try not to be to serious its nice to have a laugh and a joke My kids get such amusement out of my walking (like a hunched dinosaur) and trying to find the next surface to grab hold onto! Really may have to consider my only problem is my hands cause me grief to. One day trying to walk holding on in the hall way my hand gave way! Lovely wallop to the floor just as my OH walked in the front door! He did laugh while I cried (such a loving man lol) but I soon found the funny side. Lovely strangers are helping its nice to see there is kind nature still in the world. What sort of walking stick do you have? Also do you have trouble with your arms or hands whilst using it? Try maybe having a few to drink may do the opposite affect 
Xxx
My walking stick is abstract purple darling girl gotta look good. It does fold up, although I never have done.
I do have weak wrist but because we have a car and I don’t walk far it’s not really an issue for me. If I’m too tired, I just don’t go out. I’m 58 and my two children are grown up thankfully, can’t imagine what it’s like for young mum’s like yourself…so glad it’s me and not my son or daughter.
You really need to ask you gp to refer you to ot/physio. You can’t keep falling, you will really hurt yourself…you don’t have to use the stick all the time if you have good days.
I got mine from the disability shop and they measure and make sure it’s the right size for your height.
I have tried alcohol and belive me, I’m even more dangerous to be around Lol
xx