I have just received a phone call from my GP asking me to go in and see her this afternoon at 4.10 and to take someone with me. I had my MRI on Sat and neurologist sec rang me yesterday to go to surgery and pick up prescription from them for steroids (which I did) and have now received the phone call from them asking me to go in. His secretary also gave me an appointment to see neurologist on Monday at 9.30. I am now really really worried.
Hi Sarah x not much I can say other than don’t panic!!! easier said than done I know!!! - the best of luck and hope you get some answers - let us know as soon as! xxxxxjenxxx
I’m sorry you haven’t had any replies yet. I hope this still reaches you in time, before you have to set off for the doctor’s.
Remember, a GP cannot diagnose you (they’re not qualified), but I guess you know from the context that they must have found something they need to talk to you about.
Although they won’t be allowed to formally diagnose, they can obviously talk to you about what the main possibilities are - but it would have to be confirmed by the neuro.
I don’t know if it’s something you would find helpful, but one technique I used on the road to diagnosis was to keep reminding myself that “whatever it is” didn’t just get there overnight. Being told only increases your knowledge of it - and knowledge is power. You don’t actually leave any sicker than you went in.
Good luck at the doc’s! Do you have anyone to go with you? I didn’t, but I was fine. (I like the way they assume everyone can just “magic up” someone).
Please tell us how it goes.
Good luck Sarah. As Jen says there obviously is something that they want to talk to you about. Hope you did manage to take someone with you. Let us know how you get. Will keep my fingers crossed for you that everything goes ok.
As Tina said knowledge is power and sometimes though getting a diagnosis is a shock at least we know whats wrong and can learn how to deal with it.
Massive hugs!!! Lean on us if, and when, you need to. Thinking of you, Mandymoo xx
Dare I ask how it went??
Oh dear - where is she? how are you Sarah? Thinking of you
I was just wondering how the docs went? Thinking of you xx
Hi all, thanks for lovely comments, yes she has confirmed via the neuro who had sent her a fax and me an email that it is MS. I had read between the lines of the email he sent me, but I had already suspected that this was the result months ago. And Tuesday when I saw her she did a referral to OTs. I have to see her again Tuesday as they’ve put me straight on the high steroids for 5 days. Neuro is arranging appointment to see him on his next available slot, as he has said that he needs to do another couple of tests to totally decide on strain. GP did express her opinion which I agreed with her but we will see what neuro has to say. It’s a relieve to actually have it said out loud, it’s not the end of the world we just need to make the adaptions as we go. But otherwise not quite sure how I feel sort of numb but relieved!! I can actually say I slept last night for the first time in I don’t know how long but that may be because she upped amitripolyne (can’t spell). Sarah
Welcome aboard and a good attitude to take.
I’m sure there will be days when you dont feel so calm about it,but we are always around.
All the best
I am sorry you have now got a diagnosis of MS. It must feel like a relief to finally have a name for what is going on with you, but it still must come as a shock. Your neuro and doctors all seem to be great and I hope you will get the help you need now.
Please take care Sarah and remember to look after you!
Hi Paula and PIp Thank you so much for support and words of encouragement !!! I would reply individually but don’t know how:-( I took first lot of steroids this morning at 8, they were vile!!! Not started to bounce of walls yet but neuro secretary rang me this morning and she was laughing saying it normally day 2 that starts. That’ll be fun!! Bless her she rang to say she had cancelled rheumatology appt on mon. Neuro had asked her to cancel, she’s trying to get me in ASAP! Yes my GP and the neuro are lovely. It nice to be taken seriously at last. Yes I also think it will probably hit more in a few days time but I am seeing her Tuesday. Sarah xx
Wow! Its a mixed reaction I imagine. Big hugs to you for being so brave xx
Yes but ive got to stay positive and not fall apart as my boys are only 10 and 11, so they sort of understand but then don’t, if you know what I mean. I don’t won’t to tell them until we know Definately what strain it is. We have a friend with ms who is in a wheelchair so I need to work out how going to tell them!! Will admit that my brain does keep wondering and having trouble with eyes today. iPad wonderful thing that can make text bigger. Am waffling sorry, sure it will hit witha bang shortly. Sarah xx
Sarah - I’ve tried looking for your story on here but can’t find it…what led to your diagnosis if you don’t mind me asking? Dx
Deb Here we go, will try and abbreviate as goes on slightly. Right 4 years ago my left foot went numb along with the top of the leg. Prior to that and I can’t tell you when started I would end up in a heap on the floor for no apparent reason. Any way went to GP who said I had a trapped sciatic nerve and was sent to rheumatology who said the same and gave me two epidurals over the course of 6 mths but they didn’t really do anything. Just carried on. At some point my right foot went numb but that came and went and then came etc etc. Anyway in march last year I had a hysterectomy they left overies. After that my leg seemed to be worse but I then had to go back in and have overies and a hernia sorted over a period of 6 months but kept getting infections they couldn’t clear and didn’t really know where they were all the time leg getting progressively worse. Then in November my whole leg went numb. I also realised that during this time I had kept dropping things and couldn’t do up this etc. anyway I went to GP with it all and it was a lovely locum and she agreed things were not right. Especially as I was also having a lot of bowel and bladder problems again which i have had on and off for probably around 7 years. She referred me back to physio and rhemotolgy. Physio took one look at me and said we are contacting rheumatologist to say you need to see neurologist!! My co-ordination is shot and could walk about 100 yards unaided. Meanwhile I had MRI of lower spine as rhemotolgy was still doing route of sciatic nerve, that can back clear. Was tested for carpool tunnel (cant spell) it was that. He then referred me to neurologist. Anyway hand nerve conduction tests, electromyography tests and had the brain scan on Saturday. Neurologist and GP as you know gave me results on Wed/Thursday this week. I know I last drove on 12 April but haven’t since as I can’t co ordinate leg and hand/arm at same time. I think I started using the stick all the time then. My balance, co-ordination are non existent at the moment and don’t go out unless got someone with me. The buzzing and pains in legs, feet, hands and arms are always there and I want to cut them off at times. I have hardly any bladder control at times can go a week or so ok then it goes haywire again and when I need to go I have to go and get out my way. Many accidents have been had. This last week my right leg has actually got far worse which I don’t want as I won’t be able to walk at all!!! And hands have got much worse. I fall regularly because of balance and my leg just goes. Can’t get in or out of bath unaided and I can’t remember when I last had a shower as cant stand in there without wobbling all over the place. Am going to stop now as eyes going blurry but you can message me if you want to know anything else. Sarah xx
Sorry meant it wasn’t carpol tunnel!!
Sorry meant it wasn’t carpol tunnel!!
You sound to me as though you need OT and physio input as a matter of urgency. If you dont hear soon I would case them up.
If you have aids to help eg perching stool and shower chair you wont waste so much energy,and keep you safe.
My neuro nurse is sending me some sort of glove that is supposed to help you do things when your hands have altered sensation–I will let you know on that one.
Have you had a referral to the continence team, as there are loads of things to try to help avoid your bladder from controlling you rather than you controlling it?
Hi Pip Thanks for that, I have a GP appt tomorrow so going to chase up OT referral as certainly need some aides. Was going to ask on the incontinence side to see if there was anything as I was sure there must be. have certainly been bouncing off walls today bit oh do I have cabin fever at the moment!! hot flushes have been horrendous today. At least I’ve sorted a lift to and from docs tomorrow. Everyone is being brilliant. Sarah xx