Today… I find out I DONT have MS and want to share my experience…, I had two Mri’s and a a follow up neuro appt all within four weeks. My second mri was scary as the assistant ummed and ahhhhhed when I asked why I had been called for a second mri and look decidly shifty and didn’t want to say! my letter said they needed further views of my head. Because of the speed and my neuro wanting to see me personally… I spent days agonising and analysing why!!! I didn’t know how to switch off the horrendous mix of emotions and endless second guessing!! My quick appt was due to short waiting list and my follow up is because no matter what the results, clear or not, he sees everyone in person. There is no pattern, no rhyme or reason, just different systems doing things different ways. My advice is … Don’t compare to anyone else because the chances are… You are wrong. I want to share this because I know how dreadful I felt and want to give advice back and help you put perspective on your thoughts. I have received kind thoughtful words and advice from many on here!!! And I want to say thank you too I hope these words are of some help Becky Xx
Becky Great news and a lovely post Gray x
Hi Becky, that is good news.
I`ve spent eons in limboland, been mis-diagnosed, tossed in and out of PPMS by many neuros and finallly, after some 14 years, MS has defo been ruled out of the running.
Current dx is;
spastic papararesis/cause unknown/possibly genentic
luv Pollx
Well said Becky!
I’m lucky enough to have a lovely neuro (wierd, but lovely!) but before I even got to see him first time, I was convinced he was going to be an incompetent ogre after hearing of other peoples dreadfull experiences. I’d really got myself worked up, and was incredibly defensive and wary at my first appointment. In fact, I still get a bit that way, and my last appointment I behaved like a pillock. I e-mailed him shortly afterwards to apologise, and received a really lovely, reassuring message back from him. I forget in the twelve months between appointments that I am one of the lucky ones who doesn’t have a monster, and still work myself up.
The thing to remember is, that everyone of us is an individual, as are our experiences, and our medical people, and that systems vary from area to area, so one persons experience, good or bad, will not necessarily have any baring on our own.
Sharing advice and experiences is great, enormously usefull, and this site is a godsend to me, and many others, but nobody can tell you how it will be for you personally. Keeping an open mind, trying not to overthink, and finding out how things and people work in your area will help you get through what invariable seems to be a hugely stressfull, and worrying time.
Wishing you all the best
Bxx
Hi becky Glad that you had good news about the ms and great advice. I like many are in limboland and have again been referred back to neurology and while i am keeping a diary have now learned not to get too stressed at the weird and wonderful things my body seems to be doing at the moment. What will be will be x Hopefully you are a little closer to finding out what it is Ailsa x
Gray -do hope my post has helped a little, thank u Boudica - I have never heard of that but will be interested to find out about it , how can you be so misdiagnosed for so long! Do you feel you have answer for sure? Hunny- I had a lovely neuro too and I’m sure they are used to huge frustrations but good communication goes a long way doesn’t it and an understanding neuro!! I never realised how hard and stressful it is to get diagnosed , I thought you either have MS or you don’t!! But have learned so much being on this site, it’s been an eye opener. Amc1- I’m sorry to hear you are in limbo land and hope you get an answer at some point soon! This forum is amazing though with great ppl and support, It’s helped me so much Xxx Xxx
Hi Becky,
good post and really nice of you to take the time to write it x
somebody said to me yesterday ‘that a person can only be as good as the information they know and never be put off to ask for somebody else to see as the next person may know more’ I am glad you had a good Nuero.
Catherine xx
Hi again, my mis-diagnosis was overturned by a different neuro…who then changed his mind and put this in my notes and left!
I didnt know until I went for my next annual visit! I was livid and my world was turned upside down again.
You ask how I feel about my dx now…well, I have to accept I dont have MS, but I feel the neuros havent a clue what is really wrong and hence my current dx.
It sucks, but there`s chuff all I can do about it really. I did ask to be seen by a top neuro in Leeds… a referral was granted, but he didnt want to see me…he just advised my neuro to do another lp, which they did to no avail…just a lot of pain for me!
luv Pollx
Hello Becky
Thank you for sharing your experience. Its great to hear, you haven’t been diagnosed with MS.
Yours words will be helpful Becky
All the best to you, on your own personal journey
Hi Boudica That can hardly fill you with confidence when your diagnosis is changed ! I mean talk about messing with your life and you revisiting the agonies of coming to terms with a different disorder!! And still wondering if it really is what you have And then fobbed off with a lp!! So what now…? Or do you feel that there isn’t anywhere to go with it? Xx
Thank you blossom I wish you all the best to Xx