Hey everyone!!
im just so confused and lost at the minute!!
So let me rewind I had issues with sight in my left eye tried going through different hospitals via 111 was told different things even told i had an eye infection but it never made sense so i actually walked into an A&E eye hospital… they kept me in did an MRI told me i had optic neuritis and some nerve damage on the brain…no condition was mentioned to me just that they will send me a letter for a further appointment. That letter did come about and the day before I was told the appointment was cancelled as the consultant wouldn’t be there due to illness and expect a new appointment. New appointment never came but i didnt worry about it as everything seemed to get better so foolishly i carried on as normal.
But 9 months later new symptoms occured… lack of coordination…left hand side was totolly weak…couldnt walk properly…pins and needles in arms and legs…couldnt sleep…just about everything was going wrong. So i booked appointment to see my DR…they had me have an MRI…outpatient MRI… it took 3 weeks to get a call back from my DR.
That was today…the phone call was " hi im calling in regards to your MS results" like what??? i did have an inkling it might be MS because i googled my symptoms and i just had a feeling…
but to be greeted like that i was so in shock!!! just told hey you have MS and theres alot of demyelination on the MRI!! This DR also said he is no expert regarding neurology so I have to see a neurologist and they will book me in for an appointment with a neurologist???!!
i know the NHS have to suffer alot!! and im very sympathetic with that but to get that kind of news the way I did!!??? like really???
im now just so upset and annoyed how i have been treated!! also i have to accept this news alone with no support whatsoever! i dont know what to do now!
sorry for the rant but thanks for listening
What a shocker for you. I think you should regard the ‘diagnosis’ as provisional, pending confirmation a proper consultant neurologist. Don’t assume you’ve heard the last word on that. Even if that does turn out to be a formality and you do have MS, as you had already suspected, that was a rough way to get the initial news, and I am sorry that happened to you.
Hello,
Welcome. Sorry for the shock dx. MS started for me with optic neuritis too and yes it does get better on it’s own; albeit taking a while before vision returned in my right eye.
Likewise, a few months later, another relapse but this time with Lhermitte’s Sign, although back then I didn’t know the name and just described it as shooting pains up and down the spine.
20+ years with MS now: you have good days and bad --but hey it’s good on here, you have a MS soundboard to let off your frustrations.
Best,
JP
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Hey JP
Thank you for sharing honestly i appreciate every message I recieve here so thank you!!
awww goodness you have had to take a long path to your diagnosis!! and im here crying over a couple of months 
im happy you eventually got your diagnosis and found a path to survive my friend 
I hope the same for myself and hope i can keep on supporting my family! If it is MS or whatever is happening to me.
Thankyou for your message i really appreciate it my friend I hope I can be as strong as you when times get tough thank you again
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hey alison100
thanks for your message I really appreciate the reply.
I know I should wait for the proper diagnosis!! but its just human or just me?? Im suffering all these symptoms and I had expected the result to be MS. That DR of mine as rudely as he did say calling me back about MS! Just as much got my brain ticking! I will wait for an official diagnosis from the neurologist but whatever it is waiting for a diagnosis doesn’t explain everything im going through and having to wait in the mean time…just having to do this everyday with no answer is hard atm. I must come across so selfish there have been others who have tread this path and people who suffer so much worse! Im just thinking of so much…sorry this is going to get so personal…basically my nephew is my life and he needs me its a long story…but he needs me and i want to be there for him… whatever im suffering be it MS or not im so weak i cant give him the time he deserves and its depressing me sooo much! thank you for replying and understanding! i honeslty appreciate your message. Thank you
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I hope that you can take some comfort from knowing that there are many people on here who have trodden similar paths and so there is some shared understanding. I have drawn strength from that many times over the years. There is nothing selfish in your hopes and fears - we all have our versions of the same. It’s all about helping each other through.
I have been through the forum and several messages now. You are right alot of individual’s have tread the same path and some who have had to go through a whole lot more getting their diagnosis and the difficulties they have faced! I understand where that strength can come from! and from everything i have read everyone is suppostive including someone like yourself who reached out to me in my post!
I have to get everything confirmed i guess… but my body difficulties and how my DR spoke to me i guess we will find out. if it it is confirmed i will be here seaking advice and help and also helping others with my experience. In the mean time, im just confused and worried about the future.
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