Thank u so much sue I’ll have a read on the LP and scare myself a little more (I’m joking) although I really do feel like I’m in denial - it ain’t happening to me but I guess that’s everyone’s reaction early on !
I’ll keep u posted when I know more, thank u for ur kind support
Hope u are well & wish u a very merry Xmas xxx
Hi greggers and everyone on this thread …
I think we are all in the same boat and paddling as hard as our energy gives us even after the fatigue … lol the first stages to effect me was july this year , took further 3 months to get MRI and lumber puncher done , bloods etc got a appointment a week ago with neuro consultant which i thought i would get meds etc or at least something to start on …but … you knew that was coming … nope just a chat to confirm what i knew and i would be passed on to GP to refer me to MS nurse at some stage and neuro bod would see me in 4 yes i said 4 months time !!!
So LIMBO LAND with everyone else , now you would have thought they would give you something to hold the MS off at bay to take you up to the next appointment at least …but its more welcome to the NHS … and waiting lists …
So dont give up we shall have our own party on our boat and just paddle as much as we can … lol keep your chin up !!
Just hope new year is a good one for us all …
Crazy. I suggest you book an appointment with your GP (if you haven’t already done so) to ask for a referral to the MS nurse. Seems a bloody stupid way to go about things to me, couldn’t the flipping neurologist have referred you to the nurse? It could take weeks (and get blamed on the Xmas post probably) for the neurologist to write the letter, for it to be actually typed (sometimes they’ll say dictated on 3rd April, typed on 24th June, then ‘sent unsigned to avoid delay’!) and then to reach the GP. Who will no doubt be mystified as to why the referral to the MS nurse has to come from them.
Meanwhile, the other thing I would do is to phone the hospital where the neurologist is based and ask to be put through to the neurology nurses. Ask them (you’ll probably have to leave a message for them to call you back) the name and contact details for the MS nurse. Also, whether it’s strictly necessary to be referred to the MS nurse, since the neurologist, Dr Blah, has diagnosed you and you want to get moving on the DMDs asap.
Hopefully one of these methods should get the MS nurse appointment sorted sooner rather than at the snails pace the neurologists sometimes work at.
It almost seems like they’re not seeing you as an individual who’s recently had fairly traumatic news about MS and who needs the next step to happen now, not in a few months time. In fact, I doubt whether they do consider patients feelings at all. I truly hope your MS nurse, when ever you get to see him/her, is one of the good ones.
Sue
well said Ssssue … gold star to you … the painful bit is that its true !!!
Im north london based and the borough im in the neurologist writes to the Gp he then passes it to the borough referal centre and they then make you a place to see who ever … its a long process i tell you , doesnt help for this this time of year !!! Now thats a joke i tell you … ive been told thats the process … believe you me ive tried to bypass it all but doesnt work …
Ian
Well it’s crap. And I’d complain to your hospitals Patient Advice and Liaison (PALS) Service. And probably copy the letter in to the Clinical Commissioning Group (CCG) which took over from the old PCTs. Don’t they love abbreviations, the old NHS?
Sue
Well Ssssue, will be asking the questions tomorrow when I go see the GP … just hope I get an answer as its been so long and getting a bit tired of keep chasing this ,gonna see and get a vitamin D test and my B12 , I know thats gonna be a another blood test … im surprised I have any left in me !!! so will keep you updated , watch this space !!!
I find that mad to be honest, she doesnt know what it is? A lesion is a lesion so perhaps she hasnt seen lesions…You either have MS lesions or you dont.
A LP is not to diagnose MS IT IS to eliminate any other disease that mimics MS.
Now i had an LP and it showed loads of O bands in the csf indicatative of MS BUT they take a blood test at the same time, and this showed inflammation in the blood which made my diagnosis negative for MS on the LP. Hoever, I have been diagnosed with MS, because I had a positive VEP test at the beginning, in between several MRI which showed lesions in 3 different places along my spine over time, and last year another VEP test which showed positive again.
Your neurologist should have simply just sent you a letter requesting a LP without saying anything. It makes it very unprofessional and leaves it open to scaremongering.
My neuologist saw me after all my MRI to discuss the findings and to go through what we did next he was very open and honest with me.
I wouldnt dot the eyes just yet for MS. After 3 ceserians it could be a bladder issue down to that. My daughter had a hysterectomy and believe it or not suffered for a year with terrible incontinence, and UTI, and they finally had to take her in and do special tests and actually found they had made a tiny knick in her bladder very very small and its just now been repaired after six months she is off catheter. She is suing the hospital i dont blame her.
Anyway I would want to know what she saw its the radiologist who determines what is on them. I had one where the radiologist saw a large bright orb on my film and decided it was an ARC on the film, but my neurologist didnt agree, and thought it was a classic lesion.
Sorry just really saying i find it strange your neuro would say that to you, all it does it cause worry.
the LP is not as bad as you read about it lol. xx HOWEVER, my neuro wont use it now for MS diagnosis as it can muddy the waters too much.
well seen… GP and she was shocked i was left in limbo land for so long and is going to chase neuro and find out what MS nurse i will be under ,
well fingers crossed as this started july and scans done in october , results end of november so we will see and i hope she calls , and with good news … we will see .
Good. My fingers will be X’d for you too.
Sue
Hi Ssssue , thanks I did miss a call late afternoon from the GP practice and tried to call sat but phone lines are closed sat even though practice is open for a short time… So its monday im gonna call and gotta wait till then wondering what the voicemail was meaning … I just hope in a way the GP got an answer and there is a light at the end of the tunnel … its strange I sleep and wake up really stiff and end or late that day im so much better its like I had oil on my joints and it works later in the day after use … but woke with num arm this morning which was a bit worrying … but shook that off . So off out or try to and battle the traffic for presents and cards , bar-humbug …lol cheers sue x Ian
Morning all Just new to the forum and in the limbo land of diagnostic uncertainty. I can see that when a positive diagnosis is given the system needs to immediately kick in for support. I can also understand the length of time taken to reach a positive (or negative) MS diagnosis, and this is where I’m at. I’ve been investigated quIte thoroughly by two very kind neurologists following a six week period of numbness a year ago, with positive MRI and lumbar puncture signs. The plan is to wait for another onset, with contact numbers for immediate referral. Good old NHS. I’ve put the potential diagnosis on the back burner for the moment. I think I know the answer, but my query is that, while I’m more at risk of another onset, and that equally I may not have one, is there an average time frame between first and second episodes? Thank you for the information on here from so many members - it’s a helpful way to spend make a sleepless night! Gill
Hi Gill
I’m afraid that with MS, there really is no ‘normal’. So average lengths of time don’t exist. It sounds like you’ve essentially been given a diagnosis of CIS (Clinically Isolated Syndrome). Many people never have another episode. And others do go on to a second, sometimes months and sometimes years later.
Meanwhile, have a look at Clinically isolated syndrome (CIS) | MS Trust This might give you more information.
Sue
Hi Sue, that’s really helpful - thank you. I’ll have a good read of all the links. Gill