Hello all,
Very briefly, I had a CIS last June, positive lp, lesions showing on MRI. Diagnosed with probable MS. Was told to wait for either a relapse or new MRI , then I would be confirmed with MS. Relapse last November, got steroids. Had scan with dye beginning of March this year. New lesions, some of which were enhanced, so I take it, still active. I called for results and expected to be booked in, told the new diagnosis and given chance to talk about treatment options. But have to wait for my already-booked neuro appointment at the end of August.
Is this normal to wait sooooo long to confirm diagnosis? Will it definitely be MS or could it stay at probable?? I just feel like I am still in limbo and I think 5 months is an incredibly long time to wait for a neuro just to say, yup, it’s MS. It’s not that I want to have definite MS, but I want to put it behind me and move on (as best I can, lol).
Any advice would be most welcome, thank you!
Have you been assigned an MS nurse, mine is brilliant and sorted my DMD meds out, she even travelled the one and a haf hour Journey to show me how to inject. It might be worth ringing your neurologists secretary. Hope this helps, good luck Karen x
New lesions (and a relapse) on top of an existing probable MS diagnosis after one attack would almost always mean that MS would be confirmed, but there is no way of knowing for sure unless the neuro confirms it.
As far as being normal to wait so long, no, it is not normal! In fact, 5 months is terrible!!!
If I were you, I would go and see my GP and get him involved. If the neuro really can’t fit you in before August (which I do not believe for one second), then he can at least confirm things by letter and give you the contact details for an MS nurse.
If your GP is reluctant to do anything, then you could try PALS.
Good luck!
Karen x
Thank you for your replies! I was assigned an ms nurse last year and generally very helpful, but they haven’t returned my latest call. I dread making a nuisance of myself, but I desperately need advice and a chance to chat through my options. Then I will never bug them again! I really wanted them to have a chat with my son (he’s 12) who is in bits, even though I have kept lots from him and don’t rely on him in any way for help round the house, etc. But he’s been surfing the internet and coming up with worst case scenarios.
It just doesn’t seem right to wait five months and/or receive a life-changing diagnosis over the phone or in a letter. I think that’s what makes me angry. I am working, studying towards a degree and running a house as a divorced parent. Surely it is important to receive support to stay that way? Anyway, rant over. My GP is fab, so maybe I will go back to her. I did call the neuro’s secretary and she was surprised the ms nurse hadn’t booked me in to see her, with the Neuro just popping in towards the end to write out a prescription. Hey ho.
Choochy x
Please do keep calling your nurse - believe me, they’re used to it! They have to prioritise their workload, so if you call and then don’t call back again when you don’t get a reply, some of them will assume that it wasn’t all that important so they don’t need to call you any more. So keep trying!!!
I know what you mean about children and the internet - I had the same problem with mine when they got older and my MS got more noticeable. It’s a tricky one to fix 
Telling them that everything will be OK when they’ve just read about wheelchairs and the like is disbelieved in the way that only kids can do, plus of course they know that part of a parent’s job is protecting them so they naturally assume that we’re putting on a brave face. I haven’t read them for a while, but perhaps the MS Trust booklets for kids & teenagers might be helpful? You could have a read before ordering one for him? Or get the adult version if it’s more appropriate? Something from the MSS might work too?
Good luck!
Karen x
Hello,
Update on what I wrote below. MS nurse says according to most recent scan I have MS, but ‘clinically perhaps not’. Could someone please tell me what this means? I meet all the criteria. Where do I go from here?
Choochyx
Hello all,
Very briefly, I had a CIS last June, positive lp, lesions showing on MRI. Diagnosed with probable MS. Was told to wait for either a relapse or new MRI , then I would be confirmed with MS. Relapse last November, got steroids. Had scan with dye beginning of March this year. New lesions, some of which were enhanced, so I take it, still active. I called for results and expected to be booked in, told the new diagnosis and given chance to talk about treatment options. But have to wait for my already-booked neuro appointment at the end of August.
Is this normal to wait sooooo long to confirm diagnosis? Will it definitely be MS or could it stay at probable?? I just feel like I am still in limbo and I think 5 months is an incredibly long time to wait for a neuro just to say, yup, it’s MS. It’s not that I want to have definite MS, but I want to put it behind me and move on (as best I can, lol).
Any advice would be most welcome, thank you!
I have absolutely no idea what “clinically perhaps not” might mean given the fact that your MRI meets both space and time criteria (sufficient lesions in the right places and new lesions) and you have had more than one attack. What else might they wait for?! (I’m tempted to write “Doh!” after that, but I guess I could be wrong…)
Perhaps the nurse was just hedging her bets because she doesn’t actually know, or have the authority to diagnose you?
Karen x
Hello,
I think I have come to the end of the road. I have completed each step that the neuro said but each time I do, the goalposts are changed. I now fulfill the criteria and more but I don’t fulfill the observation and clinical part. So I should dismiss the fatigue, the nerve pain, the foot drop and the constant buzzing in my arms and legs.
Thank you all for your help. For my sanity I won’t be pursuing my diagnosis.
Choochyx
Hi there, was wondering if Rizzo is still on here? I haven’t been on here since 2012. Basically I was diagnosed with probable MS 10 years ago now and as as result of my MRIs which showed demiylination on both brain and spine, resulting in footdrop and a weak right arm. This has slowly become weaker over the past 10 years and the neurologist discharged me last year having had another MRI which showed no change. (which was good news).
Last summer I walked quite a long way and tore the meniscus in my good leg. I have gone along the Musco Skeletal route and they have referred me for Hydrotherapy and physiotherapy to try and strengthen the muscles around my knee. I am currently in week 6. of Hydrotherapy which is brilliant but leaves my muscles feeling very sore. I now have pain and stiffness in both legs and the muscles in both lower legs hurt all the time. I have stopped taking Naproxen as they don’t seem to do anything. I also tried Cannabis Oil and Turmeric but to no avail. I can not walk very far at all now. I have tried to help myself by taking up Tai Chi (which I find very difficult due to balance and weak muscles) and I am beginning to think that this may not be due to my knee joints but could be MS related.
Depending on how I feel at the end of physio I am wondering whether to ask to be referred back to a Neurologist? I should add that I have moved to a different area and would have to see someone different. Do you think I should see a Neuro to check?
Thanks for listening!
Hi
Karen (Rizzo) doesn’t come on the forum any more.
If your neurologist discharged you last year following another MRI, it sounds like s/he didn’t think you had MS.
However, the best thing to do if you are concerned, is to see your GP, explain all that’s happened before and what problems you are now experiencing. Ask him/her if referral to a neurologist is possible / a good idea.
Sue