Last reply 7 months ago
Newly diagnosed

Hi everyone I’m new on here I’m 34, I reckon I’m I’ve has ms at least 10 years and did not know had a episode of optic neuritis 10 years ago fifty per cent vision reduction in the eyes went to every optician , eye specialists and they saw nothing it cleared up on its own after 2 weeks also had a mri up showed nothing, I put it down to stress but always wondered what that was that had happened to me ,in the last 10 years I’ve just had some tingiling in the feet some numbness but just thought bad circulation nothing major , until this year Jan 2018 I got spasms head to toe and tingiling everywhere, that lasted a couple months then came back in May, that’s all died down a lot those symptoms, I got diagnosed end of October 2018 with Ms it was a relief as a lot of my doctors he palmed me off saying it’s just anxiety but I knew it was not ,I thought it was motor neurone curtesy of Google lol then started feeling it was possibility ms. The last month or so my vision is slightly off almost like I’m tipsy ,no way as bad as the episode 10 years ago and a dizzy feeling, I’ve met the ms nurse twice who seems to really know her stuff and said steroids she would not give to me as I’m not that bad, she said norm these things subside on there own, I will be seeing the Ms neurologist for the first time mid Jan, I feel I’ve been waiting a long time after been diagnosed 3 months to see him have tried everything to get earlier appointment and nothing, is that a normal waiting time,? what can I expect at the first consultation?, am I relapsing or secondary ms? and how long did it take you all to get on medication once you had the first appointment? and has medication helped you ? IM trying to stay calm but I’m frustrated that every appointment seems to be such a wait, thank you sorry for long info X

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glawsdan
7 months ago

Hi @melmel1

I had to pay and go private for my first appt (same consultant that I get under the NHS).

In order to speed up the prescription of Tecfidera, I paid for a second private appt.

If memory serves I was taking Tec about 3 months after initial diagnosis.

Drug seems to be doing its job. No perceived relapses since starting Tec.

In my experience length and subjects covered in consultations to a large extent are determined by you. I would go to the consultation with a list of questions you have had time to consider. Neurologists are extremely busy people(I don’t need to tell you that as getting an appt is so slow!) you may present to them as a very straightforward case, as such the list will ensure you get what you need from the consultation. They may refer you to your MS nurse on some matters, but there’s no harm in asking.

All the best

Dan


melmel1
7 months ago

Thank you for your reply,I have a appointment mid January, IM going to ask him what happens next and if he has a massive wait to see him again after my January appointment I was thinking this crazy idea of somehow getting my details passed on to a private place and some how getting the medication from them then goin back to my nhs one because I feel this waiting game is to long and it’s really concerning me. Xxx


bernadette
7 months ago

Hi @melmel, very sorry to hear about all your symptoms, and your frustrating waits.
I agree with glawsdan that the subjects covered in consultations are likely to be determined by you [sometimes i have wondered how many specialist Drs justify their salaries] but onwards and upwards i tell myself!
better to be on a DMD than not in is the opinion of the more proactive and up to date neurologists so worth researching prior to your appointment and make clear what you want and by when.
if they continue to be slow, once you have started on something you have the option of changing to another centre.
Its a hard slog sometimes but bear in mind only you can make things happen unless you get treated by a centre that has the same priorities as you…i.e you
keep strong [and maybe a little cross]
hope Jan appt brings you peace of mind.


melmel1
7 months ago

Thank you for reply I will try and be a bit more forceful when I go in Jan lol instead of smiling or softly hope things will move a lot quicker after this X


grandma
7 months ago

@melmel hi and welcome to our exclusive club. You’ve already met the most important person, your ms nurse, she will know far more about living with ms on a day to day basis than your consultant, they tend to live in ivory towers and as a rule, because they’re dealing with all neurology disorders from epilepsy to motor neurone disease they don’t specialise in ms, and when they do, like mine who I haven’t seen in 8 years,he’s too busy writing his next epistle to the Lancet and he doesn’t see mere mortals anyway as I’m not important enough so I don’t get seen, but I see my ms nurse who deals with everything. I’m goind to see her on Friday for my 3 monthly appt which I have to have cos I’m on Tecfidera and have to have 3 monthly blood & urine tests, but the Tec has been fine all year and such a change from Beta-Inferon which I was on for 23 years, but after all those years with weekly intramuscular injections 2 tablets a day is a joy. anyway I digress, we’re all quite safe here, whole range of ages and ms types. You can rant, moan, celebrate, cry, we don’t care, you aren’t doing or saying anything that we haven’t done already. We’re always here for a natter, a question, and don’t forget with ms there’s no such thing as a silly question. Avoid Dr Google he’s enough to confuse anybody. Stick with us kid and we’ll see you through.👏👂😍


melmel1
7 months ago

@grandma thank u so much I know what ur saying u did make me laugh lol needed a laugh, how r u coping with ur ms? X


melmel1
7 months ago

@glawsdan thank u I get wht u mean I’m Gona get straight to the point no fluffing around and write all my questions down lol hope ur well x


vixen
7 months ago

Hello @melmel1, it’s great that you found this site which is so supportive of the newly diagnosed. I, like you, feared MND when awaiting diagnosis so in a way, MS was kind of a preferred option. Yes, the main thing will be for them to decide which type you have. There are now treatments somewhere in the pipeline for all forms, some further evolved than others. If I could say one 5ing, please do stay away from Dr Google. With a confirmed diagnosis, stick to official sites like this, MS Society or Trust. The most valuable thing will be to take care of all aspects of yourself. Rest loads, eat well and try to minimise stress and stressful situations, as stress has a real impact on MSers. To prep for your appointment, try to list a chronology of possible symptoms, but keep it short and concise. Take any previous letters or referrals with you, or at least copies they can add to your notes. It’s almost two years now since I was diagnosed and it took a while to process things. I’m doing as well as I could be and, to be honest, because I’ve redesigned life somewhat in this time, in some ways, my quality of life has improved. You will be fine, lots of support here for you x


melmel1
7 months ago

@vixen thank u so good to hear I’m not the only one who feared MND Google was not my friend lol yes I’ll try and stick to short bullet points because I find the time slots for appointments never seem long enough it’s good to know there’s treatments for all ms cause I was not sure there was, thank you for the support X

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