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How long after diagnosis did you receive medication?

Hi everyone,

I’ve been following this forum for about a month but this is my first post.

I’m 34 and was diagnosed with MS on November 16th. I was a little unusual in that I received my diagnosis at my first neurologist consult, based purely on my clinical examination. I was sent for a brain, c spine and t spine mri on New Year’s Eve but I’m still waiting on the results. My neurologist was supposed to review the scans last week but I’ve since learned that she’s been off sick so I have no idea whether they’ve been looked at yet.

Since my November appointment I’ve developed new symptoms but I’m not sure what to do next! I was told that I was being referred that same day to the MS specialist, and that it was about a 6 week wait - this fell around Christmas time. I now know that my referral was not sent to the specialist until December 14th and that he was on annual leave at this time. I still haven’t received an appointment to see him and I can’t help but think I should be on medication or at least have discussed the options by now. I’ve just been left with the initial diagnosis and have been given no other information apart from being directed to the leaflet stand upon leaving that first appointment.

I’ve looked up the phone number of the MS nurse but they haven’t returned my call yet. My question is how long did you wait from diagnosis to discussing/receiving medication? I’m just feeling a little bit lost! X

Hi I was diagnosed on 24th October 2017 and start my DMD’s today. I didn’t get a diagnosis until after the neurologist had seen my mri and lumbar puncture results (the whole process from first neuro appointment to formal diagnosis was 10 months)

I imagine that your neurologist will want to see the results of your MRI before proceeding. I know it seems to take forever but hopefully if you were referred to the MS Nurse on Dec 14th and were told it was a six week wait you will get an appointment soon.Perhaps if you don’t hear by the end of this week give them another ring (fingers crossed)

Take Care.

i can top you both …lol i had my first attack back in july 2017 , didnt have MRI for the head an spine till october , was told i had MS in november 2017 , and still waiting for a MS nurse and meds and now its end of Jan 2018 … i think it seems to be the norm … which is a shame really as we just want to get on with out lifes …been off work now for 7 months … and not sure where to turn … NO DNDs or nothing just tablets for my spasms in my legs which i get … but now i believe i have had relapses about 4 times now and still waiting … had a moan to my GP and she agreed but its the system … its wrong … so we are put on the back boiler it seems , anyone else had this problem … plod on !!!

Hiya

8 years.

Ellie

Hi there, it was three weeks for me, from getting diagnosed to getting a DMD. That might be a bit of a record!

Anjo

Anjo … well done , not sure what your trick was but well done … 3 week!!! was that in the uk ???

chocorange … 8 years … you poor thing hope your doing better now …

any more on these time scales ???

Rhibaker83 as you can see… lifes a box of chocolates …

ian .

skipchaser

better now?! depends your your definition of better?

i had 13 attacks during the first 2 yrs affecting various bits of me. neuro was a complete**** still no dmds…

2012 i had one life changing attack-lost vision permanently in left eye-loss os use on use right side (upper and lower limbs) which is a sod as i am naturally right handed! double incontinence. now use a powerchair and have regular carers to help with daily living.

better? no! different-yes! but you gotta play with the hand that u r dealt in this game of life i reckon-the hand that i was dealt is kinda crap-but i have learned how to cheat! i say cheat but i mean accept and adapt. (powerchair and carers for example) if you let yourself become a bitter angry person then u will awfy short on folk around you!

i have been told more than once that i annoyingly positive-i can live with that label!

i am not brushing off the severity of ms-i have lost several friends too early to this label but i learned so much from them and sharing of experiences is invaluable.

hope you dont have to wait much longer for real support.

ellie

Hi ellie ,

Sorry to hear this , but i do believe time scale is a must … and it seems that time scale isnt on any of our sides …

annoyingly positive- sounds good and yes life is a sod and the hand that gives it out can be rather nasty bit of work … , sorry i said or used the word ‘better’… seems a wrong word to say now …

how long you had this pain in the bum … MS !!!. from what age if you dont mind me asking … and where in the country are you based ??

im in london and it just seems there are too many people in this world to be seen in a good time scale … there i go again …time scale .

any way im waffling and im sorry this card has been dealt to you , i use to be a london police officer , but now i know i wont be going back to that job … i so love helping people but the tables have turnned and i need help now …

regards ian

Skipchaser, yes well spotted it wasn’t in the U.K. I am in Sweden. They don’t muck around over here! I barely had time to catch my breath after the diagnosis and next thing you know there I was in hospital getting a DMD.

Anjo

Hi Skipchaser, similar position to you. First attack June 2016, diagnosed End sept 2017. Haven’t a clue about whether I’ll be offered DMD. Awaiting report from last mri, reporting here takes minimum of two months. However, the first Neuro I saw after my optic neuritis and subsequent mri said it was all down to my migraines, when I questioned him about this he referred me to another Neuro, who at least took me seriously instead of trying to palm me off, did more investigations and here I am.

Mhmm. After seeing Anjo,s comment I’m convinced the NHS is broken, not just failing. Seen the consequences of this with my sister, mum, dad and others. I think if you need argent A& E care I.e RTA it’s second to none but after care is definitely lacking. I’m concerned as well about the feelers out there to introduce an insurance type system.

Hi chatterbox ,

seems like we are in the same boat paddling up stream , but you longer … yes the NHS is a broken system and i feel sorry for the men and women that have to oil the cogs every day knowing its a rusting up process …

so you have been on the go from 2016 … now thats bad . it does make you think …ive been lost in the system or no one really knows or cares ,

get on the phone to the neuro and chase it up , to be honest i email them and go to your Gp to get them to chase it up i had a letter yesterday for an appointment for a neuro come through but for what and with whom i havnt a clue but it was refer from GP so maybe just maybe i might have a step forward … but not holding my breath …

hope you get somewhere soon with it all .

Ian

My wife had major problems since early March 2017,Gp suspected and spoke of Ms and Put in for brain Mri and referral to neurology.Saw first neurologist in July who pretty much diagnosed on the basis of history,examination and mri report but he couldn’t actually see scan so not quite official diagnosis.He was going to see us asap to discuss DMD’s but when we returned in Sept he had left. The scans still not viewed by anyone!

Mri scans were viewed and discussed in team meeting a few days later and letter to gp said an appt for MS specialist would be sent through, chased up 2 months later and hadn’t been put on the list!

The appointment is now mid March! I assume the diagnosis will become official at this point and hopefully getting to Dmd stage wont be too much longer from then!

Dear Rhibaker83 and all. Yes agree, the UK NHS is under so much pressure. I was diagnosed privately in May 2017 and was fully diagnosed by the NHS two days ago. Eight week minimum wait for scans and lumbar punctures. Two lots of steroids. Two different neurologist’s (one left and they struggled to reappoint) and out of county services because my county is refusing new patients. I am therefore left with a letter saying that I require Tecfidera for active Relapsing Remitting MS, but I wait now for services in county to take me on. It appears, that the neurologist’s secretary is powerful; when I was told that the wait for a letter to be typed was a minimum of five weeks, I offered to type it myself. It was in the post that afternoon! Without an MS nurse, if you are having changing symptoms, phone the secretary with details and you may be offered steroids? Keep a diary of symptoms. Ask your GP to chase up services too. I am now on the phone every morning until I access services. My last neurologist advised that I write to the local MP. Arrrrrgh! Do hope that you are getting sorted. Warmest thoughtsAli

Just to weigh in with timescales within NHS: unfortunately it seems that it is totally dependent on this postcode lottery the media always bang on about. I’ve got nothing but praise for how the process has worked for me in my area. After receiving formal diagnosis in mid-December 2017 I had my DMD consult today and will be starting the meds (that I proactively chose after reading the MS Society leaflet) in a matter of weeks depending on how quick NHS England process the funding application. As this has all been so quick for me and I’m so new to “the system” I’m not sure what I can offer advice-wise. Don’t be afraid to make nuisance and a noise, you deserve good care!

Dear O173, such a similar wait to mine (see below), keep a diary. Maybe go private £150 approx, to get the initial scan read? I suggest too that you phone that neurologist’s secretary every morning, politely asking if there are any cancellations. I did this for six days in a row. And then, one afternoon I was offered a cancellation appointment. I wish you every success Ali

All, yes I agree it does seem a lottery. I know I’m not lost in system as I had scan to assess lesion progress December. Told 8 week wait for reports, date marked on calendar and I will be phoning then if I don’t hear - I am not waiting for the Neuro appointment in a further 5 months. Met MS nurse mid December, 2.5 month wait and that was with me phoning. As my Dad says, don’t think they will forget you! To which I say, as long as I’ve sort of got my marbles I won’t let them! As you say all the staff are under pressure so it’s no real surprise that we are in this mess. Same in local government where I work, cutting budgets moving the problem to someone else, where it probably takes longer and more money to sort out. All we can do is protect ourselves as much as possible. Good luck everyone.

Now update , first started in july 2017 , after scans and tests diagnoised november , meds appointment feb 2018 but just found out its cancelled till end august 2018 !!! WTF … Really the nhs is failing people like us , the uk is at breaking point …and people are put on the back boiler … so we just sit and wait for our condition to get worse …

I agree with the postcode lottery. Fortunately I’m in a quick postcode covered by the Salford team. My only long waits have been for initial Neurologist appointment (17 weeks) and MRI’s. Once my last results were viewed by a consultant nueroradiologist and back with my Neurologist his secretary called me and asked me to come in the next day. I was disagnosed and the MS nurse was waiting in the room next door I went straight to her and started the ball rolling for DMD’s once the fundings back they will be delivered and she said that shouldn’t take more than a couple of weeks.

I really hope you get sorted soon - thinking of you x