Hi guys, just wondering my neuro officially diagnosed me with ms last Tuesday and said an ms nurse will contact me as descuss either rebif or avonex with me and sort that out for me, as he wants me on meds by the next two moths! Any idea how long it takes for the ms nurse to contact you?
Hi princess. I don’t know sorry as I met my nurse straight after my appointment with neuro. If you have a number for them could you give them a ring? If you’ve not got number u can probably find it on Internet.
[quote=“Sunflower77”] Hi princess. I don’t know sorry as I met my nurse straight after my appointment with neuro. If you have a number for them could you give them a ring? If you’ve not got number u can probably find it on Internet. [/quote] I didn’t get given a number just told that an ms nurse would contact me shortly and discuss things with me and it would be through her I’d be getting my avonex or rebif once I’d decided which! I really wanna start treatment ASAP as I don’t wnna be having bad side affects around Christmas! xxxxxxxx
Hi Princess I got diagnosed 2 months ago and still nothing from my MS nurse. Im contemplating calling the hospital tomorrow to find out when il be hearing from the MS nurse x
I would phone the hospital that you come under and ask for the ms team and make sure they’ve got your details referred. I saw my ms nurse within a week of being diagnosed but that’s because I did the ringing around and contacting the hospital ms team and getting hold of the ms nurse in my area
[quote=“SammieJo89”] Hi Princess I got diagnosed 2 months ago and still nothing from my MS nurse. Im contemplating calling the hospital tomorrow to find out when il be hearing from the MS nurse x [/quote] Gosh that’s a long time! Are you in th uk? I just wanna get my meds started and get it out the way!! Xxx
Yea Im in the West Midlands. My neuro wont give me meds either because Im within child bearing age and they would rather not treat me if they dont need to xxx
[quote=“SammieJo89”] Yea Im in the West Midlands. My neuro wont give me meds either because Im within child bearing age and they would rather not treat me if they dont need to xxx [/quote] Oh that sucks, how many relapses have you had? I’ve had about 3 -4 in the last year, a bout of optic neuritis, left sided body numbness and weakness twice and I’m suffering from spasticity in my left side too. My neuro was keen to get me on meds within the bet 3 moths but said it will be with an ms nurse that I get them and lessons how to use them! He’s also ordered an MRI of my spine with contrast dye an booked an appointment with him in 3 months xxx
My case is mild but am relapsing at the moment. Numbness in legs, tingling in spine hands and face and lots of dizziness Just cant seem function. I always struggle with fatigue but this is my 3rd relapse in 2 years xxx
I’m then that they don’t want you on meds I’m 23 so definitely still of child bearing age (although I don’t want children) and my neuro wants me on an interferon dmd. I’m also surprised how fast I was diagnosed fully as I’ve read it can take a long time. Xxx
Yea mine took 2 years and i was diagnosed a month before my 24th bithday. My gp asked me when it all started what i thought it was and I said MS as 4 members of my fanily have it and she told me not to be stupid it was vertigo and to take tablets so i told her if she didnt refer me id go private so she did. Iv moved doctors since then but would love to tell her how wrong she was!! My mom is on interferon and has been for about 13 years. I remember she used to have to pay for it when she first started on it! How quickly did you get diagnosed? Xxx
Wow! You just really be wanting to give your ex doctor the middle finger now! I know I would! Around a month and a half from my optic neuritis to my official diagnosis, but the day I went and had my mri I was told it could only be ms do knew pretty much straight away! I count it as that as just over a year ago I had a relapse that was thought to be a prolapsed disc and then had no more problems till this June where I was diagnosed xxxxxxx
Hi, I rung the MS Society helpline and they gave me my nurses mobile number and email address. My neuro didn’t contact her for ages so by getting in contact with her first I didn’t have to wait for the referral. Good luck
[quote=“traitsy”] Hi, I rung the MS Society helpline and they gave me my nurses mobile number and email address. My neuro didn’t contact her for ages so by getting in contact with her first I didn’t have to wait for the referral. Good luck [/quote] How did you know which one to ring? maybe I’ll try that tomorrow or Monday! Especially as I’m suffering from the dreaded ms hug at the mo xx
Morning, The lady on the phone took my postcode and found the details of my nurse. I’ve found out recently that I could have Googled 'MS Nurse insert name of town and all her details were freely available there. Or you could try going to the ‘near me’ tab at the top of this website and look for your local MS Society group who will also be able to help. Hope this helps and hope the hug leaves you alone soon!
I found out yesterday my old doctor didnt want me to use the nurse the neuro adviced as there is one closer and has retired before sorting my refferal to my new doctors and ms nurse (i moved as i was dx and had to change gp)! Luckily the hospital are sorting it for me! But my old surgery only decided to help when i cried down the phone. They assured me the letters from the ms nurse to my old gp will be sent to my new gp! What a pickle but its proved its worth chasing it up. Just call the hospital that you go to and ask to speak to neurology department and they should be able to give you the nurses number xxx
I had a leaflet come through today from the ms nurses at the hospital where I have my neurology appointments, on it they wrote in pen on the front to give them a call when I’ve decided on avonex or rebif, so I called and left a message (: at least things can start to become clearer and I can start moving on now. Thanks guys (: xx