Hi, I’ve recently been diagnosed with MS (in September 2016) but I’ve been left waiting for any kind of treatment or support. I’m Waiting to be referred to a Dr who specialises in MS and up to date treatment… but I probably won’t get to see them until February/March next year.
I just feel lost and frustrated. It seems I get more symptoms day by day and my GP can’t do anything for me as she’s waiting for my treatment plan from the specialist so I’m left in pain. This affects my boyfriend massively as he hates seeing me in pain or discomfort and can’t do anything about it.
It would be nice to know what my future holds either good or bad.
You say you were diagnosed last month,get in contact with the ms nurse at the hospital you were diagnosed at,i was told August 1st i had ms,you won’t need to be seen by a specialist in order to start treatment,the ms nurse will start you on medication,i tell anyone to not sit back and wait for your symptoms to worsen eg relapses,good luck let us know how you get on
Abi. I presume you were diagnosed by a Neurologist after scans/tests etc? I would certainly get in touch with either that Neuro’s secretary or the hospital where you were diagnosed, and ask for a contact number and email address of the MS nurse. You must have hundreds of questions that need answers as well as some support.
Mojave. Last August? Your profile states that you were diagnosed 2001.
Thanks for the replies… I’ve just been given the number for the MS nurse so I will give her a call. I’ve had an MRI scan and a Lumbar puncture that diagnosed the MS.
My neck and lower back have gone into spasms and causing me loads of pain and my GP can’t give me anything for it. Will the nurse be able to give me something?
I don’t know why the GP can’t offer something to help. From September to next Feb/March is an awful long time to wait for some help, support and more importantly, some treatment. In my book, time is Brain! There is always the possibility that a relapse will leave a body with irreparable damage.
I hope you get some joy from the MS nurse. Talk to him/her about DMDs, (disease modifying drugs in case you’re not aware yet). You may know they offer a 50% + reduction in a possible relapse and they can slow progression. Make sure your nurse knows you are not prepared to sit waiting and do nothing until next year. It could be up to you to take charge here! Best of luck.
I think the GP is waiting for the specialist to take the lead the they will be willing to follow, I suppose it’s just as frustrating for them too as they can’t help me. I don’t know about any treatment for MS, hopefully the nurse can help me tomorrow. Tonight I sit here all weak and shaky and the fatigue is like nothing I’ve ever experienced. I don’t know what to do.
I shouldn’t laugh but Majove that’s quite funny! I hope you can change it though.
I’m in a similar boat, was diagnosed with RRMS following Mri last week. Given methylprednisolone for 5 days, and follow up with same general neurologist in 3 months. No ms specialist or nurse referrals, no contact telephone number or information at all. I have contacted ms team myself today to make a referral, otherwise I would be left to God and good luck!
Sorry to hear that KT201, its scary how they diagnose someone then let them fend for themselves for months. I hope your referral to the MS team doesn’t take too long.
If the nurse is any good they will be able to assess how you feel and if they can communicate with a GP they might be able to prescribe some medication to help relieve your symptoms.
Thanks pink abi, I have had an unexpected telephone conversation with the ms nurse today, appointment to see them in Jan, referred to neurophysiology, speech n language, start vit d immediately. Contact them again asap if n e concerns before then. Also spoke GP who was also great. It’s just that they both agreed I should not have had to organise this myself. But at least things are heading in the right direction, thanks for your support. x
