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diagnosed.... now what?

Hi, this is my first post so appologies if this has been asked before.

After 10 months of symptoms & tests galore, it was confirmed by my neurologist on 16th October this year, that I have MS.

He did say he would refer me to an MS neurologist & nurse, but so far - nothing

I haven’t seen anyone, don’t know what type I have & have no idea about benefits or ANYTHING so I don’t know if to scream or cry h, to be honest… mind you I’m more likely to cry at this stage because all I get from anyone I’ve told, is ‘oh, I’m so sorry’… which is a little scary to say the least.

any help is welcomed xPipx

Just to say hello and welcome. You’ll get lots of support here. I don’t know what the next step is as I’m a limbo person but hopefully you’ll hear from the team soon. Do you have a contact number for the ms nurse? Axx

Hi Arwen, Im a limbo person too and have just posted my experience in the forum but as its my first message it’s awaiting moderation! May I ask how long you have been awaiting a diagnosis? Im still very early days and awaiting a full brain scan and further neurological tests but just the mention from my orthopaedic consultant that it could be MS is frightening.

Mark

Sorry to hear of your diagnosis. I have been diagnosed with CIS but have still been given an MS Nurse. I’m no expert on benefits but I think it all depends on your level of disability and income. I’m sure someone else will be able to help you with that question. My MS nurse visited me at home twice, the second time with a long form to complete with all my symptoms and an assessment of my needs. She then decided who to refer me to, eg physio, speech therapy etc. Unfortunately that was 3 weeks ago and I have heard nothing since. I hope someone contacts you soon and you get the support you need.

thanks for your reply… I haven’t been assigned an ms nurse as yet, the neurologist said h was referring me to one but I’ve heard nothing in a month, it’s so frustrating

Hi. I had the same problem regarding the ms nurse, was referred by the neuro and three weeks later I had had no contact. I found out you can self referrer, use the near me function on the top of this website, do a search for nurses in your area and give them a call. It’s not how it should be done but it will get you seen. Ihope that helps :slight_smile: Laura

Hi I hope your wait isnt as long as mine… 6 months to see the ms specialist from diagnosis. I think the usual is 3 months though.

Hi Pip,

Well, as many have said before me, ‘congratulations and commiserations, welcome to the club that no-one wants to be in’!

The wheels of neurology can turn very slowly, so I would suggest that you call your local hospital and ask to speak to an MS nurse. I know that in my area we can self-refer and all they have to do is check that you’ve been diagnosed. They also work closely with the neuros and the ones I’ve met so far have been lovely.

As for benefits, it very much depends on how your MS affects you and your ability to work. You’re welcome to PM me if you have any specific questions.

There are a lot of misconceptions about MS, so just try to bare in mind what you would say to someone in your position, not knowing what you do. I’ve had people send me links to articles where someone cured their MS with diet/exercise/Lightning Process etc. and people dissolving into tears thinking I was going to die. The thing is that your MS is specific to you and no one else.

Also, be kind to yourself. Whether it was unexpected, or even a relief to be diagnosed, our brains are unique and deal with things in their own way, so don’t be surprised if your reaction to your diagnosis changes down the line and accept that you may need help to deal with it.

Mags :slight_smile: xx

Hi Thought I would say welcome…I’ve been diagnosed formally for about 6 months and felt I would share a few tips that I have learned: 1. You have to inform the DVLA about your diagnosis, you can continue to drive whilst you wait (unless you can’t) and they will get info from your neuro and gp and the put you on a three year licence, it doesn’t affect your insurance. 2. If you have a house with a mortgage check if you have critical illness cover, and if so if MS is covered and claim. 3. If you are offered medication use the ms decisions tool(google it) 4. You can access OT/Physio/counselling through your GP and your MS nurse if you struggle with either person. 5. Counselling is good, but depends on you, it helped me wi getting my head around the uncertainty of it all 6. Consider an occupational health Assessment at work, to see if there are adaptation s needed to keep you in work…it is helpful because if you change job you can contact access to work who will help out with getting you things you may need, eg suitable chair, new screen, left handed mouse. 7. Consider joining an MS centre near you, great for complementary therapy and some support 8. Go easy on yourself, when firsts diagnosed I felt I had to do everything and then relapsed again within a few months, not fully learnt my lesson but am trying to take it a bit easier! Finally, good luck, this has been a great place for support, I don’t post much but find reading other posts and knowing I am not alone with the weird strange disease makes it more manageable :slight_smile:

Hi I’m not hijacking your post but I self referred to the MS Nurse the day I got fully diagnosed (this Wed). I just searched on the web and it came up. The MS nurse responsed to me yesterday and she is coming to see me next week, so it can happen quickly. I have cbt councelling in the pipeline so hopefuly that should help. All the best xx

I had a similar wait after my diagnosis, thought ‘this isn’t right’ and phoned the hospital. It took a bit of phoning around but I eventually found out that my notes and referral just hadn’t been posted, or had just got lost! They are being sent out again, so hopefully things will start happening. Some waiting is unavoidable but a month of silence is too long. The adminstrators I spoke to were helpful and friendly, if battling the system sometimes. Ask for your neurologist’s secretary to start with, and have your hospital number or NHS number at the ready! Good luck xx

I’m so sorry to here about your diagnosis. I’m ?MS so not officially diagnosed but have been in the system for two years. Just wanted to wish youy goodluck on the rest of the journey. It’s not suprising your emotions are all over the place at present but this forum is great for support and answering those burning questions you may have once things start to settle in.

Lots of hugs

Reemz

X

thanks for all of the messages, I really appreciate each one :slight_smile:

I got holg of my neurologists secretary & she found me on the computer & told me the lady I will be referred to has been on maternaty leave but is now back at work so I should hear something in a week or 2… If I don’t then I’ll follow the advice & go down the line of self-referral

I came home today to a letter from the DVLA after advising them of the MS & they have turned my world upsidedown telling me my license is revoked. I’m going to see my doctor ttomorrow (got to walk there!) but to be honest I’m not sure he will see me as fit to drive as the dizziness I’m getting daily is a little scary to say the least. we shall see.

I have just had my License revoked by DVLA too, I have to be free from dizziness for a minimum of 3 months, which I cannot imagine being possible either. I dont think it has hit me yet.

x

Sorry to hear that Medion

My doctor would not sign me fit to drive & if they tell me the same I doubt I could go a day without being dizzy - my doctor said its the MS causing it not the medication I’m on.

I’ve since been fighting to get a disables bus pass… a medical professional had to complete the 2nd part of the application form & when I took it to the doctor, the receptionis said they don’t do it there, so I asked her to tell me which medical professional I should take it to if I can’t take it to my doctors who has all my medical notes since birth!!! Eventually they gave in & the doctor signed it, without charging me… how nice of him!

Bcause I work, I’ve contacted Access to work through the job centre & once I’d made an application to get help with getting to work & back, they said they will be able to get my work company to help me with that. So I hope some of this information helps someone

Pip

Sorry to hear that Medion

My doctor would not sign me fit to drive & if they tell me the same I doubt I could go a day without being dizzy - my doctor said its the MS causing it not the medication I’m on.

I’ve since been fighting to get a disables bus pass… a medical professional had to complete the 2nd part of the application form & when I took it to the doctor, the receptionis said they don’t do it there, so I asked her to tell me which medical professional I should take it to if I can’t take it to my doctors who has all my medical notes since birth!!! Eventually they gave in & the doctor signed it, without charging me… how nice of him!

Bcause I work, I’ve contacted Access to work through the job centre & once I’d made an application to get help with getting to work & back, they said they will be able to get my work company to help me with that. So I hope some of this information helps someone

Pip

Oh… I forgot to say… I now have an appointment with the MS neurologist on 27th December at last!

If you have RRMS and you are dizzy when you are diagnosed do the DVLA automatically revoke your licence then? That doesn’t seem fair to me. I was dizzy for 2 weeks with CIS (when I obviously didn’t drive) but I’m not dizzy now. Loads of people don’t drive when they are ill (eg people with ear infections who are dizzy). but their licences aren’t revoked! If you are capable of driving when you are not relapsing shouldn’t you be assessed on that basis (which might not be able to be done immediately admittedly)? If I get symptoms again and am diagnosed with MS it looks as if I will have my licence revoked too otherwise :frowning: I’m so sorry to hear of everyone’s licences being revoked, it would badly affect my life, taking away independence as we don’t have a decent bus service here and I couldn’t get to work/doctors apart from using a taxi.