NEW DIAGNOSIS ....CONTINUED

New diagnosis and before diagnosis
1

Hi all,

I last came on when I was newly diagnosed. I must admit it has been a bleak few weeks. I have gone through every emotion possible. Anger…sadness…loneliness…despair etc etc

I have finally accepted that this is happening and I just have to deal with it!

I have an appointment at the Queen Elizabeth Hospital Birmingham (any views on this would be helpful) It is miles away from my home in north Birmingham but apparently the only place available. My appointment is the 29th Nov and I am not sure what to expect?? What wil they say? What should I say? How do they decide what type of MS I have?? Everyone tells me that I should apply for something called PIP because I am unable to work but I am not sure what this is? I have looked on the Internet but to be honest I have been so poorly of late.

My own Neurologist has put me on these tablets called Galopentin for my restless legs which cause me huge distress. They have helped but turn me into a zombie!! Lesser of 2 evils! I refused the steroids because of the side effects but I am not sure if this was the right decision.

All views and help would be gratefully received.

Many Thanks

Julie x

2

Hi Julie

I have no experience of Birmingham hospitals, but I’m sure others will fill you in.

With regard to your first appointment, to be honest, they can all be different (is this a first appointment with an MS specialist?). The only thing that seems standard is that the neurologist (similar to all first appointments with MS nurses, all doctors, all services) ask you to tell them what you see as your medical history. So they’ll want to know what your first symptom was and when, what happened next, blah blah blah. Then they’ll probably talk about your test results.

It’s very likely that you’ll be diagnosed with relapsing remitting MS. A large proportion of us are.

Assuming this is what the neurologist thinks, the next step will be to discuss DMDs (disease modifying drugs). So it might be useful for you to have some familiarity with the main ones in advance. Have a look at the decision tool on the MS Trust website: MS Decisions aid | MS Trust

You should also be given contact details of an MS nurse who deals with a lot of day to day issues. A good one is worth her weight in gold. That’s who you’ll probably find to be most useful when talking over DMDs and other symptom control drugs as well as referrals to for e.g. physiotherapists and other specialist services, depending on your needs. Hopefully you’ll get a good one who you get on with, chances are you’ll have a relationship that lasts for years. (Mine sadly died earlier this year from cancer, she’s still much missed.)

With regard to benefits, PIP is not awarded because people can’t work, it’s for care and mobility needs. You could be claiming Employment and Support Allowance (ESA) if you’re unable to work. But have a look at the CABs guides to benefits in the first place, that’ll give you some idea: Sick or disabled people and carers - Citizens Advice

When you see your neurologist, you should talk about the drugs you’ve already been prescribed. If Gabapentin is not working for you because of side effects, you should be able to swap to another drug that suits you. Maybe Pregabalin? Ask the neurologist you see in November. But in the meantime, if you already have access to another neurology service, see if you can get the prescription changed. A month is quite a long time to take something that makes you feel so bad.

It’s a pig of a disease, and you’ll find out more as time goes on. At the moment, everything is new to you, so you’ll find that everything seems difficult and unnerving. With this website (use the Everyday Living Forum too) if you have a question of a problem, just post on here and someone will try to help.

Sue

3

Hi Julie

The QE is fantastic, I had my lumbar puncture there and they took such amazingly good care of me that I quite enjoyed it! It’s almost an hour away from where I live, but when my GP heard that was where I was going, she said that if the same thing happened to her, that is where she would want to be treated. It is very highly regarded for neurology and the MS Consultants there are brilliant. You are in very good hands. If you have problems getting there, talk to your local community transport service or your local branch of the MS Society as they may be able to help you.

As Sssue says, you need to take a concise history of symptoms with you to help the consultant.

If you really don’t like the Gabapentin, talk to your GP or MS nurse about switching to Pregablin/Lyrica. My husband says I am much more myself on Pregablin. You don’t have to come off one before taking the other, you just do a straight swap (expect the Pregablin is just twice a day)

Feel free to message me if you want to chat.

Take care

Pip

4

Hi Sue

Thank you for your reply. I am told that the neurologist is a MS specialist. My symptoms have been non stop for over 6 months. I have new ones such as tremors but my vertigo started over 3 years ago. I have ordered my medical records for the past 4 years and most things have been put down as vertigo. The news things have only happened over past 6 months [pins and needles and toilet problems] etc. I am not sure how long a relapse lasts?

With regards to the Gabapentin, they really are helping with the unbearable restless legs but i understand that I cant be expected to live like this! My GP does not have a clue. I often get given sleeping tablets because I do not sleep well. I have epilepsy too so it has been difficult.

Thank you for the advice on the PIP…I think that is the last thing I should worry about at this time.

I find the invisibility of MS so frustrating. People do not understand and are often very dismissive.

Anyway I better stop moaning lol

Many thanks Julie x

5

Hi Pip

I have been referred to Dr Woolmore. I am most nervous about him asking me to have a Lumbar puncture! I will try and take a concise history but so much had faded into one another but I am picking at medical records to see if I can find exact time frames.

I am worried about travelling to the QE because it is so far from my home and I do not drive. My partner can take me on my first visit but I will take your advice and contact the relevant people.

Thank you so much for your reply

Julie x

6

Messaging you :slight_smile: