New user

New diagnosis and before diagnosis
1

Hi Everyone,

I have only very recently after an MRI scan been diagnosed with MS, indeed, I have not yet seen my consultant after the diagnosis. I have not been walking well for some years and have been tripped by my right foot which has caused me to have heavy falls. My balance on the right leg is poor I have also suffered a burning sensation in my thigh and pain around my right hip. These pains have at times so severe that I couldn’t stand or walk. I have been prescribed Neurontin which helps with the pain and I am walking with the aid of a stick. but don’t know what to expect when I see the consultant. The pain is bad on occasion and my right leg occasionally cramps really hard causing my thigh to lift and my calf to flex. I Will ask about obtaining a blue badge for my car and if I can claim disability.

Any comments and replies from anyone would be appreciated.

Best wishes to all

2

hi blazer

sorry that you have been dumped in our club!

when you see your consultant, tell him/her about your difficulties walking.

ask to be referred to a neurological physiotherapist.

the consultant should introduce you to your ms nurse and offer a choice of DMDs. (disease modifying drugs).

the hospital and neuros have little to do with blue badges or benefits.

you need to apply to your local council for a blue badge.

you can apply for PIP (personal independence payment), which replaced disability living allowance.

get help with the form from welfare rights or citizens advice bureau.

the form has been designed to trip you up.

the advisors know the form well.

the key words for each descriptor are that you can do a thing safely, reliably and in a timely fashion.

so apply these 3 points to every question.

for example Q - are you able to shower and dress yourself.

A - i can shower myself some days but then need to rest for 15 minutes.'some’ covers the reliably element.

rest for 15 minutes covers the timely fashion element.

i can dress myself with some difficulty (eg fastening buttons) then need to rest for 15 minutes.

if i don’t rest i am at risk of falling. this covers the safely element

and so on.

www.benefits and work have an excellent guide that you can buy for £20.

worth the money as it also covers employment support allowance and other benefits.

get help with the forms and good luck.

3

Hi,

I’m sorry that you have been diagnosed, however it’s often a relief to finally have an answer to why you have been having these problems. Carole has already given you some very good advice.

When you meet your consultant, take a family member or friend to take notes, as there will be a lot of jargon in a short period, usually about half an hour. No one can take it all in. You should be told what form of MS you have. This is important as it will mean what treatment is available for you.

Please come back to the Forum whenever you want to. It’s a brilliant place to get information or just let off steam. There is more experience, know-how and understanding on this site than a whole room full of neurologists.

Best wishes,

Anthony

4

Hello

In general, when you see the Consultant, you’d expect a physical examination and for him/her to go through your history. S/he will already have seen your MRI images so with all of this, should be able to make a reasonable judgement call as to whether you have relapsing remitting MS (RR), secondary progressive (SP) which is often a follow on after some years of being RR, or primary progressive (PP) MS. This last would be if your symptoms have never had any improvement over a period of years. So rather than having a pattern of symptoms followed by partial or complete remission, there would have been a general progression of disability with no real remission.

Mostly, neurologists tend towards making the judgment call that you are RR unless there is clear evidence from your history and MRI that you are progressive. The benefit of doing this is that you are eligible for disease modifying drugs (DMDs) if you are RR, but not if you are progressive.

So the question would then be, which DMD you should take. When you see the neurologist s/he will have an opinion and will probably offer you a choice of a few drugs. You may find this helpful MS Decisions aid | MS Trust but you can also talk through your options with an MS nurse, who you should also be put in contact with.

As Anthony said, it does help to have someone with you at the appointment. Otherwise the tendency is to come out of the appointment having instantly forgotten everything that was said.

You can of course make a claim for PIP. As Carole said, get some help if possible from the CAB or another welfare rights advisor. It helps to have a basic understanding of the rules even if you get help, so have a look at Personal Independence Payment - Citizens Advice or, consider joining https://www.benefitsandwork.co.uk/ . Carole said they charge £20 for their guides. That’s not strictly correct, they charge for annual membership. Being a member gives you access to their guides, which is detailed, correct and extremely helpful. The £20 is for a years membership.

If you qualify for PIP for mobility, you can get a Blue Badge quite easily. Otherwise, you can still apply but the route to qualification isn’t quite so straightforward. Have a look at your local County, Borough or Metropolitan Councils website for a claim form and their guide to the scheme.

Obviously, you can come to the forum for help. It’s a big change to be diagnosed with MS and will take time to absorb the new reality. There are excellent guides to all the different aspects of the disease on this site, just look at the button at the top of this pages About MS.

Best of luck.

Sue