Finally Diagnosed

As some of you know, i have been having trouble since Aug2010, well today i finally had an answer from the neuro.

I have MS.

I had an MRI last saturday, and went back today. I knew something was different, as i see my regular docs guvnor. He explained she had made notes for him but wanted me to run through the last few yrs. I did and he asked how i was feeling today, i explained i did not care what it is, i just wanted a diagnosis. He replied he would give me that after a physical.

After confirming i still have some major left side issues we sat down and he explained the MRI. He said the brain shows up grey on the scan, and problems are shown by white patches. He explained with one white patch a diagnosis is difficult, with 2 a little easier but there are other medical conditions which could also be the cause. My MRI showed multiple white spots all across my brain, and that i had MS. He apologised for news he had given me, but i told him had expected it as a colleagues wife is wheelchair bound with fulltime carer from 30yrs of ms and they had helped with what im going through. He said there was a possibilty of walking aids or wheelchair further down the line but not to look too far ahead.

He has referred me to an MS specialist to evaluate me further and discuss treatment, whether it be injections or tablets. He did however state these may not be successful. He also suggested this site for more help/info. I told him i am already a member.

I asked what type of ms it is, and he replied at the moment relapsing. He also said if i get new symptoms i am to call the hospital and not my GP. Why is this?

My questions are these?

Can it progress from relapsing to another form, or is he sitting on the safe side until i see specialist?

Am i entitled to any benefits? Ive worked all my life but i am struggling to do simple things, and i have a 9yr old and 2yr old boy to look after which is an effort in itself

Am i entitled to a disabled badge?

Where do i go if none of the treatments work?

Some of you guys on here are very helpful, and i hope you can help some more.

Commiserations on the diagnosis.

The main reason why it can be best to call the neuro and not a GP is that PCTs like GPs to have approval from an expert to prescribe meds for symptoms. This means that a lot of GPs won’t prescribe anything until they know that a neuro or MS nurse have said that it’s OK.

If you are having periods with symptoms followed by periods with reduced symptoms, then you very probably have RRMS (relapsing remitting MS). Depending on what you read, you’ll find that between 50-65% of people with RRMS go on to develop SPMS (secondary progressive MS) within 10-15 years. (I recommend ordering some of the free publications from this website and the MS Trust site to understand all of this in more detail.)

As far as benefits go, the main ones that people with MS might be eligible for are ESA and DLA. ESA is for people who cannot work because of ill health. DLA is a non-means-tested benefit which is designed to help people with the costs associated with disability. If you have a look at the DWP website, I think there is a simple on-line Q&A thing which tells you what you might be eligible for. If you are going to apply for anything, I recommend joining the benefitsandwork website (costs about £20 for the first year). The assessment process for these benefits is a complete minefield - having good information greatly increases your chance of success.

The blue badge scheme is linked to DLA in that people with high rate mobility DLA get a blue badge automatically. People who do not get DLA are assessed individually - if you have significant mobility problems then you should get one, but some councils are less understanding than others.

“Treatments” are ruled by NICE eligibility criteria and extra PCT rules. Officially, anyone who has had two “clinically significant” relapses within two years should be offered DMDs (disease modifying drugs). Unfortunately, some PCTs make use of the vague wording and slap on extra stuff like “sensory relapses don’t count” so it can be a bit of a postcode lottery. MS is massively variable so, not unexpectedly, DMDs vary in their effectiveness too. However, there is little point in looking too far ahead - after all, the first thing you try may work brilliantly for you. What I can say is that there are some genuine breakthroughs in the pipeline, so even if the existing meds don’t work for you, there may well be something around the corner that does.


Karen x

Thats great. Thanks.

Im surprised how little is known about this condition in the public domain.

I certainly knew little about, although looking back, the early symptons started about 6 years ago.