MS - Needing some help please

[Louise Pembroke]

Thinking of you
Lx

[Sweet]

Aww thanks everyone for your replies it was really helpful and nice to know that people here care.

It hasn't really sunk in yet, nurses really are bad patients and me believing the scan would show MS but then being told by a neurologist that i have it is so different. It isn't the same as KC as i was a lot younger then and more interested in annoying the team with questions because i could as i made my parents stay outside!! Now i am 16 years older and not taking this very well. I need to get another appointment with her as i need to see this scan. I can't believe it because it is just being told to me. Have definitely learnt something here though, to stop self diagnosing myself as it just might be the truth!

I am now waiting for the specialist MS team to get in touch with me along with the MS nurse. They should be really helpful and advise me on any treatment or medication.

I am going to inform the DVLA as i know i should. Am not sure how car insurance works, as i don't have a car right now but am hoping to travel to Scotland in the summer with my twin sister. Would i just need to inform her insurance when they add me on her policy for the weekend?

Oh well ... all i know is that life could be worse I've already been through a long spell of blindness, i'm sure that periodic numbness isn't quite the same and i can deal with it. Recently i know that MS was added as being covered by the discriminations act so work can't sack me for being off sick with it. Now i guess i am covered for that and KC so i should stop complaining!!

Thanks again all and i will sort myself out real soon and reply to posts here

[jayuk]

Claire

Sorry to hear this.

Excuse the ignorance, but are there stages of MS? etc? If so, Im assuming you are at a stage where it can be controlled etc?

Jay

[Michael P]

Sweet, if you drive your sister's car, her insurer will need to know about your medical conditions and I believe they will require confirmation that the DVLA have agreed to you having an unrestricted licence.

I recommend that you proceed as outlined in my previous posting as soon as possible.

[Sweet]

Jay,

I have been looking online and yes there are stages of it. I haven't been told where i am yet am waiting for the MS specialists to contact me. I am going to think about this and what questions i have before i go.

Michael i did think that they would need to know and indeed i would need some proof of my illness. I need to get on this asap. My sister is really worried as there is a 20 - 30% chance of identical twins having it. As with KC though there are no real genetic links so i think she needn't worry unless she gets some numbness.

Thanks everyone!

[Lesley Foster]

Hi Sweet,

Hugs coming to you and 'arrows' going upwards.

Lesley.x

[Mandy]

Hi Sweet

Thinking of you.

If I come across anything that I think you might find useful, I will be sure to let you know.

Take Care

M

[Val G]

Sorry to hear your news Sweet. I hope you can still manage all that you wish to do. X

[BusyLizzy]

Hi there,

I'm in the "awaiting diagnosis" stage for MS, otherwise known as "Limboland".
I've been part of the MSSociety forum for two years, and have had masses of support and learned a great deal during that time.
I had a brain MRI scan two years ago, and am awaiting lumbar puncture/MRI of spine.
At the moment I have injections of hydroxocobalamin, which help with the pins and needles.
These are commonly prescribed to people with MS. It would be worth asking your GP about them.

Please feel free to get in touch with me.
There are a number of people on the MSSociety website who know a great deal about all aspects of the illness, and how to deal with day to day life, including DVLA, insurance, etc.
One of them is called George. He is a mine of useful information!

I don't know what type of MS you have been diagnosed with. Is it Relapsing-remitting/Primary progressive, benign or secondary progressive? Did it start with optic neuritis? What were the first symptoms?
Depending on the type of MS you have, you may be eligible for treatment. Before you have a definite diagnosis of MS, you need to have had two clear episodes and more than one lesion show up on an MRI scan. Once you fulfil these criteria, you are eligible for treatment with Disease-Modifying Drugs (DMDs). You can also have an MS nurse (few and far between!) who will answer any questions and provide you with information.

Please do get in touch. You will also find me on the MSSociety forum under the same username: BusyLizzy.
http://www.mssociety.org.uk

[BusyLizzy]

I just wanted to add that on the MSSociety website, although you might be drawn to the New Diagnosis/Limboland page, the Everyday Living forum is often where you will find help from people who know all the ins and outs of it. So be sure to post there, too.

I have found it a lifeline and made some wonderful friends!