Forum

just diagnosed

hi , finaly decided to post my story .

Hi after several days of anxiety have decided to post my story.

About a year ago (around easter last year) became ill with vomiting and no balance (vertigoish) . After a week the vomiting stopped but still no balance . Went to doctors who diagnosed labyrinthitis and said that i should go after 2 weeks. went back to work very hard to walk and do most things , using most things to feel or hold as a guide/aid . work and colleague have been amazing through this hole experience .

after 3 weeks went back to doctors to explain that the balance was not getting better who then referred me to a specialist ENT doctor at the hospital . received an appointment for the end of September . Saw the doctor who after doing some test decided to do a MRI and Vestibular test . Then get a phone call to go and see the doctor at the hospital . when i see the doctor it is explained that the MRI has show some anomalies and refers me to the neurologist department .

see a neurologist who was not sure and referred me to a ms specialist neurologist and arranged a lumber puncture as well as another MRI of the hole brain(it seems that they can scan certain areas). In the meantime different symptoms happened (numb from the waist down and losing control of right leg) . saw new neurologist 2 months later who gave me steroids for a week and arranged to see a physiotherapist to help with balance .

Well last week saw the neurologist for a follow up who said that the second scan showed more anomalies in a different area and the lumber puncture showed high .asked what the steroids did and said that they reduced all the symptoms allot . when i had the steroid it was amazing to starting to feel everything again and regain control .

well i have been diagnosed with remitting relapsing ms and have now been referred to a ms nurse and so starts the next journey .

Your story is so similar to mine , all started last year for me !! Shout if u need to ask

anything at all Claire x

Hi Andy, for me I was first focused on working out what was wrong with me so it could be ‘fixed’. Then I had my ms diagnoses.

Then I tried to ‘accept’ the reality of ms. Then I tried to get those close to me to ‘see’ the reality.

Not quite sure where I am right now, other than holding onto taking my magic blue pills (DMD) to protect me in the short term

and trusting that an ‘available’, successful cure will be able to ‘fix’ me before things get too life changing.

Good luck with finding a way to deal with it, for ‘technical’ answers there are some very knolagable, helpful, caring people here.

The ‘brain fog’ thread is also great for a little light relief.

Hopefully Andy, you’ll now be prescribed a disease modifying drug (DMD). These are designed to reduce the number and severity of relapses. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This will give you an idea of what all the DMDs are. You’re unlikely to have a completely free choice of drug. It will depend on how severe your MS is, what prescribing centres have been set up in your area, your neurologists view, and your own choice.

You might also want to have a look at https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis It might help to fill in some of the gaps in your knowledge about MS. It’s a very steep learning curve.

Best of luck.

Sue

hi thanks for the kind comments.

the neurologist has given me the choice off dmd to take so thats the first decision to make .

when i start to take the dmd is something for life ?

it was very hard telling my family , i have known for mouths of the possible ms diagnosis , but I was very surprised how hard it was too finally accept .

i have been surprised at the amount of people who you meet , and see that there is something wrong and when you mention MS the look on there face is shocking . then you talk they seem to have the wrong idea what MS is .

The choice is not for life. You can swap if you hate the side effects, or if something new comes on the market. Or you just think that you’d rather be taking something different, or with a different means of ingestion.

Best of luck with the choice anyway.

Sue