Just diagnosed

Hi

Two days ago i was diagnosed with MS. I know a little about the condition as my Mother suffered for 12 years. I think i have the Relapse/Remission type but this has not yet been 100% confirmed as i am still waiting to hear from the MS Nurse and see the specialist. I have been told by my Neuroligist that i would qualify for certain drugs as i meet the criteria required. Last year i was diagnosed with Optic Neuritus and had an MRI but was told there was not sufficient evidence to suggest MS. After the Optic Neuritus cleared up i started to experiance fatigue, weakness in my left leg and Monday (just gone) i woke and found i had facial palsey on the left side of my face. i was admitted into hospital overnight and had another MRI and an MRI on my spine where they found more lesions (hence the diagnosis). I have been suffering with what i can only describe as pressure in my head and blocked ears, i aslo experiance pain in my head from time to time throughout the day (like little, short, sharp, shooting pains) is this a symptom of MS? Are the lesions causing the pain? Any help or advice would be great as i feel abit in limbo until i speak to a specialist.

Many thanks

Kate

Hello Kate, and welcome to the site :slight_smile:

The drugs that the neuro mentioned will be disease modifying treatment / disease modifying drugs (DMDs), which are available for people with relapsing remitting MS who have had at least two “clinically significant” relapses within two years. The best place to start reading up about these is the msdecisions website, www.msdecisions.org. Overall, the injectable DMDs reduce the number of relapses someone has by 30% on average (i.e. across all people who use them), reduce the severity of remainin relapses, delay the onset of disability, can help to slow progression and increase life expectancy.

The process from choosing a DMD to actually getting started on one can take several months, so it’s often a good idea to already have picked one (or at least have narrowed it down) before you see the nurse, otherwise it all gets put back even longer!

Shooting pains are a very common kind of neuropathic pain in MS. (Neuropathic meaning caused by nerves.) There are different theories about why they happen, but ultimately, yes, they are because of lesions, or at least damage caused by MS. There are meds that can help a lot with this, e.g. amitriptyline, gabapentin, pregabalin, so you can always ask for something to help if needed. (These meds dampen down the nervous system and have to be taken every day, unlike regular painkillers.)

A wee word of warning: no two individuals have the same MS, so although you know quite a lot from your mum’s MS, your MS may be very different, so never assume that something is “just” your MS or that, because your mum didn’t have something, that it can’t be your MS in your case. The first one will keep you safe. The second one will ensure you aren’t afraid to ask “silly” questions, which will also keep you safe :slight_smile:

Karen x

Hi Karen

Many thanks for your help and advice. It has helped put my mind at rest until i get to see the nurse/Specialist. My husband and i have already done some research into the drugs available, but will have a look at the website you have provided as im sure this will help us more.

I am trying not to compare my aliments to my mothers as the neuro did tell me, no two MS suffers are the same, but it is difficult…

Many thanks again for getting back to me, it has helped alot.

Kate x