I have MS - Ask me anything!

[IhaveMSAskmeanything]

I have name changed for this in case I am recognised.

I was diagnosed with MS (multiple sclerosis) last year. If you have any questions about living, working and being a Mum with MS, please ask away!

How did you find out you had it? Also how long have you lived with it?

Any family history, that you know of?

What does a good day look like?

What does a bad day look like?

What were your initial symptoms?

MS is a horrible thing to have. My late husband had it.l

@DragonLegs

How did you find out you had it? Also how long have you lived with it?

Hello, I found out that I had it after my eyesight suddenly went blurry one evening whilst watching TV. I went to the opticians who referred me to a&e and I was booked in for an urgent (2 week pathway) MRI scan, they were querying either a mass or MS.

Unfortunately I deteriorated really quickly over the course of the next few days, I couldn't put any weight on my legs, had pins and needles down the left side of my body and could not lift my left arm. I was extremely tired and generally felt poorly. I was therefore admitted to hospital for a super urgent MRI which I had the following day and from the results they told me they thought it was MS (definitely ruled out a mass). It was another 18 months before I had a formal diagnosis though. This was partly because my lumbar puncture was negative which is not particularly typical of MS, so I had to be referred to a more specialist hospital for a view.

Sorry @DragonLegs I missed the second half of your question (I am on my phone and I can't see the post/thread very well!). I was diagnosed one year ago this week. The first investigations were about 18 months prior.

@TheSpottedZebra

Any family history, that you know of?

There is no direct family history, however I have a maternal aunt with rheumatoid arthritis and maternal uncle with coeliac disease- Both also autoimmune conditions.

Interesting re family history! I asked that as my friend has MS, as do 2 very close family members and they're taking part in a clinical trial to look into the hereditary aspect.

@formerbabe

What does a good day look like?

What does a bad day look like?

A good day would be one where I can do things that I would like without being too tired or being in pain. I have adapted my routine to manage and pre empt symptoms, mainly this involves not doing too much in a day, especially walking or things that involve moving around a lot especially going from sitting to standing a lot, as this makes me feel dizzy and tired.

On a bad day, I go to bed for a rest or have a lot of pain in my legs.

However I am not currently 'relapsing'. When I was relapsing I was hospitalised as I was so poorly and then on discharge I mainly stayed in bed or on the sofa for a couple of weeks. I couldn't stand to have a shower or make a cup of tea and as my eyesight was affected I couldn't read a magazine etc. It was hard.

@TheSpottedZebra would be interested in this trial details - my dad and his sister have MS.

@TerrifiedandWorried

What were your initial symptoms?

My initial symptoms which led to my diagnosis were a sudden blurring of my eyesight, followed by a weakness in my legs, pins and needles on one side of my body and a weakness in my arm so I wasn't able to lift it.

However, on reflection, I have had some other symptoms in the past that I had not realised where significant, most notably I went through a phase where my legs would give way when I stood up. At the time I just assumed it was a trapped nerve or something like that and never bothered seeing a GP about it! It only lasted about a week but now I can't believe I just ignored it!

Sorry realised my question was the same as PPs.
Did you have any visible lesions when they scanned you? I'm guessing not if they needed to do lumbar puncture.

@tillytoodles1

MS is a horrible thing to have. My late husband had it.l

I'm sorry to hear about your husband

Do you take any medication or supplements to help with your symptoms? Is there anything prescribed on the NHS? I have Lyme disease (very similar symptoms to Ms) and I don't get any help at all from the NHS.

What age were you when you experienced your first symptoms?

@TheSpottedZebra

Interesting re family history! I asked that as my friend has MS, as do 2 very close family members and they're taking part in a clinical trial to look into the hereditary aspect.

That trial sounds very interesting.

My neurologist told me that there is no increased chance of my child developing it, but that is not consistent with what I have read.

@TerrifiedandWorried

Sorry realised my question was the same as PPs. Did you have any visible lesions when they scanned you? I'm guessing not if they needed to do lumbar puncture.

That's no problem

Yes, I had visible lesions on the brain but none on the spine. The initial brain scan showed enhancing and non enhancing lesions which was indicative of an active episode (the relapse) along with evidence of previous relapses.

I think the lumbar puncture was done more to close the loop in terms of investigations and I was in hospital anyway so it was easy to organise. They have offered to repeat it to see if it would be positive now a few years on, but I have declined as it would not change my management plan and so I don't see the point!

How old are your kids, and how do you find that MS affects your parenting, on bad days?

@BoomShacks

Do you take any medication or supplements to help with your symptoms? Is there anything prescribed on the NHS? I have Lyme disease (very similar symptoms to Ms) and I don't get any help at all from the NHS.

I don't currently take any medication but in the past I have been treated with high dose steroids (during a relapse) and medication to help with nerve pain and dizziness. These were NHS prescribed.

I take high dose vitamin D, omega 3 and a good multivitamin.

I'm sorry to hear you have Lyme disease and I hope you get some help with it

@EhUp

What age were you when you experienced your first symptoms?

I was 35 when I had my first known relapse and about 32 ish when I first had symptoms which may have been related.

My late husband had MS (not cause of death) he wasn't even a year diagnosed and it was horrible to see what he went through. Hugs OP x

Thank you @IhaveMSAskmeanything. I'm currently receiving private treatment for it (at a cost!).

That's really good you're not having to take any medication at the moment. I take the same supplements as you and find them really helpful. Herbal medicine has also been really useful for me in order to help with pain and fatigue.

How does it effect your relationships?

And do you think it effects your decision making processes?