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!

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.

Yep that is very much the current thinking. It could just be that they are a statistical anomaly!

I also have it and take the same supplements.

I spoke to my neuro about my children and they said that it wouldn’t do any harm to give them vit d in winter.

Hello, I am just going to sleep now, I will reply to the rest of the questions tomorrow.

My late husband and his sister, who's still alive both developed MS. His other sister has Parkinsons Disease but heir father has looked into the family details and nobody else has had neurological diseases.

@OrigamiParrot

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

I have one child who is 3.

On a bad day, I usually go for a rest so they will play with my DH. I suspect this does not affect her that much as she loves playing with her daddy but I miss them. If DH isn't here I usually sit on the sofa and try and play from there or just put the TV on! She is very sweet and will often put stickers on my legs and pretend they are "plasters" for mummy's poorly legs!

We plan our activities to make sure we don't do too much as that can make me tired, so we usually plan to do 1 thing a day.

We recently went out for a walk and my legs were so sore and tired half way around that I had to stop and she went off with DH and they came back and met me.

I sometimes feel sad that I can't be the active fun mummy that I would like to be.

@peakygal

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

I'm sorry to hear @peakygal

Thank you for your hugs

@BoomShacks

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.

I'm pleased to hear you have found something that works for your fatigue.

I have physio and occupational therapy sessions to help manage fatigue and build up strength which I have found helps.

I was also referred to a "prescription for active living" scheme at my local gym which is where I was allocated a personal trainer who set me up on an exercise programme and I had discounted gym membership for a couple of months. That was really good for me. The hospital physio referred me to the scheme.

I'm going to start work now- will reply more later!

Thank you for sharing OP, I'm glad you're doing ok just now. My DB was recently diagnosed and has very similar symptoms to those you've described. Do you have any advise in terms of support groups / peer support type services? I think he would benefit hugely from talking to others in this situation. Try as we might, there's no way we can truly understand the true impact this has on your lives

@IhaveMSAskmeanything did you have your daughter before or after diagnosis? Would you consider having more children?

@IhaveMSAskmeanything Have you made as conscious decision not to take medication? I have two close friends with MS and both have been prescribed Tecfidera.

I don't have any questions but wanted to wish you all the best. My mum had MS and sadly died when I was 18. When I saw a neurologist following pins and needles (nothing found so must be anxiety!) he reassured me that treatments are so much better now than when my mum was diagnosed in the late 80s.

Your daughter sounds lovely and very kind!

Hi, just wishing you all the best; I am 30 years with MS and currently on a drug trial so fingers crossed for us all!

@TheWindowDonkey

How does it effect your relationships?

I haven't noticed any direct or significant affect on my relationships, however I was diagnosed around the same time that I had a baby and so my life and relationships were changing anyway. I haven't felt any negative change on my relationships. Some of my friendships have deepened where I have confided in people and we have chatted about my fears and struggles etc.

@TheWindowDonkey

And do you think it effects your decision making processes?

This is an interesting one as I think my decision making process now automatically considers the impact of MS without me even realising it! I think it would be fair to say that a lot of decisions I make take MS into consideration.

@TheSpottedZebra

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.

Yep that is very much the current thinking. It could just be that they are a statistical anomaly!

That's interesting, thanks

@PapsofJura

I also have it and take the same supplements.

I spoke to my neuro about my children and they said that it wouldn’t do any harm to give them vit d in winter.

I also give my daughter supplements. I think the benefits of vitamin D are much more widely known now, I was certainly not aware of the benefits until the last few years. I think the prevalence of MS in the northern hemisphere is very interesting.

@EllJ

Thank you for sharing OP, I'm glad you're doing ok just now. My DB was recently diagnosed and has very similar symptoms to those you've described. Do you have any advise in terms of support groups / peer support type services? I think he would benefit hugely from talking to others in this situation. Try as we might, there's no way we can truly understand the true impact this has on your lives

I am a member of a few groups on Facebook, I joined loads initially but I recently left a few to have a few core groups that suit my personal style. I find them helpful because they offer a means to gain advice and questions on all sorts of topics ranging from symptom management to work to relationships.

I am also a member of an 'OMS' circle. This is through 'Overcoming Multiple Sclerosis' which advocates lifestyle changes mainly centred around diet. It's a WhatsApp group although we have met for coffee as well. This has been great as it was so nice to meet other people in a similar position to me and live locally and we are all patients at the same hospital.

There is a local MS society group to me but I have not joined that although I may in future.

Finally, I met a fellow patient at hospital and we have stayed in touch which has been nice!

[quote DreamingofSunshine]@IhaveMSAskmeanything did you have your daughter before or after diagnosis? Would you consider having more children?[/quote]
My daughter was 9 months old when I had my first known relapse. I haven't decided yet about having more children. My neurologist does not advise against having children.

[quote Family143]@IhaveMSAskmeanything Have you made as conscious decision not to take medication? I have two close friends with MS and both have been prescribed Tecfidera.[/quote]
My neurologist does not currently consider I would benefit from taking a disease modifying therapy (DMT) such as Tecfidera on the basis that my condition is currently stable and taking into account the side effects of DMTs. If they felt I would benefit from them I would take them. If I have another relapse I think it is likely I would be offered them at that stage, the neurologist has advised I would most likely be prescribed Copaxone initially. One of the weirdest things I found after been diagnosed with MS was that I wasn't taking any drugs or seemed to be actively "doing something" to help prevent a further relapse. That's one reason I was drawn into the OMS programme and dietary changes etc as it helps me feel I am actively doing something to help.

I take medication for symptom management as I need them e.g. nerve pain, dizziness.

I think I have answered everyone's questions for now, thanks for your questions and interest in learning more about MS.

Thanks also to those who have shared their stories and well wishes!

@IhaveMSAskmeanything

I think I have answered everyone's questions for now, thanks for your questions and interest in learning more about MS.

Thanks also to those who have shared their stories and well wishes!

Thank you for taking the time to share your experience and story.

Wish you all the very best

Just saying hi from a fellow MS sufferer, your experiences are v similar to mine.
But I escaped the lumbar puncture thank god!