Random questions

New diagnosis and before diagnosis
1

Hi everyone,

I have been reading the forum for a few weeks now. I was diagnosed with MS two weeks ago and I was wondering if anyone could answer a few random questions that I have… I don’t feel like they warrant a call to the helpline.

My MS symptoms are mild and this is only the second episode I have had- the first was 15 years ago, so I know that I am very lucky compared to others so far. I am a very active person and have fortunately been able to carry on as normal. My symptoms are pins and needles, some temporary numbness and L’hermittes. My first episode was more severe (foot drag, weakness on one side, loss of movement/ dexterity of hand) , but was treated at the time and I kind of forgot about it, as they didn’t every say what it was for definite. At the time MS was mentioned, but as nothing else happened I was able to put it from my mind. When I got the new symptoms I suspected MS, but was still very surprised when I was diagnosed. I know many people wait a long time. I guess the MRI was very clear- I have lesions on my brain and the previous episode meant a lumbar puncture and MRI too.

If anyone could help with my random questions I’d be really grateful …

  • I have informed the DVLA and my car insurance company, but do I need to tell anyone else- mortgage provider, lif assurance??

  • Do the lesions ever go away? If so, are they dangerous, say if you bumped your head? I train and teach martial arts and I never even thought to ask anything about this when I was diagnosed as everything went out of my head.

  • Also, I had a spa day booked and I’ve read that massages are supposed to be good for MS, but I am a bit reluctant to have one as I don’t like the idea of someone touching my head/neck area. I don’t want to make the L’hermittes worse or do any damage! Is this me just being daft??!

I know some of these questions may seem a bit trivial and I hope I don’t offend anyone. I am waiting on an appointment with a MS nurse, but I may be waiting a while…

Thanks for reading x

2

Hi Kaninchen… and welcome to the forum…

Sorry you have waited for a reply… we seem to be a bit overwhelmed with newbies right now!

Glad you have informed DVLA. You need to check if you have critical illness cover on your mortgage… just in case at some future time your MS gets worse and you need to stop work (that of course might never happen… but better safe than sorry… though I’m not sure if you can get it after dx (diagnosis)… you might have to do a bit of research!).

Lesions can become not active but I think they are always there. So when a lesion is active it will cause you problems, depending on what part of the brain it is in, and those problems will go away or become less severe when the lesion is no longer active. I’m not actually sure if they ever completely go away… but I don’t think they do.

They are not in any way dangerous if you bump your head, or have a head massage, or anything like that. These are tiny scars deep within the brain matter. Your brain is protected by lots of fluid and cushioning and then by your skull which is made of bone… so no, you never ever need to worry about that.

You do not need to worry about being touched on your head or your neck… there is no way anyone can affect your MS by touching you…

…BUT, what I would say, HEAT can make most people with MS feel very poorly and tired and sometimes make other symptoms worse. So if you have a sauna at the spa, if you start to feel dizzy, light-headed or anything that doesn’t feel ‘right’… get out of there and cool down.

You questions aren’t trivial at all. You don’t get dx with MS and then get a degree in Neurology the next day! We all wonder about these things when we are first dx.

I’m glad you are going to see the MS nurse… they really are great and will give you lots of info and advice.

You seem to be taking your dx very well hon… very brave of you… but if you find there are times when you are scared, remember that is a very normal and natural feeling. You can always chat to someone on the Helpline (doesn’t have to be a huge cry for help to call them for a chat)… or you can come on here. We all understand (and it’s not always as busy as it is now… so you should get a quicker reply!!!).

Take care hon,

Pat x

3

Thanks for your reply Pat and for being so welcoming! You have put my mind at rest a bit with regards the massage/ making it worse thing. You’re right- I am very far from being an expert and sometimes don’t understand all this myself, let alone know how to explain it to others! I’m trying to stay positive- I know there are lots of people out there with far worse symptoms and problems. I think it would be a different story if I weren’t still able to exercise and get about etc. I would be absolutely gutted. I have my fingers crossed that my MS will go back to sleep. My 2 episodes both occurred at times of stress, so I am trying to eliminate that as far as possible too.

I know what you mean about heat- my pins and needles were getting better slowly, but the last few days they have been worse. So I will definitely take care if I go anywhere near the sauna or steam room!

When we took out our mortgage they wouldn’t give me critical illness due to the first epsiode I had already had, so I guess that’s one less thing to do!

Thanks again for all your advice and kind words,

xx

4

Completely agree with Pat’s wise words.

Re spa days, my policy (which I could not possibly recommend to anyone else) is to lie outrageously on the disclaimer they make you sign when you arrive to confirm that there has never been anything the matter with you (like having had MS for 14 years, for instance).

I am as frank about ‘any other conditions’ as I am about my typical daily caffeine intake and alcohol units per week. Just like everybody else.

Massages are just lovely - I always go for those when the opportunity arises - not often enough for my liking.

I am sorry that you have joined the MS club. I hope that all goes well for you.

Alison

5

I too agree with what Pat has said already, I have only been diagnosed last week and have symptoms like yours other than the foot problems. It’s not the best news to hear but it’s not the worst,it’s not terminal and I think a positive attitude helps, if you ever want to chat message me as we sound like we are at similar stages.I was that shocked when the consultant first mentioned the words ms that my mind went blank and I literally only said “I have 2 boys,can I pass this on to them?” I came away thinking of all kinds of questions! Everyone seems really nice and helpful on here,so you have come to the right place! Cheryl :slight_smile:

6

Thanks Alison and Cheryl

Feeling a bit sorry for myself today, so was nice to come on here and read your posts.

Take care x