Questions - sensory MS. Memory, dizziness and monthlies.

Everyday living
1

Hello

I have recently been diagnosed with a sensory form of MS. My symptoms are mild and I think I may of had a

relapse in Feb but am currently pretty well. I was wondering if anyone could help me with a few things.

  1. Working with memory problems. I have a terrble short term memory and it has started to cause me to make a

few mistakes in the work place. How do you all cope with memory loss? I now have a blackboard that I use at home

for daily events but at work its much harder to remember things in a manic environment (I am a nurse).

  1. I seem to have real balance problems. I can feel very dizzy but this is very transient. The unsteadiness is hard for me

as I carry my 1 year old I think my centre of balance must be affected and I struggle to walk and hold him without feeling like

I am going to topple over. I struggle going down stairs too. Feel like I have vertigo or something like that.

How do you deal with that?

  1. This is for the ladies - I seem to have a mini flare up of symptoms when I am due my period. Burning legs, headaches, MS hug (maybe

I think thats what it is). What do you do to help this? I am having my coil changed to a mirena one and really hoping that will help.

Could someone point me in the direction of the advice on taking vitamins. I am sure I have read lots of people suggest taking

certain vitamins and I would like to read more about it.

Thank You all very much xxx

Alison.

2

Hi Alison,

Sorry if the first part of my reply is a bit off-topic, but please bear with me. If you look at the top of the page, and click on “What is MS”, and then “Types of MS”, you will see there is no such thing as a “sensory form of MS”. Yes, there are different forms, but they don’t divide into “sensory” and “other”. MS is MS. There is a type called “benign MS”, but nobody can be diagnosed with that at the outset, because it only applies if you have had few problems, over a number of years. When someone is first diagnosed, it’s not possible to predict whether their disease will turn out to be benign or not.

MS can present with sensory symptoms, or motor symptoms (movement) or both. Having only sensory symptoms is good, but doesn’t mean you can ONLY get sensory symptoms, or that it’s a different kind of MS.

I’m not wanting to worry you - I just didn’t want you to feel you’ve got some lesser type of MS, that isn’t quite the real thing, or that your worries and concerns are any less valid than those of anybody else with MS.

As for the vitamins, there are a few popular ones that are thought to be beneficial for MS. Perhaps the most common one people take, and the best supported by evidence, is Vitamin D. Many people with MS are also deficient in vitamin B12.

These are just a couple for starters.

There are lots of other supplements that are popular, and may have a role (some I take myself), but I’ve started off with the big two.

There are also a few it might be best to avoid: in general, anything promoted as “immune boosting” or “immune strengthening”, such as echinacea. The theory is that MS is already caused by an “overactive” immune system, so the last thing you would want to take is anything that might boost it. I’ve no idea whether such products really do boost the immune system, but as it might not be a very good idea with MS, I tend to avoid them, to be safe.

Tina

3

P.S.

Sorry, I just realised I didn’t answer half your question!

Memory problems with MS? Yup! I can’t even remember a question between reading it and answering. :frowning:

If it gets really bad, you might ask to be referred to a specialist psychologist, who can teach you some techniques for dealing with it, but otherwise, it’s just a case of using little tips and tricks you probably do already: lists, notes-to-self, properly maintained appointment diary, that sort of thing.

Dizziness is a symptom I haven’t had very much, as yet. But again, if it becomes serious, it might be worth mentioning to the doc, as there might be both meds and exercises that could help a bit.

Finally, yep - time-of-the-month. That’s probably about the third query on that this week, so a very common issue (but doesn’t happen to everyone). I found going on the pill helped lots. I’ve never tried the coil, so can’t say how it compares.

Tina

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In regard to impaired memory and balance difficulty I have both and this goes better or worse I now know i have a lesion on the frontal lobe and some belive this normally helps with memory in research. Perhaps find out about memory strategies like Tina memtioned because i belive you can train the brain to rewire i have seen research relating. In regard to monthlys I have a good three days before then I get stomach pains and pain everywhere else is worse bit like being on a rollercoaster. Were all going to experience ms in our unique ways and i hope you can take what you need, I find this forum essential for me and I expect all of us on this jourmey take carex

5

Hi Alison,

I’m glad Tina addressed the “sensory MS” issue because I think it will get you in a muddle thinking that certain symptoms are unusual for you. I think she summed it up nicely “MS is MS” and anything goes – we are all different but there’s not a symptom going that somebody on here hasn’t experienced to a greater or lesser degree.

To answer your questions I get vertigo and memory loss but I’m too old (thank god!) To suffer from the monthly problems. I haven’t solved the memory issues but post it notes help. If I don’t write myself a reminder you can guarantee that 5 minutes later it’s gone. People’s names are a real struggle – I try really hard to remember but I just can’t. I read a book years ago that suggested associating the names that you wanted to remember with something else but it doesn’t work for me.

You mentioned being unstable carrying your 1 year old. Please be careful my darling. It’s balance that’s causing your wibble wobble. You can improve this by working on your core muscles. There are some great exercises on core stability at www.mstrust.org

I take vit d and B12 if you Google vitamins and MS there’s loads of info.

Jane

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Thanks everyone. I am 31 - but husband says it is like living with his Nana regarding my awful memory.

Thank You so much for the advice Tina re: sensory MS. Yes the more I read about it I realise that its not a type of MS. I think my neurologist was trying to make sure I realised I was mild and woulnd’t be starting an DMD’s anytime soon.

I have had some motor issues with swallowing and arm weakness so I figure that I am not just in the sensory category.

Thank You all for replies. I find you very helpful indeed xxx