Advice appreciated (undiagnosed)

hi there, this will be my first post, would like to get some advice/help from experienced people,if they have any.I am currently undergoing a nurological investigation and remain undiagnosed. My doctor believes she is about 95% sure that i have MS.

First symptoms back in December were numbness in both legs up to my waist, although i still had perfect motor function.This symptom has vanished. The reason i post is because of my current symptom. The only symptom i have at the moment is that dizzy/lack of balance and coordination sensation. Its every day, all day, and it gets worse when i run. What are my options if any? Can this be dealt with?

Hi Raymond, awful symptom and I sympathise. Unfortunately it is a common symptom with MS. You’re going to have to wait and see what neuro says and what type of MS you have.

In my experience nothing helps with the dizziness/balance stuff except rest. Different drugs are used for the different types of MS so, for instance, if you are diagnosed with Relapsing Remitting MS (RRMS) there are more drug treatements than for the type I have (PPMS). But not sure if any of them help with dizziness (perhaps someone with RRMS could advise here please?).

The reason why you’re getting it worse when you run is because all MS symptoms are worse when we are fatigued… and I have found that dizziness in particular will show up with fatigue. I’m not saying you shouldn’t get exercise, because exercise is good for MS, but you need to start to learn to pace yourself and not get over-tired. For instance, until you get this dizziness sorted, maybe you should be walking and not running… or slow your running down and cut down on distance.

Hopefully you’ll get more info from you neuro soon, but in meantime, try and rest more and avoid stress as much as possible (also makes symptoms worse).

Hope this helps,

Pat x

its very annoying, only running 2 miles and im puffed out. I feel like if i stop running then it’ll get worse and i’ll start to lose the ability. Everyday i check on the internet for “new developments” on the the treatment front but the only thing i seem to be learning is that this desease will get hold of you and that it wont let go. Thanks for your input pat, i’ll just need to wait and see this doctor, and spin the dice yet again.Hopefully this time there might be some good news.

Hi Ray,

I have RRMS and I completely agree with everything Pat has said, it’s very good sound advice.

I know it’s frustating but on the days you don’t feel right you need to let your body rest, trust me. Otherwise the next day you’ll feel worse! On a bad day I get dizzy walking to the post office. On a good day I can walk the dog for hours. However I can’t go down the stairs (anyday) without the vertigo- I’ve quickly learned why the bannister’s there!

Just wait and see what the doctor says, don’t google too much it will stress you out and listen to your body!

Sarah xxx

Hi Raymond, and welcome

As Pat said, vertigo is very common in MS. There are things you can try to help it - meds like Stemetil (see your GP) and physio exercises called Cawthorne Cooksey (ask your GP for a referral to neurophysio) can make a big difference.

It’s also very possible that the vertigo will disappear like your numbness did - fingers crossed!

Exercise is good for MS, but it’s important not to exhaust yourself, to stay well hydrated and to stay cool so you don’t temporarily exacerbate your symptoms.

Don’t be too disheartened about the chances of new treatments - 20 years ago there was nothing; now there are 6 main disease modifying drugs and more in the pipeline plus the possibility of stem cell treatment in the near future. We may not have a cure yet, but the newer drugs are getting close!

Karen x

PS You should see your GP about your vertigo anyway - to rule out non-neurological causes - you never know, you might have an ear infection!

As Karen (rizzo) said a good physio can help with dizziness/balance issues, they should also be able to give you advice on what would be appropriate exercise. Neuro physios are good for people with neurological conditions as they have a better understanding of the little foibles of these diseases. Your GP can refer you for physio.

Good Luck!

thanks for your input people, some good advice. I have my first appointment with an ms nurse in may, i’ll ask her about it. Dont think id like the drugs, if i cant drive or drink. To be honest lately im just so depressed, im 23,just lost my job, and im strugglin to deal with the idea that my life as i know it may well be over. This disease is stopping me from living my life, all my plans and ambitions are slowly being taken away. I just want a fair crack. Really need to stop feeling sorry for myself and get it together but its hard to just flick the switch

hi…sorry to hear of your probs…can sympathise re vertigo…but as others say it is treatable but it can take time…so see how you go…good luck with the investigations…I know it may feel like your world is turning upside down…but hang in there…you will still be able to have ambitions and dreams to fulfill…whatever the outcome but you may have to re think some of them. the vertigo can be bad. and I found when it flared up that I was very limited but you can get your gp to give you some antihistamines or try bee pollen from holland and Barrett…as long as you are not allergic to bee stings. have they checked your ears? sometimes crystals in there can move and cause vertigo…certainly try and get refered to a physio who is trained in the special exercises…worth a try… I think until your test are done see this time as time out…and ask the ms nurse any questions you have… let us know how you get on… em

Hi Raymond & welcome

You’ve got an awful lot on your plate at the moment so it’s a no wonder you feel like the bottoms dropped out of your world. But it won’t be like this forever, keep your plans and ambitions firmly in your mind because they’re still achievable.

As others have said, make an appt to see your GP regarding the dizziness. I know you’ve not been formally diagnosed with ms yet and yes it could well be related - but it might not be. Either way, something like stemetil may well help.

When you see your nurse tell her what symptoms are particularly bad - there are lots of meds available and they can make a big difference to how we feel on a daily basis. Make a list of questions that you have so you don’t miss anything out.

Sarah has hit the nail on then head - listen to your body. It doesn’t mean you have to give up running or any other exercise that you do, but learning what your limitations are at the moment is important. Rest before you get tired.

And don’t google too much. This site and the ms trust has loads of information on new drugs coming out, research and everything else related to ms. Try to stick to official sites.

Go easy on yourself Raymond, wait and see what the final results are and take one baby step at a time.

Let us know how you get on

Debbie xx

Hi Raymond.

I am still in the ‘pre DX’ group but I just wanted to say that it is normal to feel like your whole world has been turned upside down when you have been DX with such a debilitating and unpredictable condition such as MS and even worse when you are struck down in the prime of your life. Depression is very common after a DX. Maybe you could ask for some anti-depressants to help get you through this difficult patch? It is true that MS can take away some of the things you love (I am a cake decorator and noticed a tremor when decorating my sons birthday cake in Feb this year). I am dreading having to give that up, possibly, later on. I also love going to aerobics and go 3 times a week. I haven’t been for nearly 7 weeks now and have gained stone in weight in that time and lost some muscle tone! I am just not ready to go back yet and am terrified of making my symptoms worse by overdoing it too soon.

It is a terrible place to be. I feel for you.

But, you don’t have to give everything up, there are ways around some things. If you do have to give things up you can find something else to replace it. Something that you can do and may find the same level of happiness from the new things that you find. It is not always a case of giving up but adapting. It is a journey, and an unpredictable one, but none of us know what the future holds anyway. Anything can happen to any one of us at any time even when you take MS out of the equasion. Hope I am making some sense here. It sounds OK in my head! lol.

Talking about your worries can also help, just getting things off your chest that are worrying or upsetting you. Maybe someone can even put your mind at rest about certain things. Talk to your GP and MS nurse about the things that are upsetting you the most.

Drugs are there to help and there are side efects but you don’t have to stay on them if they don’t suit you. It’s trial and error.

Don’t give up and don’t lose hope.

I hope you have lots of support around you.