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Possible MS need some reassurance

Hi all, My husband recently had an MRI due to some hearing loss and the MRI showed up some white spots. The neurologist last week said that it was possible MS but given my husband had no symptoms we would have to wait and see. However this week my husband is feeling numbness in his calves and bottom of feet. Does this confirm MS? We are both very scared we have a two year old and one on the way. He is only 33

Hello, I am sorry I can’t give you any answers ,I am also playing the waiting game so at least I can emphasise with you. From my own limited experience, there is a vast network of support groups available which you and your husband might like to get familiar with, if any are available in your area.

Also avaible from the m.s website is a exercise DVD hosted by Sally Gunnell,which I find invaluable and do it everyday,your husband may find the exercise for calf muscles and ankles helpful.I use a resistance band to do mine and it really does help.

I hope this little bit of information may help.

Best Wishes

Linda xx

Thanks that is helpful. Just terrified for the future :frowning:

hi nylon

see your gp and get these symptoms noted on your medical records, which neuro has access to.

as linda says, there are lots of groups.

i like the ms therapy centre. there is usually one in your nearest city.

lots of therapies to try at a subsidised price.

lots of good company (mostly cheerful)

and partners are made welcome.

carole x

My husband has a fairly high powered job. We are both worries (amongst many things) about his ability to stay working. It feels like our future has been tKen away. Are people able to stay working?

It would certainly be a good idea to make sure that these lates strange symptoms are noted by the doc and documented. Neurological trouble is often diagnosed by (among other things) a history of symptoms, none of which is definitive in itself, but which colleactively build into a history that strongly suggests this or that cause. That is why it is important to make sure that the medics have the full picture.

I hope that you get some answers soon. I also hope (of course) that it does not turn out to be MS, but don’t despair if it does - it is a rotten diagnosis, but not the end of the world.

Alison

Dear Nylon,

I was diagnosied with ‘Probable’, after 8 years this downgraded to ‘Possible’ and after a further 7 years have been made ‘Definate’.

My advice is to try to come to peace with the present moment: in which, ‘everything is fine’. You and your husband will be living within a certain ambiguity for a long time. This is, I feel, the new reality that you find yourself in. He may, and hopefully will, have years with no recurrance: perhaps forever! And chances are that you will notice things that may (or may not) be symptoms - as it may or may not be MS.

Ambiguity is hard. My second piece of advise is find a neuro you trust & be steered by them - and above all else: stay off webdoctor-type sites: MS is such a condition that it’s symptoms are manifold. But then again, stress brings on these symptoms also.

I know your anxiety & am wishing you and your family the best outcome.

Hi Nylon,

I was diagnosed last month and I am 28. It’s such a shock and even more so when it is so unexpected.

MS is called a ‘snowflake disease’, because no two people with it have the same experience.

Not everyone’s mobility will be affected, or their ability to work. I am still fine to work full time. I am very fatigued a lot of the time, but it is manageable. I am also lucky because my mobility is not currently affected.

There are a lot of treatments (disease modifying drugs) and more research is being done every day.

Either way, it is an unpredictable illness which can be hard to deal with. I myself have found unpredictability and uncertainty to be the worst things about the illness so far.

I know it’s scary, but just remember, he hasn’t been diagnosed yet, and he may never be. But even if he is, it is a label. He will still be the same person he was before and you can take each day as it comes.

PG xx

[quote=“Nylon”] Thanks that is helpful. Just terrified for the future :frowning: [/quote] We can only tell you our stories, how MS has affected our lives. I had my first symptoms over twenty years ago and it is only the last few years it has made an impact work wise, resulting in me now being on the sick with no prospect of going back. Your husband might be just as lucky, he might be luckier. Unfortunately nobody knows but your Neuros will guide you through this stressful time. Good luck. Jan

[quote=“Janhhh”] [quote=Nylon]Thanks that is helpful. Just terrified for the future :frowning: [/quote] We can only tell you our stories, how MS has affected our lives. I had my first symptoms over twenty years ago and it is only the last few years it has made an impact work wise, resulting in me now being on the sick with no prospect of going back. Your husband might be just as lucky, he might be luckier. Unfortunately nobody knows but your Neuros will guide you through this stressful time. Good luck. Jan[/quote] Oops sorry I thought he’d been diagnosed!! I should read things properly.

I’m still working full time and looking likely to do so for the forseeable future. I’ve had a few days off sick but there are others in the department whose sick records are far worse than mine and who are much more at risk of having the capability procedure invoked on them than I am.

If your husband is coping with the demands of his job, then there is no reason for him to give up working. If his job is causing stress and making him feel ill, then he should reconsider. MS is not in itself a reason to give up a job that you enjoy as long as you can cope with the demands, except in a very few cases where there are very strict health criteria - and then I’d have thought he should be offered redeployment. If your husband’s job is office-based, there should be no problem with continuing to work for as long as he feels able to.

Thank you all for your kind words. The numbness is still there from the waist down. we are waiting for the results of a full body and brain scan and this week he will be having evoked potentials and some electro magnetic ( ?) assessment. It is all very stressful but I have to look on the bright side and say for now- we dont know what it is and his symptons are causing him too much pain and discomfort.

Thank you all again for your help during this stressful time.

Sorry NOT causing him too much pain and discomfort

Hi all,

Unfortunately my husband got an MS diagnosis on Friday after the MRI scan showed lesions on his spine and some very small ones on his neck. In this context the ones on his brain look more suspicious. He is having a lumbar puncture this week but really that is just to be belt and braces in the diagnosis.

I am devasted. I range from feeling ok and thinking maybe it wont be so bad and to be very very scared for the future. The MS was almost discovered by accident due to altered hearing and he is well apart from his numbness in his legs. What can we expect going forward?

I’m sorry to hear this news. (((Hugs))) Sadly, we can’t tell you what to expect going forward as MS is very individual and very unpredictable. I’m 6 months on from dx and I still have moments of thinking things won’t be so bad and moments of worrying about what the future holds.

Your husband should be put in touch with an MS nurse - she will be there for any questions, help and support and she can also refer your husband to other services such as physio, occupational therapy, the continence team etc, depending on what problems develop and what help your husband needs.

Has your husband been told if he’s eligible for DMDs? If he is eligible (not everyone is), he should definitely consider them as they can reduce the frequency and severity of relapses. His neuro and MS nurse will be able to offer advice on which ones are most appropriate. If he is not eligible for DMDs, there are still treatments for some of the symptoms so if one or more symptoms is making life difficult, he should ask if there is anything can help it.

If you click the Support tab at the top of the page, there is a link to the MS Society’s publications: they do a whole range, all providing lots of useful information and advice. I have found them very helpful.

Give yourselves time and space to mourn the future you thought you had and then concentrate on building a new future for yourselves and your family - it takes time but you can do it.