Forum

Trying to help brother...

Hi

DB has not yet received a diagnosis of MS and is repeatedly being told his symptoms are entirely normal.

He started with some classic symptoms a year ago (left eye problems, loss of feeling in the soles of the feet, balance problems). He also seemed to develop gluten intolerance (linked / not linked?) around this time and lost a lot of weight v quickly. He is still quite thin and having poor appetite still. He also has an almost permanently numb chin as well. He first saw his GP at that time who initially accused him of being an alcoholic (he fell on that Xmas one night and banged his nose and thus the only explanation is that he must be a drunk…). He’s had a clear brain MRI and no diagnosis (I’m not clear if the MRI included any portion of the spine). He has done neurological tests with the consultant including toe-to-toe walking where he wobbled considerably obviously struggling with his balance several times during that test, but was told it was ‘normal’.

He has a cold at the moment and the symptoms are considerably worse. He saw the GP about this earlier in ths week but was once again told ‘it’s normal’ and ‘the symptoms’ll pass when the cold goes’ (not quite the point) and this was also related back to ‘well your MRI was clear so there’s nothing abnormal’. There is NO way his movement and inability to balance could be considered to be within a range that is anywhere near normal - I cannot believe they keep saying this to him.

He got so fed up with seeing this really quite odd - let’s be kind and call him ‘charismatic’ - consultant that he stopped going to see him as he only keeps saying everything’s normal and can’ or won’t diagnose anything nor will he apparently offer any drugs/treatment/OT or anything which might help his symptoms.

When I spent time with him today I could see him having to stand, wait (until he’d got his balance), walking wobbly along the pavements (having to really work at it, stepping up or down steps or changes in level really carefully).

And even without a diagnosis, should they not be offering to treat his symptoms? He would have been completely housebound today had I not driven a 140 mile round trip to spend some time with him. He can’t drive, can’t run his online business or his sports based business either. And yet he’s ‘entirely normal’… We watched a film with him sitting alternately putting one or the other hand over one of his eyes so he could see the film without blurring.

It’s angering he’s being left like this possibly missing out on treatment that could reduce the speed of progress of this disease (if it is in fact MS), and sad to see someone who is an expert in his sport no longer able to teach it to others and with the accompaniment of his current cold, he had to teach a class from the sidelines this week as he couldn’t balance to do the movements to show to the class, nor join in with them. It also makes a laughing stock of the Drs saying his deteriorated movement and vision are normal - they wouldn’t be normal for the average person but this is someone with incredible balance and flexibility regularly teaching others a sport, so that only makes it even more idiotic that he keeps getting told it’s normal. It’s NOT normal! It’s definitely not normal if it affects your ability to work and drive.

Sorry for this rambling first post but I don’t know what to say to him or how I can help him figure out what to do next. He seems less concerned about the balance (although I’m sure there’s something they could do to help that possibly) but he wants to do something to sort the vision - what experience have people had with successfully treating these symptoms? And what do people think to the current medical experience - should he ask to see a different consultant??

Thank you and great to be on here.

hi

your brother should try a different doctor at his practice.

if his next one is good, he can ask to be referred back to neurology.

i’m annoyed on his behalf.

he could try going to A & E if he has a particularly bad time.

carole x

Hi

You obviously believe that there is something wrong and that you’re not getting any answers. As Carole says go to a different doctor and, if possible, go to see a neurologist privately. They can always refer you back to the NHS for treatment if they find anything significant.

Regards,

Anthony

I will try and encourage him to go back to the GP - again - but if they don’t believe there’s anything wrong they’re possibly not likely to refer him.

Is there a list of ‘recommended MS-savvy neurologists’ one can refer to?

I’m reading your post (again, I saw it a few days ago and couldn’t think of much to suggest) and I’ve just picked up on your brothers recent ‘gluten intolerance’. Has this been diagnosed or has he decided for himself that he’s got a problem with gluten?

Has he in fact been tested for coeliac disease? It’s something that can actually have some weird and wonderful symptoms apart from stomach pains when eating gluten. But it should be diagnosed.

Does his GP agree that he’s intolerant of gluten? Does the GP even know that he’s avoiding gluten?

If in fact he is gluten intolerant or have full blown coeliac disease, he should be properly diagnosed and start thinking about everything that contains gluten, not just the obvious things with wheat flour in. Things like most cereals, anything with monosodium glutamate, soy sauce, prepackaged foods, foods that are made in factories where they also make gluten containing foods.

Meanwhile, if he’s had a clear MRI brain scan, whether it includes the spine or not, makes it fairly unlikely that what he has is MS. But that doesn’t mean he doesn’t have the symptoms. Perhaps he should be concentrating on getting those symptoms properly diagnosed rather than continuing to follow an MS diagnosis, which doesn’t seem likely to come.

If his vision is affected, maybe suggest he sees an ophthalmologist (even an optician) who can look at the back of his eyes to the optic nerves and see if there’s any damage.

Has he been discharged by the neurologist or does he still have appointments during which he could try to find alternate diagnoses which might fit his symptoms.

If he’s been discharged, then perhaps he should take the above suggestion that he sees his GP with the intention of discussing all his symptoms, the tests he’s had and what the results have been. There’s no way someone should have to suffer living with ongoing symptoms just because one diagnosis has for now been ruled out.

Sue