A question of balance

[Silvergilt]

Ugh, so after a GORGEOUS trip to the beach last week (that's my 6'1" teenager below) and about a week's worth of recovery, I noticed my already somewhat tenuous balance has become even worse. I seem to be having trouble walking in a straight line now, much to my annoyance. I have always had a nearly freakish sense of balance and incredible reflexes. The reflexes are dulled but still higher than one would expect (my catching skills aren't great though due to limited dexterity), but my balance is pants. I'm wearing my fall detector more often - I had put it away for a bit as the spring came on - and sometimes I'm using crutches in the house as well. I literally don't dare to do anything when the Dutchman isn't around like have a shower or any housekeeping as I am so unsteady on my feet it's a dangerous prospect.

I've wondered if perhaps there's something going on with my spine - back pain, numbness in my arms, shoulder problems which are growing progressively worse, neck pain, pain in the pelvis. I wouldn't know how to get any of that checked. I'm claustrophobic as a very claustrophobic thing so a MRI scan is right out, I'd never be able to cope. I don't know...something's off, I'm just not sure what.

Cue even more annoyance I won't have my powerchair any more after next week. Of all the times for my balance to go, when I have NO way of getting out and about outdoors without supervision is not it. Ugh - but plots and plans for purchasing a new one is in the offing, it is just going to take...well, a fair while and maybe my pension fund cashed in early. We'll see. I definitely can't just bravely go without; I decline a fair bit in the autumn and winter and if this is the state of things in July....yikes.

I still have difficulty figuring out which symptoms I should be reporting to a rheumy. While my last one was great, he wasn't particularly interested in anything that wasn't joints - telling him I was starting to lose vision, he waved it aside and said 'I'm not concerned about that' (!!). So I'm between a rock and a hard place of wondering if it's worth bringing it up, or if it's all going to be chalked up to that lovely chestnut 'Lose Some Weight' (I used to bellydance on one foot...I was a fat woman then, I am a fat woman now. That isn't it.)

Is it worth bringing it up, or is this just another aspect of illness I'll need to learn to suck up?

[Penguintaz]

I would mention it! Balance could be due to determination in eye sight or even an issue with inner ear or brain so your rheumy should care! Some medication can cause a deteriation of eye sight and it is important to look out for that, silly of your last rheumy to ignore it! As a rheumatologist he should know there are more things effected than joints. I hope you are doing well

[thyro1]

hi hun definitely get it checked out, my balance issues have come from a variety of things, menieres, nystagmas, mortons neoroma and spine problems, so ears,eyes,feet and back.

I did have to get mri to diagnose the issues, but if you are claustrophobic they can help with sedation, so don't be put off. I would not be able to manage at all without my electric wheelchair it has enabled me to continue to do things. Hope you get your scooter/chair sorted out take care hugs T

[Silvergilt in reply to thyro1]

Thanks, I'll see what I can do.

[whisperit]

And it's not related to how much time you spend sitting or lying down? Since spending about 23 hours a day lying or sitting, I do notice both a bit of postural hypotension and some degree of inner ear weirdness whenever I am on my feet...but that's not your experience? Got to be worth mentioning - what neurology opinion have you had. if any? x

PS How have you got on with CBT techniques for the claustrophobia? MRI scans are cool beans, as the young people say.

[Silvergilt in reply to whisperit]

I haven't really had any opinion at all. It was considered a non-issue, although to be fair I just figured it was something I had to deal with. I am usually sitting or lying down a lot - but it hasn't been this bad for a while. It usually gets a lot worse in winter, so maybe some inflammation is putting pressure somewhere (which always gets worse for me in cold and damp...I dread winter very much indeed).

[PMRpro]

There are MRIs where you are not enclosed - how many there are on the NHS I don't know. And patients who are claustrophobic are given at least a sedative.

If you are losing vision - you need to make that clear to your GP together with the other symptoms. If the rheumy isn't interested (and really, that is appalling) then the GP has to step up to the plate.

[Silvergilt in reply to PMRpro]

My new GP is a locum (cue the horrified groans). Also, as I said, I'm a fat woman. I'm not going to FIT into an MRI scanner, sedative or not. But...yes, I'll try and raise it with the new rheumy in October. Thanks, I'll try and get the courage to raise it. I just...struggle trying to say anything when the answer seems to be 'stop being such a whinger'. I never know when I'm just wasting NHS time, or when it's serious. And I've had years of being told I was wasting time. It's not easy to untrain.

[PMRpro in reply to Silvergilt]

There are special scanners for bariatric patients too. And SOMETIMES locums are treasures who see the patient through different eyes and are less brow-beaten.

You can only ask. Nicely. And two examples of NHS-accessible scanners (there are others I think):

uprightmri.co.uk/for-patien...

inhealthgroup.com/location/...