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Confused and exhausted

I am totally confused and at a loss as to what’s going on. I’m not getting much support or sympathy from my husband who thinks I’m worrying about nothing. I started with a virus about eight months ago although odd things have been happening for much longer. I don’t know if it’s MS. I don’t know anything. After the virus I lost my sense of smell and to a lesser extent my sense of taste and never regained them. About the same time maybe longer I’ve been constantly needing to wee at night getting up sometimes four or five times a night. I’ve also been constipated which makes the weeing at night even worse. I’m exhausted some days where I feel like I can’t sit up properly. I am 53 but I used to be fit and healthy. I don’t drink and I don’t smoke. I have got an MRI scan on Saturday which has been organised by the consultant that saw me about having no sense of smell. My GP has but me on a tablet for an overactive bladder which worked for a couple of nights but as he’s also told me to reduce the laxative “laxido” I’ve become constipated again so I’m up again needing to pass urine all night. I don’t think I’ve had any numbness but I get cramp in my legs a lot. I’m forgetful sometimes scarily so but I put that down to lack of sleep. I would be so grateful for any advice or reassurance or anything. I’m an ex nurse.

I was also diagnosed with BPPV a form of vertigo about two years ago which is a lot better now but my balance is very poor.

Oh and this summer the gp found I had low vitamin D levels. My vision is very poor especially during the evening again I’ve put this down to fatigue.

Hello Millie

You sound like you’re in a miserable place at the moment. I assume the MRI is of the head/brain? Is your consultant a neurologist, or another specialist?

If the latter, perhaps you should ask to be referred to a neurologist? Perhaps when you get the results of your scan? Depending on what the scan does or doesn’t reveal of course.

You should keep in your mind that MS is one of these diseases which share many symptoms with other diagnoses. So what ‘could’ fit MS, might actually be something entirely other. Equally, if your doctors are looking at you with a view to diagnosing or ruling out something different, it could be MS.

It seems to me that you’re in that limbo space, where you are suffering alone and just living from medical appointment to test, to results, and back again. It’s a horrible place to be. And sadly there are many others in a similar situation on this forum. You are very welcome here for support, even if we can’t actually give you any answers.

What I would suggest is that irrespective of your MRI scan, you are either referred, or possibly see if you can refer yourself, to a bowel and bladder specialist nurse. Getting up loads of times in the night really gets you down. And constipation certainly is no joke, and does as you know, add to the overactive bladder.

In terms of a GP telling you to reduce the Laxido, I would completely ignore that advice. Being constipated is horrible. And if the Laxido dose you were taking worked, then in my (biased and non medical) opinion, you should keep taking it. But look at your diet too. And your water intake. Often, people who are suffering an overactive bladder cut down on their fluids, this not only makes your urine stronger, so doesn’t necessarily cut down on the loo visits, but it makes constipation worse. In terms of diet, obviously all the things like whole wheat, bran fibre, vegetables, fruit help (apart from bananas). But also, dried fruit, especially apricots and prunes. And Linseeds too, maybe sprinkled on cereal?

There are plenty of drugs available to help with an overactive bladder; if what you are taking doesn’t work, ask for something different. Often doctors prescribe Oxybutinin, but it’s not such a good drug as it can add to later life brain shrinkage. Many people swear by Betmiga as a better alternative (although there are many other perfectly good drugs available). And lots of other products are available to help with constipation. But seeing a specialist nurse is the first and best step to finding your way out of the bowel and bladder misery. One of the first things a B&B nurse should do is an ultrasound scan of your bladder when it’s both full and after you’ve emptied it. It may be that you are actually retaining urine, so it’s not so much an overactive bladder as an inability to void that causes the problem. There are ways around that problem.

Hopefully you will get to see light at the end of the tunnel you are in. If the MRI shows up something that’s resolvable, and you manage to sort out the bowel and bladder, then life might improve dramatically.

Sue

Thank you Sue