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Think I’m Giving Up

l was diagnosed with M S twenty three years ago, for the last eighteen SP.

l used to attend a major hospital but in order to get there we had to leave at 6.30 an in order to get a parking space

we could have gone into multi story but poor hubby would the have to push wheelchair and negotiate lifts .

not good as he has pulled disc.

l asked to be transferred to my local hospital, as l wasn’t being offered any treatment, as l had refused two trials .

by this stage l had had enough and it would mean going back to the hospital three times a month if l had accepted it.

so it was just a catch up on meds they have a clinic there with Neuro from same team.

l had my appointment on Tuesday met a registrar l had seen before

explained l had ongoing chest infection since early December, January diagnosed with Pneumonia which left me with pleurisy.

had four lots of antibiotics and five steroids, felt like death before Christmas and haven’t recovered.

he started off with , you know how infection affects M S, l will contact your GP we need to get on top of this , then my hubby said l worry when she’s in pain and has to sit up in the night . The registrar said we have never got on top of your pain control,

( well maybe not but l manage) l came off carbamazepine months ago due to feeling zoned out, and l have tried most of the others. He then goes into the next room another neurologist came through Arrogant was an understatement.saying the lyrica dose is too high.

l said well your Boss prescribed it, they then put up an MRI scan-from 2011 looking at lesions and chest X-rays showing pleurisy on both lungs. Do you want a scan on your spine .?Why I don’t want to know how it has progressed. Thank you ,

he told the registrar to make a note l had refused the Scan on my spine ,

he made me feel as though l was wasting his time , my hubby was getting more angry at the way he was speaking, it sounded as though l was a naughty child as l wouldn’t do what he wanted. Sorry but I’m fed up of being a lab rat.

came out with appointment for twelve months but have to see a neuro nurse in six.

on the way home it came to me that l haven’t had an MRI in ten years so the one he had on the screen wasn’t mine

live spent the last few days in tears , feel fed up now have to see a chest specialist and had a phone call this morning re my blood test to say l may have kidney disease.

sorry for the long rant

now l feel as though l can’t be bothered with any of it .

take care

Margaret (Charlie B )

Well Charlie, you may not be bovvered, but if you ignore possible kidney failure you WILL be dead. Not being over dramatic here, my partner has chronic kidney failure and so I know that only dialysis keeps him alive. Sounds like you have been very ill, pleurisy. Don’t know why you would refuse a scan: knowledge is an advantage, even if its bad news. Kidney disease may explain why you feel like crap. If the kidneys are’nt working at full whack, then toxins build up in your body and are poisening you. Too much potassium, phospates. Fluid build up could be affecting the pleurisy as well. So please go to the appt

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Aw Margaret

That sounds like the appointment from hell. I’m not surprised you feel so low.

Given that the neurologist had someone else’s MRI scan on his screen, you could make a complaint about that. But I’m sure you’ll just live with it. As you say you just get on with it. And if you’ve got progressive MS and no active treatment, only symptomatic relief, why bother having more MRIs.

Sometimes it just feels like the only time I leave the house is for hospital and doctors. I’m sure you are the same at the moment given how very unwell you’ve been.

And now kidney disease on top.

You have my sympathy. Don’t apologise for the rant. Sometimes that’s needed. A bit of ‘aaarrrgghh, why me?’ is essential when everything’s so hard.

Sue x

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The scan wasn’t anything to do with kidneys , it was a scan for M S and they have already said there is nothing they can offer l don’t see any point in having a scan to see how the M S has progressed…

l only found out about the Kidney diagnosis after a blood test on Thursday, so have to wait further results.

so sorry to hear about your partner,

take care of each other,

Margaret