I was right to want to sack my MS "nurse"

Everyday living
1

Hello i hope you are all as well as can be. Sorry ive not posted for ages but i really need to share what Im going through.

June 2018, I decided enough was enough that my nurse was far from being hepful, I was coming away from her, depressed and suicidal. I asked GP to refer me to a new one. I am still on a waiting list and have been since June 2018!

Anyway fast forward to today. Ive been off work for nearly 9 months due to worsening conditions, balance issues, cognative and weakness in leg. 2019 was the year of falling. I fell at least once a week, sometimes ending up in bushes, in flower beds and on pavements. I laughed each fall off and boasted that I had a strong core and knew how to fall. It was only when I fell in a busy road and narrowly avoided having my head crushed by a fast moving car, that i started going out with a cane.

Unfortunately the cane was of no help when I fell in November and broke my tibia plateau. Im on crutches currently and new symptoms have started which are spasms. They are so bad. They start early hours of the morning around 3.am. I have read on this site while lurking that Amitryplitine helps and I will re-start those tonight (having been prescribed them earlier this year for tension headaches).

Gosh this is turning into a novel! I apologise!

To cut a long story short, at work I am enrolled onto a group income protection scheme. My SSP is coming to an end and the insurance company wrote to my neuro for a report outling my condition.

As I dont have a new MS nurse yet, they have contacted the old one. Luckily I asked to see it beforehand. It is littered with the word alcohol. It makes me out to be a raging alcoholic!

Yes, I like the odd bottle of red wine in the evenings, nowadays just at weekends, but I am in no way an alcoholic.

I am fearful that insurance company wont pay out, as a result.

I phoned nurse up and asked her why she thinks im an alcoholic, she said it was the neuro who had diagnosed me with MS as a result of the MRI and Alcoholism due to what my husband had mentioned on my initial visit…he had said I drink too much and he exaggerates.

I asked nurse if she could remove the word alcohol from report and she said no, that she had to be factual. So I told her id seek legal advice.

Does anybody on here know where I can go for help with this? Surely MS nurse should be sticking to MS diagnosis. Can a Neuro diagnose alcoholism based on verbal information?

Will insurance company refuse me and say that alcohol makes MS worse?

Am I worrying too much?

Please help.

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Could your GP write a statement refuting the allegation?

Jan x

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Not sure what drinking has to do with MS.

I think its wrong for the MS nurse to even DISCUSS your issues other then MS.

https://www.healthline.com/health-news/effects-of-alcohol-coffee-smoking-on-multiple-sclerosis#2

they actually think alcohol could protect nerves perhaps you should send her that.

Its patient confidence isnt it? Your neuro has no right to go above and beyond what he is dealing with.

Lots of people drink with MS. We are encouraged to try drugs too i.e. cannabis.

I am not sure what it has to do with your MS. I had an IPS and it paid out with no problems.

IF however, one of the questions asked when you filled in states do you drink and you should NO then yes you have a right to worry, otherwise IMHO I cant see how it has a bearing on you having MS.

some of the drugs we take are far worse effects on our bodies then a good bottle of red.

I think she should change it. I would also write to neuro and talk to GP about this.

p.s. HOwever, only you know really if there is a problem to yourself with alcohol and its easy to fob it off as having no bearing. be true to they self. but it still has nothing to do with your MS.

I did wonder why would your husband bring it up to the neurologist is he worried about it?

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Hello. Thank you for your reply. I will make an appointment with GP.

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Hi Crazy Chick. Thank you for responding. I feel a lot better about it all today. As soon as I wrote my post I felt like I’d been for a counselling session. Reading this has been helpful. Thanks. I think I drink like everybody else apart from when I’m very stressed and then it tends to acccelerate and that is why husband mentioned it at the time. When MS was first mentioned I did go into a bit of a tail spin and drank every night leading up to that first appointment with neuro. I’m going to ring the neuro today. To see if he can step in, if not then GP. But inevitably you may be right and it may have no bearing. But you know what insurance companies are like. They are always looking for reasons not to pay out. I have been honest from the start at work and they knew I had MS. I will go and look at that link now. X

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Gosh. Just read the link. An interesting read. I’m going to continue to drink a couple off glasses of wine 3 night a week. I may try to reduce oily fish and increase lean fish. It’s amazing that when I asked MS nurse if vitamin D would help, she point blank told me no chance. She said it would be like locking the Stable door after horse has bolted. Her exact words. I will actually resume vitamin d. I’m also taking a supplement. They are orange jelly sweets called immune support. They have b12 vit c etc.

1 Like
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Not any help, but I understand where you’re coming from. A few years back (way before diagnosis) I was falling frequently and giving myself concussions. At the ER, part of their patient report asks if you’re a social drinker. Since I was having one beer a month at that time, I said “yes”. Not long after, a young intern walked in and told me that I needed to face the fact that I was an alcoholic and that my problems would all go away if I stopped drinking. Instead, I foolishly stopped going to the hospital for my concussions!

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Hi Lady,

in the past I was falsely accused of drinking alcohol - my GP was outraged and ordered some Liver Function Blood tests LFTs . Not sure whether this is diagnostic for alcoholism but it might help.

Good luck

Min xx

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being told one has MS is a shock and you have a right to turn to whatever you need to cope with it. I used to love a glass or two of vino after work before diagnsosis well it kind of came with the genes mum being Italian. I did find myself drinking more often I have to say, and suddenly wine made me feel awful, so i just stopped drinking it. i have never had it since must be 24 years now and hey you know what girl…

I still feel like i have had a heavy night on the plonk lol, balance all over the place (hic), and that horrible light headed swirly feeling one gets when they have had one or two too many lol.

I feel worse now with after affects of non alcohol then i did with a glass of white wine lol. go figure. xxxx

I agree talk to neuro, see GP someone else mentioned about blood tests have one for liver function that should shut them up. it makes me so mad, and i bet the person dealing with your claim is a temperance NOT lol. xxxx

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The easiest way to find out if you have a drink problem is to stop drinking and if you can not go without a drink then you have a problem. So to help yourself with your argument then try this simple test.

There’s a lady on a different forum who likes her drink far to much and it’s obvious to other forum members she has a problem, she herself has no idea.

Perhaps also write down each time you have a drink and how much. Then you can see in black and white how much you are drinking, obviously you have to be honest with yourself.

3 Likes
11

Not about alcohol but in the same vein.

When I had to apply for PIP I asked my Doc and physio to write a report. The Doc did ask me one or two questions. The physio didn’t ask me any. I did not see the reports before they were sent back even though I wanted to.

On the basis of these reports I was put on the lower rung of PIP. When i finally got sight of the physio report i couldn’t believe it! He had assumed certain things about me and my lifestyle and that was why I missed out on higher PIP. How dare these people answer for us!

Anne

1 Like
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I had many mis thruths on my PIP…one was your husband feeds the cat…we never spoke about our cat …