@Gemlov 

Last reply

Gemlov

Anyone feel let down by their GP?

Hi ☺️ I'm 32 from the UK. The more I think of it the more upset and angry I am. I feel really let down by my GP with the amount of times I've contacted them for the past 18 months about my bowls not working. It was gettin to the point I was fainting an don't going for up to 10 days. I tried everything! I constantly asked for help, they listened to my stomach and said my bowl sounded very 'sluggish' and gave my laxative sachets... they did nothing. I constantly rang saying I couldn't cope I was taking strong laxatives at home every night to try help, they gave me a short term suposatries but problem continued. My diet was high fibre and healthy ( I have lost over 14 stone in weight!). Back in June 2022 I caught chicken pox for the second time and was very ill, they just noted it down told me to rest.. I went down hill quick and rang back as I completely incontinent peeing the bed. Came back I had a bad water and kidney infection aswel as chicken pox on top.. took me a good few wks to get better. August I then has shingles on my leg with ANOTHER water infection I had more antibiotics... October I had shingles up my neck on the other side of my body. They swabbed it as it was very aggressive looking I told them in that room "I don't feel myself anymore I just don't feel normal". Swab tests came back that it was actually herpes and a bad infection so I was on more medication and sent home. They picked up that I was asking for my general medication too early for the past few months ( zapains, amitryptaline, diazepan - for my back) I said I really need them I can't cope with my body I'm always in pain and makes my back and hip worse my body is crawling and my leg cramps/spasms every night are becoming hard to live with and the constant vibrations under my foot is driving me mad... her response was I have to cut down on my meds and I wasn't allowed my diazepan anymore 😒 and they done nothing about it. November I got worse my balance had gone and awful pressure in my head with headaches I just did not feel myself, constantly tired but falling asleep and waking up blind 3 times. I stupidly didn't do anything about waking up blind I just got on with it I really thought there was no point calling GP as they don't really see patients anymore and they fob me off all the time. December I got worse but cracked on with it because it was Christmas and I have a 10 and 6 Yr olds that only have me. January I got worse! And my body just closed in on me I ended up paralysed and my speech went, my bladder stopped working and I was semi unconscious. I was rushed into hospital they seen state of me and got me through for emergency CT scan, it showed what they thought wad a stroke. MRI's confirmed MS and lessians on brain and spinal cord. The inflammation on the brain was very bad I wad on steroid drip for 5 days and was in hospital for 2 wks. I'm now still on 8 steroids a day for the next 4 months! They said I had the "full blown MS" paralysed on my left side and both legs, hyper sensitivity on left leg was awful!! I couldn't talk or keep my eyes open the pain in my head wad unbearable, it's now doesn't feel normal like something is in my head at the back. I had to have the catheter and my bowls just still didn't work. They also diagnosed me with Ramsay Hunt syndrome when I was admitted. Herpes flared up while I was in hospital it covered my ear it was painful, I felt so so embarrassed. The hospital were amazing with me. I never new herpes is a red flag for MS and the amount of water infections I've had over time and my doctors just didn't bother investigating why I'm ill all the time. When a report went back to the GP they got in touch they were really shocked and genuinely lost for words on the phone, if anything she sounded guilty. My GP's are all lovely but I do feel they've let me down, I can't even say how many times I've asked for help with my bowls and not feeling right, all the symptoms etc. 18 months of struggling to then ending up in hospital I have 2 young kids that are now looking after me, I miss my old boring life, I miss work, I miss being able to get in my shower, miss standing up for longer than 5 mins, I miss driving my kids out for a day out, I miss looking after my parents and now for the first time ever they have had to look after me and i can't cope with it. My attitude is "it is what is it" I've got to get on with it it's tough, I know I'm in denial but that's my way of coping each day. I'm at Walton in 3 weeks to look at treatment and further tests to rule out any other diseases so I'm staying positive 👌🤞 I just feel bitter and let down, am I wrong for feeling like this? X
@Rebeccaann

They say positive thinking helps, but sometimes it seems impossible to see the sunshine after the storm. Although your gp may be a lovely person you are within your rights to ask for a second opinion with another medical professional. In the can't go to the loo, an older wiser lady told me when you are bunged up a couple of cups of very strong white coffee then a glass of orange juice. Didn't think it would work but it works for me on the bunged up can't go days. It seems like you still need to find acceptance which is a bumpy, dark and twisted road but at the end the sun shines and I find happiness in all sorts of places. Just take it slow and enjoy the good moments, but remember there is nothing wrong with needing sofa, blanket, pyjamas and good movie. Just not everyday. Do what you can and do not worry about the rest. The biggest of hugs and chin up. You are beautiful.

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@Kate13

Hi, No you are not wrong for feeling like this. You have been through so much. Hopefully soon you will get an MS nurse. They can refer you to a specialist bladder/bowel nurse. I have an overactive bladder and had an appointment with the specialist nurse on Monday which was very helpful. You could also speak to your MS nurse about some medication to help with the spasticity and cramps (Baclofen is commonly used). A referral to a physiotherapist may also help (this is what my MS nurse did for me). I also have been prescribed 2mg diazepam tablets by a neuropsychiatrist to help with acute episodes related to anxiety. I am only allowed to take a maximum of 3 a week and at least one day’s gap between doses. She said if you take it too often it won’t be as effective as you build up a tolerance. It can also be addictive. Perhaps your MS nurse/neurologist will be able to advise you on pain relief and get your pain under control. There are also medications available for fatigue - they don’t work for everyone but some people find them helpful. I was advised by an MS nurse to try the Overcoming MS programme which I think has helped. You can order a free book from their website in the UK. I take high strength Vitamin D3 4000IU daily. Also, there is a support charity for young people aged 18-35 living with MS in the UK. It is called MS Together. I would highly recommend it. Hope your appointment in 3 weeks time goes well. The MS Trust Decisions Aid has information about the different medications available. I am on Kesimpta which is a highly effective medication. I inject myself once a month at home. I don’t have any side effects or injection site reactions and it doesn’t hurt. Ocrevus is another common highly effective medication which involves an infusion every 6 months in hospital (which takes around 6 hours). Would recommend going for a highly effective treatment if possible to get the disease under control - I was on Copaxone first and I had to stop due to side effects, now I am on Kesimpta and feel better. The MS Society runs helpful webinars - they have one coming up on the 6th February for those newly diagnosed which may be of interest (https://www.mssociety.org.uk/care-and-support/virtual-support-events#upcoming%20events). It is so difficult feeling like you are in limbo. I remember that time before I was officially diagnosed and it was really hard. Things will get better and hopefully you will get the treatment you need soon. A diagnosis of MS is a big shock and takes time to accept. Give yourself time and be kind to yourself. Your worth doesn’t come from what you can do. Sending you lots of love x