I need a rant…been feeling really unwell with huge headache and itchy ears, been on Rebif for a year now with no real probs. Bad symptoms this week but not convinced a relapse and fed up with every ache and pain being put down to my ms. Felt as if been battered on back of neck right side of skull as if been hit with a baseball bat, sharp pain that dulled with ibuprofen. Frequent toilet trips with hardly any point (sorry to be so direct). Massive constipation and off my food and generally unwell. Really bad sleeping and resorted to sleeping tablets to try and kick in routine. Felt very shaky and fizzy but out that down to lack of sleep. Every time I tried to sleep my leg, arm would twitch and started getting v.v stressed. Ended up getting v tearful Went to doctor who said might have infection as blood in urine so took amoxicillin for 3 days as instructed. Ear a bit blocked, He is delightful and gave me his home number over Christmas. But didn’t want to use it as thought it was bit rude to do that as he has a young family. Two nights ago got so fed up after ringing ms nurse with no luck for two days took myself up to a and e and couldn’t believe how thick they were. Saw dr who was lovely, hadn’t heard of Rebif or any dmd for ms. No idea of ms at all, told me to see my neuro, yep really, friday evening, Christmas week. After 4 hours told to take 2 paracetmol and go home. No neuro at hospital. Now guys. Trying to be kind to the nhs but what on earth are we supposed to do. …time any relapses around the working week, how can I take anything said by a doctor who hasn’t heard of interferon. I am sure someone will have advice, just feel since dx just been bundled I to a pen labelled ms and left to get on with it, yes my ms nurse is good when you can get her but that is very hit and miss. Can anyone give me advice…I am surely not the only one with these experiences. To be honest all I wanted was a hospital bed and some meds to take edge off. I may add I am defo not a drama queen but been so frustrated this week, it’s been driving me mad.
hi anon
oh you’re really having a bad time of it.
urinary tract infections make you feel really poorly so here’s hoping the amoxycillin does the trick.
if the infection hasnt cleared up ask gp to try a different anti biotic.
there are specific ones to treat particular strains of infection.
also constipation makes you feel really sh** so try to get moving.
i bought milk of magnesia, which has helped a bit.
anyway we hear a lot about magnesium being one of the things that people with ms lack.
the twitches in the night may respond to one of the neuropathic pain killers like tizanidine.
i’m sure that you won’t be like this for too long.
take care
carole x
Hi Anon
I’m really feeling for you, and so sorry that you are feeling so low. I agree that it’s far too easy to blame everything on ms, and I think I tend to do that myself nevermind people around me!
I haven’t got any advice for you but really wanted to offer my support to try and lift your spirits through this tough time. There must be some system set up for us, because ms is a chronic condition and we should have access to medical help at all times.
So I’m sorry I can’t help but just wanted to say you are not going through this alone, there are many of us on here who can relate to how you are feeling!
Keep strong
Sending yo a big hug ((((( ))))))
All the best
Freckles xxx
Hi there feel free to rant. We’ve all been there. Sounds like you are going through a rough patch and need some TLC. Unfortunately NHS hospitals won’t admit you for that. MS is a bug…r just throws weird uncomfortable distressing things at us without a thought. However good that your on rebif with no problems. Have you got good MS nurse or GP who could advise re meds for your symptoms? Or put your symptoms in search box here to see what meds others suggest. Can you not just give yourself time off and put yourself in your own bed for your own TLC? Nice snacks and drink nearby. Also good book or TV and just spend the day or days in bed as me time. And don’t feel guilty just call them duvet days. Hope your feeling better soon Hugs Min xx
Know how you feel about sleeping i have vertigo attacks when im asleep and is constantly waking me up been like it badly for a week happens even when im sitting upright hate this illness x
Sorry to hear you have been feeling unwell. I could really relate to your sentence about how we should try to time relapses around the working week, but my MS nurse only works a 3 day week so I have to be even more careful! I have had 2 relapses now and both times when I did get hold if her she just passed details on to the neuro and that was it! I thought you were supposed to be offered steroids. I certainly don’t want to go to A&E, seems like nothing would be achieved from your experience. I hope you recover soon.
The trouble with doctors and nurses and chronic conditions in general and MS in particular is that there isn’t actually a fat lot they can do about it, and they do not like that any more than we do! Doctors like things that they can cure or fix, and with MS they can do neither. Of course A&E docs know little or nothing about it - why should they? - it is a chronic condition and neither an accident nor an emergency! Most GPs know little or nothing about it either - GPs will typically see a couple of cases at the most in the course of a career, and if they were a bit hung-over on the wet Wednesday morning 20 years ago when they can a class on CNS ailments back at medical school, they will know less about it than we do. So we are left with the specialist neurology team, and they are geared up to respond on the relatively leisurely timescale that the NHS deems appropriate for non-urgent matters.
So yes, I am sure that those of us who have had MS for a little while understand completely the feeling of just not being of much interest to anyone medical when we feel we need help in a hurry, but it isn’t an emergency by their standards.
If you have a good GP, he or she will be learning with you and taking an interest in your condition and what he/she can do to help with symptoms, liaising with the consultant neurologist. That can be an enormous help. But in a sense you are absolutely right about being on your own with this - that feeling never really goes away, I’m afraid, because it is all too true!
Alison
Alison. And all others, thank you for replies. My logic tells me to just huddle down and try to ride a relaspe but my heart just wants to get better ASAP and be able to do everything I used to. Not going to happen. I am sure we have all been there. Hence frustration. I am such a proactive person think it is difficult to not be in control. Once I have got my head round it I am sure I will start to get on top of it. This forum is a great platform and I reallocate appreciate everyone’s kind words, you can’t honestly understand how it feels unless you have been there. You guys have and do understand. Thank you. I may continue to rant as I am a very grumpy patient and when this stupid relaspe is over I will chuckle over how grumpy I was. I will look forward to a new year and new challenges, I know everyone will have bad heads tomorrow, at least mine won’t be alcohol induced.