I’m new here, I’ve just joined and was avoiding joining anything like this until I was diagnosed but I don’t know where to turn right now so was hoping for some help.
I have symptoms very consistent with MS and have been for about 4 years now, it seems to come in waves where I get various symptoms and then they start getting better and then happens again etc.
In those 4 years I’ve been seen by GP’s and have had uncoutable blood tests been told numerous things it could be and sent away and sure enough it happens again and repeat. My symptoms have gotten to the point they’re dramatically affecting my life, I’m in pain most of the time and don’t trust my balance etc but I’ve never been able to get a doctor to refer me past them.
About 3 months back I was talking to a friend of a friend and when I told them my symptoms they told me their husband has / had very similar symptoms and was diagnosed with MS and when I looked at the symptom list I felt I was reading my last 4 years as well as giving me names for a few things I’d struggled to explain to the GP. When I next spoke to the GP I told her and she agreed it looked like my symptoms where consistent and she told me she couldn’t refer me but she would have to call a helpline to find out the referral criteria and she’s speak to me next week. This was the 3rd week in November, I’ve not heard anything from her or a referral letter etc and despite trying I can’t get an appointment with her I just keep getting told to call back for an appointment in the new year.
Is this normal? Any advice on how to move forward?
It suggests your GP lacks experience of MS. By kicking the can down the road she is hoping you’ll lose interest. Ask for a second opinion, with some diplomacy, from one of your GP’s colleagues and hopefully you’ll get your referral. The GP shouldn’t be acting as a gatekeeper and only a Neurologist can officially make a MS diagnosis. Even a Neurosurgeon has to refer to a Neurologist even though they are working on the same bits!
I would contact the practice manager and tell them you have been let down. Get the GP to provide a written plan. Once there is an audit trail they should be more professional.
Mick
It’s actually more common for a GP to do some form of a neurological examination, even when there’s really no point in them doing such a thing. They’d then still have to refer to a neurologist.
But for a GP to not know the referral criteria to a neurologist (or is it just in the case of suspected MS?) is unconscionable.
I agree with @GCCK and @Mogace, someone else within the GP practice must be advised. They may then be able to arrange for a second GP opinion at the very least. You can’t just assume that asking for a referral will always result in such. After all, that’s why you see a GP, to ask their opinion and for them to decide, not whether you might have MS, but if there’s the appropriate justification for a neurologist to examine you and determine if there’s a neurological problem.
Hopefully within a few days (in the New Year!) you’ll get to see another GP and have a referral made. Unfortunately that neurologists appointment may be some way off given current hospital waiting lists.
You may be in an area that operates a triage system as to whether you get an appointment to see a neurologist. Because there is such a shortage of neurologists some trusts are trying to weed out those patients that they think don’t have degenerative neurological conditions, and will just send a letter to the GP saying they won’t give an appointment (and some standard advice for the patient).
That is the system that works in my area. My GP had to write a letter detailing my history which was then assessed. The triage system did decide I needed an appointment, so the triage system then rang me up to see which city I’d prefer to be seen. Still very long delays though.
This explains how and why this system has been introduced in some areas.
Just keep on following up your GP.
Just to add, I’ve reread your post and it looks very much as if it is this new system where the GP has to speak to a national neurological helpline for guidance, as the first step towards referral.
Thanks for your replies, I will try and speak to someone else and see if I can get some answers, I don’t mind if it’s a case of following procedure etc but it’s the lack of contast when I feel so helpless. I’m also Autistic and struggle advocating for myself in these matters which really isn’t helping.
@Ssssue oddly enough the first time I saw this specific go and went over all the symptoms (before I knew about MS being likely) she gave me a strange neuro exam thing involving seeing if I could tell the difference in pressure of a cotton wool bud on each side of my body, that was a first. I agree asking for a referral doesn’t mean I’ll get one but that isn’t really what happened I asked if she thought the symptoms could be MS and she agreed and mentioned the referral, had she said “I’m not sure, let.me talk to some colleagues” which is usually what I’ve had from them, I wouldn’t be feeling as stuck in limbo.
@Ziola thanks for the info, it’s been helpful to read, I’m always better with more info it keeps the anxiety at bay but yes it sounds like that helpline you mention, again I don’t mind that if I then hear something back. The GPs have a text message system they usually use to send you a note if you have to wait for something so the lack of contact just feels like being ignored.
Basically one way or another I really hope I get some sort of referral because after 4 years of GP help, nothing has worked and I need someone with more specific knowledge to help me, weather it’s MS or something similar.
Big thanks, it really is helped to get other minds on the problem.
Sadly what your experiencing sound similar to me GP’s didn’t care about it or they didn’t really know expect loads of blood tests. Until one day I couldn’t weight bare on my right leg and was taken into hospital, steroids and a Neurologist saw me and after scans etc diagnosisrd me with only CIS but with phone calls if needed and Face to face every 4-6 months with MRI scans. Even then when I thought I only needed a GP they would call my Neurologist. GP’s are great but they seem to freak out when someone mentiones MS/CIS or any Neurological disorders.
Keep trying to speak with GP’s, write down your symptoms with time frames aswell (how long they last etc )
Always around for a chat if you need it. All in this together.
Thanks @Beth96, yes the blood tests have been flowing for years now must be around 1 every 2 months for the past 3.or 4 years I showed I was slightly low on b12 and that diverted me into a year of being told it’s b12 deficiency, though they also said it wasn’t low enough for concern when I quizzed them on it .
I’m sorry to hear you went through all that, it feels like what I’m in the middle of yeah. I haven’t been admitted to hospital or anything but I sort of wish I had so they take me more seriously. My autism gets in the way a fair bit, I don’t really emote correctly so when someone asks about pain or discomfort I can say it’s really bad but I don’t emote it so they write it off as exaggeration.
One thing that has happened several times is getting passed to a new GP, it seems to happen when the old one is confused enough by me. So I started keeping records a couple.of years back for the symptoms, frequency etc so I can give it to the new GP. This document is what I sat down with my sister and referred to when I read the MS symptoms and also what I gave to the doctor when I mentioned MS to her.
I’ll have to look into what CIS is I’ve not heard of that before, like I said, I’m very new and I’ve not been researching much because I don’t want to self diagnose.
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