Frustrated and confused

Hi. I have struggled for most of my adult life with chronic pain amongst other things. Initially I was diagnosed with ME around 16 years ago. Strangely, symptoms seemed to subside dramatically after I fell pregnant with my first child and when I queried this my consultant laughed at me and told me to just be grateful I was well! A few years later I had a pretty severe bout of viral meningitis and was hospitalised for nearly 2 weeks - apparently rare for viral cases. They pumped me full of IV penicillin despite the viral diagnosis and I had a severe allergic reaction which has now left me with allergies to all penicillins and various other antibiotics too. The meningitis also left me with severe migraines and cluster headaches. Since then, they changed the ME diagnosis to Fibromyalgia and I have been taking various pain meds, anti inflammatories and alternative supplements advised by the medical profession. I have also attended living with pain courses, invested a lot of money in massage, reflexology and reiki in order to try to get the balance of healthy body and mind… all to very little avail. I’ve had periods where I am well and periods where I relapse but last October I became very poorly. It started with severe back pain which increased over a couple of weeks to the point where I couldn’t actually walk more than a couple of paces without breaking into a sweat and sobbing in agony! I was given crutches and referred to an orthopaedic specialist who sent me for an MRI of my lumbar spine. Because I had other symptoms as well as the severe pain, my specialist referred me to a neurologist and told me he thought my symptoms could be suggestive of MS. I waited for 5 months for the so-called “urgent” referral, and when I finally met my neurologist a few weeks ago I found him rude and quite dismissive. He asked lots of questions and took a detailed list of symptoms and told me he didn’t think they sounded like MS symptoms but he wanted a further MRI of my brain and cervical and thoracic spine to see what might be going on. Because there are so many symptoms he asked me which one was most important to me as he could only look at one at a time and couldn’t treat them as being necessarily related. Th

Oops I hit send by accident before I’d finished! :frowning: Sorry. It seemed weird to me that he feels they’re unrelated especially as they’ve all begun at the same time and the previous specialist seemed convinced there was a connection. I was horrified when he said he’d see me in 5 months time for my second appointment as by then It’ll be nearly a year since my symptoms began and he’ll only have begun investigating 1 of the many things I’ve reported being wrong. Probably easier to bullet point symptoms: Chronic pain Weakness in legs especially right side Inability to urinate without straining Problems swallowing and dry mouth Excessive thirst Long bouts of diarrhoea Vision issues - blurred and double vision especially in right eye Sudden loss of energy Development of unexplained allergic reactions with undiscovered causation Fatigue Nausea Sleep disturbance When he tested my reflexes he described them as being “quite brisk” but was only interested in speaking in jargon to his medical student rather than explaining what that meant to me. However, on investigation (dear old Google!) it would appear that can also be indicative of MS. I suppose I’m hoping someone will be able to tell me if my frustration and confusion is justified and if they think I should push for further clarification from the hospital rather than waiting for my next appointment with “Mr Vague” as I just don’t feel satisfied that I’ve been treated particularly well so far. I find it the height of rudeness when someone asks you questions and every time you begin to answer they talk over you, which is what he did throughout my consultation! I left feeling completely overlooked and fobbed off and I wonder if this is common for other sufferers whilst waiting for investigations and diagnosis? How long is reasonable to expect to have to wait between consultant appointments and is it normal for the consultant to completely ignore the patient’s questions and concerns? I know I’m unlikely to get anything moving quickly but is it unreasonable to expect little more than 1 symptom a year to be looked into? Going by those figures I’m looking at a possible diagnosis in 2026! Lol Joking apart, I am a single parent to 2 kids and can’t afford to sit around waiting for them to look at one thing at a time. They need me now and I need some kind of help/diagnosis so I can be given the correct treatment and/or support so I can be the best mum I can be. Right now I just feel like I’m letting them down. Thanks and sorry for going on so long. I’d be really grateful for some useful advice. X

Hi Autumn.

You are nor aalone here with having experienced dissmissive and vague neuro, honstly I thinknthey must be a different breed to the rest of us.

I sought a 2nd opinion and that turned out to be just as vahue with a diagnosis of silent migraine which turned out not to be the case/

My best adversary has been my GP. I have been seeing consultants privately but when I saw my Gpecently he was very concerned and has pushed for me to see a different neuro and has written a strong letter saying he really suspects MS and wants me to have the correct tests.

From what i have learned from here I would agree some of your symptoms are suggestive of MS and some not, but hey what do i know i’m clueless.

I have accepted now that any kind of neuroligical dx can be a long time coming as it’s a very complex area.

I empathise with your frustration, don’t know what to suggest really except that those whose shout loudest get more attention so all of us in this position just have to keep pushing.

Really hope you get some answers soon. Keep fighting

Take care xxx

Thanks Bunnythecat, really kind of you to reply to such a long and rambling post! :slight_smile: There are lots more symptoms I’ve experienced over the years which have led to previous diagnoses of Glandular Fever, ME/CFS and fibromyalgia. I get better for a while but then I have another episode and each one seems to be worse and last longer than the previous one. I’m feeling quite low at the moment as there seems to be very little light at the end of the tunnel and I don’t have any understanding from friends and family as there is nothing visibly wrong with me, therefore they seem to think I’m just looking for sympathy which I’m not. I’m bored of feeling this way and hate my life as it is. I may well ask for a second opinion. Maybe I just need some vitamins and a good dose of sunshine! Lol x

hi

i agree with bunnythecat. ask your gp to help you get a second opinion.

take vit D - most people with ms take quite a high dose. your gp can get your levels checked.

B12 is another vitamin that a lot of people with ms are deficient in.

if you gp is sympathetic he may be able to offer you B12 injections.

i have these monthly and they really make a difference.

i’m appalled by the treatment that a lot of people have during diagnosis.

i was lucky because my local area has a neuro who does outreach from the large neuro hospital.

he’s a lovely man and i was gutted when he had to pass me over to a ms specialist.

carole x

hello, i luckily found my neuro quite nice, but that doesnt mean i havent had my fair share of dissmissive and rude doctors. i have been told either fibro or ms, (waiting for brain scan results now) and i have similar symptoms to you (severe pain, weakness in legs, headaches plus a load of others). after years (6 to be exact) of being dissmissed, i asked my hubby to come along to my neuro appointment, i feel better if he is there because after so long of fighting the doctors with this, i feel i no longer have any fight left in me…so bless him, hes fighting for me. he has said he is going to come along to every appointment from now on, and that might make all the difference. doctors tend to be less rude if u have a companion with you. i dont know if you took anyone with you, but perhaps you should take someone who is willing to be pushy and ask questions and demand answers, because it can be so difficult to do it for ourselves cant it? if you are not happy with the outcome, i would request a second opinion from a seperate neuro…perhaps even at a different hospital if neccessary. i find having a good gp is helpfull with things like that, i have gone to mine and told her what different doctors have said to me (i.e im making it all up) and she has gone out of her way to get me reffered to different people.

good luck with everything

jo

Thanks Pigpen. I was put on Vit D by a different GP last year without any explanation as to why but when the short course finished, because it wasn’t part of my repeat prescription and he hadn’t explained why he’d put me on it or told me I’d need to continue with it, it was never prescribed again. Getting an appointment with my own GP is like rocket science… She asked to see me weekly for the following 4 weeks a while back but there have been no appointments available since then at all as they’re all embargoed! Getting beyond the dictator-esque receptionists is beyond a joke really! I do take Vit C, zinc, glucosamine, echinacea and cod liver oil supplements to try to help with fatigue, stiffness and my rubbish immune system though. Sticking D and B12 into the mix has to be worth a go! I’ve just received a letter from my neuro in which he states I didn’t seem focused on a diagnosis of MS at my consultation! He goes on to tell my GP that I told him one particular symptom was the most important one and it hadn’t even been mentioned previously in my referral by the ortho or my GP. In the letter he makes me sound like I’m putting it all on! I’m fuming! He told me he could only investigate one of my symptoms at a time and asked me to choose which was most important to me. I wasn’t prepared for that kind of question and told him I couldn’t give an answer as I felt it was like him asking me “which of your 15 broken bones would you like me to set for you?” Lol it seemed crazy to me! I simply told him I was concerned about all of them but I’ve lived with some a lot longer than others so when something new occurred it was the most immediately unfamiliar and scary of all the things. He chose to run with that. I just thought the guy was a rude and ignorant prat really and couldn’t wait to get out of there! He also told me he wanted me to stop taking Tramadol as he blamed that for the migraines and visual problems. He wants me to take a higher dose of pregabalin instead but i already told him that doesn’t work for me! Idiot! I’ve tried not to take Tramadol since my appointment with him to test out his theory but my visual problems remain as do the migraines AND I am in more pain due to taking only paracetamol which just doesn’t cut the mustard! He made it sound like I actually want to take pills constantly! Of course I don’t! I hate not being able to even walk around Tesco without being in agony! I was a really active person and now I’m not. Who chooses that??? My GP is lovely. I feel very lucky to have her. I just wish it was easier to get an appointment. I’ll give the surgery a call and see what they say. Thanks and sorry for ranting. It just feels like I’m banging my head against a brick wall. :frowning:

Thanks Jo. I will definitely speak to my GP about how I’m feeling and see if I can get an appointment with a different neuro. I have to collect a prescription for a sedative from her so I can go ahead with the scheduled MRI of my brain, C spine and T spine and get it out of the way. (Sedative due to claustrophobia - for the standard 20 minute scan I can just about cope with meditation and breathing exercises but to be in that thing for a whole hour freaks me out just thinking about it! Lol) It must be reassuring to have a husband to go with you. Unfortunately I left mine 3 years ago so it’s just me and my kids now. My family are very dismissive too as they don’t deal with illness well. Their answer to everything is to “take a man up pill and get on with it!” so I try to avoid involving them in anything to do with mine or my kids’ health. They missed bouncing off the sympathy and empathy section of the clouds when they fell to earth! I have to rely on just myself. That’s my reality and I’ve long since given up wishing things were different as I need the energy those kinds of wishes take up for other areas! Lol Hope your scan gives you some answers Jo. I’ll keep everything crossed for you. X