Hi, I’ve been viewing here for a while but never posted. I really need some advice if possible? I’ve been ill for a couple of years. Initially told I may have lymphoma, but lymph nodes removed & all good. This all stemmed from sudden onset of all over pain. I started with eye problems 9 months ago, with the opthalmologist seemingly unable to diagnose or explain symptoms. This culminated in a very serious achantamoeba infection which almost blinded me! Finally sorted that 10 weeks ago, but left with blurred vision in right eye. Well I say left with, it actually seemed to happen separately. In amongst all this I was dx with hypermobility syndrome & fibromyalgia. Now, the opthalmologist decided that the blurred vision was nothing to do with the eye itsf or the scarring, but the brain. The optician confirmed this too. On top of this in the last 3 months I start with weird & wonderful symptoms, mainly on my left side. These include face burning & paralysis, creepy crawled on head, instability & foot in a puddle. All of these have been quite full on. My ongoing body pain stopped in May & June altogether, but came back somewhat worse. So, reluctantly my GP referred me to the neurologist. Only really as he was asked to by opthalmologist & rheumatologist. GP very unhelpful really & I can only imagine what the referral might have said! Probably ‘hyperchondriac’ etc etc. So, I agreed to see neuro, under duress really, only due to my concern for my vision. Other than that I wouldn’t have gone. I’ve totally had it with all these people! So I saw the neuro on Saturday. I think I’m still in shock. He totally dismissed most of what I said in 5 minutes flat! He said its likely I have CFS on top of other dx, & I fit in to the category of ‘medically unexplained’. What!? But, on top of that I have to have a brain & spine MRI to be sure, which I find very confusing? Having been told by him that whatever I have is not behaving like MS, why do I need that? I know I shouldn’t be annoyed about being offered a scan, but I am tbh after the way he made me feel. After everything, what I find hardest is, I continue to work full time as a police officer & I am a mummy to my gorgeous 6 yr old. I have tried & tried to keep going, to not give in, to not feel sorry for myself, despite some days having real trouble coping with the pain. But somehow they seem to use this against me? Like I can’t be that bad? I’ve tried to be so positive but I think I’ve almost had it. I’ve been unable to lift my arms some days of drag myself out of bed, & the rheumo suggested I exercise more!? I even had to stop physio & hand physio because I was too weak to do the exercises! I’m so close to telling them where to stick it The last thing I want is a dx of MS, but I felt so totally disregarded & made to feel like a weirdo. I don’t know what to do now? He also said to me that even if there are lesions on my report, that doesn’t mean anything & in fact to expect it, but disregard it. I have no idea what’s going on. Thanks for listening. Literally, no-one else understands Kate
Hi Kate, I do understand where you are coming from, Dr’s dont seam to be interested do they? I have been off work since Nov 2011, I work as a Nursery Nurse, and found it to difficult to do. Vertigo is a nightmare, and dizzyness and everything else!
Do you get memory loss, ? Today was awful so stressful, I was too hot and found I was so tearful. Also I became very agitated and felt so awful. Going back to my Gp, because this is not right.
I dont know how you still work full time, I admire you for that. Hope you get sorted soon.
Gosh your neuro sounds like a right pain in the * and it sounds like you’ve been in the wars. Hats off to you for trying to manage work and having a small child - but it sounds like its time to get some help. All the stress of juggling everything can’t be doing you any good.
You’re not a weirdo - and so many of the others on this forum will support me in saying that. Just because you don’t know whats causing your symptoms now doesn’t mean there isn’t a reason for them.
I really really sympathise because my first neuro was rather dissmissive wouldn’t help me with my symptoms or explain things and I work for the NHS. I’ve had symptoms since last March but was referred in oct after a big flare up of symptoms. I don’t have children but like you have been trying to balance working with everything.
It got to a point after having a further 2 episodes of symptoms and the neuro dissmissing me that I realised I wans’t happy and needed a second opinion. Unfortunately if you’ve read through the posts in the forum you’ve proabably realised there are quiet a few dud neuros out there.
I guess with the knowledge of what I’ve been through uptil now I’d probably go and have the MRI - whatever his reasons for sending you it will give you some idea of whats happening. Make sure you request to have a copy of the images on disc for yourself too (in case you go for a second opinion). See the neuro back again and if he’s not helpful or supportive go back to your GP and get referred for a second opinion - if he’s not supportive get a new GP in the meantime. Don’t put up with it, the only person who will suffer as a result is you. Its bad but sometimes you have to shout, SHOUT and SHOUT to be heard so don’t give up.
I think it can help sometimes to know you are not alone not that it makes it any fairer. I was Dix with MS in June this year and was lucky enough to have an amazing GP and neuro. However my sister in law has had a terrible experience with the NHS! She suffered severe pain all over and look ages to be taken seriously. Even when in hospital with swollen ankles they were suggesting it was in her head. She was finally diagnosed with fibromyalgia ( which has many similar symptoms to MS) and lymphodema. Even then getting support and pain relief sorted continues to be a struggle. You need answers to all your problems don’t be put off be persistent.