Went for my first neuro appointment and I’m still a big giant ?
The neuro was lovely and has been one for 20 years and was very thorough with me. Lots and lots of questions which was a bit off putting, but overall he didn’t want to leave me with any false hope by saying what he thought it could be. He mentioned that because I was pacing myself (which is part of the treatment of ME) he didn’t think it could be that, but to wait and see how it goes.
He did lots of reflex tests, touching of the nose and following his finger.
He’s going to do a MRI on my head and spine as the symptoms I’m having point to that part of neuropathy. That’ll be 4-6 weeks (quickest in the south for that which is quite good). I’m due to see him again in four months time.
My only question is that he said he’d wait and see to get the scans before saying anything on what it could be. My GP already said if they find nothing neurologically that she was going to give me a diagnosis of ME. Is she going to ignore that the neuro said MUS (medically unexplained symptoms) and give me a diagnosis or what?
So I’m still firmly stuck in limboland and hopefully be about 2 months before I find out anything more.
I’m off to see my GP about the appointment anyway as I’ve been diagnosed with an essential benign tremor (runs in my family so knew that was going to come up!). I think I’ll bring up my question of ME as he seems to have misinterpreted what I said about how I do develop malaise after over exerting myself.
He said it was better not to be diagnosed with something than to have a label. Now I can see where he’s coming from, but at the same time MUS isn’t going to get me anywhere with anything (benefits, working, etc).
What are some of your guys’ thoughts?
Tsuki xxx
Hi,
Benefits are not supposed to be about diagnosis, but more about what you can and can’t do. So its still worth while applying. there are many of us who seem to be on a wait and see list at the moment. I find a number of medical professionals reluctant to make any diagnosis unless they are 100% certain.
take care and good luck
xx
I like the fact he’s wanting to be certain of a diagnosis, but at the same time I’m hating being in limbo and just wanna know! Hard balance to find. So I’m still going to take things day by day that’s all I can do. But thanks Medion for reminding me , I guess I just lost sight of the here and now.
The best bit is that it’s being investigated further and that I’m not paying out the ear for all of this either. Just going to have to learn a little more patience lol xx
Ha ha for a minute I wondered why you were a big giant d’oh. Not sure I’d be happy with being medically unexplained as a reason, that’s not to say I’d want a dx of something debilitating etc I just like to know the cause of things even if it’s a slipped disc vit deficiency etc. I am sure you could still get benefits etc without a dx though if you have symptoms causing problems. Axx
Well for one thing the Medically unexplained wouldn’t explain the chronic fatigue… I physically cannot exercise. I did tell him that as well, but he seemed a bit more like “ME still isn’t a medical condition” type of doctor. The last time I tried exercising for a whole week I couldn’t walk up stairs properly. It took my body nearly 2 weeks to recover properly to the oint where I was well enough to exercise again. And with a fairly active job I doubt I should be like that at 23! xxx
Tsuki
Neuro sounds like a good one, it would be unfair to tell you what he thinks til the MRIs are done 
If you suffer from fatigue, has your surgery checked your B12 levels already? Also, from reading other stuff, I did read something that said it should be considered giving people with chronic fatigue syndrome a coeliac disease bloodtest (but doctors aren’t obliged to do it) - just throwing it in there but it might be worth asking your gp for the test?
Sonia x
I’ve had every single blood test there is at GP’s and all has come back clear but I’m still taking complex vitamin B in the morning to help combat it and it’s helped a little bit so far but only been on it for 2 months. They tested my thryoid every year for the last three years as at first my symptoms kept going that way.
He is a very good neuro and was very thorough so I’ve got lucky in the sense that he’s willing to go further. He wasn’t happy I was on prochloperazine for my vertigo, but I’m not going to stop taking that until I feel better. If I go too long without a dose it makes me go all sea sick feeling. But like he said, he’s going to think that cause he’s a a neuro lol
Just wondering if my GP is willing to dismiss his idea of MUS if everything comes back clear. She stated she’d start down the ME/CFS route if all was fine at neuro.
He was very honest with me and said that I probably thought of MS and that I don’t have the signs of Parkinson’s (I def didn’t want that!). But there’s been people that have been diagnosed MS just by a MRI when they haven’t been showing the typical signs. Throw caution to the wind is his thinking and tbh I don’t blame the guy!
Last thing I need is to be thinking it’s something when it’s not! Thankfully I haven’t fully looked into anything. Just briefly at the symptoms and then left it at that.
Thanks for all the advice though! xx
Its so frustrating not knowing, I totally agree. Keep going and know you are not on your own.
Catherine x
Mmm…it is a tough one Tsuki and as someone with a previous ME dx I can see where you’re coming from.
I agree with Nina though in that he is a goodie as he doesn’t want to cloud his judgement with a previous dx (mine was the same and it did worry me at the time).
Post exertional malaise can also be a symptom of autonomic dysfunction (and was one of the reasons I was sure I had ME). It’s apparently not common in MS but it does happen.
With regard to your GP, I’d just hang fire and see what the neuro has to say, as they’re the experts. 
Mags xx
It’s hard because MS and ME are very similar but my GP did the referral to make sure there was nothing there as it has to be done just to be certain, but didn’t feel it was something neurological.
It is very hard not knowing, but I’m seeing the positive in it and hopefully something will come or not come out of the MRI.
Thanks everyone really does mean a lot xxx
Hang in there! I’m glad things are moving forward for you. Were you given any suggestions as to how to cope with what you’re experiencing?
No advice apart from to keep doing what I’m doing. It’s hard cause as much as I expected nothing it’s still like you want some form of answers or guidance when you’ve gone. It’s done and overwith now, just gotta get all my ear piercings out when I go to the MRI which will be fun trying to get them back in lol! xxx