Hi, I had my first neuro app today. He was nice and listened to all my symptoms, I spent 45 mins with him so didn’t feel rushed. My symptoms in brief are as follows, leg pain and weakness, which started 18 months ago, was intermittent but became constant August this year. Rest of symptoms started around May this year, pins and needles and numbness in hands, " ants" crawling up legs, hot stabbing pains, dizziness, balance problems ( I fall over if standing still and eyes closed) vibrating feet and fatigue. Have been on amitriptyline since sept which has helped a lot. Leg still a problem and have difficulty walking some days. After telling him all this he said it was chronic fatigue syndrome. He then tested my reflexes, which didn’t appear even on both sides to me, plus no reflex when running pen up the sole of my feet. He asked if I felt I needed more investigation! I said yes, I want an MRI scan. He is arranging it and also a nerve conductive test, “just to please me”! But he said, it will show nothing and then you’ll believe me that it’s CFS. I don’t want it to be MS, but I also don’t want them to discover in a years time that I’ve had MS all this time and had nothing done about it! If all comes back clear I’ll be satisfied that it’s CFS and deal with that. Any opinions greatly received! Helen
Hi Helen did you ask or did he say what made him believe it to be chronic fatigue syndrome? Have you read the nhs website section on chronic fatigue syndrome which includes NICE guidelines for diagnosis? If not then i would suggest doing so. i haven’t really got any other words of wisdom for you unfortunately sorry.
Hi Helen did you ask or did he say what made him believe it to be chronic fatigue syndrome? Have you read the nhs website section on chronic fatigue syndrome which includes NICE guidelines for diagnosis? If not then i would suggest doing so. i haven’t really got any other words of wisdom for you unfortunately sorry.
Hi Helen did you ask or did he say what made him believe it to be chronic fatigue syndrome? Have you read the nhs website section on chronic fatigue syndrome which includes NICE guidelines for diagnosis? If not then i would suggest doing so. i haven’t really got any other words of wisdom for you unfortunately sorry.
Hi, He said my symptoms where that of CFS, I hadnt even thought of that. I haven’t read it but will have a look, thanks for imput. 
The reason i ask is that i have had problems for years and was told it is chronic fatigue syndrome and fibromyalgia as nothing could be found in blood tests. No other tests scans or examinations were done… until a few weeks after the birth of my 2nd son when i lost mobility, with ms now a possibility. have since read up on diagnosis of chronic fatigue and fibromyalgia and know that what the nhs website states and what happened to me are two very different things. i was keen to have a label for what was going on so readily acceptes my GPs explanation… do not accept a diagnosis unless you are sure that they have exhausted all other possibilities!!
Helen - I’m in a similar position myself. My GP seems quite sure that it is ME/CFS but has referred me to a neurologist (in just under two weeks time). I’m on no medication and have not been given any sort of treatment plan yet. I walk my daughter a mile to school. Normally, I love the journey. Its my exercise for the day. Some days, however, it wipes me out! Especially after I have to jog a few steps now and then to keep up with her scooter! I’m not certain I agree with my GP, mainly because it doesn’t feel right, backed up with what I’ve read about ME vs MS. Birdlady - thanks for pointing us at the NHS website. Very useful. So…let’s see what happens at the first appointment. Take it easy, everyone!
Hi, Birdlady “do not accept a diagnosis unless you are sure that they have exhausted all other possibilities!!” - don’t worry I won’t! I’m sure some of my friends think I’m just wanting a diagnosis of MS and I really don’t, but more importantly, I don’t want a wrong diagnosis. I’ll not give up until it’s proven one way or the other! Reiki - be firm at your app with neuro and insist on MRI etc. I really don’t understand how, when faced with a set of symptoms, they choose the less serious option first. Surely you rule out the serious ones first?! Maybe it’s all down to cost. I’m seeing my GP tomorrow and see what she has to say about it! Stay as well as you can! Helen
I’m at the same point with you and Reiki. My doctor is going the neuro way due to my many neuro symptoms (won’t bother listing them all). The main thing is the chronic tiredness, the weak legs and arms and the tingling I’ve been getting has made my GP agree that something neurological could be going on. So I’m off to neuro next Monday for my first appointment. I want an MRI done just to rule out the possibility of MS after my GP showed her concerns over it. Either way I’m going to be coming out with a diagnosis that has been investigated. I really hope that something get’s on it’s path to finding you some real answers.
Would you be happy if the MRI came back clear and got the diagnosis of ME/CFS or would you want it to be investigated further?
That’s one question I’m kind of struggling with at the moment. I know something is wrong, but I’m not sure what. My gut instinct is saying it’s either ME or MS…
Best of luck to you
Tsuki xxx
Hi Tsuki, If my MRI comes back clear I want more tests done as I heard that sometimes your MRI can be clear but still have MS, maybe if symptoms persist i will ask for another one in maybe 6 months. I read up on M.E and I don’t feel that it suits my symptoms as much as MS does. http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ If you haven’t already read about M.E., have a look at the above link. Also, I very much doubt you’ll get diagnosed at first app, depends on where you are I guess but you’ll have to wait for an MRI app and then neuro will look at that. Best of luck getting through limboland! Helen
Hi Helen,
Having had a previous ME/CFS diagnosis myself (and having friends with ME/CFS), I know how similar the two illnesses are, but I’m afraid it made me really angry to hear that the neuro spoke to you in such a way. I’m so glad that you pushed for your MRI and I think it was very unprofessional of him to diagnose you without further testing, especially considering your neurological symptoms.
I hope it comes through quickly but wonder if you’d be better seeing another neuro for the results?
Mags 
I’ve had a look at ME and I’m not sure which one it is quite frankly. I know the wait in limboland is long and I just got to see how things go. Just all the neuro symptoms don’t seem to fit ME/CFS and that’s what has confused my doctor too. I know I won’t get diagnosed on first appointment. I got a long wait of MRI’s, LP’s, EVT’s… all depends on the neuro and my results too. So much is unknown at the moment that I’ve been bracing myself for everything! Either way I want to walk out with a diagnosis so I can say this is what I have and get on with it. But that doesn’t mean I’m going to be fobbed off like your neuro tried to do without doing any investigations. Which I’m actually appauled at!
Thanks for the advice and link though Helen! xxx