Hi everyone. I have an appointment with a neurologist on weds and wanted some advice on what questions I should be asking and what other investigations should be done to either diagnose or rule out MS I have a friend/colleague who is a GP and suggested my symptoms could be pointing to MS I will give you a bit of background on my symptoms… I am 33 year old female. Normally very active, I have 3 children and work full time as a manager in a health care setting. Quite a stressful role but I am a bit of a workaholic and always enjoyed the pressure of my job. In June last year I became quite unwell suffering from severe fatigue, headaches, dizziness etc. I was sent to hospital with suspected meningitis but tests were all clear. I was like this for a couple of weeks barely able to get off the sofa. Then one morning woke up with right sided facial palsy. I had an MRI to rule out a stroke and it was normal. I was unwell for around 5 weeks then improved. The GP diagnosed bells palsy and a viral infection. I improved and was back to normal rushing around at work and home. Then at the end of November I had been feeling more tired than normal then the right sided facial palsy returned along with headaches and this time difficulty swallowing. My symptoms were not as severe and I recovered in 3 weeks. Again diagnosed bells palsy All was fine until 7 weeks ago. Was out shopping and suddenly felt exhausted and asked my husband to take me home. We got home and I had to sleep as it felt like my whole body was so heavy and tired. I slept for a few hours and when I woke up yet again the right side of my face was paralysed. When I say the right side of my face it is only ever the lower part, my eyes and forehead are unaffected (in bells palsy the whole side of the face is usually affected but for me that’s never been the case) I saw a GP and was given steroids and anti viral. 4 days later I started to feel really awful I was struggling to get upstairs, kept experiencing shaking episodes.The GP said she would refer me to the neurologist. Over the next few days I was struggling to walk as I was unstable and had weakness and numbness in my legs. I was having severe dizzy spells, pain all over my body, started having trouble getting my words out, difficulty opening my bowels, couldn’t cut up my food, tingling sensations, lack of grip with my hands to do simple things etc. I called the Dr’s back and they told me to go to A&E. I went and was seen by the stroke team. They didn’t think it was a stroke as the weakness wasn’t just one sided. I remember the Dr repeating the plantar reflex on my left foot many times… buy I’m not sure why… I had blood tests and chest xray all were OK. They gave me Iv antibiotics and I was discharged with a follow up appointment for an MRI of the head and to see the stroke team again. I spent the next 4 weeks barely able to do anything for myself. I developed twitches/ spasms in my legs arms and body that I get every day non stop. I saw the stroke team again and the MRI showed no sign of stroke. When he was looking at the scan he said he saw something in the brain stem area but then at the end said that it was essentially normal. He said that the neurology team should do more tests I have improved a little, I can walk better now and can speak properly again. I still have the facial palsy, pain, tingling sensations, headaches, fatigue and twitches. If I try and do too much then my symptoms worsen. I went into work 1 day last week for 5 hours and when I got home I could barely move. There was pain in my back and legs and I could barely walk. It is 7 weeks since this started and I’m due to see the neurologist on weds. I just wanted to ask those of you who have been through similar what should I be asking the neurologist and what other tests etc should be done. I don’t want to be fobbed off again that this is bells palsy as I know that wouldn’t have caused all the other symptoms. I just want to know what it is and whether it is going to keep happening. As it’s the 3rd time now in 8 months and this time the symptoms were so much worse Sorry for such a long post!! Any replies would be appreciated. I feel like I’m in this kind of limbo not knowing what is wrong or whether I’m going to recover
Hi Sarah,
it’s worth writing down a timeline of your symptoms, this e-mail’s pretty comprehensive so you could just take a copy. They won’t necessarily want to see it but it will help you jog your memory. At my appointment he just asked lots of questions and did a physical examination, half an hour later he knew that it was an upper motor neurone issue and sent me for an MRI. If they are a good neurologist they will know the tests to do that will narrow the possibilities.
Whatever the outcome remember that there are treatments for symptoms and a lot of neurological conditions are variable. I was diagnosed with SPMS ten years ago and still thoroughly enjoying my life.
Let us know how you get on.
Becky x
hi sarah
absolutely don’t allow anyone to fob you off
remember it’s your body and you know it better than they do.
my neuro is wonderful but i cringe reading about how awful some of them are.
are you prepared to be offered a DMD?
it may help if you do some research on what is available.
good luck
carole x
The Dr’s I’ve seen so far can’t seem to decide if it’s upper motor neurone cause or lower motor neurone cause… and some don’t seem to know which is which one told me it’s a LMN cause as it affects the lower part of my face. I will take some notes with me as suggested so I don’t forget anything What is a DMD?? I don’t know much about MS or other neurological conditions… it was only my GP friend mentioning ms to me that made me look it up. Thanks for your replies and I’ll keep you posted on what happens on weds xx
So 4 hours before my appointment I got a call today to say it was cancelled 
they offered me another appointment in may! I nearly cried. I think the lady must have heard how upset I was and she called me back and has now fitted me in on Monday. After 7 weeks of literally counting down the days until I would hopefully get some kind of answers as to what is wrong to find out it had been cancelled all of a sudden was really hard. It didn’t help that I’d been at Addenbrookes hospital with my son all morning who has recently been diagnosed with a benign brain tumour so already it was a stressful day. Roll on Monday. Fed up of feeling so awful and just want to know what is wrong. Sorry moan over now x
hi candy
you asked a question on the 26th march, what is a DMD?
sorry i didn’t get back to you sooner.
a DMD is a Disease Modifying Drug - these reduce the number of relapses.
relapses cause disability so DMDs are a good thing to have.
they come in injections, tablets and infusions.
the infusions are the strongest but most neuros like us to start on the injections or tablets.
these are also very good
i started on copaxone in 2009. it worked well for 4 years but my injection sites were a mess and my ms nurse was appalled by the state of my arms so she got me on tecfidera (tablet).
they all have side effects so you need to look at the pros and cons of each.
have you managed to have a look at these?
good luck for monday. are you taking someone with you?
it’s good to have another pair of ears and someone who can prompt you if you get overwhelmed.
carole x
Thanks Carole. It’s not something I have really thought about but I will do some research before Monday! My husband had taken weds off work to come with me and can’t take Monday off at such short notice so my mum is going to come with me instead. Sarah x
I saw the neurologist today… he said that I definitely don’t have bells palsy as my facial paralysis is an upper motor neurone cause as it doesn’t affect my forehead. As my MrI scan was OK he diagnosed me with migraine! He was writing a prescription for migraine medication before I’d even finished telling him my symptoms… weakness numbness twitches and spasms pain fatigue etc. He just kept nodding saying yes all this can be caused by migraine. My symptoms have lasted 8 weeks so far… I really don’t think I have a migraine! I asked about ms and he said that it can’t be that as my scan was OK. Does a normal MrI definitely rule out MS? I didn’t have the contrast with my scan does that matter?
Just a quick update on what’s happened since I last posted after my awful neurology appointment. I went back to my GP who also didn’t agree with the migraine diagnosis and said I needed a 2nd opinion. I decided to go private and the GP recommended a specialist in motor neurone conditions ms and rarer conditions. The consultation cost £290! But I think it was definitely worth it. I saw him yesterday he was very kind and understanding. Listened to me and examined me properly. He did not think I have migraine or bells palsy. He noted weakness on my right side and witnessed my muscle twitches/spasms. He said I needed more tests to identify the issue… Mri brain and spine with contrast, lumbar puncture plus others that I can’t remember! To do these tests privately will cost ££££’s so he has said if my GP writes another referral letter to him at the NHS hospital he is based at then he can arrange all this on the NHS and we can go from there. I feel so relieved that someone wants to help me!
Hi
I am awaiting a Neurology appointment and have already been told that I have ‘bright’ spots showing up on my MRI of by brain. My current symptoms are terrible anxiety which is becoming unbearable. I do find that if I force myself to do something e.g. play a round of golf I can get round and feel better after but then I am hit hard with another bout of anxiety/depression. I am thinking of going back to my GP (if I can get an appointment) to see if I can get something for the anxiety prior to the Neurology appointment. Do you think this is worthwhile? I have previously been prescribed propanalol but this reduced my heart rate too much and I was taken off them with no replacement.
I have tried ‘self talk’ until I am blue in the face but can’t get myself out of this downward spiral. Any suggestions?
Exact same thing here. I’m 45 year old male, who, until 1.5 year ago was running long distance races.The neurologist had made up his mind even before seeing me with a cookie cut migraine diagnosis. Nothing has changed since taking prescription, and even gotten worse. A neurosurgeon I saw for some other reason-though related-said he cannot see how this would be migraine with aura. I have weakness, pain, numbness and tingly feel in my left arm and leg. Left eye blurriness comes and goes. Though, not visible from outside a numbness and burning sensation in my cheek and lips; feeling as if I had botox injections. And now, my hearing in my right ear is weird, as if there is a walkie talkie mic in my ear and repeats all noise in my ear with that metallic sound. Music is no longer joy… With my wife being 31 week pregnant, timing is really bad for all this.