Neurologist on friday

New diagnosis and before diagnosis
1

I haven’t been diagnosed yet (I’m still hoping its something else) but i have my neurologist appointment on Friday.

I was diagnosed with chronic fatigue syndrome years ago after experiencing a period of extreme fatigue. Eventually and with the help of some vitamin d tablets i got back to something like normality. Last July i started experiencing fatigue again but at the same time i was getting a weak, dull feeling in my right arm. not quite numb but not quite right either. Loss of coordination in things like picking up pens etc. After months of blood tests etc, all of which were fine, my doctor gave up a bit. The feeling subsided a bit but then a few months later started back worse than before with no obvious reason. At that point they referred me to the neurologist because i was getting numbness in my fingers too.

Just before New Year i experienced numbness in my right cheek up to my eye. At this point i have to admit i went from being fairly sure there wasn’t much serious wrong to panicking. The arm was now getting worse to the point of being quite disabling (its my dominant arm and i work in an office). I was given some steroids which helped whilst i was taking them and it died down a little but after a few weeks is creeping back in.

My GP said he had no idea what it could be but did ask if anyone in my family had MS or had a stroke (my dad had a spinal stroke). Of course i googled MS (why did i do that?) and actually realised there were a lot of other symptoms i have suffered with for a while but had passed off as part of the chronic fatigue and ignored.

As i said i have the neurologist on Friday and im going to write list of symptoms etc although i find it difficult to describe them but im not really sure what’s relevant to them. i don’t want to waste their time going over everything in the last 5-6 years but equally i don’t want to ignore something important. I really just want an answer of some kind, good or bad at this point.

Wow that was longer than i expected but really just wondering if anyone has any pointers?

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Hi Elburnzo

You have given a good description of your symtoms here, so hopefully you can tell your neurologist on Friday. Although the neurologist will take time and ask many questions about your health and will test your arms legs hand to eye coordination balance any illnesses that you may have, early childhood problems any headaches, he may ask you to explain about what is happening to you as well now.

Mine asked me why I was seeing him? I didn’t know why.

Then he may ask you to have some tests lumber puncture which is nothing to worry about, a blood test, they take it on the same day as your LP and then the MRI this all takes time.

And even though you may have some white matter changes or legions, they usually like two MRI showing changes.

One thing though try not to google, ask your questions here they maybe able to answer your questions or give you a link that may help. Hope things go well on Friday

Kay

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Hello

You have the right idea, write down a list of what’s happened to you and when. If it seems relevant, then it doesn’t matter how far back you need to go. Put dates on symptoms, include whether and when, the symptoms improved or anything that’s stuck around.

The neurologist will ask you, as Kay said, what has brought you there. That’s the point at which your list of symptoms comes out, and don’t write the list then leave it in your pocket because it seems silly!

Then I would expect the neurologist will do a physical examination, testing reflexes, sensations, pin pricks, balance, various other tests, the reason for which I have no clue.

After that, the neurologist will consider what s/he’s heard and what s/he’s seen and then refer you for tests as appropriate. This could include MRI, nerve conduction, lumbar puncture, bloods, visual. Or any others as far as are deemed necessary.

You can ask what the neuro think, but may not get a direct answer. Some neurologists do talk their way through a differential diagnosis, and others prefer not to.

Just make sure you ask at the end what happens next. And if you have a friend / relative to come with you to the appointment k all the better, it’s on easy to walk out of the appointment forgetting everything that’s been said.

Best of luck for Friday, come back and tell us what happens.

Sue

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thank you for the advice!

I’ll write out a list of everything. My doctor believes everything is a coincidence, unfortunately im not exaggerating! I told them every time i get the issue with my arm i also suffer from crippling fatigue- Coincidence. May face went numb on the same side as my arm- coincidence. They gave me steroids which half an hour after taking caused me terrible pain in my lower back- you guessed it- coincidence! After a while it makes you wonder if your imagining things!

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Hi Elbrnzo If you think that your doctor is not listening to you, go to another one, if there is more than one in the surgery. Is it your GP or Neurologist? I had that problem with one doctor he said that there was nothing wrong a had me book a blood test for diabetes, so I went to one of the partners of the surgery and told him my problems, he listened got me another blood test for my thyroid and found out a few days later that I had an underactive thyroid. That was nearly seven years ago I only go to the partners now even though they are very busy, if it’s a sore throat I go to any one. I feel much the same I have symptoms but they are not to bad and sometimes I think it’s my imagination, then I stand up and I get all dizzy or I start limping because of the hip pain. There is one thing different I have already had an MRI and a Neurologist appointment, so I know that there is something going on. I would talk to another doctor if you feel that one is not listening. Good luck Kay

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Fortunately just the GP. I’ve seen three so far, the last was a bit better at least and seemed to recognise my issues.

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Good luck Friday. I know several people with M.E. who went on to be diagnosed with different things. Write down your main symptoms. It could still be a long old road before you find out anything but at least you will have started a journey.

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Hi, Just wanted to share my experience.

Im undiagnosed to and had my first Neurologist appointment a couple of weeks ago following an MRI for what the doctor thought was a trapped nerve that shown up a suspect area on my cervical spine, which I was told is demyleination which after googling can be MS and so it led me to this forum.

Its all come as a bit of a shock to me, looking back, yes Ive had various symptoms but over the years they’ve been put down to other things or been dismissed and Ive just got used to them. Following advice from here, I started a diary of my symptoms daily, I do think anxiety has a lot to blame as I seemed to have had everything since my MRI results! I also tried to think back and did a time line of health issues Ive had, the Neurologist did ask me about my history. He also did the reflex and balance tests and said I was to have a further MRI of my full spine and head and also blood tests.

Ive had my copy of his report back and its all a lot of gobbley gook to me and my history a bit mixed up, things I thought were important like my dodgy hips and weak knees, light headedness etc arent mentioned but basically it says small area of ‘probable’ demyleination at C2 that must be investigated, so MRI and bloods taken to test for … and a long list of other possible causes. I am now waiting for the MRI which he says isnt urgent.

Good luck with your appointment, hope everything goes well for you.

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Hi Scared111 It really does sound the same as me, I didn’t understand what demyelinating disease was and that was what was the reason I got on to this site after Googling a few sites. I have to say that now I have been on here for a little while I understand the doctors letter a lot better. My letter says a lot about my early life my other illnesses that I have, the fact that I have double vision and that I have some patches in my brain but they are alright but there’s on which is like the demyelinating disease, so he has recommend a blood test, done lumber puncture done and maybe a MRI waiting. I phoned up the secretary she told me that it might not happen MRI but she will ask the neurologist about it and get back to me. So I am all set for the appointment in April with the neurologist. Still not knowing very much. It is only one legion they might not do anything unless the LP comes back positive. Good luck. Kay

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Hi Kay,

Thanks for sharing, the waiting and not knowing is awful isnt it but reading some posts I realise I have been extremely lucky to be seen so quickly. I do feel a bit like my lifes been put on hold until I know either way. Ive come to terms that if it is then theres not much I can do to change it and I will have to just get on with it or anything else they may find but it is scary.

I have a manual job, working with my husband, we are self employed so thats on my mind too as I did struggle a bit last year. There is something going on with me as although I say this all came as a shock Ive been putting off going to the doctors for years with my weak knees as I just cant explain how they feel, its wierd and not every day, plus I dont want to look stupid or be labelled with Anxiety again!

Maybe it is anxiety or Menopause, Im 47 now but I cant get away from the lesion that was seen on my neck

Wishing you all the best

Louise

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Hi Louise Are you on HRT yet or that is yet to come. I have been in menopause since I was 42 when I had a hysterectomy they took everything. I was then put on HRT which was good but I had been on it for about ten years when problems happened and they took me off I don’t have to many problems with it now, hot sweats, but nothing else. I have symptoms that are happening one day but not another, I am in pain most days but sometimes it’s worse and not much can make it go away, tablets, the doctor well I haven’t been to see him about it so it’s my fault but I think that they wouldn’t give me anything because of the neurologist might not like it. I am on a lot of tablets and it’s a balancing act to mix them up. Of cause you have anxiety, it’s a life changing diagnose. The fact that they have found something means that they will have to look into it. Keep coming on to this site write out things that your worried about read lots of posts and lots of questions, there is somebody that my be able to give you their experience. My mum says to me don’t look back at what you my think are symptoms of MS because you will upset yourself even more than you are doing, and it might not be MS at all but something else totally. Or it may be something really simple. I hope that all goes well. Kay

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Thanks Kay,

No Im not on HRT, I really thought I was going mad in my early 40’s lol, docs thought I was too young for menopause but I was tested and offered HRT back then. I just felt relieved that I wasnt losing my mind so just said I was fine now I knew why I was feeling like I was and that if I got worse Id go back, I didnt lol. Im mostly fine though, just hot sweats and occasional mood swings really.

Your Mums right, I have had every symptom going since my Doctor mentioned MS and I googled Inflamed Spinal column The mind is a very powerful thing!

My knees arent painful, just strange, my hips are painful but I put that down to years of horse riding. This last year my joints click constantly, maybe something to do with hypermobility. Gosh I sound a proper demic lol.

The Neurologist said he knew MS had been mentioned but that if it was, there were so many drugs out there nowadays that have slowed down and almost halted its progress and that it wasnt the condition it used to be, he also said I had to remember it may not be MS either.

Lovely to chat to you, fingers crossed for us both and of course anyone else reading this in the same position.

Take care

Louise

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Well I had my appointment today. Typically my symptoms weren’t in attendance with me at the appointment so the neurologist couldn’t physically see anything major wrong with me but said that my medical history was more than enough to warrant a scan. So I should get an mri scan within the next 4-5 weeks then I’m to go back to him and discuss the results. He said he doesn’t think it’s anything too sinister (not sure what that means) but it was best not to speculate until we get the results back. He also advised against googling it as there’s too many different things it could sound like. My dad has had a spinal stroke previously so he felt that was enough reason with my symptoms to check it out further.

It means more waiting but at least it’s getting looked into.

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Hi I am so pleased. Your are now in the limboland time. After the MRI you only have to wait for your appointment for the neurologist, if there is nothing you will be discharged. Hopefully that is what will happen. All the best Kay

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Hello again Elburnzo

The physical examination done by a neurologist can pick out specific reflex responses typical to certain diseases. So there’s certain responses to tests that will demonstrate whether there’s a neurological problem. They can even hazard an informed guess as to what neurological problem is causing the response.

If the neurologist says there’s ‘nothing sinister’, that generally means your reflexes and responses were all ‘normal’.

Having an MRI scan will hopefully just confirm that there’s nothing major wrong.

Let us know what happens.

Sue

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Elburnzo now you wait. I felt in my journey all i did was wait lol. But you will get there, i would suggest for now you just enjoy your life. Oh and leave Dr Google alone lol. xxx