Last reply 5 years ago
Update from Neuro Appointment.

I had my appointment on the 25th Feb which i’d waited nearly 3 months for.
He doesn’t want to do any further tests.
I told him again about my leg/back pain, again he tells me it’s sciatica.
I told him i’m still struggling with my speech & handwriting, i asked if there is still time for this to improve and he said things can take years to improve & keep on improving.
I told him i’ve still got the constant tinnitus but he’s not bothered about that.
Told him that i see sort of dark shadows across my right eye and sometime when i look at writing on a piece of paper that i sometimes i see the top of the letters repeated again then it goes away, he’s not bothered about that.
Said that it could be floaters that i’m seeing or because i’m constantly anxious pupils can dilate & cause that.
He said i’ve lost alot of confidence etc which i know i have.
He said if & when i start to think awful thoughts for me to think of the nicest thing i can!!!
I said my VEPS were’nt normal were they, he said it doesnt matter about them, the most important thing is that my spinal fluid was clear.
Straight after the appointment i was happy & it felt like a huger relief that there’s still some tiny bit of hope that i may not develop ms, but it’s gone now, i’m on a downer.
Why didn’t he want another mri? I mean if he saw 1 more lesion that would have been a diagnosis.
He seems quite happy with me.
He didn’t check anything like my eyes/reflexes etc.
I want to be happy but it’s tough.
I get the feeling that some of what he said it true, but some of it is bullsh**!!!

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5 years ago

& bearing in mind, my spinal fluid was clear 16 months ago!!! Could it still be now!!!
I wonder…

5 years ago

I can understand your frustration. The lumbar puncture is used, when an MRI is inconclusive and at that time, it didn’t associate your lesions with MS.
I believe we can get lesions on the brain just through living, although possibly it could have been viral damage, which is where it all started for you.
To a certain extent, your neuro is right. If you keep on expecting symptoms, your brain will help it become a self-fulfilling prophecy.
Does the neuro want to see you again or is that it?
Anyway, how’s work going for you now, has it improved since you started back?
Even though it doesn’t appear to be MS for you, you can still be part of our club here. 🙂 Just try and be positive and see if you can get your life back on track.

5 years ago

Neuro should’ve given you a thorough neuro examination! Have your reflexes ever been tested? … When the docs tested my reflexes this is what finally made them listen, I had the clonus thing going on…

Have you had all your bloods tested? Iron, vitamins and minerals etc?
Have you had b12 tested? If so do you know the results?
Also have you had all your thyroid blood tests?

Hope you get some answers soon!


5 years ago

Im sorry things didnt go the way you wanted.

You mentioned vision problems and possible floaters. Go see an optition about that. If you have any ocular problems they can diagnose them for you. if the optitian can’t find anything there, the chances are its your brain causing the issues.

Thats what my gp advised me to do when i was waiting to be diagnosed. my eyes were fine i just have lesions in the visual centre of my brain (found that out later). But the optician was great and gave me every test in the book. then she made copies of all the test results and wrote a letter to the neuro on my behalf.

good luck and i hope you feel better soon


5 years ago

Really good suggestions here (see optician, get blood tests, check vit levels) because you can get these done in conjunction with your GP. Hopefully, if you go and see him/her and explain your concerns, s/he’ll agree to the tests. This plus getting some feedback from the optician should make the neuro’s conclusions more believable. Your concerns are absolutely reasonable and if getting these tests/optician’s results throws up any more doubt, your GP will have ammunition to get you seen again by a neurologist. I don’t think you’ve anything to lose by setting out the picture to the GP. After all, it’s in everybody’s interest to get your anxiety levels down! xx

5 years ago

Thanks for your replies & support, i really appreciate it. No, he’s discharged me & if i have any further issues etc go to my doctor. Yes this did all start from a virus, diagnosed as Transverse Myelitis, believing that the attack & 2 lesions at the time was caused because of the virus i had. I’ve been back at work full-time since September, it’s going well, its my mind set that’s not! I had all the bloods etc done at the time this initially happened. I went to the opticians in Septemebr due to my eyes, they found nothing wrong apart from needing glasses for long distance in my right eye, i doubt the visual disturbances are due to that. I’ve got a check up at the opticians again in September, but if the eye things keep going on i will go before. I suppose what i’m experiencing isn’t classed as a second attack so he probably doesn’t want to waste NHS money re-scanning me, & as i haven’t had 2 disabling relapses i suppose i wouldn’t qualify for treatment either.

5 years ago

Let’s be positive about this. It could have been a nasty virus that caused this whole set of problems for you.
Transverse Myelitis is one of those terms that covers a multitude of sins, like Clinically Isolated Syndrome (CIS).
The whole situation has caused a lot of stress and anxiety, which can cause their own set of problems.
So, there’s no clinical proof that it’s MS, so on that basis, you don’t have MS!
It could be a mindset problem that you can now address. Hopefully, you can now go from strength to strength and get your life back on track.
But, don’t think you can now leave all your friends and buddies here. You’ve got a lot of valuable experience of being in and coping with Limboland, which could be invaluable to others in pre-diagnosis.
So, you could stick around, if you want to……

5 years ago

Hi Boodle…

I agree with Stumbler & anxiety sure can bring so many symptoms… If anxiety is a problem for you I recommend you try some relaxation/meditation everyday and read a book by the author Claire Weekes (she has written a few books but anyone of them will suffice and cover all you need on anxiety and how it affects you physically!)

Would be interesting to hear your vitamin b12 numbers though as some symptoms you talk about (like tinitus & eye issues) can be caused by a deficiency…
Do you know your b12 reading?

Take care xxx

5 years ago

Thanks for your comments. I won’t be leaving this site, number 1 because you have all been a tremendous help & i’m sure you will continue to be, also it was you peeps on here that got me back to work! And if it does turn out to be ms in the future i know where to come xxx

5 years ago

You go girl. Now you’re portraying the right attitude.
I’m so pleased for you.

5 years ago

I have Tranverse Myelitis (I do also have MS) but the symptoms are so similar the neuro can’t tell which sytoms are Tranverse Myelitis and which are MS. You can have a full recovery from Myelitis 🙂

5 years ago

Hey I’m going through the same thing. The next time I see the neurologist it’ll be 18 months since I got my first MRI. He gave me the feeling he didn’t like someone coming in as educated as I, and well versed in my knowledge of ms. Even with the family history and my line up of symptoms and lesions on the brain, he continued to to treat me like an idiot. Get another opinion theme another and another if need be. Go to a different city but don’t stop searching. This is your body, your life and you are your only advocate! Good luck!

5 years ago

@lindax Some of these consultants have a very good opinion of themselves. As a friend said about a new colleague moving into her office: ‘Needs two desks, one for him, one for his ego’.

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