Neurology follow up, don't know what to do next

New diagnosis and before diagnosis
#1

Just had a follow up with neurology and don’t really know where to go from here, I hope you don’t mind hearing me out.

So, here is my shortened version of events

2011- drop foot for 3 weeks, fatigue, pins and needles/numbness diagnosed as bulging disc

2013- fatigue, pins and needles and crushing feeling in my chest with pins and needles to left hand. Taken to A and E, CT angiogram, Echo cardiogram, reffered to cardiologist ( I’m 35 at this point)
Lasted a few days then came back a month later
Cardiologist couldn’t diagnose me so was discharged

Fatigue persisted, stopped going to gym as was getting exercise fatigue ( severely ) and I was an avid gym goer before

Since then bouts of fatigue and pins and needles but put it down to working too much/bulging disc etc etc

5 weeks ago I woke up with both hands numb and both feet and a vibrating feeling inside my body. Severely fatigued, I took time off work

Huge spell of vertigo when I tried to do some mental arithmetic, so much so I spent the rest of the day in bed

Numbness went and changed to pins and needles carried on, buzzing carried on.

Bladder is not emptying properly, I go then I have to go again right after ( urine checked and no UTI)
Full bloods done x 3, nothing shows

Reffered to neuro but wait is long so I went private as now on the 4 week mark and I’m off work more than I’m there and spend most of the day in bed.

Woke up with tremors in both arms to add to the list and a muscle cramp iny right foot that has made walking a bit painful!

Private neuro did head and neck MRI which I’ve just been told are all clear and told it’s not neurological in his opinion.

Now the question is, I still have my NHS refferal for a few months time Inc a head MRI booked.

The private neuro didn’t do spine MRI and when I asked why he said basically it was to save me money as I was self funding ( it’s true I probably can’t afford another!)

Should I try and get my NHS MRI changed to spine ? Could that show anything ?

Should I keep the appointment with the NHS neuro or will the GP cancel that when my private neuro sends him his verdict based on the head scan?

I don’t know where to go from here, I’m fed up with feeling ill and being numb, I feel like it must be all in my mind! I can’t afford not to work but work makes all my symptoms worse

I wasn’t stressed before this episode and don’t have anxiety or depression.

While I am obviously very pleased that my head MRI is clear, I’m also now wondering why I am getting all these neurological symptoms.
Sorry for the long, frustrated post.

#2

Hello Fizzy one

A question. Did the private neurologist do a neurological examination? Ie, reflexes, eyes following his fingers, pin pricks, tuning forks on feet, standing on one leg with eyes shut, bending toes back and forth, etc (various neurologists do variants of the same sorts of things to measure your neurological responses).

If so, and he is happy with the results of those tests together with the brain and neck (cervical spine?) MRIs to state that in his opinion you don’t have MS, then I’d say not to push for a full spinal MRI at this point.

But, having said that, I think you should keep the NHS appointment, take with you the report from the private doctor (I imagine you will get such a report). Ask the NHS doctor what s/he thinks. I’d expect them to do a further neurological exam and then make some kind of decision as to what they’d suggest next.

Don’t forget, there are other diagnoses that share symptoms with MS. Try to put it beyond you if possible. Have a few sessions of something like hydrotherapy, that might help your body to relax and do some gentle exercise.

Others will have their own thoughts on what next. Keep us informed with what’s happening.

Sue

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#3

Hi Sue,

Thankyou, yes he did do a few very quick tests. He didn’t do the Pronator shift test which I would’ve failed but did the heel to toe walk, the vibration and hammer reflexes. I was in and out in ten mins.

However, I do of course see his opinion is highly professional and am not dismissing it as such more that he said my issues in his opinion aren’t neurological.Until I see a spinal scan I won’t be at rest about it I don’t think

I’ve never suggested it is MS at all, in my line of work you know not to do this sort of thing but there’s definitely something neurological going on, maybe not brain but something.

Anyway, I will keep the NHS appointment and see what they suggest if anything.

And if they don’t, then I guess it’ll either be kill or cure, just try and get on with life again and ignore all the symptoms again until they are too hard to ignore or go away!

I’ve had several family members misdiagnosed before, one which died because of misdiagnosis so I guess I’m a little more persistent than I should be

Anyhow, thankyou again :slight_smile:

#4

I agree with sue, wait for the NHS appointment.

believe it or not stress can cause your symptoms also anxiety.

something is obviously going on like i have said before it took me 16 years to find out what it was.

see now my head MRI showed a high signal foci in the deep matter of my brain and the radiologist said it could be demylinating but more likely my age lol. now my cousin in italy is a radiologist and my mum sent the scans to him they were large ones not on dvd. He came back with he would have said i had something definately going on which was not age related. its kind of like sods law sometimes. over time and 3 spinal mri THEY found lesions in 3 different places, 2 positive VEP tests etc and all the other stuff.

when did it all start can you pinpoint it, and what were you doing?

see now just reading isnt drop foot something that comes after time, that is what orthotics told me. You should see a urologist about your bladder issues and you need a scan on your bladder before and after going to the loo. anyway i would still go.

#5

Thanks Crazy Chick,
Wow, 16 years !!
Did you think you were going crazy at any point ??

I get that stress can cause symptoms but I’m not a stressy person, I meditate and can cope with quite a bit, never had anxiety, my son does but I never have thank goodness!

This episode came on at work, I’d felt very tired and it was extremely hot in my room where I work.

I cam over really dizzy and had to lie down and my lip went numb. I drove home ( I shouldn’t have feeling the way I did ) and went to bed

I woke up with the muscle spasm in my foot and numb hands and feet, lip was back to normal.

Since then I’ve had all the same to varying degrees depending on how much I try and do but I have spent a lot of time in bed because I’ve just been sooo tired.

I did have an ultra sound but I’m not sure they checked the emptying mechanism, they mainly focused on an old area of injury that I had during GB surgery a few years ago ?!

She did get me to go to the loo but said my bladder was filling up really quickly after, I don’t know if that means anything.

I’ve contacted my GP about it but they haven’t got back to me yet.

Thanks for the advice, I’m going to keep all the NHS appointments booked and see how it goes from there and in the meantime try and ignore all my symptoms!

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#6

Quick update.
I talked to my GP and she still thinks something is going on and that it’s not just stress so she’s ordered another MRI, this time of the head and full spine and I’m seeing the NHS neurologist in August :slight_smile:

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#7

Keep the appointment - the more expert eyes on your case, the better. It would be a good idea to confirm to your GP your wish to pursue the NHS specialist referral. I would also ask the GP what (if anything) he/she thinks you should do about the already-booked NHS MRI. You might want to make sure that the NHS consultant has access to the scan you had done privately. I do not know nearly enough about these things to know how standard are (1) MRI scanners (2) MRI scan reports or (3) MRI scan commissioning requests. Maybe you’ve already had done precisely what the NHS was about to do, maybe not. Your GP should be able to help you plan your next steps to help you get the best out of the referral and and information you have already.
Alison

#8

Thanks Alison,

I did have a good chat with my GP, the refferal is booked and she said the NHS neurologist will want his own MRIs to start with a clean slate so to speak.

I’ve requested copies of the private one I had done to take along with me as well. The secretary is posting them to me this week including copies on disk.

I did ask if she thought I should be screened for Lyme’s but she said the neurologist will look into all that. I don’t believe I’ve ever been bitten but you never know.

I’m just glad the GP still thinks we should pursue it, she said the private neuro sounded rather unhelpful and apart from helping me not to worry, he was unhelpful.

Thankyou for your advice x

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#9

many people are bitten never know it. classic was my daughter on holiday in sweden with her husband he has family there. they had gone to some woods for a walk with his families dogs. anyway later she went for a shower he popped in to make sure she was ok and found a large fat well fed tick stuck on her BACK. she never even felt it. the familiy insisted she saw doctor and they gave her antibiotics straight away… this is how they treat it there it is epidemic.

BUT if it is lymes and it isnt caught fast no amount of normal lymes testing will pick it up.

I am just glad someone is taking you seriously. hugs. x

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