Last reply 9 months ago
Advice as to what test to look for

Hi guys
So looking for advice by Monday as to what test to look for??Big history of poor immune system lots of colds and flu worst ever last winter a Gp who likes giving antibiotics.October flu injection.December another respiratory infection.Pins and needles right foot goes again.March 2 bad respiratory infections back to back multiple antibiotics.Late April intermittent numb sensation right foot.May intermittent sensation both feet.End May both feet permanently altered signed off work.June fingers tingling and electric sensations. Went to an A&E told I’m imagining it as I’m walking normal.End June electric shock in back of head and down arms.Nerve pain burning sensations all over worse by evening.Feet feel so heavy am walking less.Saw a private Neuro brain cervical and thoracic scan done without contrast said can’t be Ms scan is normal try B12 and up painkillers.B12 level was normal before did injections no result after.Nerve pain gets worse right hand feels weak intermittent pain right eye.Go to a new Dr really listens told her I can’t afford anymore private Neurologists as off work and wages stopped. REFERS me to University hospital Neuro wait is 6-18months. Told to keep ringing try get on cancellation list.Told there’s no cancellation list you will be seen in 6months.Today sore throat eye very sore low back pain and burning everywhere went to A&E of University hospital saw a nice Dr who listened.Advised to come back Monday and he will have a Neurologist see me.
My Big Question what test do i push for Monday? if I don’t get this Neuro to take me seriously I am back in the 6month-18month list I can’t do this as I am at risk of losing job and accommodation without a diagnosis also have gone so bad in 3weeks I am petrified of a 6month wait and in pain with no clue what is wrong with me other than suspecting ms and having a really bad immune system??
What should I look for just can’t mess this up!

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9 months ago

So sorry you seem to be feeling in such a muddle with this. diagnosing m.s. is very difficult as are managing the symtoms but practise makes ……… easier! What type of ms were you diagnosed with this year?
Like murders nobody can help until there is direct evidence that a crime has been committed! So with scans nothing shows up precisley until there has been some definite lesions to be seen and by then you will probably know yourself anyway. there are lumbar punctures [ all there were originally and even they are not without risk] ……
Can you pay privately to see a neurologist to get more precise info a.s.a.p at a time convenient to you so as not to lose more time off work? Constant stress about this wondering this and that will not help. Sounds like you could have more than more than one thing going on infection wise at the same time. It is allowed! On the plus side but will sound a bit harsh……….. if you can still manage to get to work each day……? Depression can give rise to actual physical symptoms too. My son had to have scans to prove that he hadn’t got m s like his mum!!! Nature is a very peculier thing indeed.

9 months ago

@iris thank you.I am now struggling to walk down the road with pain so not able to work.I tried in June and got the electric attack.My job is physical so the numb feet are a big problem.
I am def not depressed just fed up of getting worse with no answers .I like your quote about the crime scene thanks.

9 months ago

There are three tests that Neurologists normaly use to diagnose MS:
1) MRI scans
2) Lumbar punctures
3) Evoked potentials (testing the electrical propagation of the nerves)
The bad news is that some or all of them may be inconclusive or negative. It can take a surprisingly long time for them to make a definitive diagnosis. All you can do is keep on presenting your symptoms as they occur and pester them to put the effort in to the diagnosis (or at least treating the symptoms).
Good luck and I hope things work out for you.

9 months ago

@sweeney thank you that’s a help.

9 months ago

You might want to talk to your GP and see if they will prescribe you Gabapentin. That should help with the pain if it’s neurological.

9 months ago

@maura , make a short, concise list of all your symptoms. If you can also provide starting date and duration, this would help.

Then provide the Neuro with a copy. They should then determine the diagnostic test/scans to help them with the diagnosis

9 months ago

Thanks stumbler I have to try make it more concise and shorter.I will def do that this weekend.
If he goes with private Neuro and does no investigation that will be the worst case scenario.
Thank you

9 months ago

A big +1 from me with regards to @stumbler my brain mri was ‘plumb normal’ the concise list going over years of historical issues (most could be cross ref’d with GP data) helped considerably with a whole spine mri sealing the deal so to speak and cementing the diagnosis. There is little doubt that reviewing that list with the neuro, and some basic neurological tests helped immeasurably. Good luck

9 months ago

@renegade thanks.

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