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Symptoms and pain

I am a 41 year old male and was diagnosed with Optic Neuritis beginning of this year. Here is my history so far:-

1 Dec13 to now -suffering from numb hands in bed

Jan to now - increased ease for pins and needles in feet - e.g. cross legs or raised legs

3 Jan 14 - diagnosed with Optic Neuritis in left eye (sill not 100%) - eyesight worse when hotter

28 Jan 14 - MRI brain scan results clear

5 Jan to now - constant dull headache pain in corner or right eye near nose and soulder pain near neck (every day)

The eye doc thinks I dont have MS but awaitng an appt from Neurologist for second opinion.

a. Wondering my chances of MS with the symptms i am now getting

b. What is causing the pain in m eye and is it related to my shoulder / ms / something ese? Its driving me crazy and headache tablets dont work

Many thanks

not sure if this posted ok

Anyone got anything they can share? I am really worried - Im waiting for Neurologist appt for 2 months now

Your symptoms could be caused by a multitude of things. None of us is qualified to say what is causing them. I know it will be almost impossible but try not to over think things (stop googling). Two months is not long to wait to see a neurologist.

Hopefully there will be a simpler reason for your symptoms.

Liz

thanks Liz for you reply - i kinda internally preparing for the bad news but trying to be positive at the same time.

My eyesight seems to have stopped improving (3months now) and wonder if my vision will get any better now (its much better than at first,but stlll feels faint and sparkly - keep gettng the white flashes when moving eye)

The worst is the constant dull headaches incorner of my eye every day- I have tried all kinds of pankillers and they dont work… It does seem related to having an ache in my shoulder… anyone here suffered anything similar and what they did to ease pain?

Spluff, the waiting around and not knowing is tough. I waited approx 7 months for a follow up following brain and spine mri and lots of blood tests. I should be getting all results on 10th april ( I hope) and know were I stand… I don’t know whether to prepare myself for the worst or go in open minded?? I too suffer from random numbness of the limbs throughout the day & night among many other things. I haven’t had any vision issues or out of ordinary headaches (that im aware of) so I’m no help to u for that. Did u see if ur Gp will prescribe decent pain relief??? Every case is different from what I gathered via this so hopefully someone will have similar experience to urself. Take care RR25

For the sholder/neck/eye pain I highly recommed seeing a good osteopath. You may have some tight muscles that need easing out.

Update - saw the neurologist and she is putting me in for 2 mri, evoked potential and lumbar puncture - and will see her october to discuss findings - such a long wait!!! I passed all the standard tests she did (balance etc)

Since then I have been suffering different things intermitently…

eye / leg twitching (this is okay now) - lasted for around 3 weeks

numb hands in bed - not as frequent but stlll happens occasionally

whistling in my ears - constant but only noticable in quiet environment

wrist sprain type pain / thumb pain - these never happen at same time but can happen a few times same day (with wrist pain i cant put any weight on it)

dull ache corner eyes and neck shoulder pain (usually occur at same time)

Ive been put on Lyrica but this pain still exists - its not really bad pain but every day I am feeling some kind of pain and I am starting to feel very down and dont know what to do anymore…

today my shoulder and eye pain is worse… sick of having pain everyday!

I hope you get some answers soon, it’s a long old waiting game for appointment,tests and results it’s taken me nearly 4 years for someone to listen to me and finally getting a scan on the 14th of july and seeing neuro on 23 Sept. I have many symptoms which are managable the one thing that knocks me is cripperling chest spasms, I think everyone gets low because of not knowing what it is but just keep going you will get ur answers soon x

yeah thanks mand - i do want answers and kinda preparing for worst…

I just cannot handle the different pain each day…

earlier as previous post was my shoulder / eye

that is now gone and now my thumb is sore…

Its so weird - i dont seem to get pain in different areas at same time and its driving me crazy as I cannot stop it…

Think positive and try and carry on as normal, what ever that may be! Your appointments will come around quickly, sorry your in pain it sucks doesn’t it:-( Keep us updated all the best

Hi all - I recieved a clear diagnosis in August

MRI scan of brain and cervical sprin show no features to suggest demelyination of brain or spinal cord

Somatosensory evoked potentials upper lower limbs normal

Visual evoked ptential showed delay consistent with Optic Neuritis (i had this)

Lumbar puncture show absent oligoclonal bands in serum and CSF

Seems like great news BUT…

Last weekend I started feeling constant numbness (varying in intensity throughout day) in the side of my left hand and little finger and the one next to it

Also noticed in morning when I bend my head forward I am getting a strong vibration sensation in the top of my left leg - the more I do it the less it feels over time… This sensation eases after an hour or so…

What do people think - does it sound like I have had another attack and this is MS?

I dont know what to do I have tried ringing the doctor secretary who dealt with me but its always going to voice mail…

I had blood tests done when i went for all my neuro tests - not sure if it is standard to check for D and B deficiency… I can ask

The electrical/weird sensation in my upper left leg is worst first thing in morning and tends to go completely as day progresses… I read about l’hermittes syndrome but not sure if its the same thing?

At the moment im classed as Clinically Isolated Syndrome because of my Optic Neuritis; my tests were all clear and she said it was a very low chance to develop into MS considering these results; but I am worried that i am starting to feel these news things and are constant…

I have actually thought it could be pinched nerve or whatever in my neck beefore as Ive been getting weird on/off symptoms (see first post) but obviously the results were clear ; wouldn’t the MRI scan have picked this up anyway?

hi spluff

sorry to her that you are having a bad time.

in the absence of any real suggestions, just be aware that if you have ms you will have to learn the art of symptom management, so now is a good time to start.

see your gp regularly (it helps to get all your symptoms on record) and ask for something to ease your pain.

keep smiling through the pain because it does help.

plan a treat for each week - a meal out, cinema, concert or whatever floats your boat.

keep depression at bay.

you never know what you’re made of until you get tested.

you are being tested now and surely you’re made of tough stuff!!

take care

carole x

Hi Spluff

The numb/viscious pins and needles/ache in the hand/arm/shoulder is how my symptoms began - I was very active at the time and when it first began (odd numbness in the hand) I thought I had pinched a nerve in my shoulder, and on a routine check up with the GP asked him to make a note of it and check back with me at my next review. 2 weeks later I was back, symptoms had spread up as far as the elbow/bicep area, a few weeks later into the shoulder with a bone deep cold type aching, stabbing pins and needles and then the electric shocks kicked in when I tucked my chin to my chest/looked down at my feet whilst standing.

If I don’t tuck my chin all the way to my chest - I get a weird pulse, similar to that which you have described down the left side and leg.

For the pain - I would suggest Gabapentin (its an anti-epilepsy drug but can work wonders on neuropathic pain) and/or Amitriptyline (which is an anti-depressant but also can work wonders on neuropathic pain - in particular the electric shock type). There are a lot of other drugs that your GP could prescribe - You don’t have to put up with the pain because they have yet to figure out what’s going on.

thanks for all the replies… its tough not knowing more than the symptoms…

I try and take comfort that i had loads of tests August and everything is clear but now I cant understand why things have got worse… wouldnt the tests have shown up something in my spinal fluid or scans?

Also the bending neck forward feeling is more weird that it only happens first thing when i wake up… why would it be just then?

Can someone explain to me this…

Negative to lessions in brain/spine - August 14

Negative Lumbar Puncture - August 14

Negative Evoked Potentials - August 14

MRI on neck muscle/joints - negative (not for lessions i think) - Dec 14

Optic Neuritis - Jan 14

L’Hermittes - Dec 14

If all my tests were negative in August and had Optic Neuritis Jan and now L’Hermittes now - can this be MS? If it was MS wouldnt the tests in August 14 showed something as I have had an attack already?

Awaiting more scans in Feb now - this has been going for over 1 year now…

OK the journey has now ended…

Just been to the neurologist and confirmed that I have MS…

2 events - optic neuritis and l’hermittes

there is some new white spots on my brain mri but could not see anything on my spine (weird as I have l’hermittes)

Mentioned that there was not many marks on scans which is good and that my lumbar was negative

Next step - ms nurse, drugs and a life full of uncertainty :frowning: