MS?

Hi all, I have been hesitant to join the forum, but as I now know that I do have a neurological problem, I thought it might be good for me to join. I had a head injury in October 2014, which I lost ​conciousness for 4.5 Hrs. I was admitted to hospital 6 weeks later with terrible photo-sensitivity, headaches and blurred vision, unsteadiness.

I was there 6 days, and was diagnosed with Post Traumatic Concussion, prescribed propranolol to prevent Migraine, ibuprofen and assured Id be right as rain in a few weeks. I ended up having MRI which was clear. 7 months off work, I can only work 2/3 hours before I am ill. Being self employed with no benefits this isnt good.

Fast forward, 19 months -I never got well, more and more things were going wrong.

My GP has been great, The two neurologists I saw, insisted Migraine, even though I pointed out the constant pins and needles, pain. They saw me Christmas Eve and then decided it was Medication Overuse Headache. And was told to withdraw all meds that contained any analgesic. 4 Days later I was so ill, the pain was horrendous.

My GP re-refered and I resumed pain relief including Amiltripyline for the terrible pins and needles, they did an Cervical Spine MRI which I saw a Orthopedic consultant who said the MRI was clear.

But noted the pins and needles & the distrbution was Glove-Stocking (Unilateral Right Side) which pointed to a neurological disorder. I had limited use of right side, walked slow and slight hempiligema - I was refered to Neurology. I then had an episode two weeks ago, felt really ill at work, got home I was staggering and took 30 mins to get into my house, half way up the stairs with increased severe pins and needles in hand and foot, I lost control of my bladder. It was so upsetting. I got to bed and stayed there rest of the evening. The next day the toes felt strange like numb but i could still move them, the pins and needles were increased and the foot was painfully numb as was fingers on my right hand.

5 days later, I had another incident collapsed was burning sensation all over my legs. The next morning all my toes were numb. I attended Neurology where I failed the tests. Basically my right foot upto knee I could’nt feel the pin-prick test, other side I jumped with every pin prick. Hand was same upto elbow. (Unilaterally R/H) I have decreased strength on my R/H limbs pushing him away, making a fist, lifting leg up etc. Trying to walk in straight line impossible, couldnt get my socks on/off in that position.

He confirmed there is a neurolgical problem, wanted to do Full Spine MRI, Head MRI with & without contrast. EP, Nerve Conduction. He mentioned a treatment plan, involving Neurology-Pain Management-Rheumotology-Immunology.Barrage of blood tests last Weds, even for Lyme Disease.

Previous MRI radiology was told I had migraine, which I incorrectly answered ! (very ill during initial admission) that I had one or two a year. GP thinks that could have led to any abnormality (lesions) being labelled Migraine.

I am currently 3/4 of my way through increasing gabapentin they want me upto the 12 max daily. Also Naproxen, Co-Codamol . Still in pain.

I mentioned to neurologist that over the years Ive had strange episodes I put down to stressful job, but something caused me to stagger whilst running 8 feet towards a door post where I banged my head. They think its been treated as a head injury when there is a underlying cause.

Its a waiting game now, feel like I am imagining it all, as previous MRI was ‘unremarkable’ I am just hoping they find what is wrong.

So sorry for this long introduction, I am not asking for a diagnosis - just wanted to share what is going on.

They keep saying its a CNS problem, does this resonate with MS?

I havent researched MS at all, I have googled my symptoms and it lead me here.

Been reading some posts, and you seem a good bunch!

Im 41 male. Non-smoker-Drinker.

hi butterfly

poor you.

it sounds perverse but i was so happy to get my diagnosis of ms because i couldn’t stand not knowing why my body was going awry.

have you got an appointment for the MRIs?

if you have an ms therapy centre nearby, try there - you don’t need an official diagnosis and they are great places.

friendly with lots of people going through the same things but conversations are not dominated by ms.

lots of therapies on offer too.

carole x

Hi Carole, Thank you for your kind words. This is exactly how I feel, its like limbo. You get asked how are you? and rather than go through my endless list I say ‘not too good today’, at leave it at that. If they have an hour I’ll explain happily!

I have now got to the point that my GP has prescribed liquid morphine for the acute pain.

Im on 3600mg of the Gabapentin and max dose of codeine. They have added in 250mg Naproxen twice daily too,

I find there are ‘windows’ of time where I don’t hurt, so rather stupidly I do too much, then pay for it later.

My MRI of the back is Tuesday 24th May, and the nerve conduction studies & EMG on Wednesday 1st June.

That is a really good suggestion about MS therapy centre, its embarrassing as I cannot cut my toenails as im right handed and that’s the hand with pins and needles! - I looked up chiropodists (they now apparently known as podiatrists) there seems to be no help if your not diagnosed with a chronic illness, I may have to ask GP. Ironically enough these services are in the same complex (brand new health & social care centre).

I’m too green, I only found out about pre-pay prescription card after spending hundreds on the ‘per item’.

All this on a very low income, while still dragging myself to work as im self employed (which I do enjoy -when not racked with pain)

A friend of mine, insisted I got them to see me again, as she has MS and she wasn’t taken seriously, a consultant in pain management referred her back to neurology and then they dug deeper and she was diagnosed. Theres just so many similarities between our symptoms.

The GP has said there’s a possibility of an underlying condition, as well as the effects from the head injury.

Anthony x