Hi I am hoping someone will be able to help/offer advice. I have been having strange symptoms since jan as follows. Episode of shingles back in Sept 2012 on right hand side of chest. Jan pain like burning, itchy, tingly but could not pin point exact location then weeks later same symptoms on back shoulder blade, followed by strange sensation on rib cage almost rubbery like when you have an epidural for a section. Went to doctor who ran many blood tests came back deficient in vit B12 started injections. The numbess/tingling in top half thigh, lower leg, foot and now a heaviness in arm and tingling in hand. This is all left hand side of body you could pretty much draw a line down body and left hand side is strange right hand side normal. Referred to neurologist who got me to walk in straight line then with eyes shut then stand on one foot etc struggled to stand on my right leg without falling over straight away, then metal object placed on top of toe could not feel a thing on left foot but felt vibrations straight away on right foot. if you touch my skin it does not feel like my skin my foot is the worst I cannot just put my shoe on as cannot find shoe really have to concentrate to put shoe on. Driving doing the clutch is effort especially if sitting in traffic my leg goes into spasms where my whole body can actually end up shaking. I am not sleeping due to duvet touching my leg or me touching leg with other leg/foot. cant run as cant feel my foot properly, walking effort slightly drag my leg, feel very unsteady on my feet feel like I bump into things getting out of car hard, sometimes my legs are so stiff I walk like a robot til it wears off, sometimes feel very light headed where when I am upright the feeling of standing up too quickly where everything is fuzzy then wears off even though I have not just got up and I have eaten too. I felt like when I stopped the car and opened the door I was still moving and checked handbrake only to find it was on. I also cannot pull the handbrake right on all the way up with left hand (husband noticed this), went to wedding and took high heeled shoes to wear yet I could not walk in them nor could I even attempt to dance as knew I was very unsteady on feet. I had a MRI scan of my brain a couple of weeks ago and it has come back not really showing anything up. The consultant letter states that rather frustratingly it has not shown anything up apart from a whiteness on back of brain which could be caused by a number of things such as inflamation on the brain, thickening of artieries yet unusual for someone under 45 (Im 31) he would have expected if MS to see far more of these on the scan. I now have to wait 2 months til I can go back and see him to discuss my symptoms again. Yet I am unable to carry out my job, driving is difficult, walking is difficult, pulling up trousers or if one of my children touch my leg the sensation is horrific. My symptoms have gone from chest to all the way down left hand side body apart from neck and face and top of chest (above top) and have not got any better every day is the same or sometimes the sensation feeling is worse but never better or gone
Hi Jennylou!
So sorry you are going through all this - it all sounds so familiar! 2 months feels like a very long time to wait to see the neuro again I know x you could try ringing his secretary and asking for any cancellations that come up - as well as going back to your GP to see if they will push things a bit for you x
It’s worth asking if you can have some meds to help you in the meantime? Gabapentin & Baclofen are common ones for your symptoms - once I started on these they made a huge difference for me! Your GP may be reluctant to prescribe them as they are not ‘frontline’ drugs - but he/she can ask the neuro.
It’s a very scary time for you now - lot’s of people on here (including me!) have been there and many are still there - so keep talking to us and use the forum for support and advice xxxjenxxxx
PS Did they scan your cervical & thoracic spine??? If not ask for one asap if you can!!!
Hi Thank you for your reply - think I am just getting frustrated as first saw the Neurologist on the 10th July but now I have to wait until end of October to see him again even though all my symptoms are exactly the same with no improvement what so ever and if anything my balance etc is even worse now than a couple of months ago. No I think it was just a MRI of my brainI will ask my GP re this to see if this is possible. What does this do/show uip? I think the consultant was just expecting to see greater amounts of white on my scan and as there is only one area at the back just now he just said it could be other things but then went on to say but not normally in those under 45?? so I am really no further forward