Hi, Im new here, first post. I’ve had pins needles and reduced sensation waist down for 9 weeks now, plus fatigue, legs giving way, affected greatly by heat, eye problems, dropping things and balance issues. I am walking with a stick and can hardly stand for long or walk far. I have already used a wheelchair twice in last month and am using taxis to get anywhere door to door. I am usually ablebodied and this has come like a bolt out the blue.
I had surgery for a parathyroid removal on 30 April, I have been very sick for 8 months waiting for this surgery so wasn’t in a good way by time surgery came, and very stressed by this being 6th operation date since March. Two weeks later I had a bad stumble outside and then developed strange sensations. short story is three A & E trips at both bank holidays, 6 doctors and two weeks later! (couldnt get anyone to listen to me, all put down to post surgery ?) I was admitted to Neuro ward for a week with Transverse Myelitis. I was given 3 days IV Steriods, had MRI’s cervical and whole body all showed no lesions., had LP which showed up for OBands and eye test which showed dysfunctional optic nerve. Other nerve conduction studies also came back abnormal and when saw consultant ten days ago he said all tests were pointing towards MS and he’s refer me to his colleague who is MS Specialist. He couldn’t rule out that surgery and this episode somehow linked, maybe by stress, but couldnt explain. He’s ordered MRI’s be done again this time with contrast which I have a date for mid August (although consultant didn’t order contrast so I’ve sent a note to him regarding this. Got appt for MS specialist neurologist end of August. Neurologist was very thorough, function tests he did on me showed power in limbs ok but balance was not. I have had vertigo in the past and one episode like this in 2012 but I lived in a different county then, under a different hospital. I have been able to obtain the MRI report from back then and sent this to the neurologist recently, it mentions areas of demylination. I was not followed up after MRI last time, my symptoms went after a couple of weeks, but I had vertigo and other symptoms on and off since and have only just recently seen this report.
I am in that horrible limbo land where my MRIs are not showing anything (which is good) but I am worried they wont diagnose me and I will be left to cope with these miserable symptoms and not know what to do. I have found support at an MS Therapy Centre, so have started neurophysio and they have a helpful drop in which has been supportive, even tho I dont have a diagnosis yet. I have TM diagnosis which seems to have some of the same symptoms so they are happy for me to join in and have been supportive.
I know no one can diagnose me here, but do diagnosis ever get made on these symptoms alone and maybe not so much counting on MRI results? Is it down to particular experience of neurologist and the whole picture rather than just MRI evidence. I have read the3 diagnosis criterea and am hoping my previous episode will count., I dont want to have MS but I dont want to be missed and unable to get help either.