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Awaiting diagnosis, finding limbo very difficult

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.

Hello julesgazz

Diagnosis of MS is guided by the McDonald Criteria. See https://www.mstrust.org.uk/a-z/mcdonald-criteria for details.

In general, MS can’t be diagnosed without evidence of demyelinating lesions being seen on MRI.

It may be that after MRI with contrast, demyelination will be detected and MS diagnosed. If you’ve already had an MRI in the past that showed demyelination, I’m surprised this didn’t show up again. Usually lesions don’t magically vanish!

At least your next MRI will be done soon and hopefully with contrast will show up more information.

Living with symptoms but no diagnosis is miserable I know. At least you are getting some physio help from the MS Therspy centre.

Hopefully soon you’ll be out of limbo.

Sue

Thank you Ssssue, thats helpful. It will be interesting to see what the MS dr makes of the previous MRI report from 2012.

I realise its sometimes a long road for diagnosis and, even if its not MS, Im still left in this difficult position of symptoms of TM and I can only help myself by trying physio and keeping on trying to live a normal life. Ive been off work ten months now and Im making plans for a conversation with manager and my gp to go back on phased return over a month sometime soon. With the heat tho, I am wiped even more, my legs dont want to work, but my brain seems better than it was. I can only try it. I feel like my life is on hold, going back to work at least would get me out of the house and give me some “normality” as I used to know it, in the sense of being back with a job i love and good people.

Thanks for your thoughts and support. I realise my MRI’s don’t seem to match what the consultant will be looking for. Maybe the contrast ones will, the 2012 one was without contrast. But, I am hoping this will all go away and I can recover my mobility sometime soon.

Julie

Hi, can anyone tell me what the consultants will be looking for with an MRI with contrast dye please. I have had a spine and brain MRI on 28th May and am due to have another with contrast on 16 August. The ones in May came back normal but I have had LP O bands, eye test and nerve conduction studies all came back “pointing to MS”, so the consultant said… He has ordered repeat MRI’s and referred me to his colleague who is the MS specialist Neurologist, who I am seeing end of August.

It’s a long wait wondering if its MS or not, meanwhile I have loads of symptoms and cant walk well and have altered sensations from waist down for 10 weeks now, after an episode which was diagnosed as Transverse Myelitis. I know it can take a while to diagnose sometimes and I need to be patient but Im finding its very hard when all the symptoms, made worse in his hot weather, just reminds me there is something not right.

Thanks

Julie

This is what the MS Trust say about contrast dye:

“Gadolinium

Gadolinium is an inert material used as a marker or contrast agent to enhance images of the effects of multiple sclerosis on MRI scans. When injected before a scan, gadolinium makes it possible to distinguish between active MS lesions and older areas of scarring.”

So what it does is, it enhances areas which might show MS lesions.

Heres a link to the whole MS Trust page on MRIs: https://www.mstrust.org.uk/a-z/magnetic-resonance-imaging-mri

​I hope that helps. All the different periods of time where you have to ‘wait’ for appointments, tests, results, more appointments, more tests certainly make you very aware of your potential diagnosis. It’s a worrying time.

Sue