Just sending a big hug to anybody else that are waiting for results.
The wait and the worry is so hard.
I am waiting for lumber puncture results.
Anybody else waiting too?
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Hi, I understand your anxiety. I waited 22 years for a diagnosis.
Boudsx
I really do not understand how you coped? Could you get on with life or was it always a worry.?
Uncertainty is known to be very unsettling.
My neurological issues started 40 years ago, but in episodes of a few months, many years apart, and from which I recovered almost back to normal. Had very minimal tests done then so never got any answers. They didnāt have MRI scanners back then.
I do have cervical dystonia, diagnosed about 15 years ago, and that took a couple of years to get a diagnosis, even though it is a very obvious one to diagnose - it isnāt common so GPs often have never come across patients so donāt recognise it and just think it is anxiety or nervous ticks or something, so delay referral to neurology which holds up diagnosis. That doesnāt explain my previous neurological symptoms or my current ones, though.
My current neurological issues started about 4 years ago. Iāve seen two different neurologists in the last 4 years. Theyāve both said I probably have something rare - and probably will never get a name for it. They say it is definitely neurological.
Over those 4 years I had one appointment with the first neurological consultant, one with her registrar, and two with the current neurologist. Every stage of investigations has been dragged out for many months, with very long waits to get results. Yes, it is very unsettling.
I currently donāt know what is happening next - Iāve not been discharged but have not been given any future appointments, and was last seen in April of this year. I think they deliberately donāt give an appointment at this clinic until you chase for one. That happened the last time. I rang up after a few months of hearing nothing and his secretary said āoh yes, you are meant to have a follow up appointment, sorry. The soonest weāve got is now in 9 months time.ā Iāve given up expecting anything useful from them. Theyāve still not even done a lumbar puncture. It took them 1 1/2 years to even do the first MRI scan. Iām not going to chase up. Iāll now just wait and see if my case has been quietly ālostā, which I suspect is the case.
Yes, you do have to get on with life - there isnāt another option! But being in limbo with no diagnosis is very hard. Does it get any easier? If things improve, like mine did in my early years you can brush it aside, though there is always a niggling worry deep down. If you have ongoing symptoms that affect your life, as is the case for me right now, then no, it hasnāt really got any easier. If you are dealing with employers and donāt have a diagnosis that can make things difficult too.
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Your journey sounds very unsettling to me. It does seem which consultant you get can really effect how quick they are you act.
I cannot beleve you have had issues so long and no lumbet puncture.
Hi teddybear,
My lumbar puncture results were ready within a week of having the procedure, maybe it might be worth giving the neurologists admin team a ring to speed up the process.
From your previous post it sounds to me that the results are ready (wbc , protien level , and paired banding)
Dont let them make you wait and worry
All the best
Wobbly
Crikey, that sounds very tough. My MS was (as these things go) quick and easy to dx, and that was quite stressful enough.
Thank you Wobby
Hi again. Yes it was a very unsettling time.
In September last year, I felt at the end of my tether.
I turned to Jesus and he made me understand everything. I am now a committed Christian and a new person who loves lifeā¦
Jesus will help anyone who asks.
Bless you.
Boudsx
I am a Christian too but still do not understand why people suffer ( not thinking of myself here when i say suffer). I understand about freewill etc.
Hi Teddy, yes It s a hard one to understand, but I have to accept that God has a plan for everyone. There are consequences for evil acts.
Boudsx
hi all
Still waiting for the full lumber results.
Been told there is a long delay for them to check for bands, so could in the new year now!
No good at waiting, sorry I know many wait years not just months.
hi all
Still waiting for the full lumber results.
Been told there is a long delay for them to check for bands, so could in the new year now!
No good at waiting, sorry I know many wait years not just months.
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Oh Iām with you on this. I had an MRI head last week and I feel really impatient waiting for the results. Itās my first scan, I havenāt been diagnosed with anything yet.
Thinking of anyone else waiting for results!
Hi
Its so hard waiting, you get one result then onto the next test and wait again. At the moment they are saying CIS but lumber result may turn it too MS.
How long did they say for MRI result? mine was quite quick.
They said 1-2 weeks. It was my GP who referred me. Not sure if theyāll contact me or if itāll go onto my online record that I can access via the NHS appp.
I had optic neuritis many years ago and these are new symptoms. Not sure if the optic neuritis was considered CIS. Seeing neurology next week, hoping for some answers.
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I would give them a call. My MRI results never shown on my online system.
Oh really?! Can you remember how long they normally take then please? Mine was last Wednesday. Do you think theyāll give them over the phone?
My Brain mri result took about a week. But at the time it was marked as urgent. Ruling out things. If you are are seeing consultant next week they may wait until then. But if i was you i would call doctors.