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How long have u been in limbo ?

This one I guess has prob been asked before but just curious as to how long you’ve all been in limbo land for ?

Cause I’m seriously wishing I could get out the que now lol

Hi Cody

i first saw my GP for the start of me recognising neuro issues in Feb this year, looking back symptoms have been with me for a few years but I never connected the dots. Anyway, I have my first neuro consultation on 10th Sept so that’s a fair old while already but am not under any illusions that I will get any answers until at least the New Year if I’m lucky. I think everyone’s story is again very individual but the consensus of opinion is that it’s a waiting game, I’m trying to carry on as normally as possible until I have something to think about but sometimes I get ‘twirly’ and a bit stressed about it, it’s inevitable I guess!

How long have you been waiting for so far?

Sarah xx

Hi Cody1 I have had symptoms since March 14 (symptoms that I’ve not been able to ignore) I went to my GP in June and am seeing neuro 12th sep. However I tell people I would like a diagnosis by xmas!

Blissfull xx

Similar to you really referred to neuro back in January I’ve seen him 3 times so far had 2 MRI first one showed 12 small lesions and neuro was thinking ms he then referred me to have a LP had that in May and the results came back clear earlier this month so had my 2nd MRI on Sunday to see if there’s any change :frowning:

im not holding my breath that I will get Any answers this yr as it’s such a long dragged out process

hope your appointment goes well and you receive answers soon

xx

I first realised that I was in ‘limboland’ about two years ago, when I started a symptom diary and joined this forum. However, looking back just over five years, I had some suspiciously MS like sudden symptoms when my daughter was born (after a lovely pregnancy).

I saw a neurologist last November and after a ‘within normal limits’ MRI I was given a diagnosis of Functional Neurological Disorder (see www.fndhope.org for info). In March this year I started getting involuntary movements and gait changes, two weeks ago I started getting slight vision changes which might be Optic Neuritis, so I’ll be seeing a second opinion neurologist at the end of October.

Like you, Cody, I’d like to get out of the queue now, please! sigh I’ll just have to work my way through Limboland Level 2. I’m collecting treasures along the way, though - mainly new, sympathetic friends!

I started in March 2013 with my eyes 15 months after stopping my contraception pill injection, went to my gp he told me to go for a eye test I had stiff legs he put it down to weight (I had lost 3 stone) had X-rays done was told minor artharitis had eye test got referred to hospital my eyes fine it seems eye specialist said auto immune disease causing it.

kept going to my gp told him about walking problems and balance he did nothing again blamed weight went a and e they couldn’t help me so after a year of a terrible gp and being this disabled I could no longer take my child to school neighbour borrowed me walking aids but still I struggled.

in January I changed gps he was great (now retired) referred me to a ms specialist had MRI in May and LP and vep in July I get my dx next week when I see my neurologist he’s been quick with tests but 2 months for results he was fully booked up so been disabled now for like a year but I’m positive things will improve after physio.

i had no idea for a year it could be ms until my neuro mentioned it no-one in my family has it so I think the pill I was on May have been the trigger heard same from someone else who had it (now passed) but I’m only 34 so I need to get better for my daughters sake (single mum) my mum isn’t very supportive she helps with daughter that’s it.

mine started in may, then things settled down a bit but have never totally gone away. today i feel back to square one.

my god! some of the time frames being mentioned here are simply terrible, my sympathies go to all of you without reservation.

i am from england but now live in western canada; perhaps you should come for a hospital holiday? (we have socialised healthcare but tourists will need to pay $100 for an A&E visit)

my limbo (for your info and NOT for my bragging rights):

week 0 - my symptoms got to the point of not being easily ignored;

week 1 - went to A&E and had blood work and the usual stroke exam. had a CT scan and was referred to another dept.

week 2 - went back to the A&E having not heard about the referral appointment. demanded a referral to a neurologist.

week 4 - ultrasound of my neck vessels to ensure no restrictions; saw neurologist; MRIs ordered

week 6 - two MRIs - first cranial then 3 days later thoracic and cervical

week 7 - given MRI reports (so many lesions!!!)

week 8 - neuro specialist on holiday. limbo land.

week 10 - appointment scheduled with (undoubtedly a sun tanned) neuro.

clearly i have little reason to complain about my own set of circumstances once having read all of yours. i feel privileged and have tremendous sympathy for you guys. if it is of any benefit to you, i would suggest the following (for what it’s worth):

  • Accident and Emergency departments know how to expedite things and will start shouting on your behalf to get things done;
  • The squeaky wheel gets the grease.

good luck and better health!

I like that…the squeaky wheel gets the grease :slight_smile: I’ll squeak louder, then!

When I went A&E they said they couldn’t help as it wasn’t an emergency and wrote to my gp but my new gp is has been and done all right things but my neuro is great and finally I will have dx on Tuesday and know where I am it has been tough but I am finally in good hands.

Went to GP in early June after symptoms started up in April/May ( have had earlier bouts I now realise ). Blood tests following week then referral to physio to see if a trapped nerve. Spoke to physios on phone that Friday pm and they gave me emergency appt first thing Monday am. Saw specialist neuro physio who did various tests and spoke to GP that day to get me a neuro referral asap. Saw Neuro early August ( first available “urgent” appt!! ), told almost certainly MS. Have MRI booked for mid Sept. Considering some of the stories I have read it, that seems quite reasonable. Mind you, if the MRI doesn’t show anything it will no doubt be a different story.

I’ve had a cervical & a thoracic spine MRI done recently for other reasons so I just need head scan right? Neuro haven’t looked at my other MRI scans but I will be asking him to review them from a neuro point of view. What does a lumbar puncture confirm? I will google it but someone will know.

I have been consistently fobbed off for nearly 30 years!

Am awaiting an appointment at the National Neuro Hospital for a final attempt at getting some answers.

Keep fighting everyone xx

A lumbar puncture is done to check for oligoclonal bands (o-bands) in the cerebro-spinal fluid. If you have them, it’s an indication you have MS, but something like 20% of people with MS (confirmed through history, MRI etc) don’t have o-bands in their CSF, so lack of them doesn’t rule MS out.

LPs are done under local anaesthetic so they shouldn’t hurt - you will feel the injection of the local, but after that you may feel a bit of prodding and pressure but it shouldn’t hurt.

Hope this helps.

LP sounds worse then it is I was dreading it but just feel a sting from local mine didn’t hurt but think they touched a nerve but once they saw I felt a little pain they moved needle and all was fine, they had me drink water to prevent the headache and it worked.

It’s not that bad and I used to be terrified of needles.

hope it helps :slight_smile:

Hi, I must be one of those 20% Mitzi as i had an MRI and LP 15year ago now and wasnt diagnosed until i had a bad relapse last summer, MRI showed lots of scarring,doctors said i was a bit of a mystery woman as ive been treat for depression, stress and anxiety related problems for 14 years, my meds dont take the pain away still but at least i have a label on whats up yeh, jus got to get on with it really aint you or it gets you, Anyway guys i hope you all sorted soon and hope you have all the help you need :slight_smile:

Hugs n wishes Sienna xxx

P.S The squeaky wheel gets the grease ! hahaha like that one too Paolo

Sienna :slight_smile:

I’ve been in and out of limbo since April 2013

its awful isn’t it? Although this time round with the onset of my symptoms I’m better organised and ready to deal with them. Got a future career mapped out if I have to give up my current job as a bobby

I suppose the main thing is to try and stay positive even when we’re struggling!!

hugs

mick

I’ve been in limbo since nov 2013, still waiting for neuro appointment (oct). Think it may go on for lot longer. Was made to feel like I was wasting gps Time until feb this year until I trpped & fell at work (12th trip in 5 yrs), put On restricted duties at work, still restricted. Aaaagh. Symptom started proper Last june (got a lot altogether & they went on & on, had some before that But on there own.

I can feel your pain. Third time on restricted duties now but staying positive. All I can say is find something you love to do and can do whilst you’re bad and focus on that

i love baking and am looking to go down that route as a career if I can’t do my job. Thursdays plan? Making choc and beetroot, carrot cake and strawberry flavoured cupcakes!! :). Cheers me up just thinking about it!!