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Coping while in Limbo?

Hi, I’m new to this. Started when my left leg went numb and tingly in August, I went to A&E, who ruled out a stroke and sciatica and told me to see my GP. GP referred me to Physio for sciatica, Physio ruled out sciatica again and told me to go to my GP and get referred to Neuro. Saw Neuro in January and am now waiting for an MRI, I have other symptoms of MS dating back to 2011; retrobulbar optic neuritis, fatigue, itching, word finding problems, stutter, mixing words up, bowel and bladder incontinence, memory problems, chest tightness (not heart or lung related), balance problems, numbness and tingling, pins and needles, skin crawling, muscle spasticity, muscle spasms (kick my husband while I’m asleep), legs shaking, Lhermitte syndrome, dizziness, extreme muscle pain, choking on food drink and air, problems with heat and cold. Sorry for the long list. How do you cope with the symptoms? How do you cope in limbo? How do you cope knowing you might have MS?

PS. My Physio is great, he still sees me to help strengthen my leg muscles.

hi paula

you are doing well by seeing a physio.

build up a team of experts who you can got to for advice.

(i called mine team carole, you have a team paula)

the bowel and bladder clinic are great, they can really help you cope with a wayward bladder!

don’'t overthink stuff, just wait for the MRI.

it will be probably another 6 weeks for the results to come back.

mindfulness meditation helps a lot.

as for coping with knowing you have ms, it’s do-able!

you don’t KNOW yet anyway.

if you do have ms, at least you can leave limbo.

knowing what you’re up against is a relief in a way.

take support from these boards.

carole x

Thank you Carole, thinking about it with a clear head, it’s definitely more the symptoms I am struggling with, GP won’t help until Neuro tells them how to help, so will contact Neuro tomorrow to see if they can recommend anything or refer me to incontinence team, also need to tell him about new symptoms. Thank you for your positive words, they really help xxx

I am in limbo too and each test I go for seems to have atleast a 6 month waiting list :(. I have gave up work due to symptoms, my weakness started in my arms, then my mouth and this morning my legs felt very tired, they also are constant adjusting their balance. It reminds me of being a tightrope walker. It’s very subtle but takes the pleasure out of moving. It’s awful not knowing what’s going on .(

Hi Paula,

I too am stuck in limbo and waiting for my third mri at the end of this week-a process going on since autumn2016. I don’t have all the symptoms you have but still I don’t want to have the ones I have at all. To answer your question about how to cope in limbo I don’t have a good answer because I would rather know this instant what is wrong and just be rid of all the waiting which also triggers symptoms. I at least make the most of the days when symptoms aren’t too bad and I actually feel “normal”-this also makes me forget a bit and just keep on with my everyday life.

Hope you have answers soon but until then try to just make the most of the time you maybe feel better…if you do…

//Penny

Little update, finally had my Contrast Head and Spine MRI, asked how long till Neuro got the results and was told how long is a piece of string, so still in limbo, but beginning to see the light. Thank you to everyone who responded with supportive messages, really helped to know I’m not alone xxx

You’re definitely not alone being in limbo - but you’re in the right place, the most kind and helpful forum I’ve known :slight_smile:

Brian

Right this is my story I was diagnosed with a 3rd nerve palsy 7 years ago,I had a mri of brain done 7 years ago and was clear,I am under the eye hospital and now get seen yearly they have said it’s stable every time I go,the past 2 weeks I had which I thought was a severe toothache,went dentist and said that it was not my teeth told to go doctors,went doctors and he perceived antibiotics for a nasel infection,I have numbness and tingling left side of face that is almost constant worse on movement and at work eases when lying down slightly and resting,had 2 visits in past week to a+e with the pain in head and face 1st time sent me away after doing some basic tests no scans done told me to continue antibiotics,2nd visit after reading my notes said I would have a ct scan done which I had done it came back normal and no sinusitis was sent home and to make doctors appointment,went doctors told him still had numbness left face and head as well as tingling he seemed puzzled donecreflex tests and said he thought my left arm and forearm was smaller than my right although I am naturally right sided called another doctor in and they agreed a neurology appointment will be made which is 2 months away,my concern is I’m still feeling terrible with numbness tingling left face also feel lightheaded most of the time just generally feel unwell with aches and pains,find it hard to concentrate at work and do my normal day to day activities,looking back always had slight tingling in left cheek on and off but nothing to worry me also remember few years back having a numb calf for a few days which went,I am a bit of a worrier and do have anxiety sometimes but nothing like the way I feel now,just think 2 months is a long time to wait feeling like I do,I go away with my wife in 2 week for a New York break for 5 days and really don’t feel up to it,tolate to cancel and don’t want to let her down,I’m at my wits end no painkillers help and it is unlike me to cancel plans and just stay on the sofa but that’s all I feel like after a days work,feel tired and irritable as well,sorry about the long post just want my normal life back this seems to have just came out the blue and does not feel for one moment to be getting better