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limboland

Hi all

I am new to this forum have never used one before but feel i need to share my feelings.I am currently awaiting results of brain MRI.it all started with coccydinia and the physio finding i had hyperreflexes in knees,babinnski positive in left foot and numbness to left upper part of leg. when asked various questions i gave a long list of symptoms that iv had on and off for years but ignored them as was busy bringing up a family along with training as nurse and midwife. my other symptoms include,cold water sensation down legs,worsening vision in right eye and loss of hearing right ear,of which has been tested and is sensoneurol loss of 35%. I constantly need to pass urine. I also have had tremour in left hand for many years which is now noticable on holding fork and when picking up and putting down a cup. I also occasionally get a "Sunburnt sensation on various parts of my body,the last occasion was on right side of face, my makeup brush felt like sharp pins. my memory goes during conversation the words are on the tip of my tongue. I was referred to nurologist who did the quickest nuro exam ever and did not give me time to ask questions. said she would refer me for brain MRI just to put my mind at rest. that was 3 weeks ago and am still waiting on results. I feel very frustrated by all this waiting. I just want to know what is wrong with me. I am normall very fit an ex dancer and a nurse practitioner.

Hi

A lot of people get stuck in limbo for a long time so I hope you aren’t! You struck a chord with me so I’ll explain…

I was already referred to neurology before I gave up my dance teaching… but I got it all the wrong way round and ignored my initial symptoms as a bit of ligament damage to my foot/ankle. from falling off the pole. And tingly feeling down my back as tension due to work, as I was doing complex calculations most of last year. It was when I had a fall that I went to an osteo and she started the ball rolling. I still thought it was a trapped nerve or something when I’d had my spinal MRI!

If you have ignored stuff the way I did, I hope the answer is NOT your worst worry - and that you’re out of limbo and on the road to recovery very soon (an answer does feel like a relief!). From reading stuff on here, a lot of people seem to have suspicions about MS long before they’re diagnosed. Even my MS nurse was in disbelief that I’d carried on with EVERYTHING, for a long as I had :slight_smile:

I hope you don’t have to wait too much longer

Sonia x

Hi. Have you had your mri already? I think it takes about 2 weeks to get the results but not sure if they’ll send them to you or only the neuro. I’m a dual qualified NP too in limbo. Had my neuro exam yesterday and waiting for date of mri. Take care everyone here is lovely Ax

Hi, I am sorry to hear of your health issues.

You`ve done more than your fair share, with a family and working.

Do you not have a follow up appointment with the neuro for your mri results?

Why not ring her secretary and ask about that?

Or hang on…reading your post again suggests you havent had the mri yet…have you?

You could still ring and ask eh?

pollx

Hi thanks for your kind replies. I had my MRI ,without contrast 3 weeks ago. Have called nuros secretary twice and left messages but she has not replied. I was not happy with nuros examination as she was most dismissive. I am thinking of going private to see a MS specialist who i have researched and he has written many papers on MS. Do my symptoms appear MS related?

Hi all

well called nuros secretary after waiting 3 weeks for 1st MRI results. told the letter was written yesterday and i have no follow up appt! Where do i go from here as still suffering with many ?MS symptoms. I am a senior nurse practitioner and really feel i have ms! Help feeling even more frustrated!

Wait til you get the letter through as I’d imagine it would shed a bit more light on things and if you’re no longer 7under neurology then speak to your GP and other possibilities…

Sonia x

Thanks sonia.

Hiya again.

As a senior nurse practitioner, we`d think you would know how to tackle your problem of no follow up appointment.

But I guess it cant be that easy, eh?

I had many appointments…one every 6 months for some years. MRIs, LPs, EMGs, VEP and loads of blood tests all came back normal.

Yet I presented as typical PPMS. I was never discharged and still see neuros yearly.

MS was finally discounted last year and I am told i have spastic paraparesis/cause unknown.

Going private would be costly, but maybe an initial appointment would be worthwhile. At least you would get the neuro`s full attention.

I went private initially, but went onto the NHS afterwards. I did so because the waiting list was 10 months on NHS!

What you gonna do, hun?

luv Pollx

Hi Poll

thanks for reply. I am still waiting for letter to see the outcome. I then will discuss my concerns with gp. Sometimes being a nurse practitioner has its downfalls as some drs dont like the fact that we have tried to self diagnose and it can go against you. I would be happy if the 1st nuro i had seen had taken me seriously and not been so dismissive as soon as i walked through the door.,looking at each individual symptom rather than putitng them all together which then appears as ms.hence wanting 2nd opinion. just feel frustrated thats all.

Hows you?

Kay x