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fed up big time..

Hi

I was told from looking at the lesions on my mri my Neuro suspected ms, along with two doctors who saw me in a&e. I’ve had 2 clinical episodes which left me unable to walk well for months as well as a list of other horrible symptoms. Anyway my lp was clear and guess what!? Neuro said good news it’s not neurological! Uhh?? Lesions in ms areas of the brain, he said thought ms so how can a test that has a false negative of 10-15% be used to contradict the mri he was saying was so bad. I don’t want an ms dx but, at least explain what else it could be, surely it has to be neurological? after telling him about bowel/ bladder issues, I’ve had another mri on spine, waiting on results.

Tbh he is a locum and I don’t trust him, I’m biomedical scientist and know the lp shouldn’t hold that much weight. I have also spoken to the doctors I work with who are furious.

I can defiantly understand any one being fed up of limbo land. I started with vertigo last week which has made my legs go weak too now, I’m getting very worried it’s going down the same path as before! I can’t cope with feeling sick from the dizziness 24/7 any more, it went on months last time. I have two kids, one a toddler and not being mobile is too much without walking aids or help without a dx! What to do?

Thanks for the ear, I just need any stories of hope of getting some help??

Hi mamma, I’m an undiagnosed fellow mum, also suffering from dizziness (on top of a long list of other symptoms!). In my case, this dizzy feeling has stuck around for over a year. Some days it fades to a slight sensation of not quite being in synch with the world and on the other end of the spectrum, the room has spun around me. Betahistine didn’t work, so I’m waiting to see a neuro in five weeks. The main help I’ve received so far is from my GP (even though he thinks this is M.E. which doesn’t feel right to me) and my lovely ‘mummy friend’ who has seen the neuro I am due to see (for different reasons) and reported back to me that she’s thorough and understanding. Have you got ‘mummy friends’ or others around you that you feel comfortable telling everything to? Especially with kiddies, you need a support network around you. Can you see a different Neurologist? From all the stories I’ve read on here so far, I’m wondering if the NHS has any patient feedback system? I wish you well and may you receive all the help you need :heart:

I didn’t think you needed a positive lp to be diagnosed, but maybe I’m wrong. What about the evoked potentials tests? I have brain lesions and nasty symptoms over one episode. I have not had a (successful) lumbar puncture and I passed a visual evoked potential test so I have been diagnosed with CIS. I think you need to keep fighting and ask for a second opinion.

Hi

Do you think it might be worth getting a referral to ENT for the vertigo, I started like this and also had a clear LP.

The ENT consultant I saw said he didnt think it was my ears causing vertigo balance problems and was happy to let me go with no testing but I insisted on formal balance testing ie caloric test which proved i had a vestibular problem with less balance and hearing in one ear cause unknown.

The ENT consultant was surprised by this and referred me back to Neuro!

As your neuro is doing another spine MRI it doesnt sound like he is discharging you they may just keep an eye on you and watch and wait and repeat MRI over time, this limbo land takes a bit of getting used to unfortunately, but whatever IT IS will eventually show its self.

It might be worth asking GP for help with your vertigo for now, I tried betahistine prochlorperazine and cinarazine but the best thing that worked were the balance excercises given by ENT audiologists.

Good Luck

Noms

Hi it may not be MS but if there are lesions then it is definately neurological. Have they tested for other things that cause lesions?

eg B12, Lupus sjorgrens, Lime etc

I had an attack exactly 5 years ago and I recovered well but then a year after the attack spasticity started to develop - very slowly at first and now it is really bad giving me a hemiplegic gait!.

A lesion was seen on my cervical cord (C4-C6) in 2011 and 2012 and it had gone in 2013. MS was suspected but ruled out after 2 clear LPs. I have been in limbo for 5 years now and it sucks especially as the walking is continuing to get worse.

Moyna xxx

Hi Mama, I am also shocked that clear lesions on your brain cannot be neurological…its illogical is what it is!

Your personal knowledge with that of your work colleagues, about medical matters would surely raise valuable questions re your diagnosis.

Perhaps seeing a different neuro will give an alternative answer.

I have seen 15 neuros in as many years and many of them have simply scratched their heads re a diagnosis for me.

I`m still in limboland with a half diagnosis.

pollx

Thanks for the responses guys. It’s nice to know I have somewhere to go where there are others who really understand. I think after almost a year I was just getting fed up when I started to feel poorly again, I’ve only felt ok for 3 months total. But never mind. Like you say I think it’s a long waiting game, and it’ll tell itself one way or another. I’m going to see what the mri says then go from there. It’s just nice to have emotional support, so thank you. X