Update

[Inactive_User]

Hi everyone!

I haven’t been on here for a good few months, but thought I’d just post a brief update.

Last time I posted I was in Limboland with tests for MS etc being done. These were inconclusive for MS, but I still have no explanation for my brain lesions. My Neuro discharged me with a dx of vestibular decompensation and undiagnosed neurological symptoms. He told me that there is nothing that can be done and I will definitely get worse as I get older!

I refused to accept this, and my lovely physio was furious and so pushed for a referral to a Neurotologist in London, as one of my main symptoms is balance/dizziness issues. I had loads of balance tests done, and I apparently have permanent, significant and incurable damage in one ear which is causing some of these issues. They also discovered that I have some form of widespread neuropathy (I couldn’t differentiate between a very sharp pin and a blunt instrument on many parts of my body), so this now has to be investigated further as this is not their speciality. It is, however, definitely contributing towards my balance/walking issues as my feet/legs are not sending the correct messages to my brain.

I still have many other random neurological symptoms yet to be explained (the Neurotologist was not impressed with how the Neuro I saw locally had fobbed me off, and even less impressed with how my GP had recently told me they have no idea what’s wrong with me, never will have any idea and that I just have to accept I have disabling symptoms and get on with my life as best I can!).

So, I am currently awaiting an appointment back in London for an assessment before starting some Vestibular Rehabilitation Therapy that may give me some improvement with my balance issues. I also need to see my GP about the neuropathy.

I am also supposed to having an MRI of my lower spine as this has never been done and my lower-back/leg symptoms are becoming progressively disabling.

So, I still have one foot (albiet a partially numb, stiff and useless one!) firmly in Limboland, but at least I may be getting some help with my balance.

I am still not convinced that the balance issues are causing all my symptoms, and still feel there is something neurological going on. I just need to be strong and not give up.

Sorry for the essay, and thanks to anyone who has made it through this whole post!

Love to all still in Limboland xxxxxxxxxxxx

[Janhhh]

I made it through the whole post and I glad I did

I just wanted to say well done for pushing towards a definitive explanation of your condition. We all want a name for what ails us even if there is no cure or treatment for that condition.

Best wishes and good luck

Jan x

[Rosina]

Hi Purpledot, I managed to get through your ‘essay’!! & just wanted to wish you very good luck for the future I hope you soon have some answers to your questions when you see the new Neuro.

Best of luck for the VRT when that starts, let us know how it goes

Rosina x

[Inactive_User]

Hi Purpledot

I haven’t been on in a while, but am sorry to log in this morning and see you are still struggling for a diagnosis.

It baffles me how doctors can think it’s ok to tell a person that they have no idea what’s wrong and you should just go and get on with it. It’s not in human nature to just ‘get on with it’. Good on you for persevering in your pursuit of answers.

Wishing you the best of luck with your journey and your therapy and MRI. I really hope you get some answers soon.

PG xx

[Inactive_User]

Hi Purpledot, good to hear from you! Well, that sounds like progress to me (albeit painfully slow). Best of luck with your therapy! May you find more help and understanding

[Inactive_User]

Thanks everyone

The Neurotologist told me not to expect to ever be completely well, but I should experience some improvement with therapy, although this will, apparently, take a very long time and be pretty horrible.

They also said they think there are other things going on apart from the balance, so I just need to make sure I pursue these.

Oh, and they even suggested I change my GP after I told them a few things he had said to me!

Love amd patience to you all xx

[Inactive_User]

I can’t believe they’ve never done a full spine MRI having looked at your symptoms. And the idea that you should just go away and get on with it when it’s obviously affecting your life is not right. I’d be tempted to turn round and say “Would you just put up with it if you were me?” No they wouldn’t. Keep going and insist on proper treatment - that’s what they’re paid to do.

[Inactive_User]

Thanks Dizzyblonde, I am definitely not giving up! I’m only 49 and still have a lot of life left to live!

I’m right in the middle of a major flare-up of my oesophageal spasms at the moment, and am in so much pain I don’t know what to do with myself.

I need to go back to the GP, but am waiting to get a copy of the letter from the Neurotologist first, so I know my GP has had a copy and will know all about what they found, the neuropathy that needs to be investigated etc.

No point going before then cos he never listens to anything I have to say and I don’t want to have to go and see him twice in close succession…

I hate not being in control of my own destiny…aaaarrrggghhhh!

[poppyseed]

Morning purpledot,

i was catching up to see how the peeps where getting on, on my buddy list and found your update.

we seem to be following similar path on symptoms and test but I am in the North of England.

i thought I would share my update with you in case it should help you in your quest for answers.

my balance is my worst nightmare too, with people giving me foul looks and moving to one side for me to pass them as they think I am drunk. I often feel like I am on a ship. I have lost hearing in one ear now and the other is catching it up. My sight has been affected too. Weakness down one side and strength diminishing in larger muscles ie upper legs and upper arms. Lots of numbness and odd feelings. See spiders out of the corner of my eyes too. Had TIA 's although neuro does not agree.

found a Hemotologist who has orchestrated a visit to a heart specialist and ENT as GP would not refer me as he felt they could not tell him anything new even though I am deteriorating( Hemotologist thinks it’s a blood vessel disorder, my younger sister who is 14yrs younger than me is showing symptoms). Cardiologist agreed with Artrial fibrillation, this is only once in a blue moon. ENT curios to know why my ear is numb inside as this is a different symptom to the norm. I had a further MRI on both ears last week and see him on the 25th. If he finds nothing he will run further tests on my balance issues. My relationship with the neuro has been up and down . I do my own research and write to him with theories, I thought he would be unhappy with this but surprisingly he has been ok. Cadasil has been ruled out, Ms ruled out and I was about to bring up mitochondrial disease when he beat me to it. He took blood on my last visit and sent it to Newcastle for a genetic test, it came back negative but he and Newcastle want to move to muscle biopsy, which I am waiting for. He did check for Lactate in my blood but this test I cannot get a result on for some reason. Battling for benefits as others are too and on a cocktail of meds.

it would be so easy to give up, like you I refuse.