Hi my Lupie friends,
Hope you're all keeping warm and well😁 I had another nerve conduct study yesterday it's been about 5 years since the last one. Can I ask have any of you suffer from lots of coldsores and get facial paralysis with them?🤔
If so have you managed to get answers from Drs or treatment that works?
Hi I’ve read a few of your posts and I can relate to some of your problems rashes muscles etc but I’m over 2 years on journey and no answers despite feeling like deteriorating. I reply as I do not get cold sores now for some reason but had them all the time but they seem to have been replaced with getting constant mouth ulcers but also get numb face and lots of swellings. I can’t help sorry as have no answers from docs, infact I feel like docs not listening only to their own agendas not me🤷♀️Good luck in finding answers , best wishes🙏
Stiff19, thank you. I too have had my fair share of Drs that don't listen, care or think it's in your head in the last 6 years. Drs seem to get very disinterested if their hunch isn't right or can't be proved by blood tests. My mouth ulcers and sores got much better after finding my b12 problems and getting injections. I have had coldsores all my life but after a few really bad attacks now getting facial paralysis each time. I am interested to see if this neurologist actually finds anything this time. I will let you know.
Yes please let me know. I’m waiting for a test for myasthenia but personally I don’t think it will be positive I’m not certain all fits. I’m finding it very difficult to have faith when docs only want to pick up on my damaged face and not the rest and trying to diagnose me on tests rather than see me clinically. When seen clinically I’ve had much suggested as possibilities and much the same from different docs but then when nothing in bloods they ignore the test and no face to face with neuro at all 🤷♀️ I’m thinking of writing to say I want to be seen not just a phone call and photos as it’s not helping. Hope neuro you see helps you 👌🙏
Stiff19 this is my 3 trip to neurology. I started with them 6 or 7 years ago when I first collapsed brain scan showed nothing so they immediately discharged me. I went back again 2 years later when I could stand up due to vestibular problems and balance problems. That time I had some vestibular tests and told it was headaches. Not sure a headache can last year's, and the vestibular stuff is still there it comes and goes. I also did some vestibular physio which helped a bit. She said yesterday the test ruled out myasthenia, I didn't think it was that anyway. Let's see what they come up with this time🤔
Oh muff20 so sorry 😞 it’s so tough isn’t it, such a worry too, I sure wish I had some answers, I’m glad you’re getting some kind of help with physio 🙏 take care x
Stuff 19 the physio was years ago. They give you a few appointments and then your discharged again. I haven't seen anyone about the vestibular problems since. Nothing is dealt with properly or long-term. In the end your left with it all to suffer on your own.
So soz but yes I feel like you’re left to it, when there’s no definitive answers. But it’s as if hospitals have no concern or time to bother with other than emergencies, and I just don’t like the feeling of maybe becoming one if not helped. My neurologist said last time we spoke I don’t think it’s life threatening 🤷♀️ I said but it’s life altering. If they don’t know the answer to multiple problems how do they know it’s not life threatening and since when did debilitating health not be a problem 🤷♀️ I’m slowly but surely losing faith in the system too. Keep pushing I guess 🤷♀️ Even that gets tiring . My thoughts are with you 🤗
Please have a look at Datis Kharrazian's epic 'Why Isn't My Brain Working'. Wish I'd found it years ago. Best wishes
Thank you Bookish. I do have thyroid and bowel problems. Unfortunately it's not brain fog that's my problem. Often unable to walk or stand up for long or walk up the stairs. Difficulty breathing. My nerves are not working properly. Not sure a book will sort that out?
He is a functional neurologist - no, of course the book won't give you all the answers, but I think it will give you very useful pointers on what may be underlying that nerve dysfunction. Since I ditched the gluten brain fog isn't really my problem either, more neuro, (small fibre neuropathy, neuroinflammation). I'm working on my vagus nerve and blood sugar. I think everyone should read it! (I've had his thyroid book for a few years and that too is well worth reading - even quite minor blood sugar imbalances can thoroughly mess with thyroid and brain function, hence rest of body). Cheers
Bookish I have celiac been gluten free for years, thyroid now treated. Unfortunately I have huge problem with cold sores. It's damaged all the nerves in my face. I now get facial paralysis. Huge amount of nerve pain in my face. I also have lots control to my legs muscles. The brain and muscles are just not talking to each other. Not sure there are many answers, Drs really want me to just go away and get on with it.😕
I'm so sorry. So many things I could say, but your problems are obviously more than mine and I can't know for certain that the brain book will help you. All I found personally was that after 15 years of conventional medication and no answers but still getting worse, investigating for myself, whilst depressing and infuriating, was also invigorating and gave me some measure of self confidence and self control. I am still a work in progress and still hope for conventional help but no longer rely on it. I had to be completely grain free - gluten free was not enough, and I also avoid cross-reactive foods. Thyroid treatment often isn't enough for health. Getting vitamins and minerals optimal (once I had healed enough to start absorbing) was hugely helpful. For the vagus, I gargle enthusiastically (to make my eyes water), sing loudly and activate gag reflex by pressing down gently on back of tongue. There is always something that can help, even if it is only by small increments. My best wishes to you
Bookish I have willed my self better, tried all sorts of therapeutic things, cut out all bad foods and unfortunately that hasn't helped and neither have Drs. I watched my Mum suffer from the same mobility problems for over 20 years. She was in a wheelchair by my age. I am slow but using walking poles or crutches still up right. Unfortunately I am losing the ability to be positive after 7 years of deteriorating.
I am sorry to hear about your mum. Mine was diagnosed with Alzheimer's but doctors missed a few things. It was bad. What happened to her gave me pointers to what was going on with me - I was lucky. You mention B12 injections above, so I hope that you are still getting those. By the sound of it, you've tried everything so I guess you've done genetic tests/functional testing and tried small amounts of methylfolate if appropriate. Sending positive thoughts and a hug, hoping that you will find a neuro who will look further and give a damn.
Bookish sorry to hear your Mum had Alzheimer's. My Dad had Alzheimer's for 10 years. Unfortunately I have not had genetic testing. It's been refused twice. They don't know what to test for. They say they have no evidence to do genetic tests. Unfortunately they only do the minimum of what they can get away with. My GP has also said I need to stop looking for answers and accept they will probably never find out what's going on. They probably won't refer me for anything any more. It really is time to give up.
I'm sorry. My doctor (Rheum) refused to do more testing so I did my own genetic and functional tests in desperation, just to see if I was going completely down a worm-hole (I wasn't, which rescued some sanity!). Genetics alone is only a pointer for us as it doesn't mean any of it is 'expressed' and actually affecting health, so I can understand why they don't want to pay, especially as they won't have ability to do anything with the result.
Hi Stiff19
Do you think your previous sores caused the numbness or the horrid mouth ulcers ?
❤️X
No I don’t but I can’t help that somewhere symptoms are linked 🤷♀️ I had the flares of singular problems over the years then my hands started with pains rashes swellings little vein leaks etc then my knee ( or sorry knee first then hands) then referral. Medication seemed to help some , but having diagnosis and told to google it as only information . I was then sent a copy of letter to docs which stated id had tests I hadn’t and given I was diagnosed without being looked at I complained about this got sent to another rheumy who dismissed diagnosis and medication and said fibro. Ever since it’s been a downward spiral. I had a big episode lasting 4 weeks and then face and all other symptoms kicked off and have never left all be it some lessen at times to rest head again.
I’m googled out symptoms could fit numerous things so I can’t help myself 🤷♀️ Everything you google says you need medical attention/ diagnosing but that’s not happening.
I think the numbness is a result of swelling, seems to happen when face swells. My fear is face gone from dropping initially to swelling , numbness, now daily opposite eye twitch , tongue swelling and now mouth ulcers . The right side being weak but now hand and foot smaller right side ( wastage 🤷♀️) and nothing addressed along the way.
Symptoms of fibro involved none of symptoms now other than fatigue, non sleep and muscle acheing. Now issues with so much and I sleep like a log 🤣 I even could sleep in day if life allowed it.
Soz gone off, but no I don’t know about mouth ulcers, don’t think they cause the numbness though. X
Hi Muff20 It’s taken me a while to find some words to reply to your post . I’m sure you don’t want pity but I’m so sorry to hear about all your health troubles . It’s not helpful when someone says it’s not “life threatening “ . You know that, but like you say it’s life altering and incredibly upsetting .
I saw a neurologist who referred to a lady for nerve conduction tests . She looked completely disinterested and despite me having a numb mouth on one side she said nerves fine . To be fair to neurologist he has now referred to ENT . I was slightly baffled but he did say someone needs to look in mouth . I will let you know if this turns out to be useful .
I have a friend who swears by Lyceine tablets for horrendous sores .. she takes them all year . I bet you’ve tried loads of different things though 😖.
Keep battling on , knowing lots of people are behind you . Take good care and keep us posted 😊xxx
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