Recent content by Grateful

Re: Looking to hear your perspective, fatigue->bad swallowing->imperfect emg->twitchi hi Well, this is the point traditionally where I explain that a close family member, a 25 year old female, went down with a pretty terrifying collection of neuro symptoms which put her into hospital for well...

Really glad to hear it, and you are absolutely right; it does take time and it does take work. I wish you the best of luck!

PePe I think you are clutching at straws to try and convince people you have ALS. There is one kind of true clinical weakness, and doctors examine patients of all ages all of the time; they are accustomed to the range of variations . 'Mature state' clinical weakness is nonsense; it seems a...

Tweeka Fear causes a vast array of horrendous symptoms; I'm doing pulmonary rehab at the moment and I've been quite startled by some of the symptoms which the specialists have explained to us which are rooted in fear. I thought I understood it quite well before, but I've learned that there's a...

Support does not = encouraging you to believe that all the tests you have had done are wrong, and that your doctors are wrong as well, and that you really do have a fatal disease. I do understand that it is terrifying, but your fears can destroy you almost as well as ALS can; that is why the...

Baileygirl80 Again, from the personal experience of a close family member, symptoms can go away and come back just when you think you are rid of them; at the moment, after almost 18 months, we are hoping it has finally cleared up but the doctors have said that it could take longer for it to...

Baileygirl80 It is also possible that it is a virus; a close family member had symptoms like yours and after very comprehensive testing- including spending more than a week in hospital- the doctors concluded that it was a viral infection. Twitching tongues are very scary but they do not...

Cara Facial migraines are indeed rare but would certainly explain some of your symptoms; it's good that the ENT specialist is being cautious and not piling in with medications which might mess up the diagnosis of your other symptoms. It is good that your neuro doesn't think the twitching etc. is...

Hi nikki I'm doing OK; just a bit sidetracked because my close family member's neurological virus decided to rear it's ugly head again. Plus, I have been on holiday, and lighting candles for very one whose life has been impacted by this rotten disease. I have lit a lot of candles, since the...

Faith I think the problem is encapsulated by your statement that 'I'm in denial.' As far as I can see, anyone who has visited that number of neurologists in such a small period of time, is not 'in denial' of there something being wrong with them. They're in denial of the possibility that...

Cara I should make it clear at the outset that I don't have ALS; total physical wreck yes, ALS no. Nor am I a doctor. However, I really think you should see your ENT again; you may have sinus infection causing the pain, and the thing about pain is that it really messes up your mind. Things...

Slimva If your neurologist is happy with the results then the odds are that you can heave a sigh of relief and be happy too. A close family member had tingling+++ and other very nasty symptoms and was hospitalised for over a week last year with ALS as a differential diagnosis. After vast...

Blue dog I'm commenting here simply to say that you have had excellent advice from people who know what they are talking about. And yet you insist on ignoring all of that advice. No-one can help someone who refuses to be helped; your future is what you make of it...

Dpmoo Congratulations! It's wonderful news and I am thrilled for you. You've done a great job in holding yourself together during a really traumatic time in your life, and I'm sure you will carry on in style. Well done, and the best of luck for the future!

My apologies, phhope, I just wrote a long response which disappeared in the cyber void, for ever, since it did not even come up as moderated. I know that it is hard, since I have spent a hefty chunk out of my life being treated for various health problems at various hospitals, who have patched...