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New member
Aug 19, 2005
hey every1, just registered been tryin to find sum1 that might know how to help.

im 20, female and live in london england. last december i started feelin a bit poorly. back muscles ached, got heart palpatations, floaters in my left eye, twitches in legs and felt like i got tired really quickly. then i came home from uni and symptoms progressed. same as before, yet now my arm muscles especially at the top and legs muscles seem to twitch on their own, have shooting like pains, and on lifting a glass of water my left arm inparticular has a tremor and shakes. things seem heavier to pick up and if i try and do any exercise to strength the muscles, i jus feel them being weaker the following day. also odd buzzing feelins in my foot. i lose concentration easy, cant spell words easy things like that. sumtimes right side of face feels kinda of numb?
my bones are cracking very badly all over but especially in left hand. i lost a stone and i havent been able to regain that weight even if i eat loads. plus now my hair is thining badly. have had blood tests all normal expect for my white blood count has been continuously low and my thyroid has been all over the place. my doctor laughed at the idea i might have ms or als and didnt feel like he was listenign or taking me seriously and so ive been diagnosed for now with fibromylagia and ive got to go back in a few months for repeat blood tests.
also in last week ive stubbed my big toe a few times which i found to be a bit unusual for me and sumtimes after gettin up off the couch my legs feel very wobbly. to me, it looks like my arms and legs have become thinner, whether this is jus becos of weight loss i dont know. but i have lots of strechmarks now, behind my knee, thights inside thighs the lot. i know they say ALS isnt highly common in people my age like M.S but i think until i have sum sort of test to rule it out im gunna be worrying. as its not impossible. especially since my muscles dnt seem to be gettin any stronger. apart from the odd pains every now and then my muscles dnt hurt, they ache. but wen u touvh them or prod them physically they hurt

any advice if any1s been in same situation or jus anythin in general would be REALLY appreciated. the NHS health service in england isnt the best by any means its likely if i did manage to get referred to a neuro i would be waiting a gd few months. and thats if the doc even takes me seriously enuff to refer me. im jus a typical student to them working myself up

thanks again, and sorry for long message

all the best to every1
From what you say it sounds like you've got something going on but you aren't really presenting with the normal? or average symptoms of ALS. The fibromyalgia diagnosis might be correct. I'd try to get a second or even a third opinion if possible. Keep asking. The squeeky wheel gets the grease. Good luck and try (not easy) not to worry. Face each day as it comes. Take care.
Really sorry to hear of your situation, and I can sympathises with your frustration. The average GP is very unlikely in their career to come across a case of MND and given your age this would only reinforce their view. The only advise I can offer, is to formally request a referral to a neurologist. Once you do get in the system things do happen quickly. By the way which area are you in?
Take care

I have an appointment with a doc on friday, but my usual one is on holiday and this one isnt the best i have to say :(

im going to ask him, or try and demand infact that i be tested for blood related diseases. im not convinced i have this fibro thing after reading up on it. and after reading symptoms and signs of such things as leukemia and lympoma im quite concerned as i seem to fit sum of these? enlarged lymph nodes, continous low white blood cell count which i seem to be the only one noticing?! bad bone pain and cracking. im tryin not to get myself too worked up as i like to think they would have picked up on sumthin like these. but im sure by ur reply u know wot sum docs can be like. im goin back to uni in a few weeks, so im gunna go to the uni doc there who i have been to a few times and suggest about seein a neurologist. i would go and have every test under the sun right now if i could to find out wot was wrong with me!

but thats not the way it works unfortunatley :roll:

i actually live jus outside of london in a place called hertforshire? but london is jus easier to say lol


hayz - good luck with all of that, what a difficult thing. I've been diagnosed with fibromyalgia and have had some similar symptoms. Problem with fibro is that it's different for everyone. However, don't let it be a "dumping" diagnosis. Persist with the blood tests, thyriod, B vitamin deficiency, lupus, Rhuematoid Arthritis, osteoarthritis, etc. etc. Are you able to go to a different GP or are you required to go to a certain one?
I work with a Doctor that Specializes in Fibro and other conditions. He has offices in Geurnsey and I believe in London area. I would recommend him highly. It would be good to get another opinion and he is great at gong into detail. the office contact is Judy Hayman [email protected] I believe he will be at his clinic at the UK clinic next week. He also has a clinic in Canada.
Hi Hayz,
Like Melissa I too have fibro and it does take on a lot of other symptoms. Your explainations of the muscles weakening and cracking and the numbing in the face I can relate to and of course being extremley tired. Please keep in mind though that this is one of the last things we should think we should have because Drs have finally recognized this as a legitimate disease more and more people are being diagnosed with it when Drs cant find anything else. Do continue to look for answers and explainations as why you might have this? Over the past 10 years when a new symptom has appeared I attributed it to my fibro when in fact I actually had something else wrong with me. If this is something that you are tackling just like ALS you need education and there are medications and homepathic drugs that can help. The best thing I can offer is keep on trucking and dont let this thing beat you because unlike ALS you can get this under control through diets and a positive attitude no matter how much it hurts. It is not debilatating although some days you might be screaming with certain pain but you will get used to it. Take Brians advice if you can and see the specialist. I wish you the best on your outcome.
Kim ALS About Loving Someone cheers
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