Forum

Not sure about anything anymore.

Hello all. I’m not diagnosed MS but symptoms are concerning me as to wether I could have? I’ve been experiencing odd symptoms progressing over 4yrs now. I don’t make it a habit of continuing to pester GP due to historical issues with practice and also for the reasons I just want to get on with life ‘every day’s a new day!’ However; a year or so into experiencing what I deem as quite severe short spurt dizziness, lack of energy and weakness I decided to face the GP. I must also interject here as my med history is that I had ALL in my late teens almost 20 yrs ago which I fully recovered from thanks to the brilliant NHS and wonderful family support during illness. But the point is that my worry is/was the dizziness will happen without warning, not related to sudden standing up etc. Example I could be casually talking to someone and have the swoon or wave pass over me. Sometimes the experience feels like a hand is lightly stroking my brain between the cranium… it’s unsettling to say the least. GP only sent me to neurologist because I had restated my concerns of having had past radiation therapy in conjunction with spinal lumbar puncture chemotherapy (Sorry don’t know the medical terminology for this treatment). Anyway, neurologist said MRI showed damage expected to be seen with treatment I’ve had? But that was it! And still experiencing dizziness. Other symptoms I experience : . Poor sleep pattern. . Weakness in all areas where as I was especially fit when things started to go downhill. . Poor balance and coordination which has bouts of severity. . Speech impairment… difficulty getting words out… again in bouts. . Arms & hands going numb randomly wether sitting in chair, painting pictures ‘hobby’. . Lips going numb tingly. . 3 yrs ago legs went completely numb. Couldn’t stand or move from getting off sofa. Frightening lasted maybe a minute or 2. Could’ve stuck needle in me and I wouldn’t have felt it. . Pinching feelings on skin… this is more recent. . Nausea… more recent. . Fingertips sensation of them burnt and not feeling what they’re touching. . Pain feet, joints. . Depression anxiety. . Feeling of pressure building up in head. Intangible cloud sitting above weighing me down. . Eye problem don’t focus well. Especially when moving or in darkness. My latest GP visit (New GP) resulted in my blood results which I had done 3 yrs ago on initially bringing this up. Showing no problems… I thought maybe all this could menopause but both GPS said no and levels of hormones are normal. I questioned iron and vitamin levels and got retest for vit d which is low and now have tablets I’ve just started. I found ms symptoms randomly due to current GP on recent appointment asking me to Google chronic fatigue syndrome…? So I did and as with all such things links to other sites and hey ho here I am! I was taken aback when GP asked me to look online if I went to him/her and said I’ve googled this and this is what I think I have… I think they’d take a dim view of it or that’s what I used to think. Gosh I could go on but I won’t. Problem for me is that since having ALL tiredness has always been issue but it has gotten worse. ALL also gave me numbness ie lips hands etc but that was prior to treatment and not had issues with that until now. Ok. I don’t know what to do just have no energy left… for anything. Just want to curl up and hibernate on bad days shut the world out. More frequently than good days which are a welcoming gift to see the beauty of things that ate naturally given to us. Sorry to drone on… just a little feedback could help. Thank you for reading.

hi posey

tell your gp what you found when you googled chronic fatigue syndrome as he asked you to.

then see what is suggested as a next step.

if he feels the need for a neuro, he’ll refer you.

fatigue is the absolute pits!

stay strong

carole x

Hello Carole Thank you for your message. I discussed CFS with GP and I said that I agree there are relevant symptoms that correlate to me. I have known people who have suffered from CFS in past and it doesn’t quite feel like I have that. I have been booked in for an appointment in March next year with the neurologist! You’re absolutely right about fatigue… it’s inexplicably debilitating at times. I as probably many others on the forum just want answers. It’s better knowing what you’re dealing with rather than keeping ‘stabbing in the dark’ so as to speak! Thanks again. Posey

good luck for your appointment with the neuro.

it may help him or her if you write a list of your symptoms in chronological order.

this doesn’t mean that you have ms but the neuro knows about other things that throw up the same symptoms.

try your very best to avoid getting stressed because after 10 years of being diagnosed i know full well that stress makes all symptoms much worse.

mindfulness meditation helped me through a particularly rough patch so give it a try.

i used to do it every evening through headphones and an MP3 (that’s how bloody old i am).

now i can do it just by adjusting my breathing.

stay strong.

Hello Been having painful knee for a while now and off to xray tomorrow. I don’t know if its linked to plantar faciitis that id had prolonged for almost 2 yrs. Now both my feet are painful to walk on daily and I walk like an elderly person initially. As it is balance and coordination getting worse. I have been up the last three mornings as per usual at silly o’clock, even though I haven’t slept during the day. But i know the fatigue will build up and eventually i will succumb to a daily sleep. Don’t know if the vitamin d tablets are working. But I’m persisting with it. Weak limbs especially hands wrists today more so. Fingertips again feeling like chilblains wearing off. Wondering if anyone else gets these kind of symptoms? Hey ho!

hi sorry that you are still suffering. march seems like forever away but just keep calm and try to be patient. i hope your x ray went well. vitamin D is miraculous, it strengthens the bones and can also lift the mood. i’m awake at silly o’clock after sleeping for a whole 2 hours - wow! i have sore wrists too, wonder if i have rheumatism or arthritis as a side order to ms. we just have to plod on.