im new to this site and i have not had a diagnosis i really wanted to chat with people who have this condition as i believe that you can read all the symptoms and not fully understand what they mean but if your able to actually have a chat with people who have MS then you get a better picture.
I am now about to bore you all silly with a list of my symptoms and i would appreciate it if anyone would give me some feedback.
I have had an episode about 5yrs ago where i had burning sensation in my thighs and a tight band sensation around my right ankle, i had a feeling that my legs would give way from under me but never had any numbness, not that i can recall anyway, about 4 weeks ago i had and still have a mild vibration sensation in both my feet, i wasnt bothered at first but then over a couple of days i developed again the burning sensation in my thighs like i had sunburnt my legs and left knee, my legs dont see the sun, on the outside of my thigh on the right leg it felt like cold sensation, i have developed numb little toes on both feet, random stabbing pains in my legs i get days were i get a leg cramp in the right calf or dyas were my thighs feel like i have seriously overdone the sunning!! i have altered sensation on my ankles but not enough to say they are numb, i had a couple of episodes were my right eye went funny and i had like a band of colour in the right eye that was in a narrow tube followed by 2 thick black lines that went distorted when i moved my eye then it looked like i was having blindness sweeping over the eye, it scared me and it warranted a trip to hospital but they couldnt find anything wrong, ive since had a very brief couple of brief lines again but went quickly. If i overdo any activity during the day i suffer the next day with burning, slight trembling of the thigh muscles, ive also had days where i cant think straight, everytime i walk fast and then stop my feet go mad with buzzing then quieten down to the normal light vibration but thats more or less constant, i had a tight banding around my ankle this time for about a week then just seems to clear off again! another thing ive had is sudden dizziness that stops me in my tracks but only for a couple of seconds and i really cannot see i can be doing something or nothing!, does any of this sound familiar, i appreciate that your not neurologists but you do have the condition, what symptoms did any of you have to get your diagnosis, im due to see the neurologist on wednesday, my family doctor suspects MS and prescribed Gabapentin but wow i was off my head nearly!!!. big thank you to any info you can throw my way, sorry for gabbling on.
The problem with neurology is that there are only so many symptoms that someone can get, but there are literally hundreds of different conditions that can cause them. This means it can be really tricky to work out what the problem is.
So, yes, your symptoms are found in MS, but they can also be caused by loads of other things, including some fixable things like vitamin deficiencies.
You’re on the right track to getting some answers though: seeing a neurologist is the essential first step. You’ll have a clinical exam (including things like testing your reflexes) and then the neuro will decide what tests need to be done (typically MRI and possibly other things). It can take a while to find out - so try and be patient and keep an open mind about what’s going on.
Re the symptoms that led to my diagnosis: I woke with tingling / pins & needles from the knees down one morning. Over the next week, it gradually spread up to my breastbone. I was hypersensitive, e.g. I had to wear shoes all the time because any texture was too painful to walk on. This, and a couple of other minor things, lasted 3-4 months and then recovered 100%. I was diagnosed with probable MS after an MRI (positive spine, negative brain) and LP (positive). More symptoms and another brain scan confirmed MS later that year (1998).
MS is a very individual thing though - no two stories are the same!
I hope your appointment goes well. Make sure and take a brief list of symptoms with you. Read through it; don’t hand it over. Give the neuro a copy at the end (keep one for yourself, so you know what you told him/her). Take someone with you if you can - an extra pair of eyes and ears can be invaluable.
Hi, a huge thank you, its certainly a worrying time, ive made a nice diary for the neuro on wednesday! poor man will want to quit lol i said to my gp that i suspected MS and he did a reflex thing on me and he said i had brief reflexes!! and said we will talk about MS now that you have mentioned it! i was trying to find out what he thought was wrong as at the time i really wasnt feeling very good, i know theres something wrong, and he said what makes you suspect MS and i told him about the burning legs and cold sensations blah blah and he said he didnt want to scare me, i have other symptoms but i do forget to list them, i know this is a more worse attack than before thats for sure, i will keep you posted if you can tolerate my gabbling
It’s normally a bad idea to overdo the symptoms list - loads of symptoms and detail raises suspicions that the patient has a “functional” disorder (i.e. there is nothing actually wrong with the nervous system).
Also, it tends to be a bad idea to say that you think it’s MS, especially at the moment with Jack Osbourne’s diagnosis and publicity. So unless it says it in your referral letter, best to say that you don’t know, that’s why you’re here - to try and find out, and get some help.
I wish i knew what was going on! over the last few months ive had a numb patch just under the bra line and that its permanant with this area of numbness ive also got tingling that goes through it intermittently and when it tingles it feels like its either tightning or being pushed real strange it started with pain in my back whenever i washed up and it had brief tingling now its worsening, ive also had a strange almost numb patch on my left thumb that suddenly came on few months ago after left arm went really warm for now reason, this altered sensation lasted a few months and then went, over the last few days its returned in the same place! but this morning 21/12 i got up and did my usual and then had quite nasty palpatations that made me quite lightheaded, during the week i had a sudden warm sensation on the right ear that spread over the right side of my scalp that lasted about an hour or so and felt strange when i went outside and had the wind blow on it but again this went away, this morning like i said i had these palpations that really made me feel funny and still dont feel right now, ive had these palpatations for quite a few years on and off but followed with a mild headache where the warm sensation was during the week behind the ear, im afraid to visit the doc incase im deemed as a hypocondriac seeing as ive got the diagnosis of a functional disorder, i couldnt catch my breath properly, my partner reckons my head was due to a migraine! i just dont buy it, ive had my MRI done last week and still await the results, i guess the lack of response means theres nowt wrong! but i truely believe that the neuro isnt looking in the right place, my back is really misbehaving. I wish you all a very merry christmas and a happy new year.
i said to my gp that i suspected MS and he did a reflex thing on me and he said i had brief reflexes!! and said we will talk about MS now that you have mentioned it! i was trying to find out what he thought was wrong as at the time i really wasnt feeling very good, i know theres something wrong, and he said what makes you suspect MS and i told him about the burning legs and cold sensations blah blah and he said he didnt want to scare me, i have other symptoms but i do forget to list them, i know this is a more worse attack than before thats for sure, i will keep you posted if you can tolerate my gabbling