Hi Caldicott , thank you for your story .You know when you say sensory issues - what do you mean exactly ? I have had chronic problems with my sense of smell - like I can smell everything ,and most of it smells bad !! Eye sight is just up and down each day, which is why I've had to stop driving .I wonder if this private doctor will send me for another MRI with the dye - which I didn't have last time ? sorry , just can't wait till I know more like TWS.
Like Tweacle said, it's anything that isn't related to balance and mobility - it's different for everyone. Although MS is one disease, you'd be hard pressed to find two people with the same set of symptoms. My sensory symptoms are very different to yours for example.
I know it's maddening not having a diagnosis and you just want to know one way or another. Try not to stress. Be clear when you go to see the doctor and mention all of your symptoms and how long you've had them and whether they've been intermittent or not. Only you know what's not normal for you, so make sure the doctor knows that.
Yes, please report back and let us know what happens
Just out of interest, how do you react to heat? For example, a hot bath or shower and how have you coped with the humid weather we have had this summer?
Yes, please report back and let us know what happens
Just out of interest, how do you react to heat? For example, a hot bath or shower and how have you coped with the humid weather we have had this summer?
well at one point when the sun hit me I felt like where it was hitting on my back was burning it was intense heat which shouldn't happen through two jumpers and a tshirt:D
I seem to have developed allergies to and get itchy / red at the slightest provocation for no reason its like I am allergic to water at times
Well had my MRI what an experience that was, learnt I wasn't as claustrophobic as I thought:D I was in the mobile unit which was quite surreal not offered any music, was quite a boring half hour or so trying to keep my eyes shut so I wouldn't panic.
Have to wait and see now if anything comes up In the results, the guy doing it was of Korean origins (at a guess) and kept calling me mam through the headphones which annoyed me at first but found it quite endearing by the end of it lol
Mam - that's cute ! I had to wait 2 weeks for my results and had to get them from my G/P , although everyone kept telling me that IF something had shown up, it would be them contacting me .
Glad it's over for you , I guess now you just wait .Will post Friday ,
thanks for posting .
Ok , if anyone is reading .I went today to see the private Neuro and I already knew the Mri scan was negative , but of course I was hoping he would shine a light on the symptoms I am having .
But after a brief bong on the knee and walk the line, he listened to my symptoms and then said well the report of the scan was fine, it must be sleep apnea .
Sleep apnea ? causing the last six months to be a blur of deep fatigue, poor balance , pins/needles in face ,speech problems ?
I have decided to keep my NHS apt and see what he says .I will go to my G/P and try for a sleep apnea test , but it is putting a huge amount of trust to think this is right ?I thought he might go for the MRI scan with dye to make sure ?
Ok , if anyone is reading .I went today to see the private Neuro and I already knew the Mri scan was negative , but of course I was hoping he would shine a light on the symptoms I am having .
But after a brief bong on the knee and walk the line, he listened to my symptoms and then said well the report of the scan was fine, it must be sleep apnea .
Sleep apnea ? causing the last six months to be a blur of deep fatigue, poor balance , pins/needles in face ,speech problems ?
I have decided to keep my NHS apt and see what he says .I will go to my G/P and try for a sleep apnea test , but it is putting a huge amount of trust to think this is right ?I thought he might go for the MRI scan with dye to make sure ?
It's very difficult diagnosing MS - it's often a process of elimination and as symptoms are rarely continuous, it's very difficult for doctors as well. This is where perseverance is key. Go to the doctor, see if you can be tested for sleep apnoea and if it's not that, then go back and ask 'what's next?'
It took 18 months to get my diagnosis and part of that was because of the 'multiple' side of multiple sclerosis. I needed to have more than one neurological episode before they could start going down that path. In between my initial relapses, my symptoms mostly went away and there was nothing for them to diagnose.
If it is MS, they'll get there with some perseverance. If it isn't, it's really important you get the right diagnosis.
It's very difficult diagnosing MS - it's often a process of elimination and as symptoms are rarely continuous, it's very difficult for doctors as well. This is where perseverance is key. Go to the doctor, see if you can be tested for sleep apnoea and if it's not that, then go back and ask 'what's next?'
It took 18 months to get my diagnosis and part of that was because of the 'multiple' side of multiple sclerosis. I needed to have more than one neurological episode before they could start going down that path. In between my initial relapses, my symptoms mostly went away and there was nothing for them to diagnose.
If it is MS, they'll get there with some perseverance. If it isn't, it's really important you get the right diagnosis.
Good luck
Good post, my diagnosis took about 12 months although the MRI scan was the defining moment. I'm really sorry barrow girl that you didn't get a diagnosis. You're symptoms sound very like MS but as others have said its a very complex illness to diagnose. Keep going with the GP and I hope you get sorted.
Thank you both for the replies but you know what ? I think it may be M/E .I have just read the NHS page on it and all of my symptoms are on it .Hmm , well confused now LOL !!
Comments
I can't help being so dozy I can't remember my original password.
Also, it's amusing to confuse you!
Like Tweacle said, it's anything that isn't related to balance and mobility - it's different for everyone. Although MS is one disease, you'd be hard pressed to find two people with the same set of symptoms. My sensory symptoms are very different to yours for example.
I know it's maddening not having a diagnosis and you just want to know one way or another. Try not to stress. Be clear when you go to see the doctor and mention all of your symptoms and how long you've had them and whether they've been intermittent or not. Only you know what's not normal for you, so make sure the doctor knows that.
I hope it goes well
Just out of interest, how do you react to heat? For example, a hot bath or shower and how have you coped with the humid weather we have had this summer?
well at one point when the sun hit me I felt like where it was hitting on my back was burning it was intense heat which shouldn't happen through two jumpers and a tshirt:D
I seem to have developed allergies to and get itchy / red at the slightest provocation for no reason its like I am allergic to water at times
Have to wait and see now if anything comes up In the results, the guy doing it was of Korean origins (at a guess) and kept calling me mam through the headphones which annoyed me at first but found it quite endearing by the end of it lol
Glad it's over for you , I guess now you just wait .Will post Friday ,
thanks for posting .
But after a brief bong on the knee and walk the line, he listened to my symptoms and then said well the report of the scan was fine, it must be sleep apnea .
Sleep apnea ? causing the last six months to be a blur of deep fatigue, poor balance , pins/needles in face ,speech problems ?
I have decided to keep my NHS apt and see what he says .I will go to my G/P and try for a sleep apnea test , but it is putting a huge amount of trust to think this is right ?I thought he might go for the MRI scan with dye to make sure ?
It's very difficult diagnosing MS - it's often a process of elimination and as symptoms are rarely continuous, it's very difficult for doctors as well. This is where perseverance is key. Go to the doctor, see if you can be tested for sleep apnoea and if it's not that, then go back and ask 'what's next?'
It took 18 months to get my diagnosis and part of that was because of the 'multiple' side of multiple sclerosis. I needed to have more than one neurological episode before they could start going down that path. In between my initial relapses, my symptoms mostly went away and there was nothing for them to diagnose.
If it is MS, they'll get there with some perseverance. If it isn't, it's really important you get the right diagnosis.
Good luck
Good post, my diagnosis took about 12 months although the MRI scan was the defining moment. I'm really sorry barrow girl that you didn't get a diagnosis. You're symptoms sound very like MS but as others have said its a very complex illness to diagnose. Keep going with the GP and I hope you get sorted.
Thanks all , hope everyone else is ok if they do have M/S.