Hi again, I had a follow up MRI yesterday in Glasgow Southern General, I was running late because of traffic and quite stressed when I arrived and realised my right hand was shaking quite bad. I first noticed this shaking on Christmas day when I tried to serve the soup, It seems to be when I’m holding things a certain way and I am not sure if it’s normal or not but most of my symptoms have been on my left side for a long time, I had a frozen shoulder a couple of years ago (agony, couldn’t lift my arm enough to apply deodorant) and given a steroid injection which helped a lot, very stiff fingers that can’t make a fist, numbness and tingling and buzzing, foot sometimes feels like ice or burning sensation mostly at night, muscle twitching, feeling like snowflakes landing on my skin, blurred vision on and off and of course, every ones fave! fatigue, now I’m getting the same symptoms on my right. I have had a number of other symptoms over the years that I now realise could be related but nobody has asked me a detailed health history. I have Jessners lymphocytic infiltrate, a lupus like skin condition and am waiting for a rheumatlogy appointment.
As I have said before on this forum, I am not a terrible worrier but the thing that is frustrating me is that I am getting zero feedback from neurology. Nobody tells me anything 
I first had a head scan in November and was called back quickly for a lp and cervical mri on the 20th of December, I asked the doctor who was doing the lp why I was having it and he said my head scan showed signs of several strokes and demyelination, had cervical scan same day as lp, lp was normal but they asked me to come back for a follow up scan.
I just wish someone would tell me what is going on.
I received a letter forwarded from a GP at my health centre from the neurology consultant and in it it said there are abnormalities at the c7 level. I don’t know if this is still being related to MS or they are now thinking something else because of the normal lp.
Just looking for some words of encouragement and I’ve got nobody else to moan to lol.
I hope everyone is well, thanks for reading
Tina
hi tina
how annoying to have to chase neurology for your results.
but i’m afraid it sounds like that is what you’ll have to do.
if you have the secretary’s email address, drop them an email.
or phone them.
good luck
carole x
Thanks Carole, It looks like I’m going to have to, I didn’t want to get in anyones bad books x
As Carole said call the secretary and chase things up. I was made to wait 2 1/2 months for my last results and it was only because I got upset when talking to the secretary that suddenly I got an appointment. We shouldn’t have to chase them up but sadly we do.
Hi BeGrBe,
I find it quite shocking that they send appointments out for scans and lumbar punctures without discussing anything and with no explanation, I have had one 10 minute consultation in which I was asked standard medical history questions and basic physical exam, I have no clue what he saw in that 10 minutes that led to his decision to book me in for an MRI “just in case” I have had to try to piece things together on my own and only spoken on the phone for less than five minutes to him after I left a message on the secretarys answering machine early in January.
Im now worried that I’ll be branded a nuisance but I think It’s unfair and bad practice to leave people in the dark too. Im just desperate to know if I can feel well enough to work again.
It’s not like I’m after an appointment, just a letter or phone call would be ideal.
What do I do about new symptoms? who do I tell that will take me seriously? My GP would probably shoo me away thinking I’ve been reading up but if they would just look back my notes they would see I’ve had health issues for years.
So frustrating! I don’t have this problem with Orthopaedics or Dermatology and they’re equally as busy as anyone!
Tina x
What’s your relationship like with your GP? I was advised on here to see my GP so any new symptoms can be recorded on my medical notes and I’m lucky that my GP is very understanding and doing whatever she can to help.
I also go and see her to explain to me what’s going on because like you my neuro just doesn’t explain anything, at least not in a way which makes any sense to me!
I share your frustration
Debs
The Gp who finally made the referral is good, it’s hellish trying to get an appointment though and I keep putting it off, I’m getting stiches out tomorrow morning so I will put an appointment on while I am there. When I got the letter to go for the LP and cervical scan I called the health centre test results line and asked if they had the results of my first scan and she called me back but she just hmmm’d n ahh’d and didn’t say very much at all, just “see how your next scan goes” I wasn’t freaking out or worried and told her that, but surely I should have been told something about what they had seen on that first scan, I said on the day of the LP that I wasn’t having it until someone explained the first scan to me and the Dr just told me “signs of several strokes and demyelination”
They have got me to a place where I am scared to ask anything In case I am bothering anyone!
The department I went to yesterday for the MRI had posters all over the walls “brain tumour support” …My Dad who is 74 drove me there and when I came out he had obviously seen the posters and he was very quiet and I could tell he was worried, I’ve tried to explain to my parents that MS isn’t the end of the world and there are worse things to be diagnosed with but that didn’t help matters yesterday, it’s difficult to stay upbeat when you’re dealing with symptoms and a brick wall, if they would tell me something I could put their minds at rest and my two daughters, everyone is sick listening to me whinging and being frustrated.
Thanks for replying and thank goodness for this forum or else I might go completely nuts!
Thankyou Rosie,
The letter that was forwarded to me from a GP I saw at the start of my shoulder problems had a pen scored through her name, she was sending me away for months telling me to take paracetamol and didn’t once examine me, even when I went in there with my face drooping on one side! so, I have reason to have little faith in her and moved to another GP who put a bit of thought into it but the letters keep going to the previous GP. As it turns out the abnormalities on my mri explain the pain I have in my left arm, I had to work that out on my own, and there was signs of stroke on the scan as well.
The staff in the new hospital are lovely though, did you attend the Queen Elizabeth? it is out of this world!
Maybe the other GP is receiving correspondence from the neuro and not passing it on then. I will find out tomorrow when I’m down and make sure the letters are going to the correct person “sigh”