Hi, it`s good to know your GP is ordering more tests and has said you may be referred to a neuro later.
At least he hasn`t fobbed you off with more tranquilisers, eh?
luv Pollx
Hi Poll, yes - as much as I dislike being a pincushion, I’m glad I took action and was listened to. They will be testing me for a lot of things including coeliac disease - the main notes on the blood test sheets are memory loss and abdo pain. Out of the whole slew of symptoms I mentioned (though I did manage to prioritise them). Now I just need to distract myself whilst I wait for those appointments to come around. I ought to encourage myself to do some work (I work from home, am lucky in that I can pace myself in my creative business.) Fatigue is not encouraging me to get on with things though…
At least they are ruling all the obvious out first so that if you need to see a neuro they have all of that information. I had all bloods done first before a referral in case its something simple like a vit deficiency A
Thanks Arwen. It’s hard waiting though and I’ve only really been waiting fir a year so far. As I’m sitting here having a rest before tackling the tea, I’ve got a tinnitus high pitched buzz going on, my scalp feels like someone is pulling my hair and my legs (oh! And arms)keep twitching. All these little symptoms are really irritating and distracting. I’m so glad to be able to pop on here to talk about it as much as I need to though. I’m really hoping the bloods are clear. Every other time I’ve had a blood test it’s come back clear except once when I just needed a bit more iron. My test is this Friday but then I won’t see the GP for the follow up until the 6th Sept. I’m really grateful for the good company you folk provide!
Thanks Arwen. It’s hard waiting though and I’ve only really been waiting fir a year so far. As I’m sitting here having a rest before tackling the tea, I’ve got a tinnitus high pitched buzz going on, my scalp feels like someone is pulling my hair and my legs (oh! And arms)keep twitching. All these little symptoms are really irritating and distracting. I’m so glad to be able to pop on here to talk about it as much as I need to though. I’m really hoping the bloods are clear. Every other time I’ve had a blood test it’s come back clear except once when I just needed a bit more iron. My test is this Friday but then I won’t see the GP for the follow up until the 6th Sept. I’m really grateful for the good company you folk provide!
I seem to be living here on this forum…it’s good to be able to express what I’m going through rather than bottling it up though. I’m so incredibly tired today. I’m having to alternate between mum duties (including playing shops) and crashing out on my bed. I think I’d fall asleep if I let myself. Right now, she’s watching a favourite film whilst I’m sitting on my bed with one ear open to what’s going on downstairs. I’m getting lots of annoying sensations all over today (including an episode of feeling like I was being poked up the rectum!), still dizzy, my body feels really heavy and I cannot motivate myself to begin making the things I ought to be making for a stall I’m on next month. I was going to go to bed really early last night (about 8pm) but then a neighbour’s house caught on fire! Everyone is alright but it was a bit of an excitement. Had to get little’un out of bed and we all stood around in the street until the fire brigade had sorted it out. So today, I am pooped. Really pooped. Even reclining and typing is a bit hard but I need to stay awake! How do you cope with fatigue?
hi reikiblossom
just to tide you over until you get some answers
if your bladder is still bothering you it is possible to self refer to the bowel and bladder clinic.
holding a litre is a bit extreme
the nurses there are great and make you feel comfortable talking about those unmentionables
carole x
Thanks Carole, well aside from the odd twinge and occasional need to run to get to the loo in time, everything seems OK toilet-wise. The brief pain felt muscular rather than like pain from constipation and it passed quickly. The earlier fatigue has lifted somewhat but I’ve still gone to bed early. It takes me a while to wind down. Smartphone in bed is a new bad habit though… 
Omg don’t talk about smart phone in bed lol A
I’ve just added ‘heavy arms’ to my symptom diary. Quite often and for some time now, my arms have felt disproportionately heavy when simply brushing my hair.
It seems silly to have to bring them down after a short while. I’m quite fit, do Tai Chi and am a busy mum who often weightlifts with a 4 1/2 year old. So to feel my arms being suddenly very heavy and weak seems out of whack with my general level of fitness. Does anyone else get this?
Reiki, I’ve had both heavy legs and heavy arms where it feels like you’ve got a five kg weight on each limb!!. Might even sound strange but have experience heavy head!!!.. Where I just have to lay my head down because my necks so tired I can hold it up!!! And I’m usually a fit person so it’s come as a shock to me too. I’ve had to take up little bits of yoga and low level strength exercises to keep me fit now
Thanks, Stressed Little Puddytat. It’s not helping that my back is so tight, no matter how I massage or treat it. Haven’t had the heavy head but I can imagine it. I’ve also had very slight numbness in my face, just where I had a shooting sensation about two weeks ago. Woo! and just looking over at the calendar has set off the dizzyhead again.
Mine too! My lower back is so sore and won’t ease off and my neck at the top and to the right is so painful when I’m having a bad day. So tender to the touch too when rubbing in painkiller gel And I feel for you with the dizzy head, it’s not good. Glad I’ve been given a bit of a break from that feeling!!
Well, the bloods have been taken and I was told I can ring on Tues for my peace of mind but that they will call me if there’s anything interesting. Off for a picnuc in a wooded playground soon so that should distract me for a bit! No, I’m not going on the zip-wire…
So…I’ve got most of my results back: Glucose, Iron, B12, Thyroid, Hormones, Full Blood Count, Kidney and Liver function have all come back OK. I’m just waiting on the test for Coeliac disease now and should be able to find out in a couple of days.
I’ve just been to the GP again after all my blood tests came back clear and, armed with my Five Worst Symptoms, have come away with medication to relieve the dizziness, an appointment for a hearing test and, thankfully, a referral to a neurologist. He said he could refer me to an ENT specialist at the same time but that there was a chance of each waiting for the other to see to me, thus ‘dropping the ball’. He also said it could be a loooong wait. But that feels like a big success for me today.Phew.
Just read your posts and I’m so pleased you finally have a neurologist referral. I can’t imagine what it must have been like all these months. I ‘decided’ to skip it all by getting hospitalised for my probable first episode and I’m still here. I wish you well with your diagnosis whatever it turns out to be.
Thanks Offy, I wish you well. Hope this forum is relieving the boredom of being stuck in hospital!
Has anyone ever reached out to do something, had a momentary blip, pulled back and then reached out and finished the maneuver? I’ve had this a few times, usually in the kitchen when I’m moving things around. It’s like a strange spasm or momentary memory blip. Reach for the plate, why is my arm out, bring it back, oh yeah, need the plate. The other thing I’ve had today (on top of dizziness, tinnitus and twitchy muscles) are stabbing pains, all on my left side. Toe, side of chest and shoulder. Not all at once, they happen so quickly. No wonder I’m tired with all this crazy short-circuiting going on!
I definitely get the random stabbing pains. I’ve had them in my arm/hand so unexpectedly and strongly that I have dropped things.
I also tend to go ‘blank’ at times and not seem to know what I am doing. This is quite weird and scary, isn’t it?
I hope these things settle down for your very soon.
Just a couple of extras to add to the list, huh? xx