I’m sorry you are feeling so down and neglected. Everything feels like it’s in limbo pre-diagnosis. Unfortunately the only thing you can do is to keep chasing them, make a nuisance of yourself until you get some response. I know that may be the last thing you feel like doing if you’re not well, but with waiting lists getting ever longer, it’s really important now more than ever to be as proactive as you can and fight your corner.
Assuming it was your GP who referred you in the first place for Neurology, get them to chase up on your behalf.
It shouldn’t be like that in 2022, but sadly it is.
I really hope you can get some answers soon and wish you well.
Willowtree
Guess i spoke too soon , have been told there is no one who is able to do the lumber puncture so will be an even longer wait.
Getting really fed up of waiting for a procedure i do not want to get help.
Feel like just giving up. This is sending me into a downer.
All i want is some answers but they are just putting up a wall, i am suffering everyday and my fatigue is so bad im sleeping all weekend every weekend because im so tired from working all week. No quality of life.
Do they think the lesions will just disappear! Or do they just want me to go away and rot quietly.
They are making me feel that its my fault im ill .
Sorry far ranting on but just so angry , this has been going on for many years now.
Hi Wobbly
I agree with Willowtree you have got to pester them unfortunately the only one who can fight for you is you.
Just tell them what this is doing to you.
Come on you can do this we’re all behind you.
Sending love and strength.
Best wishes
Sam
Feeling neglected - I really feel for you. My consultant left Poole Hospital 6 years ago. My annual appointment was cancelled and I haven’t seen one since. I’ve told my GP practice so many times, yet nothing. I have told my MS nurse every year, still nothing. I am widowed and just struggle on alone. I could barely walk for 2 days this week, I struggle to cook a meal, if I do manage it I then struggle to eat it. I just exist, I don’t live.
Just wondering if it can be done at another hospital, given they don’t appear to ha someone to do it. In theory we have a choice as to where we are seen. Maybe ask your GP about it. Worth contacting the hospital’s PALS (patient advice and liaison service).
Firstly thankyou for your kind words and advise , you really lifted my mood this week.
After ringing everyday i finally got to speak to a gp.
He could not understand why neurology said there was no one to do the procedure and agreed that this situation needs moving on so that i can get some treatment.
He has written a letter to neurology so hopefully will hear something soon.
I really do hope you get some answers soon. The unknown is a ‘dark’ place, as thoughts are sometimes uncontrollable. If you really are unhappy with the way things are being handled, see if you can transfer to another Hospital under a different neurologist… that was something we were going to do if we hadn’t made any progress that we were happy with. Don’t undervalue your importance and let others tell you your worth by making you wait. This is your health and happiness and that’s the most important element of your life.
Sending love and strength and I hope things start to progress for you soon.
Hi there I’m knew you this page but like yourself I’m feeling so frustrated . I maybe shouldn’t be in this page however I’m wondering if someone can please confirm for me, would ma show up in a blood test or an mri scan. For the last 14 months I’ve had painful shoulder blade muscular pain/tightness/spasms, as well as radiating pain theough my upper spine… I also have the feeling of something in my throat. About 14 months ago I started feeling exceptionally fatigued at work, by mid afternoon I was exhausted felt like my eyes were being sucked into the back of my head and had unusual muscle tightness in the muscles in my chest and under right shoulder blade, as well as this my wind pipe felt very uncomfortable. I couldn’t sleep and since then have always been in pain. I believe one medication I’ve taken had possibly helped the flume feeling or spasm in my throat as it doesn’t feel as bad however this has only been over the last 6 months or so, it still happens but no where near as bad, I lost my voice several times a day or struggled to get my voice out. Now I’m left with what feels like constant pulled muscles under my right shoulder blade especially to the right of the upper middle spine… being more active than normal causes it to worsen and cause a horrible radiating pain through my spine…. I’ve had a chest X-ray, many many many blood tests and today after finally being sent to a rheumatologist a couple of months ago and getting a full spine MRI today my consultant told me it was totally clear. obviously I’m happy there’s nothing dodgy showing but I’m equally gutted/upset, I have no explanation for this pain, yea I don’t feel poorly like I did last year where I had to take 3 months off work which I’ve never ever done, it the pain is more of an issue now…. Rheumatologist is by jo way ignoring me but there’s just no reason for it, so bed time meds upped, put on daytime meds and referred to the pain clinic for injections and also to an acupuncturist. I suppose the main thing is hopefully being in less pain every day and actually sleeping as I know a decent sleep also helps but having no explanation for what feels like constant pulled muscles under my shoulder blade and around it, causing pain down my inner arm , pain theough my spine and a feeling of a lump in my throat makes me feel like a fraud……I’m not one to complain of any pain unless I really have reason to……
So so sorry to have rabbled
On, I’m just wondering if these symptoms are similar to anything anyone in this forum has and if also being told all tests are clear …