Well, it seems I am joining the long list of Limbolanders.
Well, I had my first Neuro appointment (15 mins). Eyes and balance are normal, which I knew before I went in. I foolishly handed over my list of symptoms and history, but this wasn’t read properly - just skimmed for a few seconds and put in a file.
Apparantly, my back pain is due to my job, my pins and needles are due to Carpal Tunnel Syndrome (I think not - what about my feet and face!?), the squeezing in my ribs is anxiety - eh?, my (unusual for me) headaches are one of those things and the burning, hip pain and numbness are probably viral after having Pneumonia. My dropping things was treated with a shrug and I am being referred back to my doctor as it’s “nothing serious”. I should feel happy I s’pose, but I don’t.
I asked who I needed to contact if these symptoms flared up again and was told my doctor, so back to square 1. I can understand that they probably see very poorly people, but I didn’t even get a wait and see. I felt like a 5 year old leaving the headmistress’es office.
At least it’s on record I guess. I’ve bought some vitamin B12 and hope I continue to feel normalish, but have a sneaky feeling I’ll be back to the doctor at some point. Best Wishes to all x
I would ask for a second opinion, and you dont even have to ask your GP to do this if you get intouch with the PALs service at the hospital you were sent to and raise your concerns with them. I have to say 15 minutes sounds fabulous, my appointment was 3 minutes long!!! I think we should also consider what was on the referral letter, if the GP wasnt thorough in the referral Im afraid they dont take us seriously.
I do feel quite good at the moment though, apart from some joint pains, so might wait for a next episode or more symptoms - if that happens. It’s strange how you start doubting yourself when the medical peeps dismiss you.
One thing she did say was that my odd sensations and pain haven’t lasted long enough. Most of mine have been seconds, minutes or hours rather than days or weeks? I did have 4 days where I couldn’t put my heel down - it was like standing on glass, but generally I’m thinking that could be part of why she didn’t feel the need to take it any further.
I was hoping a female neuro may be more empathetic, but apparantly not!
Thanks, Deadchick. I was thinking about it although most symptoms have eased off apart from the back ache and tight calves. She did say that the burning, numbness, tingling would need to last days or weeks rather than minutes or hours which I had for it to be anything. I wonder if this is why she didn’t want to take it any further. The longest thing I had was 4 days where I couldn’t put my heel down. Think I might do a wait and see myself as this 4 week period would only count as 1 episode anyway? I do feel as stiff as a board in the mornings though :-\ x
I get so angry when i read more and more posts about dusmissive neuros! Its so unfair.
If the symptoms flare up again ask your GP to refer you to a different neuro.
My GP has referred me to a different neuro who I hear from mt GP and my neuro physiotherapist is really nice and very thorough, but even so experience has taught me not to expect too much. I won’t be surprised if I walk out of my first consultation with him not having got any further.
I really hope you continue to improve and things settle down for you xxxxx
Whoops, my lost post disappeared then returned. Sorry for 2 similar posts! Seems a common theme on here with neuros :(. Still, she was better than some I’ve read about - did look me in the eye at least. I hope you have better success with your new person, very best of luck. Will be back to doc straight away next time, I’ve had weird things going on for a year on and off, so I’m camping at the docs if it comes back again! Take Care x
Although i am not diagnosed waiting for neuro appointment any idea how long to wait he was looking at my gp referal this week.
The reason i decided to post was because of you mentioning not being able to walk on your heel happened to me a few year ago but it went away so i thought oh i’ll be ok and i was until last year, knees starting to give way and walking became hard, but my eye sight started about june last year been seeing a specialist who thinks i have a auto immune disease i’m pretty certain i have ms.
Loss of balance walking, can only walk with crutches that a neighbour let me use, and can’t walk far, i fall alot have weakness in my legs gotten worse over last 6 months, started to have pins and needles when it started which turned into stiffness now cold feet and hands alot, i can’t leave house unless i go doctors or hospital so my mum and dad share taking my little one to school, my last gp was useless went to him for a year and he blamed my weight lost 4 stone still no better finally new gp i have ever ms symptom so i won’t list them all but mine started in my feet then hands now it just worsened over time so thats the reason i posted.
Hi, like Bunny I also get very annoyed when I read how people are being discharged by neuros, who can`t come up with an answer as to why their patients are experiencing awful problems and pain.
Why do they do this? If someone is still having on-going difficuties, there MUST be something wrong!
You and other folk in this group feel neglected, dismissed, made to think it`s all in the mind etc. Grrr!
I am lucky that in the 16 years of investigations and still no full diagnosis, I have not been made to feel like this.
Absolutely right. I know it’s cold comfort at the moment, but what you say is so true. Neurological things are notoriously hard to get to the bottom of. Sometimes there is a Eureka! moment and the diagnosis is straightforward. Sometimes it is a matter of piecing together a history over time, and it takes time for a picture to build up into something that points in this or that direction. Often things really do melt away and never come to much, so hang on to the thought that you will be in the third category, with a bit of luck. If it turns out that you are on the second, well, at least getting it all recorded now is, as you say, a step in the right direction.
Good luck.
Alison
p.s. It seems to me that doctors think they are saying, ‘Please do not worry, I’m sure it’s nothing serious,’ but what we hear is, ‘Why are you wasting my valuable time, you muppet?’ So don’t take it personally. The neurologist was probably only trying to reassure you, even if that’s not what it sounded like!
I was not impressed with the first neuro I was referred to: the only test he ordered was an MRI of my brain, and then he took 6 months to getting round to seeing me to discuss the results. I asked my GP to refer me to another neuro, which he did (I don’t think he was any more impressed than I was!). Within 6 months of my first appointment with the second neuro, I’d had an MRI of my brain and spine, an evoked potential test and a lumbar puncture - and I’d had a follow-up appointment and got a diagnosis.
Neurological issues may be difficult to get to the bottom of, but it helps if they actually do some investigating and it sounds like this isn’t happening. It also sounds like your neuro trained in the same school of uselessness as my first one. Definitely ask your GP to refer you to someone else.
Thanks so much guys, it really does help to share this stuff (and the muppet bit really made me giggle!) Since my last post, I’ve developed hives - been up one leg, now slowly going down the other - fgs! Odd small pains and tingles but nothing too bad like before. I’m still in two minds about doc as feel reasonable. Do you think I should go anyway or wait until/if I get another bad patch? Thinking an MRI would show better after a 2nd episode. I’m just not sure what to do but am keeping records of everything and will go if anything big occurs The heel thing is interesting. It was so odd - I just woke up with it. I really hope you all get the help and support you need x
I been like this over a year now so I can wait a few more weeks my first gp need lessons in people skills people say he’s terrible been about 5 weeks since I was refered had bloods first all normal reading on here is helpful I only thought it could be ms after I lost my balance though I do hope you get the results you need. I just want a diagnoses I know I should wish I didn’t have it but I’m desperate to be diagnosed after my sister trying to tell me it’s all in my head yeah cause that would make me fall I kind of want to show her I was right all along that something is seriously wrong even the eye specialist thinks so just have hope I’m sure all will turn out well Good luck x
After an 18 week wait my neuro appt has finally come round today, I don’t expect to make any progress though as I know too many people in a similar sitaution who have been fobbed off.
I have proof that my balance is shot ( caloric testing) and have had bloods tested for just about everything, so I guess if I don’t get any help today I will just have to assume I am weird…end of
Yay finally got neuro appointment for next week I know I sound excited but just want to be diagnosed finally a gp who doesn’t dismiss me so glad I changed any tips for first neuro appointment
