Just wondering what sort of times others have had to wait for first neuro appointments. My GP referred me to neurology after a year of poking and prodding for various things. From day 1 I thought my problems were down to my back and nerve compression, as for most of last year I had lower back pain and various bodily malfunctions including;
Numbness and tingling, slight balance issues, incontenence (frequent urination and dibbling between), had a serious bout of rigidity/muscle stifness in almost every muscle in my body (could’nt even bend my knees for the doctor), muscle weakness, extreme calf muscle pain, had points where I would walk so slowly a snail could’ve passed me, tremors in my left hand, muscle spasms in both arms and legs, a feeling that my right arm does not belong to me, notably weaker right side of my body, extreme muscle pain from just above my right hip, akward fine motor capabilities, not as fluent thinking as i used to be, ocassionally stumbling mid speech and having to pause for a moment to get the words out again, absolutely disgusting pain from my heels (feels like ive been walking on lots of little pebbles for hours) and i could go on and on…There really is no limit to what I can feel.
Some symptoms come and go while others have only happened once, apart from my abnormal gait that has been almost constant. I have times where I feel almost myself and just as I start thinking to myself “maybe I’m just making a big fuss over nothing” BANG! I go through another bad episode, the current one is hopefully starting to subside (touch wood).
My GP surgery is aware of all of this and after sending me for a lumbar/sacral MRI it came back with a prolapsed disc. At this point I thought “great, thats whats causing my problems”, but no nerve compression is being caused. At this point I was re-examined and at the time I had a slight tremor in both hands and my right arm and right leg were considerably weaker than the left. He said he would be referring me to neurology as we had exhausted every other route, I had been worrying about this for a while as I had no back pain for a few weeks before the mri and still had some prominent other symptoms, this is when I started looking at neuroligical disorders and found this site. I just want to know what is wrong with me now so can get on a treatment plan and hopefully start having less episodes and get my symptoms under control.
sorry if this is all a bit long winded but thought I would give the jist of my situation (plus it really helps to get it off my chest). my questions are how long have others waited for their first neuro appointment and do you think my doctor was right to book it as a routine appointment with neurology as this means I have to wait another 3 months just to be seen and assessed.
Three months is too long, considering the symptoms you mention. You should go back to your gp and request a quicker appointment. Did your gp mention that it may relate to a neurological condition?
Mine only took a couple of weeks…although I know some people have waited longer.
Take a look at www.nice.org.uk it will give you an idea about waiting times for people who who may have ms. Its not three months. All tests/appointments should happen within six weeks, to reduce stress.
Mine should have been a 20 week wait it was brought forward as optician flagged up neuro problems too making it a 12 week wait Axx
I spoke to my GP yesterday and he said it should be coming up soon, but when i chased up neurology at the hospital they said that it was a 12 week wait from point of referral. when I had the referral done my doc asked me specifically if there was any history of MS in my family. I’m not jumping the gun and saying that its what it I think I have but at the moment I’m open to any possibility. I think I will contact my GP again and query it to see if it can be put through as urgent. Thanks for the replies just didnt want to complain about the waiting times if it was generally the way things worked. Just want to get myself diagnosed and on the right meds for whatever the gremlin in my system is could’nt even open a bag of haribo last night lol.
Let your gp know that your feeling a lot worse…he/she will have to speed things up
I was told I had a 22 week wait, call them again 6 weeks later and was told I had at least 24 more weeks so my family got together and paid for me to go private and I waited 6 days ! Terrible Krissy x
I was supposed to be seen within 4 weeks. Had initial appt in august and should have been seen sept. My appointment is thurs. It’s been about 20 odd weeks x
I too waited 12 weeks ish if remember right then another month for MRI and that was on the “quick” list travelling to another unit.
Just to update spoke to my gp this morning and am going back for another assessment in the morning and to re-assess my meds. just walked/hobbled about a mile this morning to get out of the house as I have been feeling like a prisoner of my condition with disgustingly painful heels (they have calmed down in the last day or 2). Really regretting it now as i feel physically and mentally exhausted. I think I am going to take my list of symptoms with me this time. I dont think it helps that I have been seeing any doctor available to get aquicker appointment (sometimes when you request a particular doctor it can take ages to get an appointment). when I said about the 12 week wait and asked if that seemed a bit long and he said they only put things like suspected cancer through as urgent cases. But fingers crossed things might go a bit better tomorrow and he might listen more as he seems to think my concern is with the nerve pains, which I have already explained to him is the least of my worries I’d prefer to address the incontenence, Impaired gait and weakness first. Could probably do with a blood pressure test aswell as I almost blacked out when I stood up yesterday (not the first time this has happened but definately the closest to dropping I’ve been).
No!! they don’t just put cancer through as urgent cases.
You said the gp asked if there was an history of ms in the family…that says to me he was thinking neurological problems. Which means the appointment should be brought forward and you should be seen within six weeks.
I’m waiting to see my regular doc…my appointments not until Febuary. Thankfully its only a review, so happy to wait.
Insist that it be brought forward, due to your symptoms getting worse…nicely of course
Good luck xxx
Unfortunately for all of us, the ideal 6 week wait is only an opinion of the development committee and not an exact guideline to my understanding. Usually the neuro will triage the individual referral, so hopefully the gp will have forwarded all the relevant info on which the triage is based. Blossom is correct, the go either doesn’t know what s/he is talking about or trying to fob you off. If you know the name of the neuro you have been referred to, may be you could speak to the secretary. Failing that, if your symptoms are worse, maybe a trip to a&e at the hospital the neuro is based at, and maybe that might pay off. Anything is worth a try for answers. X
going to have a frank discussion about it all in the morning. don’t want to seem like I’m throwong my toys out o pram but need to try and get a diagnoses as its ruining my family life (tried making a universe mobile set thet my 6 year old got for christmas the other day but couldnt tie the string properly through the holes so had to give up and do something else with her instead) life and puttting extra strain on my finances as I am self employed so I dont get sick pay and dont want to go down the esa route until i know whats wrong and I really have to. My doc said to me earlier when he phoned it was definately neuroligical and that was the right road to go down and I did find it odd that he speciically askd ms in the family and didnt seem bothered when I said that the only thing I knew of is that my sister has fibromyalgia. I have been to the out o hours doctors service at the hospital over diferent parts of this when it has been unbearable and I get dismissed as its “under investigation” one time every muscle in my body was tense/rigid and got told to wait and see my gp in the morning and another time for the unbearable pebbled heel feeling which they told me to max out the use o ibuprofen and paracetemol or the day and see my gp on the monday (I already knew and tried to explain that I may aswell eat of bag of m&m’s as they will do just the same for neuropathic pain lol). To be honest my local hospital is really poor they had to shut down childrens services last year due to the trainee doctors being withdrawn from bad supervision, other services are also under scrutiny aswell. just gonna see what tomorrow brings now. at least one good thing about this is my life is a mystery at the moment I dont know how I am going to feel from one day to the next.
I don’t know if your aware but you can go to any hospItaly in the uk…just making a point. Have a look on line for the nearest hospital you would prefer and let your gp know.
just to update. spoke to GP again today and he didnt say much about the wait but to be honest I’m having a good day and feel pretty much “myself” Its like heaven when the good days come back I’m even walking almost perfectly the only problems I feel are the usual “leaky bladder” i get and a little nerve pain in my left arm. when I feel like this I don’t mind waiting a while, Just hope I get a longer recovery period this time as the last one only lasted 3 days.
My blood pressure is up a little today though hoping that it settles. does anyone else deal with slightly high bp.
also once again MS kept coming up while my doc was talking to me and he once again queried any history of it in my family, but when I asked him if that was what he suspected he just said that was down to the neurologist to decide. (maybe he does and maybe he does’nt or maybe I’m just paranoid).
Its up to you but three monthe is a long time when your not sure how your going to feel from one day to the next.
If you start having problems again, then your going to have to be more assertive with your gp and start quoting NICE guidelines to him. Take a look at the link I gave you, when you get chance. Your gp has mentioned ms again, so that is good enough for me.
I did try looking at that site last night but was a bit foggy at the time and could’nt concentrate think I’ll have read through tonight while I have my wits about me. thanks for your advice its very much appreciated