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a little bit scared now....

Hi I posted a couple of weeks ago about telephoning the neuro’s secretary for results as my GP doesn’t seem to get them (??). Well yesterday I called her to ask of my lumbar puncture results were back yet and she immediately said ‘yes, i’ll just get your file’. After some shuffling about she came back and said that she could get my file because neuro had it on his desk and he is away this week and did I have an appointment booked? I replied no and she booked me one staright away.

Now last year when I rung up cos I hadn’t heard anything about my MRI results she said eactly the same thing - and they eventually got in touch a year later saying there were abnormalities hence the LP.

Am I being totally paranoid now in thinking that the Lp results also show something which is why she didn’t tell me?

I’m just at my wits end really!!!

Oh and another question (sorry) when you get symptoms such as pins and needles and numbness, do they come and go or are they constant for like days?

sorry for rambling x

Hi sorry to bump this but a spammer has been attacking posts so mine disappeared…

Hi Amanda I feel sorry for the neuro secretaries sometimes, as they are always handling confidential and sensitive info. They must feel very odd about passing on anything that the neuro has not seen and ratified. This may mean nothing at all but she does not want to say something out of place. Try not to worry about it. I have pins and needles in my left hand. It is always there but can feel stronger or weaker from day-to-day. If that makes sense. I know all the waiting for results is excruciating but you will get there eventually. In the meantime, try to get on with your life and push it to the back of your mind (I know that’s easier said than done). Hth, Teresa xx

Hi Amanda,

I know EXACTLY how you feel… try not to worry to much. I was in the same position as you a little while ago.

I had MRI and nerve conduction tests…I was awaiting my results…went to the GP who flatly told me that ’ he doesn’t get the results…and everyone thinks he does…but he doesn’t’…!??

I phoned up the neuro sec…who told me that was rubbish and of course he gets the results and they tell everyone to go to GP for the results…I phoned her up 3 times!..felt like I was being a bit paranoid…but I was really worried!

Eventually she agreed that when the neuro was back from holiday she would ask him If she could send me a copy…(as they never do that apparently)…anyway I received my ‘results’ last week…it was just a letter from the neuro to the GP…says that my tests were all clear apart from some blood results…which were positive p ANCA…which I think maybe is to do with my Ulcerative Colitis.

The situation is now…what do I do…? I still have all the strange sensations…and dizziness etc…do I go back to the GP with the results in my hand…and basically ask him what he’s playing at by saying he doesn’t get results…or just leave it and get on with life?..

I find all this too ing and fro ing sooo stressfull and I just feel so awful.

Why can’t the medics understand that this is so stressful and worrying for us all…we want the results quickly and we also want some sort of answer as to whats wrong with us…

So, try not to worry you will get the results…it may take time…but at least you’ve got another neuro appointment soon…I’ve got to wait now until November…

Sorry for the long post…

Wish you luck…come back and let us all know how things go.

Wendy.

Hi Wendy.

I had positive ANCA at one point, but this is a VERY sensitive test (I learnt afterwards), and apparently generates quite a few false positives, as the slightest contamination (e.g. imperfectly cleaned equipment at the lab) messes it up.

I had mine done again: no sign of positive ANCA. If it were a genuine reading, I don’t think it just goes away by itself, so my guess is my sample got contaminated.

Tina

[quote=Amanda 1973]

Hi I posted a couple of weeks ago about telephoning the neuro’s secretary for results as my GP doesn’t seem to get them (??). Well yesterday I called her to ask of my lumbar puncture results were back yet and she immediately said ‘yes, i’ll just get your file’. After some shuffling about she came back and said that she could get my file because neuro had it on his desk and he is away this week and did I have an appointment booked? I replied no and she booked me one staright away.

Now last year when I rung up cos I hadn’t heard anything about my MRI results she said eactly the same thing - and they eventually got in touch a year later saying there were abnormalities hence the LP.

Am I being totally paranoid now in thinking that the Lp results also show something which is why she didn’t tell me?

I’m just at my wits end really!!!

Oh and another question (sorry) when you get symptoms such as pins and needles and numbness, do they come and go or are they constant for like days?

sorry for rambling x

Hi Amanda,

I wouldn’t read too much into the actions of your neuro’s secretary because I’m pretty sure that you should receive your results from your neuro anyway - be that by letter or in person. On the plus side, you now have an appt sooner rather than later. I know that’s not really an answer but the only person who can tell you that is your neuro.

With regards to symptoms, they can vary for everyone. I have symptoms that are there all the time but get worse if I’m unwell or if the fatigue is worse than normal. Even things like the temperature can make a difference to how I feel.

If the pins & needles - or any other symptoms - are particularly bothersome then make a note to mention them to your neuro - there are various meds available for some ongoing symptoms and they can make a big difference.

Hope that helps

Debbie xx