As per the title really.
I appear to be in remission (just under a week pain free had my first shower for a couple of weeks today)
I know it’s worth talking to an expert. Will any test(s) they do and the results be worthwhile though or should I defer until I have symptoms again?
I don’t want to waste the appointment set for next Thursday but I don’t want to wait for 6 months either…
Go to the appointment. Always keep your appointments if you can. In the USA, its getting harder since Obamacare took effect to get appointments right away with specialists. The complaints about our Veterans Administration's appointment delays are not limited to the V.A. -- it's universal. If you cancel, you could have another attack and suffer more for longer. SO KEEP THE APPOINTMENT!
Appointment wait times for a GP here in the uk (at my local surgery) are over 6 weeks. You have to phone each day looking for an emergency appointment (they set some aside each day).
It took me three days to get through to them to be able to get the referral appointment. I work and can’t be on the phone to the doctor constantly. You then have to put your case forward to get a slot… In fairness when I mention the symptoms they normally relent pretty quickly.
Wait times on the nhs for specialist appointments are about the same or longer depending on the speciality. For non emergencies you have the right to be seen “within28 weeks”. Luckily I’ve got private healthcare with work so I only had a two week lead time for the neurologist.
The nhs is superb, I have in the past received great care through it and the doctors are amazing but they can’t cope with the number of people and the demands placed on it by those people.
Any way politics aside I came to the same conclusion myself at the very least it is a chance for some expert advice on the subject and to learn some more.
At this time I am not on meds and trying acupuncture. I last saw the Neuro in October to discuss MRI. At that time he said TN was probably caused by virus and suggested meds to take. He did not prescribe any for me but told me he would contact my doctor to let her know what to give me. No follow up appointment. My pain is okay at this timelower jaw, lip and tongue. Does anyone just go to their regular doctor for treatment. I know I could make an appointment to see the Neuro with any questions. I am still in the shocked stages of this diagnosis and a little confused as to what to do. I do see my doctor every 3 months and she is friends with the neuro. Without sounding crazy any suggestions?
Hi Ian,
I also think that you should go ahead with the appointment and get things rolling. TN can really come and go and is different every day. I hope for your sake that the pain is in remission and stays away for a very long time (I had a seven year remission). But if it does come back you will kick yourself for not going.
A neurologist is important for a proper diagnosis, getting an MRI and going over choices for medication. I had a good neuro and I went in to see him whenever my symptoms changed. For refills or dose changes I usually just went through my GP. It entirely depends on your GP though and whether he or she is willing to do that. I think some DRs want you to only deal with your specialist.
I am in Canada so our health systems are similar. And while free health care is amazing the wait times are not.
Jane
I thought I was in remission once. Weaned off the Carbamazapine and had NO pain for a couple weeks. 1 day before my neuro appointment, the pain came back with a vengeance and I suffered for 9 days until the meds kicked in again and started to work. Keep your appts.
This time my doc says he won't wean me until I am pain free for 6 months. Everyday I restart that count down, LOL. I have tiny bits of breakthrough pain everyday.
Just a quick update I went for my appointment and it was very useful, the neurologist has confirmed an initial diagnosis of trigeminal neuralgia based on my description.
He was also able to give me some specific advice on possible medication and we had a useful discussion about the nature of the neuralgia ( basically confirming it is almost certainly ‘primary’ and not likely caused by infection ) as well as largely discounting other symptoms as being directly related to the neuralgia (raynauds and migraines).
This is still early days so will wait to see on all that!
I have an MRI booked for Thursday and a follow up appointment next week. I still seem to be in remission but I have developed some scaling of the skin, dandruff and a slight rash in the temple area in the exact spot that was the main ‘trigger zone’ . It’s not a shingles rash it’s almost eczema like… Yet another symptom to add to the list!