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New symptoms and a question...

Ok, I’m going to start with the question! I have had an MRI scan of my head (2 weeks ago) and my follow-up appointment with the neurologist isn’t until the very end of July. My question is: will he contact me if something shows up on the MRI or wait until I see him to tell me? I am in the UK if this helps!

Now my other, new, problem. I was awakened in the night at the end of last week with excruciating pain in my jaw, it was like electric knives were stabbing my jaw and face (only on one side). I took some painkillers (paracetamol - I have severe asthma and am very limited as to what I can take for pain) but this didn’t seem to do anything. Now, I must say here that I am normally very good with pain and have a high pain threshold (have had numerous lung collapses with insertion of chest drains etc!) but I was forced to call in sick for work, and make an emergency appointment with my dentist. I was assuming that it was my wisdom teeth coming through, even though I couldn’t see anything when I looked in the mirror.

The dentist had a good look and couldn’t see anything which would be cause for concern. He took an X-ray which showed that I already have my wisdom teeth through and the film was completely normal. So, he gave me a weeks worth of antibiotics “just in case”, even though I have no symptoms of infection. I am convinced, as is the dentist, that this is not a dental problem (I have no pain in my teeth, it’s in my jaw and cheek).

I am nearly at the end of the course, and there has been NO relief. I am at the end of my tether! This pain has reduced me to tears on a few occasions and has made life EXTREMELY difficult since I am currently sitting my university exams! I stops me sleeping and seems to come on with no warning. I have found almost nothing that helps (I have tried applying heat, cold, pressure, avoiding talking, smiling, eating).

I have booked an appointment with the gp, but the earliest date I could get isn’t for another two weeks! I can’t put up with it for that long! Does anyone know what this is? Or have any ideas of what I could try to reduce the pain?

Thank you for any advice!

hi chukkin

it appears to be a nerve pain which will need neuropathic painkillers, probably will need request from neuro.

meanwhile neurofen may help.

if it IS neuralgia you have my sympathy because it is a truly horrid affliction.

however after 7 years with ms i can say that most symptoms go away sooner or later.

the saying “this too will pass” is often seen on this forum.

see your gp as he/she may be able to prescribe something and it will be on your notes for your neuro to see.

i had neuralgia many years ago before i had ms. i was almost banging my head in the wall so my husband poured me a large whisky and i put the headphones on and played loud music. it worked a little, the throbbing had to keep up with hawkwind (it was the late 70’s) and the whisky - well it made me not care!

good luck

carole x

Hi Carole,

Thanks for your reply! Unfortunately, neurofen (related to ibuprofen) is one of the medications which are not to be taken by those with asthma, and so I am left with paracetamol, which really is doing nothing. I can only hope that it is something which will disappear as quickly as it started since I cannot see the gp for another fortnight!

hi chukkin

try headphones with loud headbanging music and a glass of whisky then.

it’s worth a try.

carole x

The MRI, well my first appointment of this year was January and that was just a consultation and I was referred to get an MRI at that. My next scheduled appointment wasn’t until September. I had my spine MRI’d in February and 2 weeks later the results were in showing plaque on the spinal cord and the neurologist phoned me. I then had another two MRI’s in April -without and then with the contrast. Now my next appointment with the neurologist is beginning of June at the same time as I am getting my lumbar puncture (LP).

Over the last 3 years my appointments were only once every six months and now they have found something wrong it is an appointment whenever available. After I got the first MRI results I phoned the consultants secretary and explained and that I needed my appointment moved up and the secretary told me no chance because the clinic was fully booked. I told her to just get the neurologist to phone me as she wasnt qualified to make such a judgement -especially since the neurologist told me if the MRI showed anything the appointment WOULD be moved up.

As for the painkillers, I was taking 2x 50/500 or something codydramol and such. All it did was take the edge off enough to give some relief, but I am not allowed those or anything remotely like them because I have gatro-paresis as well as MS, well in saying that apparently I have to wait until the LP so we can say 100% it is MS -even though they are sure (or something).

Like you I have a high pain threshhold. I have suffered broken teeth and waited until it was convenient for me to get treated, broke both the bones in my lower arm and had to throw it over my shoulder and walk 5 miles home, I’ve had compound fracture in my hand and played basketball with it for two weeks before realising it was actually broken, broke my nose several times, had wire ripped out my leg, Ive been cut, burnt, had a brick bounced off my head and even to this day one of my knees lock and the pain is so bad that I sweat and feel faint and I have to rip more ligament to straighten my leg again.

None of that compares at all to when my nervous system suddenly lights up a track of nerve at maximum pain and there is sod all I can do about it because of advice from the gastroenterologist.

The best thing that worked for me was diazepam. And I am not allowed that anymore. Last night I had to take two very strong painkillers to get to sleep, but I don’t think its the fact they stop pain, more that they knocked me sideways.
I think I’m onto second stage MS though because my symptoms never go away completely. Some do, but a lot don’t.

If it is really bad my advice would be to see if the doctor can prescribe a sedative that you can use only when it is at it’s worst.

Sorry for the wall of text :slight_smile:

Just had another night of less than 3 hours sleep due to this pain which will not go away! I have literally tried everything I can think of: applying heat, applying cold, applying pressure, rubbing, different medications (I am limited to paracetamol and dihydrocodeine, which even when taken together do little to help), even lying with my head hanging off the edge of the bed! Getting desperate! My appointment with the gp isn’t until the 4th of June, which seems like a lifetime away!

Could try acupuncture. I find it helps as it releases healing endorphins to the area and helps relax muscles by channeling the blood flow to the problem. Could be worth a go