Help please do I really have trigeminal neuralgia

Brain and nerves
1

Hello I am looking for some advice please.. since August I have been experiencing leg pain, back pain and numbness down my right side (numbness is not always there but the leg pain is)

On one occasion I ended up in A&E as I lost the feeling in my right leg and also numbness and tingling in right side of my face. I have been diagnosed with a bulging disc as a result of my symptoms. I have had an x-ray which showed an extra vertebrae but nothing else. I have been referred for physiotherapy.

I am now having electric shock type pain in my right cheek mainly under the eye area. I also experience a funny sensation in my left eye, almost like a crawling sensation. My GP has said his is trigeminal neuralgia which was mentioned to me in 2014 when I seen a GP about similar tingling in my face. I have asked if I can have an MRI scan and my GP has said she can no longer  refer,  also offered me no medication for trigeminal neuralgia.

Given all of the above should I be referred for an MRI scan? When I seen an extended scope practitioner recently about this he said they cannot waste resources sending me for an MRI and  this would only happen if physio treatment does not help with my leg and back pain.

Should I be having an MRI? I am concerned that the tingling and electric shock sensations are something more sinister and I am worried.

Could someone please advice, it would be much appreciated. Also I am deficient in vit d and my blood pressure has been high last 5 times it was taken

Many thanks

2

I would go see a neurologist and see what all he thinks you might have at least for the face pain maybe i dont know anything about the leg stuff

3

Thank for you for your advice. I think I will do that

4

your leg&back pain seem alot like my pain. my fascha is swollen in my L3,4&5 vetabrae. my pain starts in my low back and travels down my left hip down to my knee. sometims if i sleep on my left side all night i wak up with my bog  toe numb. dunno what that's about.you say you have a extra vertabrae is there extra fascha there that might be swollen n pressing on a nerve? i think you should definitely see a neurologist about those facial pains.

5

Given all your symptoms I am quite shocked that nobody in the Health profession has reffered you to a specialist for an MRI. An MRI is much better than an xray at giving information on the cause of those symptoms. I would seek out a Neurologist for sure. 

Interestingly My symptoms started with pins and needles in left side of face and also had some weird pins and needles and pains in my arm about the same time. Because my blood tests revealed an acute infectionThe hospital  ordered an MRI of the brain and neck.

That was two years ago, now i have burning and spasm like pain in cheek, eye, nose area and my diagnosis is Atypical TN for that.

I am on Nortryptiline (for last year or so) and now taking Tegretol as well which is easing the intense pains quite nicely.

Did all your symptoms happen all at once or abruptly?

6

I was told the bulge on my disc may be pressing on a nerve? I'm not sure though. No one has mentioned an extra fasca, is this something I should ask about? I am definitely going to get an appointment with a neurologist. Thank you for your comment. 

7

I am also shocked I have not been referred to a specialist. When I asked about an MRI I was told that the NHS do not want to waste resources and I will only have a scan if physio does not help with my leg pain.

The pain in my legs started quite quickly and is constant. Then about a week or so later my right side went numb and that's when I went to A&E. the hospital staff I seen were worried I had a stroke as my blood pressure was very high but they still didn't do an MRI. I was worried as my mum has had a stroke.

The facial pain has been on and off for sometime but not always there. It has become more noticeable in recent weeks and feels like a different sensation than before. As I have had a weird sensation in my left eye my gp advised I see my optician which I am doing this week. 

I am am frustrated by the whole thing and feel like by gp is not taking it seriously so I have booked an appt to see another gp. I will go privately to see an neurologist if I have to.

do you know could this be linked to low vit d levels? I would feel a lot better if I had an MRI, just to make sure.

thanks

8

Also can I ask what infection did you have and what caused it? 

9

hi again, i am so sorry i misspelled fascha, its fasciam and i honestly cant remember how it was diagnosed i've had both back x-rays as well as mri's. i was told that the fascia is what the nerves in the spinal column rest on an if they are inflamed then it leaves less space for the nerve to occupy. how that differs from a bulging disc i dunno. i would def ask itt can't hurt. i picked this off the mayo clinic websiite..

Disks act as cushions between the vertebrae in your spine. They're composed of an outer layer of tough cartilage that surrounds softer cartilage in the center. It may help to think of them as miniature jelly doughnuts, exactly the right size to fit between your vertebrae.

Disks show signs of wear and tear with age. Over time, disks dehydrate and their cartilage stiffens. These changes can cause the outer layer of the disk to bulge out fairly evenly all the way around its circumference — so it looks a little like a hamburger that's too big for its bun.

A bulging disk doesn't always affect the entire perimeter of a disk, but at least a quarter if not half of the disk's circumference is usually affected. Only the outer layer of tough cartilage is involved.

A herniated disk, on the other hand, results when a crack in the tough outer layer of cartilage allows some of the softer inner cartilage to protrude out of the disk. Herniated disks are also called ruptured disks or slipped disks, although the whole disk does not rupture or slip. Only the small area of the crack is affected.

Compared with a bulging disk, a herniated disk is more likely to cause pain because it generally protrudes farther and is more likely to irritate nerve roots. The irritation can be from compression of the nerve or, much more commonly, the herniation causes a painful inflammation of the nerve root.

If an imaging test indicates that you have a herniated disk, that disk might not be the cause of your back pain. Many people have MRI evidence of herniated disks and have no back pain at all.

With

Randy A. Shelerud, M.D.

HOPE THIS HELPS!

10

LORDY, it's fascia!

misspelled again

11

lord, it's been a long day, it's not fascia even! it's facet, i swear this time that's what its called.......

Nearly every flexible or movable level of the spine (with the exception of the very top vertebra) is comprised of the same elements, including:

Vertebral body, the bony building blocks of the spine

Facet joint, small stabilizing joints located between and behind adjacent vertebrae

Intervertebral disc, which provides a cushion between each of the vertebral bodies and binds them together

Other than supporting the organs of the entire body, the axial (midline) skeleton's discs allow rhythmic motions required by humans to walk, run, swim, and perform other regular movements. Additionally, the spine (so named from the bony plates that extend backwards from the vertebrae) provides a bony protection for the spinal cord and emerging nerves.

Facet Joints and Flexibility

To prevent excessive motion, over-twisting, or toppling over, the segments of the spine are stabilized by a number of structures that nonetheless preserve the flexibility needed to turn, look around and get around.

The facet joints, or joints with "small faces" are found at every spinal level (except at the top level) and provide about 20% of the torsional (twisting) stability in the neck and low back. The vertebrae of the chest area are normally far less mobile and permit a small amount of forward/backward and some side bending, and very little twisting.Article continues belowIn the low back, forward-backward bending is limited to about 12 degrees and lateral (to the side) bending to about 5 degrees. Lower back rotation is limited to only about 2 degrees per segment, since excessive rotation could lead to spinal cord or nerve damage.

At each given spinal level the angle of the facets varies from more parallel to more perpendicular, relative to a plane running through the body from front to back. Each facet joint is positioned at each level to provide the needed limits to motion, especially to rotation and to prevent forward slipping (spondylolisthesis) of that vertebra over the one below.

Each upper half of the paired facet joints are attached on both sides on the backside of each vertebra, near its side limits, then extend downward. These faces project forward or towards the side. The other halves of the joints arise on the vertebra below then project upwards, facing backward or towards the midline to engage the downward faces of the upper facet halves.

12

I think it's a good idea to change your gp. I have found the best doctors tend to be caring, thorough, listen well and work hard. Not necessarily be fountains of knowledge. Sometimes you need to be the squeaky wheel.

If you have insurance I would use it and go private then they will do an MRI as public money is not the issue anymore.

an brain and spine MRI will at least rule out those serious causes like stroke, MS etc. If there are compressions it will be seen better.

My case is peculiar and not the standard Tn one.

I had high eosinophils (in the acute range for a while) and I got tested for many things.(causes of eosinophils are parasites, allergic, toxins, some viruses, but not usually bacterial.

anyway my regular gp tested me for legionnaires and it came back positive. They then have to do another two tests to confirm it which all came back positive. So it seems I may have had a wonky immune system or had a couple things my immune system was fighting. It's not clear but I certainly felt very ill and could hardly walk up stairs, felt spaced out and had severe stabbing muscle pain plus the pins and needles.

sorry for the long story an it's probably no help to you.

let us know how you get on

 

13

Hello,thank you so much for taking the time to reply and all the info you provided! 

14

thank you your reply is very helpful. It sounds like you were very unwell I hope your feeling better.

i agree about the gp, I have an appointment next week to see another one. My leg pain is bothersome but the sensations in my face are a worry!! It's not not to think too much into it all. I don't have health insurance but I'm happy to pay if it means I get answers. Did you ask for all those tests or did a consultant arrange them? 

I also find it hard to describe these sensations. I have had pins and needles in my right side but the sensations in my face are more like electric shocks. 

Hopefully I will find out what it is. 

15

Thanks for your reply. Yes I am much better now. My sickness was over two years ago but the left side of my face is persisting.

if you find a new GP who is good maybe they will push your case so that you can get an mri through public health services. Of course if you decide to pay it is up to you.

the electric shocks sound like TN to me but I would imagine the mri will give you clues as to the cause.

to answer your question when I was in hospital two plus years ago the doctors in the hospital ordered tests for various things. They were very good that way. However I had to go to back to hospital again 8 weeks after my pins and needles etc started and that's when they did the MRI and Ct scans.

I did end up going private to a Neurologist as we had insurance fortunately.

its been two years before it became clear to the Neurologist that it is Atypical

Trigeminal Neuralgia.

i get a type of near constant burning sensation which goes from moderate to awful and the I get intense bouts of pain that run from an upper tooth upward and then stabbing, spasm like and sharp pains in the cheek, side of nose bottom of eye. 

Lets hope that you can get seen very soon by a Neurologist and they will order an MRI.

please keep us all informed as it's difficult to deal with on your own.

Take care.

 

16

Hello I just wanted to post an update. I went to the optician today, talked through all my symptoms and she was concerned I have not been referred to a neurologist or had an MRI. She is writing to my gp and asking for an urgent referral to a neurologist which I am pleased about. So fingers crossed I might get an appt soon.

 

17

Wonderful news!

I am glad you came across her.

Keep us posted

 

18

Hi Hil

Assume you're in the U.K. and you've been wanting your GP to refer you to a neurologist in hospital. Even if he does recommend you to see one, it could be a while before you get an appointment. I don't have private health insurance but was able to accelerate things considerably by asking my GP to request that I see the consultant privately. It's about £200 for the consultation and they'll do a good job and report back to your GP very quickly. I think it was money well spent.

My NHS appointment was about 2-3 months later and I didn't want to wait that long. If you need MRI then your consultant will fix that quickly, and on the NHS.

Maybe a way forward for you?

Keep in touch with us all

Cheers

Big D

19

Hi army183,

thanks for your comment. 

I seen my gp this morning and he has referred me privately to neurologist. I have already booked my appt for the 28th December! So I'm pleased about that. I hope I can have an MRI scan soon. 

Can I ask what were your symptoms? I am a bit concerned about something as I missed some points in vision field test at the opticians and today with gp also. He said it was only in one eye so not to worry too much about this! The gp I seen today was so thorough, I've never had a GP appt like it before!  It is a worry when you don't know what's going on. 

How is long did you have to wait for your MRI?

thanks Hil 

 

20

Hi Hil

My symptoms are all to do with stabbing pains in the maxilla region of the Trigeminal nerve for some years, only control is large doses of carbamazepine - but get signicant breakthroughs.

I saw the consultant privately less than 2 weeks after referral by GP. Consultant referred for MRI within a month. The picture was "classic" with a branch of cerebellar artery significantly compressing my nerve. Reviewed the MRI scans and all options available with risks and benefits fully explained. I'm sure your neurosurgeon will do the same.

Cheers

Big D