Could this be GPN?

Hello everyone,

I'm a 33 yr old female from the UK. I managed to stumble across this place a while back when I thought I might have Eagle's Syndrome. I got that checked out and everything was normal so been on the trail again.

I've had over 4 years of severe unilateral facial and neck pain - I do also have TMJ disorder from an underdeveloped mandible which seems to complicate the matter. I have the feeling of a 'lump' under my right ear which appears to be the lateral mass of the C1 vertebrae and seems to be where the pain eminates from.

I recently had vestibular testing performed as I suffer with terrible dizziness and vertigo which showed my right ear is partially paralysed but they don't know why.

Having chiropractic adjustments does seem to help but it never last very long and then I go back to symptoms of painful swallowing, numbness on the right side of my throat, pain when I turn my head to the left, trigeminal neuralgia, sharp burning pain down the right side of my neck and into my right arm, stomach problems, dizziness/vertigo, general exhaustion and probably lots of other things I can't remember now (oh yeah, memory problems!).

Eating, chewing and swallowing definitely make it worse though and bringing my lower jaw forwards, away from my neck helps a little. I take 150mg aspirin as this seems to help and I was once put on a course of heparin which also seemed to help a lot but tired me out.


Hello Jeffina. Welcome! Sorry to hear that you are going through so much pain and aggravation. Sounds like you have it pretty bad with all of the different problems at the same time. Just wondering, have you been diagnosed with TN? I see that you have it listed. Could it be the TMJ causing these problems? The reason I ask is because you take aspirin to alleviate the pain and it helps. With GPN, I as many others, are on a much different pain cocktail. Aspirin won't even touch the pain. Unfortunately! Have you gotten a second opinion for the TMJ? Also, the aspirin may be causing the stomach problems. It doesn't work well with our stomachs. :( I hope you get some answers. Sorry for all the questions.


I’m sure you have investigated GN at a number of the available web sites—Here’s one if not:

My symptoms come in “attacks” of excruciating sharp stabbing pain radiating from the back of he left tonsil up into my ear and sometimes down the trachea. They can last about a minute and occur 100s of times a day or just a few and are triggered by swallowing , turning my head, tallking, yawning, breathing hot or cold air, and living in general. I will go into remission and stay there for, sometimes, months.

I have taken Tegretol for years which helps some. It wipes you out when you first start taking it but you get used to it. Some folks can’t tolerated it at all. As Denise said, aspirin doesen't help at all.

I hope you get some answers.

Hi Jeffina, have you actually had an MRI? If you haven't, I would recommend you go to a neurologist and have an MRI done. Part of your issue could be caused from this lump (you haven't stated how big) pressing on the nerve. You really need to find out what this lump is. Is it a solid mass or is it something else. Very important to find this out.

I am in agreeance with Denise's comment about aspirin. With GPN no medications worked for me, and I had all of them thrown at me. The hospital actually said there's nothing more we can do except possible surgery and there was no way I was letting anyone near me who had never seen this before...I have even had my throat sprayed with local anaesthetic many times and the pain would still come. I manage mine now with acupuncture.

Given you mentioned aspirin helps and also heparin helped, these both thin the blood. This brings me back to my question you need to find out what this mass is if you don't know. It may be some kind of blockage, even possibly an anuerysm. I only say this because blood thinners seem to give you some relief.

Personally I would be requesting an MRI of the brain and possibly your cervical spine to rule out what the mass is, and to also look for signs of autoimmune diseases such as multiple sclerosis (MS). Trigeminal neuralgia, vertigo/dizziness, neuropathic pain throughout the body are some of the classic signs associated with MS. I'd be very surprised if they haven't sent you or suggested an MRI to you if your vestibular tests are abnormal. If they haven't suggested this, go to your GP and request to be sent to see someone, preferrably a neurologist that specialises in MS.

Thank you for the replies, I'll try to answer in order:

Denise, I have not been diagnosed with TN officially but the nature of my pain is so similar, the TMJ treatment has helped with that a little. A couple of 'alternative' doctors have suggested TN as a cause but from what I read it does not cover everything I have by a long stretch. I'm on my second TMJ specialist, things are going much better this time. I am sure you are right about the aspirin on my stomach, I have the enteric stuff but it's not good for me - unfortunately I seem to have an extremely low tolerance to side effects and end up being very sick on meds, which in turn makes the symptoms worse!

Bill, this never seems to go away for me although it was more like numbness when it started and it's pain with numbness now. Thanks for the link, I'll check it out. I can feel that swallowing makes it worse and certain movements of my head, turning left or tilting it forwards for example.

Kaz, you are not wrong there, I have been checked for MS several times. The neurologists have basically said let's see what develops. I was told by one oral surgeon the lump was bone and by another doctor it was an enlarged lymph node so I guess it's a combination of the two. I do know my cervical spine is unstable and I have been told my C1 & C2 especially are out of line so I do wonder if it would be to do with that - could a lymph node press on nerves, I was told it was highly unlikely by one doctor that just wanted me on antidepressants (which I refused).

I can't seem to get a doctor to take me seriously as I've had MRIs in the past (looking for MS etc) and they didn't find anything. What would be the recommendations for a specialist in the UK?

Thanks everyone.

It sounds like GPN to me as it is very similar to my own symptoms, although I have hearing loss and tinnitus in my left ear which you don’t mention, and no stomach issues. You mentioned that chiro adjustments do help. Are you seeing an upper cervical chiropractor that is either NUCCA, Atlas-Orthogonal, or Blair technique certified? Only these types of chiros have the advanced training needed to adjust the C1 vertebra. They will take 4-6 xrays, calculate angle and rotation of the C1, and then calculate the needed vector to use to put the C1 back to where it should be. It is painless to adjust. If you are way out of alignment and have been for some time it will take your muscles time to learn to hold the proper adjustment which means you’ll need to see the chiro quite often initially for check-ups. Your nerve pain will quiet as the nerve begins to heal. It took about six weeks of gradually diminishing pain for me to get to pain free.

I lose my adjustment quite easily with any bump to the head but my neuromuscular dentist says that is because my lower palate is too small and positioned too far back (i have an over bite), and have developed TMD as a result. He fitted me with an epi-genetic mouth appliance that I wear 16 hours a day to keep my jaw positioned correctly and helps me hold my C1 alignment much better. It also is slowly expanding my lower palate to give my tongue (and the glosso nervelets) more room.

I hit my head in july (without my mouth appliance in) and lost my adjustment. Pain returned two days later, took about six weeks to get to pain free again(nerves take time to heal). My case , along with nine others, have been written up and accepted for publication in a peer-reviewed medical journal (publication will be late winter), although I am certainly not unique in finding total pain relief from upper cervical treatment (see the forum titled “UCC helped me, how about you?” on the Facial Pain Network (FPN) site.

I take no medications at all. My neurosurgeon who specializes in GPN, says I am a great candidate for MVD ( he can see the compression ofthe GP nerve on my MRI) but says as long as I am pain free from my alternative treatments that he wouldn’t do the surgery (brain surgery is fraught with potential complications).

My neurologist who initially prescribed zombie drug cocktails, now just wants me to take a daily aspirin to thin the blood, as well as another blood thinner (not heparin but something similar that i declined to take). She says the blood thinner and blood pressur meds can help reduce the pressure of the offending artery on the nerve by allowing adjacent small arteries help carry more of the flow.

You mention many things that make me think that your pain could be helped with alternative treatment too. Check the website my AO chiro just put up to see how C1 misalignment can cause facial problems. It’s at Get the book “Striking Back” (amazon) to educate yourself on facial pain, and all possible treatments (medical and alternative). Find a neurosurgeon who specializes in facial pain (MVD) and a certified upper cervical chiro (mine is atlas orthogonal technique which seems to be the most popular among facial pain folks on the FPN website). Find a neuromuscular dentist to evaluate your TMJ disorder.

I hope you can find total pain relief without zombie drugs or surgery soon! Best wishes.


Thanks for your reply, sounds like we have a very similar thing going on. I do have tinnitus on my right side. There is no hearing loss but I feela fullness and pressure in my ear (I did think my hearing was affected but the tests show otherwise). And of course the vestibular problem that side too.

I was having chiro treatments for 3 years, the only thing I could find to help but even they stopped making any difference and I think made things worse longer term because the bones have been in and out of place each month.

My TMJ is caused by the right side of my jaw being quite under-developed (I mean in terms of actual bone size rather than palate size) which I had not known until this year but have had the TMJ problem as long as I can remember. So we are trying to address that at the moment and it is all linked because the problems all come from the same area.

The dentist I am currently seeing works with a team and I am also seeing his chiro, he is not NUCCA but for me that is okay as I have only one adequate internal jugular vein so we have to be extremely careful - he was recommended to me and is taking things very slowly and being cautious. I do react for days after the adjustments and they are really quite mild.

My spine is in quite bad shape (I am also hypermobile) but we have made some progress. We've only been working on the cervical spine for about 3/4 weeks. He started by working from the lumbar up. My problem currently is that because we are going so slowly my pain is actually worse - I am worried we are just making the problem worse, if it is a blood vessel or the 'lump' (for want of a better word) compressing it then ultimately will it help?

That's very interesting about your neuro suggesting apsirin - have you tried it? I found the heparin gave me great relief initially but it made me feel weird and exhausted and I couldn't put up with the injections either. I seem to get along with 150mg - it doesn't make a great deal off difference but I do notice it when I stop it.

I find it encouraging that you are getting relief from your chiro help though. My previous adjustments never held but I am told that correcting the jaw is going to help with that and the chiro is pleased with my progress. It's hard going though.

Do you get light-headed? Do you think/know if the vagus nerve is involved too? I do find it affects my right arm too.

Hi Jeffina,

I did post this on the Eagle's Syndrome site a couple of months ago - it's quite a comprehensive article, and there just may be something helpful in there. I note that the diagnosis of Eagle's syndrome has been eliminated in your case. Nevertheless, your symptoms just do sound so typical. What sort of scans did you have? And is it worth a further investigation?

All the best - you seem to be having a pretty rough time at present ....!


I used to get light headed quite often, but not since the upper cervical alignments. I had that ear fullness/pressure too… I do take the aspirin daily.

The vagus nerve can easily be involved. I have involvement with the occipital nerve and had trigger points from touch on the skull, as well as wind or cold on my ear.

I highly suggest taking the time to read the “UCC helped me, how about you?” forum (moderated by Maggie O) on the FPN website regarding types of chiros. Sounds like you have confidence in your chiro but without the advanced training of a NUCCA or AO certification he wouldn’t be able to align your C1 correctly and could make it worse. An AO or NUCCA doc ONLY works on the C1…anything else that is misaligned will come into alignment on its own if the C1 is aligned. It takes xrays and very precise measurements using those xrays to determine the correct vector and force to be applied to make the correction. I had scoliosis, very poor posture, and low back pain (for 20 years) which dissapeared immediately after the first c1 adjustment. My dizziness and light headedness dissapeared immediately too. The nerve pain took longer to go away because the nerve and myelin sheath take time to heal. My tinnitus is better but still with me. My neuromuscular dentist confers with my AO doc to coordinate treatment.

There aren’t a lot of AO or NUCCA docs but they are scattered all over the world and there are some in the UK. Check the Atlas Orthogonal association website or the listings on the FPN website to find one near you. Maggie O. on the FPN website will search one out close to you if you ask her to.


Cybra, thanks for the article, seems to be more detailed than others I have read. I had a panoramic dental x-ray taken to rule out Eagle's. In fact my right styloid couldn't be seen in the x-ray at all. I think it was 'hiding' behind the edge of the C1 as I have since had a CT scan and it is clearly visable but perfectly normal length.

Sherie, thanks, I'll look into that forum now. The first dentist I worked with for my TMJ also practised Atlasprofilax but we didn't get to that part as the TMJ treatment caused me awful problems so I stopped it short. I do trust the current chiro, he speaks a lot of sense to me and is always able to answers my questions about various aspects of my treatment but I do realise it would be better to have just the atlas treated from what I read.

He did tell me that we would be working much slower than he normally would because of the jugular (and because of my structural abnormalities) and the initial sessions were to see how my body responded and held the adjustments (better than he hoped as it turned out which was a bonus). He also noticed I was missing some sort of ligament on my scan too which no one else had picked up on, thankfully. After my experiences with chiros in the past I told myself I would never go back to one but I do trust him - plus he also told me he would not have touched my case had I not been attending to the TMJ which was another positive sign.

I do also believe that realigning the atlas on it's own would pull everything into place as I know that when it's been realigned I feel the effect through-out my body but in order to work with the current dentist I have to work with his team. So far it's working out well but for my fears as mentioned.

The adjustments he makes are all with his hands only and he's more about using the muscles and ligaments surrounding the cervical spine to coax it back into place, which I agreed with as I feel anything more manipulative would make things worse. I can feel some things are better, I can lay on my back for a while and my left side now without feeling like my neck is 'coming apart' but the atlas is the biggie.

I have occipital pain too, mine is from the C2 which is slowly coming back into line now and that pain has reduced a little. I wish I could just fast forward a few more weeks to see if I am backing the right horse.

Hi Jeffina,

You should be asking your GP about this lump if you've had an MRI and also x-rays as they can tell whether it is bone or not from those. An ultrasound will determine if it is a lymph node. I have to ask do you suffer from dry mouth, dry throat and have to clear it a lot? Or very dry eyes? Mouth ulcers, nasal ulcers or anything like that? I ask this because GPN can also be caused from what's called Sjogren's syndrome because the parotid glands swell up. With Sjogren's you can get terrible pain in the ears and/or the mastoid bone behind the ear. If any of this sounds familiar ask your GP to test your bloods for SSA, SSB, ANA and DNA tests.

These are all different antibody tests. These blood tests only detect 40% of cases but one needs them done if Sjogren's or other autoimmune diseases are suspected. The most reliable test is the eye test - Schirmers - this is done my an opthamologist. Given you have this lump with no explanation, I would request to have these tests done in order to rule this out.

Out of curiosity what did your MRI reveal, as in any lesions? Also if they suspected MS then Sjogren's can also fit into the picture. Sometimes they do the blood tests and because they are neg don't say anything or discontinue to look down that path because patients tend not to mention other symptoms they may be experiencing because they don't think it's related to neurology.

Example: how many patients would tell a neurologist they have excessive dry eyes, or a dry throat etc. Not many, because they would be telling their GP and/or ears nose throat specialist. Then if they were to see an ENT wouldn't be telling them about other certain symptoms they think aren't related to their area of expertise. This is why sometimes it is very hard to get a diganosis because we don't realise all the odd symptoms can actually be related, and no health professional seems to ask the right questions...

Hi Kaz,

Thanks for the reply - as it happens I have been tested for Sjogren's Syndrome by a very lovely rheumatologist that was also testing me for Antiphospholipid Syndrome (he even did the horrid test of sticking blotting paper into the lower eyelids!).

He was the doctor that trialled me on heparin as even though my bloods showed negative for APS I had features of it and I also have Hashimoto's so there was a strong possibility there. Thankfully I don't really have any other features of Sjogren's, but I do get sore eyes a lot.

My MRIs have always been clean, apart from showing I have one jugular that is barely there on the right. I have had a lumbar puncture too, all clean. I've also been told I have CCSVI but I really question that as I was tested early on and I think mine jugular problems are congenital rather than an abnormal stenosis that has occured later on - never know though! I chose not to have treatment for that as I think it still needs more research and I was not convinced of the validity at the time.

I have mentioned the lump to my GPs before, they feel my neck, say it's a lymph node and nothing to worry about. When I had my thyroid ultrasound I asked him to check the lymph node also. It's enlarged but normal.

Now I also know my atlas is rotated and more recently we think the lump is the bone - but maybe it could be both?? Hence such a problem?

Who would I see for this, a neurosurgeon? I was checked for Thoracic Outlet by a neurosurgeon which was all normal (I do have some elongation of the C7 but apparently not enough to be a problem) and I kept telling him the pain was higher up but as I had previously had brain MRIs he kinda ignored me.

Yes, Sjogren's is not pretty... I know as I have both MS and Sjogren's!! hence why I asked had you been tested given some of your symptoms.

I'd be inclined to see an orthopaedic surgeon for an opinion. I would ask their opinion on the Atlas Orthogonal procedure to see if that is something that may be beneficial. I am not sure what is involved with that but I personally would not go near manual manipulation with a problem like that, too risky! I am not a real fan of chiropractors, although today their techniques are a lot more subtle compared to years ago, but I still would not go to one.

In regards to CCSVI, I am not a fan of this procedure.In normal CCSVI the vein is flattened, but if you have a congenital defect it may show as abnormal in structure. I'm not a medical professional, this is just my thoughts given I have done a bit of research into CCSVI over the years. I would imagine that if you have constriction in this area regardless of whether it is a structural defect or flattening that both aspirin and heparin would be beneficial because they thin the viscosity of the blood.

Yes, neurosurgeons like all specialists can be difficult to deal with as many rarely really listen to the patient! They just look for evidence of pain, and if they cannot see this they will assume it is one's head! When you find one that listens to you, stick with them ;-)

I was told that it was all in my head (literally it This was by a neurosurgeon. I could not walk and was having other difficulties. The orthopaedic surgeon I was seeing for an opinion sent me for a spine MRI.The MRI showed a few syrinxes in my cervical area. I was referred to a neurosurgeon but he dismissed these as a cause and told me it was all in my head; the pain, the inability to walk properly, the strange sensations in my feet, the inability to lift my arms, and other weird symptoms etc.

I went to another neurosurgeon for a second opinion on the syrinxes and when he examined me and went through my symptoms, he stated that I needed to see a particular neurologist who specialises in MS. He stated that I would need the syrinxes monitored but believed they weren't the underlying cause. I saw this neurologist and was put through a barrage of tests including MRI's every 3 months as he suspected MS. Only had one lesion at that time but over a short time more appeared which coincided with further symptoms which confirmed the diagnosis. So it pays to obtain more opinions and then when you learn what is actually wrong, find a specialist who will listen to you (very important!) to manage and look after you.

Hi Kaz,

Ah, that's why you know so much! I must say everyone on this forum is very well informed.

Yes for a long time I was convinced I must have MS and when my symptoms first started the GP I saw at the time thought the same.

I agree with you re the whole subject of CCSVI. I think more research needs doing on it and I have been watching it closely for the past couple of years. When I was first told I had it I was all fired up ready to have the op then the place that scanned me woudn't do it as I didn't have an MS diagnosis. I think they did me a favour now looking back although it was very distressing at the time.

Thanks for the opinion on the orthopaedic surgeon - this is not a specialist I had considered up to this point so I will start researching for the UK.

I am not a fan of chiropractors either but I do trust the one I am working with currently, he seems to be a cut above in many ways ... but I would still prefer the 'one stop' fix the atlas approach. His techniques are quite different to other chiros I've seen and he was the one that told me I am lucky something more serious has not happened to me before now in light of the problems I have that he's found. I can believe that's true.

To be honest I absolutely hate the thought of anyone touching my neck or being anywhere near it. I was having some osteo work before this nightmare began for tight shoulders and I am sure that was a large factor in what happened and my current situation. Never again. I since had one chiro 'crack' my neck quite hard (I didn't know she was about to do it) and my symptoms were extremely bad for a week afterwards.

What are your thoughts on the TMJ/Atlas/MS link? I presume you've been checked for Chiari Malformation also?

I don't buy into that link of TMJ/Atlas/MS simply because of experience. I know for a fact I had nothing wrong with my TMJ or atlas when my first MS symptoms occurred. I say this confidently as I was checked quite thoroughly back in those days (prior to MRI's) by x-rays and CT scans for both brain and spine. I also don't buy into it because of the recent discovery (in 2009 from memory) of genes that are involved in MS that are also specific in other autoimmune diseases such as Lupus, Rheumatoid Arthritis etc. Prior to this discovery it was always hypothesised that MS was an autoimmune disease, now they know that it is.

This also was another reason why I am sceptical in regards to CCSVI. I believe there are people who may well experience MS like symptoms because of lack of blood flow to the brain but not necessarily have MS. I can appreciate how stenting would improve symptoms in these patients. But in my opinion, given the evidence that is currently available, CCSVI is not a cause of MS. It may well be symptomatic for some, possibly causing more fatigue issues etc. but not causal. Studies to date have shown there is no higher incidence of CCSVI in people with MS, than people without.I actually, out of curiousity to see if my thoughts were correct, had the test done twice. The first time when this theory first came about, and the second recently and I have no issues with my jugular veins. I had the tests done more so for curiousity and ended up proving to myself that my sceptism was valid ;-)

However, even though the incident rate is no higher in people with MS, than without MS Societies are pumping dollars into research for trials. Personally I feel it is because of pressure from people with MS. We all are desperate for a cure and many jump on the band wagon of whatever is said to be the next best thing or possible cure, instead of sitting back a little while to see what transpires. I believe the research is being undertaken moreso to put an end to this hype of CCSVI being a cure, as to date I have not read any MS researchers or specialists stating this could be a possible cure! I think they want to run trials, then state here is the evidence and put it to bed.

In regards to Chiari Malformation, that was ruled out when I had my first MRI.

thanks for sharing, great post!

Hi Kaz,

That's interesting as so much of what I read recently links them together but then again it all depends on where you look doesn't it? The first dentist I saw treatment misaligned jaws, even when the patient doesn't realise they are or it doesn't look like they are - I still can't figure that one out myself.

I understood MS wasn't confirmed as an autoimmune disease but I don't actually know enough about the science behind diagnosis. I do think it could be caused from different things though, I am sure some people are diagnosed with it when they have something else and vice versa. Probably brings us back to CCSVI etc.

There does seem to be a massive movement within the MS world in the past few years to look for cures or causes. No bad thing but then some people end up being guinea pigs along the way.

In 2009 two scientisis, an Aussie and New Zealander, as part of the ANZgene project discovered for the first time in MS history the link to genetic suseptibility and the environment (Vit D). The finding also proved the autoimmunity issue as the same genes are involved in the other autoimmune diseases I mentioned earlier. Previously to this discovery MS was only thought to be autoimmune but they now know it is.

Below are some snippets from one of my presentations.

MS is a complex disease given there are several pathophysiological processes which are still unclear.

What we do know: An interaction between anti-myelin T cells and antigen-presenting glial cells is a crucial step in the cascade of immune events that lead to the inflammatory lesions in MS.

→ T cells become auto-reactive, cross the blood-brain barrier, and attack the myelin sheath

→ Leads to loss of myelin sheath

→ Plaques (scars) develop from proliferation of oligodendrocytes (gliosis)

→ Slowing down or stopping of impulse conduction

→ During repeated attacks fewer effective re-myelination occurs

→ This results in axonal damage which is irreversible

Lesions characteristically involve the white matter, especially around the periventicular regions, optic nerves, brainstem, cerebellum, and spinal cord.

2007 – An Australian scientist discovered the MS susceptibility gene IL-7Ra.

2009 - Australian and New Zealand researchers, as part of MS Australia’s ANZ gene research program, discovered two new genes. This ground breaking discovery, revealed genetic susceptibility as well as links between other autoimmune diseases such as: Diabetes 1, Rheumatoid arthritis, and Graves disease. It also highlighted Vitamin D as a possible causal link. It was the first discovery that demonstrated a link with environmental factors.

2011 – Further research was undertaken in regard to gene CYP27B1 which is related to Vitamin D. This research concluded there is a strong connection.

2012 - The discovery of the link to Vitamin D being a probable cause, and which is also implicated in the other autoimmune diseases mentioned, has led the way to new research. World-first clinical trials are underway using Vitamin D as a prevention.

In regards to looking for cures, we definitely need one! I am certainly not suggesting that people wanting a cure is wrong. My point is more so directed at pharmacuetical companies and their 'clinical trials'. Because of pressure from the community too many properly tested drugs are making into onto the market and giving people false hope. None of these drugs really work effectively long term, they are what's known as the CRAB drugs. There are newer drugs that have made it to the marketplace in recent years - one is tysabri. It was actually taken off the market in the US for a period of time due to a few deaths.

It causes what is known as PML (progressive multifocal leukoencephalitis) in some people. PML is a rare and usually fatal viral disease characterised by progressive damage or inflammation of the white matter. The drug co managed to get this back on the market with a black label warning which most patients really aren't informed as to the dangers. They are just so desperate to find something that may work that they will often go with whatever the neurologist suggests or ask for whatever they have heard is new. Effectively in regards to tysabri all these people now are human guinea pigs! I could go on and write a lot more on this subject but I won't as got to be somewhere shortly. The latest is, however, that people who are JC positive (a lot are, and people can become positive while on it) and take tysabri are at high risk of developing PML after 2 years of treatment. So why put people on it in the first place... They also know that coming off tysabri causes aggressive rebound attacks.

But back to DMD's (disease modifying drug) - interferon. In 1993 interferon beta 1b was the first DMD to be approved by the US. It was claimed to reduce severity and frequency of MS attacks. In 1996 interferon beta 1a was also approved claiming the same. In 2012 it was found that interferon beta b is ineffective for the treatment of MS. In a nutshell it the overall effect was it does very little compared to no medication. This was published in JAMA around July from memory.

Previous to this scientists had found that some people on interferons diease activity worsened considerably. They believe this is because of some kind of genetics issue and are trying to formulate a blood test to determine who would benefit and who wouldn't. But in all honesty why prescribe the drug when what they claim doesn't appear to be the case?!

In regards to current research Australian scientists found a specific gene that appears to halt the progression of MS in model MS. These findings were published in Oxford's Brain journal earlier this year.

A team of biologists at the University of Portsmouth have been awarded £600,000 to research the impact on the ageing of the brain and cognitive decline.

The study will focus on a protein known as Kir4.1 which is a key element in controlling special cells in the brain and spinal cord which form myelin, a substance which insulates the brain’s wiring. The study will take 3 years to complete and may help MS and Alzeimer sufferers.

Unfortunately we need human guinea pigs, but it should not be at the expense of those who do not want to be part of a human trial, and basically because a lot of the data publshed from trials is bias and there is a huge push from the MS community, these drugs get through the system a lot more quickly without long term efficacy being known. Then years later we see the damage...

There needs to be stronger constraints on human trials. All data, whether positive or negative, needs to be published. Not just selective data which is what happens more often than not. It is all about making profit for the shareholders of these lrage pharmceutical companies, rather than about what is right for the person with the disease!

Hi Kaz,

Sorry for slow reply, been knocked out with pain recently. I find it travels down my arm into my hand too. Do you ever find it chases around?

Thanks for your thoughts on MS - you clearly know your subject very well.

Hi Jeffina,

No, GPN doesn't move around like that. It is very specific where it attacks because of the nerve location. What it sounds like is brachial neuralgia, that is if you are meaning the pain starts from your neck and goes down your arm? If it starts lower in your arm it could be something like carpel tunnel sydrome.

One can get all sorts of neuropathy and obviously you are getting some other type of neuropathic pain now. For it to travel down your arm may be indicate possible pinched nerve somewhere. Either from a disc in your neck (depends on where this new pain is starting, or constriction of the medial nerves in your arm). These are just possibilities and the main reasons I can think of. You should go and see a neuro and have this new checked out. You may need to have nerve conduction tests plus some further scans.

I highly recommend acupuncture though to alleviate some pain!