A swab would be the easiest way, of course, I don’t understand why they’re not doing that? I was going to suggest seeing a nurse otherwise, the nurses at our medical centre are far more helpful than the GPs, but it sounds like yours isn’t? Would medical insurance cover you an A&E or GP visit while you’re in France otherwise to get swabbed? At least if you could find out the bacteria causing the repeat infections you could get a specific antibiotic & that might sort it longer term…I feel for you with the bad stomach on top of this, sending you a hug, not much of a holiday 
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I shall keep praying for a medical breakthrough for you @Mcwelly. This is certainly the toughest of times for you. I hope you’re able to enjoy your time in France to the greatest degree possible w/ your symptoms being what they are. Perhaps just getting away will help you have some recovery.
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Good morning @Isaiah_40_31 and all.
Quick update: headed off to France feeling more and more ill. Headaches so bad I couldn’t function annd I was seeing black patches in my vision, like tarmac lifting up from the road! and ended seeing a gp there. He thought I might have GCA and started me on 40 mgs prednisone for 10 days. We came home after a week as it was impossible to holiday. GP took me seriously, immediately referred to rheumatologist and steroids decreased to 35 mgs. Rheumatologist thought “unlikely” - remember that word as it features in nearly every consultation I seem to get - that I have GCA and has me weaning off of the steroids with the proviso to go to AE if I get symptoms of stroke, continuing spikes of hypertension and eye haemorrhages (I had shown her the BP readings and pics of my sub conjunctival haemorrhages which happen spontaneously. She did say tests were not specific for GCA. Anyway, I do feel better! Night sweats have stopped and a lot of the pain. The occipital pain and pulling has not benefitted from steroids however.
Meanwhile, await another sialogram re recurring cheek swelling and infections.
MRI showed inflammation high up in c spine with rest of c spine degenerative changes. What is the difference? I’ve had no appt for this and nothing reported back to me.
So the unlikelies: unlikely to be related, unlikely to be this that or the other. I am back on PPIs as still have reflux and this GORD a culprit for throat and voice symptoms but does not explain everything.
Next step - c spine rabbit hole I guess?
Happy weekend all xx
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I’m so sorry that you had to abandon your holiday, & still haven’t got any proper answers, but good that the steroids have helped you. I don’t know much about GCA, but it sounds as if there are diagnostic tests they can do to confirm it according to the NHS website- ultrasound and biopsy - did they do anything like that? If it is GCA, then it makes sense that it’s improved with steroids…hopefully you won’t get those symptoms again, but if you do then maybe push for a definitive answer rather than an unlikely?
Temporal arteritis - NHS (www.nhs.uk)
It’s crazy that they can report on inflammation high in the C spine but then leave you hanging with no plan for diagnosis or treatment! Hopefully the steroids will settle that down too…I really feel for you with how badly you’ve been let down by the UK medical profession, sending you hugs & praying you’ll get some answers
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Thank you @ Jules, I know people try their best etc but the dots just don’t add up! I had USS but not biopsy so will see what happens when I stop steroids completely. Funny enough I get some slight relief using an anti inflammatory throat spray along with topical Otomise ear spray. This is usually for otitis externa which I don’t have but the steroid and/or neomycin have soothed.
Xx
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@Mcwelly - The fact that the various anti-inflammatory medications you’re using help calm your symptoms clearly points to inflammation as being the cause, but what is causing the inflammation/irritation to your nerves & vascular tissues? I hope that someone you see for medical help will be curious enough to want to seek out the cause & not just treat out the symptoms! Push for that if you can.
I do hope the relief from the oral steroids is prolonged. It’s sad you felt so terrible you couldn’t finish your wonderful trip to France.
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Steroids stopped, face/throat flared up again. Headaches unbearable. Nausea, vomiting. Dentist confirmed not dental yet again and suspects infection in masticator space. Asked gp for BT and ABs. Refused. Night sweats back with a vengeance. Taking an unauthorised 6 day course of co amoxclav. Headaches better but jaw pain still present. Meanwhile my referral to MSK for c spine wiped from system without ever being seen. Tried to tell GP about new onset bouts of urinary incontinence and she looked blankly at me and then mentioned pelvic floor exercises.
At that point I got up and walked out. Oh, and a miraculous new diagnosis has appeared on my notes: fibromyalgia-?who diagnosed this? How? What? Symptoms limited to head area and not at all muscular. Fibromyalgia does not cause pus in the throat does it?
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Oh no, this is just beyond ridiculous for you! I don’t know what to suggest really, apart from trying again with the MSK referral…Can you see a different GP, it’s just crazy that this infection keeps re-occurring , otherwise is your dentist any help? My ES was diagnosed because my dentist referred me to the max-fac clinic for tooth, jaw & salivary gland pain. Your dentist sounds helpful, would he be able to refer you to the hospital to get this investigated properly?
If you’re not able to get anywhere with these suggestions, I’d be tempted to make a complaint about your GP not referring you for tests, and ask to see your notes to find out about the Fibro diagnosis…can you bring someone with you to any appointments to support you?
I’m so sorry that you’re having this battle, & all I can do is send you a hug and keep praying for you
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Thank you @Jules - on record now as I’ve sent pics taken by dentist to GP showing the problem and another I took of pus. I’m speaking to ENT consultant tomorrow and want an email address to send pics there too. Nobody liaises with dentist or speaks to them except me! It’s like they are kept out of the loop even though dentists can and do diagnose many serious conditions. MSK seem to be a law unto themselves and the criteria being set for getting an appointment is??? The spinal centre do not take referrals directly from GPs who can only refer through MSK!
I’ve complained about the fibro diagnosis and where it came from! Xx
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The dreaded fibromyalgia diagnosis. I got that stuck in my account because I have pain that has persisted past treatment for my autoimmune arthritis.
I think they use that when they get frustrated that somebody is not all better. Sometimes it is true, but it most certainly does not sound true. In your case. You are complaining a specific symptoms that are impossible to be fibromyalgia related
Sharon from ModSuppport
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Oh yes! It has become the new ME!!
They shoe horn all the symptoms into one size fits all diagnosis even though it doesn’t really fit and as there is no real test for fibro, it’s a convenient label that pleases them more than “we don’t know”!!
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Definitely, I agree! It wouldn’t be so bad if your symptoms even fit! I don’t know much about the MSK referrals system, just that we’ve had a few members have scans looked at by them & they’ve spotted things which other radiologists missed, which is why we have suggested them sometimes. I’m sorry that you’re having a problem getting anywhere with them, maybe they’ve got more well known & busy?
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As GP can’t refer patients directly to spinal or rheumatology now, everyone must go through MSK and be processed! Usually months of waiting and physio before progressing to a proper waiting list. There will be no appointments (in our case for at least a year). Then your referral will disappear from the app and you start again. Also they only answer phone calls till 12.30 mon-Fri do the chance of getting through is practically nil. However I was cheerfully told “we have lots of 80 and 90 year olds on our waiting list". That did not fill me with hope!
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Right, sorry there’s crossed wires there, I was thinking you meant MSK Neurology, run by Kjetil Larsen to get your scans re-evaulated!
Home - MSK Neurology
Makes sense the trouble you’re having if it’s the NHS 
Seems to work slightly better in our area, although it varies what help you get with the different physios, hubby has gone back again for his neck & shoulder, saw a new physio who was appalled at what the firs one had done, or rather not done!
Just so frustrating…
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Ahh, yes I see now - MSK in the uk is a gateway or barrier to getting a consultant opinion! Has anyone had experience with a company called Mediphany? They are radiologists based in us and will review and compare scans. They stress they are not there to diagnose but to help you make sense of your scans. I will try them if I can actually manage to upload anything! What I know is that scans will only report what they’ve been asked to look for and incidental findings are not always reported and other stuff is missed.
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I can’t speak to anything you are going through except the following as it pertains to the Rheumatologist. In the United States you can easily go to another doctor in the same field if you don’t like what happened at the first one. I know it probably isn’t the same way in UK. My first one completely missed an issue because he didn’t do enough testing. The second one listened to me and did a better job of testing and found two tests that tested positive. So I got an appointment at the Dry Eye Clinic. Some of you may find this kind of thing at larger hospitals. This was at Indiana University in Indianapolis IN.
They did some tests I have never had before even at the ophthalmologist. They were very thorough. Of course, Dr. had never heard of Eagle Syndrome. At that point I did not know about my jugular issue which I will bring up in my next appointment.
One of the tests that you can get done if you can find it is a rapid test MMP-9. It is a marker for inflammation. They stick something in your eye and in a few minutes the result comes back.
I feel like if you can get to the testing that shows something…anything…it gives you leverage to pursue and to show Doctors you are not some crazy hypochondriac. I don’t know if the only symptom of high levels of MMP-9 is dry eye but I doubt it. My blood test was also elevated.
Some of you in the US who cant get blood work ordered can order it yourself through places like Ulta Labs which tends to be cheaper than Direct Labs and they both use Quest. There are some places in the UK that do allow you to order tests. However, you might not find as many as you can with Ulta Labs in the US.
I wish I could find just one story on this site where the patient didn’t have any problems getting diagnosed!!! The battle really wears you down.
I strongly feel that it is advantageous to order your own blood tests if Doctors won’t listen. About twice a year I will order a few tests and ALWAYS something pops up with a problem. HOWEVER, don’t expect the Doctors to know what to do with the results 
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My GP who is very willing to listen suggested I might have this early on and said we could try Lyrica. I told him I rejected that for now because I felt like it was a catch all when Doctors can’t figure it out. He admitted that is true but said in my case it might really be the issue.
I recently had an oral surgeon do a bunch of poking and pinching around my face, neck and shoulders. He declared I probably have multiple things going on but one of them is myofascial pain syndrome. He ordered physical therapy by someone who is suppose to be good but only is treating once a week right now so I can’t get in until November
I am taking my 3d scans from Radiant and pointing out issues where we need to be careful. So we will see how it goes. I don’t have much hope it will do any good.
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Myofascial pain syndrome can be reflective of the nerve impingements caused by ES & may go away once your styloid(s) are shortened. PT has been helpful for a number of our members but in the end, most have needed ES surgery to really get rid of the pain & other symptoms the styloids were causing.
You found me! I began having pain in the left front of my neck in June 2014. By July, I’d found a hard lump under my jaw. My PCP thought it was an infected salivary gland so gave me an Rx for antibiotics, which I didn’t take. Soon thereafter, I saw my gynecologist for my annual physical & she told me to see an ENT because the lump felt calcified. The first ENT I saw diagnosed me. I later realized I may have had some pre-symptoms in prior years, but once the pain got going, it was only a month or two before I had a diagnosis.
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@McWelly - I haven’t heard of Mediphany, but I posted the thread linked below a while ago. You may want to compare the cost eacd company charges because they’re pretty pricy. At least that way you’ll know which one is offering the best price for the service provided.
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Wow. You were so lucky. The stories I read on here sometimes are so distressing that i have to stop reading them. So many people suffer for so long.
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