Discharged from QEBH

[LauraMk30]

Hello everyone

It's a bit of a long one so I do apologise in advance x

Yesterday I had a combined Appointment with the E.N.T doctor & my specialist prof Lorraine Harper.

I had a nasal endoscopy which showed my right nasal passage was very narrow

but my CT scan results of my sinus revealed no infection, which was expected as I didn't have an infection at the time- so I received the all clear. Which is good but still doesn't explain my symptoms.

I wanted to mentioned quickly that I've had many reoccurring sinus infections, foul smells up inside my nose, nose bleeds, crusting, & constant dripping when I bent forward, and Also dripping that went down my throat. I was given so many different antibiotics to cure the relentless infections over the last 5 years+

I mentioned to the ENT doctor I had a stubborn dental abscess throughout 2016. A whole year I spent struggling with pain, swelling added on to that i still had the same horrific sinus pressure headache constant pain but multiplied by an abscess. Which was the icing on the cake!

I endured Multiple drains on the same tooth for an entire year, each month I would continue the root canal treatment have a period of 3 week rest to help the healing process & then continue again until it was complete

I had a few x rays which showed that the abscess began pushing on my sinus nerve & the bone on the tip of the canal had begun to slowly disintegrate & it was possible the poison had leaked out that's why I could smell something rancid. Underneath my right eye it would swell & look like id been punched but take the abscess out of it years of sinusitis is terrible but add the Abscess on top & it's unreal !

My dentist wrote to my doctor insisting I saw someone about my sinusitis, she was disgusted with how I just kept being given antibiotics that were not working, & just making me sicker, she has known me for a long time & even said to a oral facial surgeon that I have been suffering terribly with sinusitis for years & this one abscess has caused more problems for me, I had to cancel a few appointments with her due to sinus problems I couldn't sit through my treatment with terrible headaches, After many root canals deep restoration work the abscess cleared. Finally !!

I felt like I needed to explain myself that I was & am actually suffering with sinusitis.. but

She insisted I was in the all clear. & nothing was or has been wrong with my sinuses.

I will honestly admit I didn't feel like either of them were very responsive, I felt like I was being rushed through the appointment. I was in & out within 10 mins... which was quite shocking

My lesion Biopsy revealed inflammation but nothing else was said.

Prof Lorraine Harper said my bloods came back normal.

So she's convinced I don't have Vasculitis & there is no need for me to see her anymore.

I did ask why I hadn't had the other tests like kidney Biopsies & lung tests due to my asthma & Multiple lung granulomas. And I was promised more cardiac investigations too.. I also wanted to know my blood results but she said she would send a copy to me with all my results & one to my GP.

But......

She did mention due to some of the blood results positive ANA positive ANTI DsDNA & Anticardiolipin positive it indicates that I have SLE - Lupus.

Lorraine said I can start treatment as soon as my GP sees me. Which is

Hydroxychloroquine.

& my doctor can arrange a gastroscopy under general anaesthetic.

I don't feel as if I've had all the invasive tests that everyone else has had for there diagnosis but I guess it is what it is. & due to not being ANCA positive anymore & my blood levels have become normal I don't fit the criteria for Vasculitis.

Of course It's not a bad thing it's a good thing but when you've been told you have one disease your guided through the process & expect the same treatment as everyone else who is being investigated for it & then somewhere down the line my bloods changed & my specialists attitude went with it., and now I don't have Vasculitis I'm palmed off without much of an explanation, I'm confused as I don't know all the details. I wasn't informed of my previous blood tests & all the other tests were denied...

What if: they did a biopsy on either my lung or kidney.,

Why: was I once ANCA positive & now I'm negative

Isn't ANCA a antibody that shouldn't be in your bloodstream? So why was it there ? Will it come back ? What if it returns ? Which diseases apart from ANCA Vasculitis does ANCA positive fit with?

I received a bill of Silence....

Anyway guys & girls

I just want to say a HUGE thank you, to all of you that have taken the time to message me, all of your advice love & support have been heaven sent, you've all been so wonderful & I appreciate every one of you. You've kept me strong & kept me smiling, & most of all your beautiful words of encouragement & sincere care towards my health is something I will never forget. You guys have been there for me more than the people that are close to me. Your all angels & I feel blessed to have connected with you all. As I don't have Vasculitis I guess have to say goodbye but I hope life goes gentle on all of you & I'll be thinking of you always.

Please feel free to message me I would love to stay in touch, & please keep me posted on your progress. As I care very much. 😰😊 again thank you for everything I couldn't of got to this point without V.UK what a beautiful community you are. Miss you already x

[Hidden]

Hi Laura,

A positive ANCA doesn't always have to indicate Vasculitis, you can get false positives or cross reactivity with other auto antibodies. Kidney and other biopsies carry risk, you would need to have deranged U&E's or persistent blood and protein in your urine before they would want to do one, it's a similar situation with lung biopsies.

They call Lupus the great imitator as it can mimic so many other diseases. As you have positive anti cardolipin antibodies has anyone ruled out APS as well as Lupus.

Lupus is a rare, complex disease as well that is usually managed by Rheumatologists and not something that a GP manages by themselves. I am sure there is a specialist Lupus clinic in Birmingham, can you ask your GP for a referral.

Many of us on here have had a diagnostic odyssey, myself included. Lupus was an early rule out for me, it took me four years, around eight second opinions and travelling all over the UK to get my diagnosis and effective treatment. Don't give up, keep pushing for answers and effective treatment. The problem with sinusitis is that it's a very common finding in the general population and doesn't mean anything in itself.

Hydroxychlorquiline is the first line treatment for Lupus and can work very well, I hope this is the start of treatment that will work.

[Hidden in reply to Hidden]

Details for the Lupus UK centres of Excellence, one of which is in Birmingham

lupusuk.org.uk/centres-of-e...

[LauraMk30 in reply to Hidden]

Thank you Keyes you are a treasure.

I've had to take in a lot of information of the last few days & I think my head is ready to burst.

It's been emotional.

I went on to ask Her about APS but she said as soon as I get a referral from my GP to a rheumatologist I can ask there for tests.

The only thing I am worried about now is, at my hospital there not very nice, they seem to be more interested in trying to convince me that I'm not ill. But now I have a definite diagnosis I'm still going to be a complex challenge & from what I've experienced so far is some doctors don't like people like me..

4 years ! Wow Keyes ! That Inspires me to keep going.. I wasn't sure if I had to just except this & just go with the flow, as I don't want to leave all this in the hands of my GP. Altogether my dad & I worked out From my records that it's been nearly 14 years untreated. I assumed it was 7 to begin with but looking at my files I've been very unwell for a very long time.

Me too. Thank you Keyes for being the voice ! In my silent world, You have so much knowledge of these diseases I admire your honesty & how you word things you make it easier to understand & have settled my nerves on many occasions. I think your a little light to us all x

[Hidden in reply to LauraMk30]

Laura,

It would be great if the Vasculitis clinic could have referred you straight to a Lupus expert but unfortunately everything has to go through the GP who is the fund holder.

It's a funny place to be emotionally, glad that they have ruled out a potentially serious disease but still not getting complete answers.

I don't underestimate how hard this has all been for you and how difficult standing up to and challenging Dr's is. You have come a long way in the past few months, hopefully you are on the final stage of the journey to diagnosis and treatment.

I wish you all the best, it might be worthwhile checking out the Lupus and APS Health unlocked groups but don't feel you need to leave this one!

[ludo]

Hi Laura how dissapointed you must be feeling. I know I am for you! In many ways it's good that you don't have vasculitis but frustrating too. One good thing though is that they have picked up on what it might be which is good news.

I don't know much about SLE Lupus but it's a start and hopefully a road to recovery for you. It's important you get the best possible care and treatment. Try to find a hospital which specialises in it. There must be an online support group where to can find a centre of excellence nearby. You have complex medical problems which will improve on the right treatment. Just hang on in there.

Please keep in touch and let us know how you get on.

Ludo x

[John_Mills Volunteer]

Hi Laura -I lost track of what happened about the tooth which seemed to be a preoccupation for so long. Was it an upper molar, premolar, canine or incisor? Is it 100% certain that the grumbling abscess is now clear?

Were you given any steroids at any point? Certainly the ANA & anti cardolipin result needs checking out fully. I'm afraid Prof Harper doesn't seem to approve of patients knowing too much!There are some centres such as Addenbrookes (Cambridge) and Hammersmith (London) where they have combined Lupus/Vasculitis clinics.

If you find this group helpful & supportive, you don't need to leave the group just because you do not seem to have vasculitis.

Best wishes - John.

[LauraMk30]

Hello john,

I am still in the process of replying to your email. I had so my info to state, I didn't want to miss a thing out. I'll send it still anyway as you guys have the greatest knowledge.

It was a canine tooth, I've been told by my dentist it's totally clear.

Back in 2016 i was given steroids for asthma for 3 days only but no more since.

I guessed that.

I will check out those clinics, Im a little weary about my rheumatologists at my hospital, only because in the beginning of the "Vasculitis" journey they said I had it & didn't need treatment, I think my GP & Other doctors tried to convince me for years that I wasn't ill & I've tried for 9+ to tell them I am.

Yes those blood tests were repeated this year & still the same. I was told not worry for now & I had a ANA test back 10 years ago that came back positive & my doctor told me not to worry about it then too.

I absolutely love this group John. This community has helped me more than anyone else ever has. Truly wonderful people.

Thank you 🌼

[EOLHPC in reply to LauraMk30]

Hello laura

Am v much feeling for you & relating to your experiences in the diagnostic wilderness...i had 40 years of that before a brilliant True Detective rheumatologist at addenbrookes examined me and immediately diagnosed systemic lupus on the basis of physical examination & medical history alone. I was started on daily hydroxychloroquine the same day. When comprehensive blood test results came in, low lymphocytes & complements were the most indicative of SLE. Indeed, i did fully meet required clincal & immunologic criteria for diagnosis of SLE

At that point i was in my mid 50s, having had a lifetime of progressive multisystem debilitation, with multiple conditions diagnosed & in treatment + recurring persistent infections & unusual emergencies. After the lupus diagnosis, my elderly mother admitted i'd been diagnosed & treated for infant onset lupus....but she & the doctors had never told me lupus was underlying my constant sickliness....so when i moved to the UK at 21, the nhs took over my care without that crucial information

A few years after that startling recovery of my infant onset lupus diagnosis, my hero rheumatologist realised i had chronically below range immunoglobulins G, A, M. So she urgently referred me to immunology where i was diagnosed with the primary immunodeficiency hypogammaglobulinaemia....which we think accounts for my seronegativity. Immunology's ongoing care, including a v effective daily treatment plan has put a stop to my longterm pockets of bacteria driven sepsis (osteomyelitis in my upper jaw bone due to a failed root canal going untreated for 20 years) + sinusitis + gastritis due to slow transit bowel bacteria overflow) recurring persistent infection, particularly + UTIs with pyelonephritis

Between all the wonderful multisystem clinics caring for me, i am now nearly "fully" diagnosed across the board, including small cell vasculitis...which is why i joined this wonderful forum. My list of diagnoses is lengthy (if you're curious, it's all in my HealthUnlocked profile...including details of my daily combined therapy luous meds), but that's GRREAT cause everything is responding to well informed, targetted daily combined therapy treatment plans...AND i am feeling less pain + more comprehension, stamina & resilience than i've had since my teens in the states.

So, i am relating to lots in this thread and and want to offer my story as encouragement...am hoping it gives you more hope! Seems to me you are a v well informed, proactive and self aware woman...my feeling is that you will sort this out before long. Am v glad you're here...the advice & solidarity are invaluable

Take care

🍀🍀🍀🍀 coco

PS just realised how long my reply is...sorry...as you can tell, this subject is close to me ❤️

PPS just read your fantastic post & all the brilliant replies on LUK forum...am so glad you're there too...for 6 years the LUK forum has been helping me enormously too 👍👍👍👍

[LauraMk30 in reply to EOLHPC]

Thank you so much brownclown, it's really wonderful when someone can empathise with my entire journey. & can sympathise with how I feel, & how hard it's been, I'm an emotional wreck at the moment so when I read the part about your journey I started to cry. You have been through so much Brownclown but you here, strong as ever telling me your tale & for me that is inspirational, I admire your courage & strength.

In my family I'm the only one Suffering & struggling within the unknown, I've spent many lonely years wondering & waiting for answers, but it looks like you & I & the rest of the world have been lost in the wilderness at times. We found each other in the dark 40 years is absolutely outrageous! I thought my 14 was barbaric ! Jeez I can imagine to an extent of what you went through but that must of had a massive impact on you mentally.. all those silent years..?

I'm elated to hear after all that time a golden Rheumatologist diagnosed you almost immediately! Wow there are some great doctors out there. I'm waiting to find my diamond in the rough!

I still haven't started my Hydroxychloroquine treatment, I visited my doctor yesterday, VERY awkward as I am back in her care, the only thing that I need from her is some eye contact, the absence of a connection is worrying. I asked to be referred to a nutritionist, I'm suffering malnutrition due to my stomach problem & GORD. I haven't eaten a full meal in 2 months. & I'm living off probably a half a bowl of soup & yogurts if I can stomach them as nothing seems to sit. I either choke, regurgitate or vomit after eating solid foods. My stomach is still extended after eating only a biscuit yesterday.

My GP said she can't refer me at this time, & before I could ask about shakes she said no we don't do that on the NHS.

I mentioned I was prescribed a generic substitute PPI & the brand name Mylan works well for me. She went on to say I've never had them ?! I've been taking lansoprazol for 2 years under the brand mylan.

So she put so much effort in to trying to convince me I was wrong & didn't have an ounce of empathy for my eating struggle, she could of found it in her heart to help me. I was literally chocking on my acid in her office as the stress was making me feel unwell.

I spent just over 4 mins (timed myself) quickly rushing through my stomach symptoms & pain, & she spent 15 mins denying me.

All I wanted was some relief I'm so desperate..

Low lymphocytes !? I'll research that. I want to learn and understand to the best of my ability.

Bless you Hun, to still be at war with your body in your mid 50's is horrifying it's bad enough you had to endure hell continuously prior to that.. I just feel for you immensely!😪

I have a low range of immunoglobulins but for some personal reason due to there lack of care & neglect I feel like there waiting for me to die, my first set of extensive bloods showed so much evidence But still they did nothing.. I know GPs don't need have a relationship/friendship whatever you call it, with you, but I feel very hated by my doctors surgery & after all these years it hasn't changed, after yesterday's appointment I have to wait a few weeks or months to be referred to rheumatology again in my town, QEBH is a fantastic hospital & I was treated really well there, it's just such a shame that I don't get treated that way at my hospital. I'm rambling..

It's very nice to hear though that you found some solid ground, & further immunology tests revealed what was truly wrong, I hope one day I can receive the care I deserve too. You deserve the world brownclown, I think

Your an inspiration to us all, this forum & the other has been a voice in my silent world & I can't thank everyone enough.

I can emphasis so much with your journey as you can with mine, most definitely with the root canal ! Jeeeeez! What pain!! Sinusitis & gastric! It seems like your issues are a reflection of mine, I'm glad you had a definite diagnosis for all of them, im still floating in mid air waiting for someone to pull me & place my feet firmly on the ground. I'm in limbo again, but this time diagnosed but still wondering and waiting for what's happening next..

I will definitely read your profile, it's comforting to know someone else out in the world feels like I do & hopefully one day I can be in the same all knowing position.

So HAPPY to hear your in less pain & you've got your energy back to some degree. It must feel amazing ! I can't wait to feel myself again, i miss the old me but looking forward to meeting the new me

I think I might have missed a few things out, but I'm really privileged to have connected with you brownclown, thank you for reaching out to me. I wish I could express how much it means to me. Your an earthy angel & hope life is more gentle & kind too you. You deserve that at least

Hugs xx

[EOLHPC in reply to LauraMk30]

You're vvvv welcome 🤗

I'm looking forward to meeting the new you too 😉

Meanwhile your courage & resourcefuless are inspiring many on HU forums i'm sure...every detail you're sharing here will be important & helpful to others, including the many in similar situations who read HU posts & discussions but don't actively participate

Take care 😘🍀😘🍀😘🍀