Awaiting Results for Vasculitis

[Belinda84]

Hi

This is my first time posting and wondering if anyone has experienced something similar to what I am currently going through. I'll explain as much as possible from the start to end so you guys can get an idea of where I'm coming from, but I'll try to make it as short as possible.

I had my son in May 2015 and then I have been suffering with joint pain since July 2015. I put it down to a old hip pain I have had since I was 13, which the doctors could never diagnose. By the January of 2016 things started to escalate and I have an uncomfortable pain in my feet that would make me stretch my feet out to try and relieve me of the pain. My knee then started playing up, but again I put that down to an old problem as I have had a knee problem since I was about 12. The joint pain carried on escalating and moving to different parts. My elbows, fingers, knees, hips, wrists and feet were all effected. Before I was pregnant with my I was experiencing a pain in my middle finger and just ignored it as I knew my GP would not bother investigate, they tend to ignore a lot of things. I happened to see a GP I do not normally see and he arranged an MRI on my hip and they found I have Sacroilitis, they then referred me to physio, who then referred me to Orthopedics, who then said I was in the wrong place and needed to be seen by a Rhuematologist and it sounds like I have a systemic condition.

My first visit with my Rhuematologist was in Sept 2016 and she sent me for the world of blood tests. My ANA came back 1:320, my Anti SSA (Ro) was positive and I think another part of the ENA test came back positive. Even though I have these positive results along with a lot of symptoms; hair falling out every now and then, eyes sensitive to light, skin rashes, chest pain, stiff joints, ear sensitivity, forgetting things, irritability, pins and needles down my left side, my left turning to ice for an hour then burning up and hurting, extreme fatigue, going to sleep then waking up with a numb sensation on the left side of my tongue and a few more I can't remember, they have put it down to Fibromyalgia. I have also been diagnosed with Chronic Fatigue Syndrome, as of Monday.

I complained to my Rhuematologist that I have been having really painful glands under my jaw since the beginning of the year. I have had it on and off over the years and the GP always ignored it, but since February it became really bad. I went to my GP and told her they hurt and when they hurt I can't talk or can't go above a certain level. She took a swab and told me that "When you glands hurt it is a good thing and it means they are doing their job" I was shocked and disgusted by that as I knew that was rubbish. I told my Rhuematologist and she arranged an Ultrasound. It came back that my Submandibular gland is swollen and the blood vessel inflamed and narrow. They arranged an emergency appt at Macmillian and they gave me the all clear in regards to the C word. I had to have another ultrasound which gave them the same results but my blood results for ANCA were negative. They also done a biopsy and that has come back negative. I am confused because the inflammation is there, the pain is there, the narrowing of the blood vessels is there, I have really bad sinus pain that feels like it is going to explode, my urine burns but my GP is ignoring it as the culture grew nothing, the white cells in my urine were high and the red cells were just above the highest level but they have been sitting at the top end for some years with the GP not being concerned. I lost a stone in 2 weeks and since then my weight is up and down, I feel to vomit, my stomach hurts and feels bloated, I also have this on and off wheezing, it feel like I need to cough then when I do nothing happens but sometimes the cough builds up and it releases but I wheeze before then after I cough it goes away. I keep telling my GP about my chest and they keep ignoring it because the xray was clear.

Has anyone experienced symptoms of vasculitis but the blood and biopsy results came back negative even though the ultrasound is showing it? What did your consultants do after to try and get a confirmation? I am due to see my consultant at the Dental clinic on the 14th. Even though the ladies have been absolutely lovely, I feel like I am eventually going to be left just to put up with the pain in my salivary glands as they cannot get a confirmation. Now when I swallow it has a sharp pain to it.

Sorry if this ended up being quite long, but thank you in advance x

[Hidden]

Hi Belinda,

The positive ANA, hair loss, sun sensitivity and other symptoms are more suggestive of Lupus ( which is called the great imitator ) than Vasculitis, has that ever been ruled out?

There is also a disease called Sjorgrens syndrome which is associated with anti Ro and La which can cause swelling in the glands, it affects all the mucous secreting glands causing them to dry up.

You can get isolated inflammation in blood vessels for various reasons, it isn't always the sign of a systemic Vasculitis.

I am not at all saying you don't have Vasculitis but what's apparent to me is that you need a second opinion from a Rheumatologist with good experience in complex, rare, auto immune disease.

Most of the Rheumy's who see patients with Vasculitis are interested in Connective tissue disease ( Lupus ) as well. If you let me know what part of the UK you stay in I can hopefully reccomend someone with the necessary experience.

[Belinda84 in reply to Hidden]

Hi Keyes

Thanks for the response.

I was meant to mention about Lupus and Sjogren's last night and totally forgot. In December 2016 I saw a consultant by mistake, as someone booked me an appointment which turned out to be a duplicate. I told him of all my symptoms and he ignored what I said and asked me 4 question regarding Lupus and then said I do not have Lupus or any connective tissue disease. I know not everyone suffers with the same symptoms regarding Lupus, but this consultant seems to think that if you do not have symptoms in regards to his questions, then you do not have it. As I was not his patient he didn't want to go into too much with me. He put on my record that I do not have Lupus or any connective tissue disease even though I have a lot of the symptoms. My ultrasound lady says I do not have Sjogren's as I have moisture, but the thing is I do suffer with dry mouth and throat quite a bit. I'm kinda in limbo with all these borderline results but a lot of pain.

I'm in Enfield and under a Rheumatologist at UCLH. My main Rheumatologist is a lovely lady and has sent me to multiple departments, I just feel lost still because I know something isn't right but they can never get a definite answer.

[Hidden in reply to Belinda84]

Have sent you a PM.

Lynn

[1955-16-02]

Hi Belinda

Sorry you are going through hell with this. As the other person said it is most important you get to see another rheumatologist for a second opinion. I have been diagnosed with churg strauss. By chest consultant. My old rheumatologist agreed. My new one disagrees and ends up disagreeing with chest guy. So much so i have had endless stays in hospital this year . i have had to learn about the condition..read up. See other gps at my practice for help. Its difficult because it could be lupus or any other auto immune condition. Please dont give up. Knowledge is power. Unfortunately we as patients have to do a lot of work to get the right answers. It might help if you are able to consider how you are now...and try and put childhood accidents or incidences in the past and dont enlighten the gps etc. They can easily go down the wrong assumption. Write how you feel down ... Take things like your temperature on a regular basis. Make sure you keep a record of times if it goes high.... Try to meditate just to help you focus on whats up.. My anxiety went through the roof. When i managed to calm down. I took myself on as a project... And went on a mission to get sorted without extra stress on my body.... Good luck but please get another opinion.

[Belinda84 in reply to 1955-16-02]

Hi 1955-16-02

Thank you for the kind words. Ever since my body has decided to malfunction I have been reading everything possible to try and figure out what could possibly be going on. I then ask them specifically about these conditions and they reluctantly say it could be one of those but then they just focus on Fibromyalgia. At my biopsy 2 weeks ago the ultrasound lady mentioned it could be Churg Strauss. I read about it and some of my issues were listed there...A General Medicine consultant who I had a disagreement with on Monday is adamant that my chest is fine even though I have severe pain and a cough and breathlessness. I told him off as his whole attitude was disturbing.

I have noticed that GPs and consultants tend to go off of the first thing you mention and ignore the list of other things and then misdiagnose you. I've been taking a list of things that has been happening and plan of showing it to my Rheumatologist on the 17th Sept. I always go in prepared. I'm sure some of them don't like us reading up on things, but oh well...we need to educate ourselves so that we can ask the right questions and get the right diagnosis.

Wishing you luck with everything as well and I hope your anxiety continues to behave x

[1955-16-02 in reply to Belinda84]

Yes thanks it is. I just keep working on it. Think anxiety comes from so many stays in hospital this year alone over 6 weeks in total. So glad you are reading up on your health conditions. If you ever need to know about churg strauss just shout.. Wishing you well please let me know how you get on only if you get a minute. Good luck x

[Belinda84 in reply to 1955-16-02]

6 weeks? Oh my gosh. The amount we have to go through because of these diseases is ridiculous. I would love to know more about it please. At least it will prepare me for my appt on the 14th Sept x

[Belinda84 in reply to 1955-16-02]

Hey

I had my appt at Eastman Dental and they said I don't have Vasculitis but I has inflammation in the biopsy but the inflammation won't cause pain and I should just put a hot flannel on it. Even though my blood vessel is inflamed and narrow as well. She also said that it is muscle pain I am feeling and it is sending pain to my glands, even though yet again my glands and blood vessels are inflamed. I got so upset and fed up. I booked a private appt with Dr D'Cruz for the 5th December, but I was also told that a Dr Pursey is one of the best for Vasculitis so I may see if I can get in with Dr Pursey sooner.

My consultant doesn't want to find out what is causing the inflammation so I give up with them. I will see what my Rheumatologist says Monday but I have a feeling it will be bad and they will just ignore me.

Hope all is well with you x

[Jeans1]

Hi Belinda

Firstly I would urge you to see another rheumatologist . My experience is very similar to yours . My initial symptoms were swollen glands , joint aches , rashes , high temperatures etc , and some central nervous system issues such as vertigo and numbness .

In 2008 I was referrred to st Thomas's by my gp when I was unhappy with the watch and wait approach of my then rheumy .

At st thomases , my bloods were positive for RO and LA antibodies , sjogrens was excluded by parotid scan and I was given a diagnosis of systemic lupus .

Since then I have had a relapsing/remitting course with new symptoms of ulcers along with declining central nervous system symptoms , it is now believed that I have SLE with an overlap of behcets syndrome .

I am currently taking hydroxychloroquine and methotrexate and interemittent steroids . What I do know is that you have to keep pushing , it's very easy for a specialist to turn a blind eye when issues are complex and not always obvious . Keep and diary ( take pictures ) and ask your gp for another referral .

Jeannie

[Belinda84 in reply to Jeans1]

Hi Jeannie

Thanks for the response.

To be fair my main Rheumatologist is a nice lady and sends me for every test according to my symptoms. It's only that Rheumatologist I saw by mistake and the General Medicine consultant that have given me a lot of problems. I am going to see what my Rheumatologist says on the 17th and then take it from there. Hopefully one of her junior doctors do not pick up my file on the day. They tend to just drop them in a box and whoever picks the files up first is who you see. I was thinking of going private but unfortunately the cost was too high for me at the time.

The watch and wait theory is so frustrating. In a sense I understand that they want to see if any new symptoms appear, but when we have so many symptoms and they are being ignored just because of borderline results it really angers me.

I've read about those medications but have not been put on them. They initally prescribed Amitriptyline, Tramadol and Co codamol. Amitriptyline worked for a little bit then stopped working all together and Tramadol and Co codamol makes me feel really sick so I do not take them. They then prescribed Gabapentin and it has never worked but they want me to keep taking it. So to get rid of my pain I tend to rely on Nurofen, and it does wonders.

I've always believed that I have Lupus but they do not believe I have it even though I have symptoms and positive blood results. According to a junior doctor you can be healthy and have a positive result, which I know, but I am nowhere near healthy. Smh.

I've suffered with Vertigo for years and odd nerve problems but just kept going. I get mouth sores constantly as well. Now with my inflamed blood vessels and swollen glands filled with fluid I am worried that are missing something and will just leave me. I am trying to find another reason for my blood vessels being narrow and inflamed just in case it is not Vasculitis. My gut says it is but we will see.

I hope everything works out OK for you x

[Leonies]

Hello Belinda, I am so sorry that you are going through this, especially with a toddler. I went through nearly the same (but not as bad) before I was diagnosed with EGPA, Churg Strauss Syndrome. I had numb toes, on and off, then numb fingers, aching joints on the right side which I put down to a fall a year ago..my GP thought I had Black Mould in my lungs, another gave me antibiotics as my sinus/breathing were bad, My Chiro said It was to do with a slipped disk, I had foot drop so another Dr said it could be MS. I had MRI, ultrasound, cat scan, xrays.... all clear! I went to the ER as I just couldnt live with it getting worse, they did bloods and said I had some inflammatory markers, so I should go to physio as they thought the fall I had may have been the problem...anyway a respiratory specialist looked at my hospital blood results and saw that my eosinophil count was huge, I was immediately sent to hospital and had 6 specialists who between them diagnosed me with EGPA. That was actually wonderful, to have a diagnosis! They did a broncoscopy with biopsy of the lung & rhinoscopy both were clear. I was put on IV Cytoxin and prednisone. I had lost a huge amount of weight and in the numb areas the muscles had shrunk away. After 4 weeks I was allowed home and now 10 months later I still have the numbness in feet, leg and left hand, but I know I am getting better. I have gone from wheelchair, to walker, to walking stick and can now walk by myself. I am on oral Methotrexate and prednisone. I just take it one day at a time. Let us know how you get on, and get them to check your eosinophil count. I now get all the results of my blood tests sent to me so I know what is going on. And as somebody else said keep a daily journal of all that is going on with you. Best of luck.

[Belinda84 in reply to Leonies]

Hi Leonies

Thank you love. It is hard with a 2 year old. I also have a 7 year old and he helps out so much when I cannot move. I feel so bad at time because he shouldn't be having to help me take care of the little one. Luckily he is more than happy to do it and make sure I have what I need. Bless him. Lol.

You have been through it just as much as I have. We are all really fighting a war. I can't wait to see my Rheumy as my GP is ignoring this chest pain and cough and it is getting worse. I have hopes she will investigate this.

My ESR has been just above normal (8mm) since last year March, so they are not bothering with it, but it keep climbing slowly. They checked it in December 2016 and it was at 13mm. I looked at my last eosinophil count and it was normal, so not sure what they are going to do now.

Did they eventually find out what was wrong with your chest? Was it down to the EGPA? My weight has been up and down but no major loss after the stone in 2 weeks.

I hope you get some answers and everything starts to get better for you as well hun x

[hellojulie in reply to Belinda84]

Have they x-rayed your lungs? The nodules on my lungs are what led to my GPA diagnosis. For some reason my cough stopped when I started taking oxycodien (percacet) for pain -- also Symbicort inhaler, later Brio jnhaler. Now I have no cough at all. Bless you with your lovely children. I cannot imagine going through this with little ones to care for. This reply is from hellojulie, don't know how to identify myself, am newbie!

[Belinda84 in reply to hellojulie]

Hey hellojulile

They have x-rayed my chest a few times and they cannot see anything but they cannot tell me why I have pain in my left lung and a cough plus chest burn. They mentioned they were going to start me on Prednislone for my inflamed vessels but I do not know what they will do now that the biopsy of the glands (but not the vessel) came back negative.

I'm glad they found out what was wrong with you so quickly because being left in limbo is crappy.

What kind of exercises do you plan on doing? I have tried a few but then left in agony.

[hellojulie in reply to Leonies]

I was diagnosed fairly quickly ( a week of MRIs, CATscans, x-rays, biopsies, ultra-sounds) with Wegner's Granulomatosis. I am being treated with prednisone and today my first weekly dose of rituxan. (for a month.) Have to use a walker, foot drop (right foot) and paralysis in feet ant right hand. Age 73, non-smoker, good health and active to this point. Thank you for all the information in your post, will keep up with you and others! I am hoping exercise will prevent any muscle loss. Doing as much as I can.

[Jackie1406]

Hi Belinda I had all your symptoms and diagnosed with Anca Associated Vasculitis. You should join Vasculitis Uk and John Lynn & Susan are very experienced in Vasculitis and you can talk to them & they put you in touch with consultants in your area with a great knowledge of Vasculitis. Good luck

Jacqueline

[Belinda84 in reply to Jackie1406]

Hi Jacqueline

Thank you very much for that, I will definitely seek our John and Susan. I am already joined with the group, so hopefully I will get a chance to get in contact with them later x

[paullevans]

Hi Belinda Sorry to hear your GP Is a AH. I have been fortunate on that score, I have sufferd for two years with suspected Starting with Headaches and inflammation of the eyes GCA, Nuero sarcoids Bechets after losing sight in my right eye with Uvitis melingitis on the brain Pneumonia several mild strokes and being hospitalized for 14 weeks having 6 lumber punctures endless full body MRIs

Brain Temple and eye Biopsies all negative ,Then they done a PET SCAN Bingo confirmed Positive diagnoses Large Vessel Vasculitis and Aoirtitis Its not good News but its a releaf knowing what it is that is causing the symptoms.

I have had all the treatments High dosages of Steroids on rituximab now still getting the symptoms Muscle and joint cold then Burning chest pains confusion dizzy spells virtually deaf and fibrillation Just have to try and Control it. hope this helps they repeat the pet scans to monitor the disease they are costly that's why they don't give them but if they had done one in the beginning it would have saved NHS a fortune. but everyone has been great from my GP Dr Jackie Reddington village surgery Formby and My Consultant Miss Christine Burness at Walton Centre In Aintree Liverpool and all the consultants registrars and Nurses have been wonderful to me

God save the NHS

[Belinda84 in reply to paullevans]

Hey Paul

Thanks for the response. You made me giggle with the first sentence. That is exactly how I feel about them. It was scary to find out that I had inflamed and narrow blood vessels but my GP saying to me that it is a good thing when they are swollen. I do not see her anymore, but even the other one I regularly see is getting on my last nerve. Odd GPs and consultants are great and do everything to find out what's wrong, but that few that are more worried about cost and thinking we are making things up really upset me and put me off seeking help.

Your story is absolutely scary. I want to ask for a CT/PET scan (not sure if they are the same) but I feel I may be out of order for asking for one, even though I shouldn't feel that way. To be fair, quite a few of the consultants at UCLH have been wonderful, but those that have been difficult and wrote down things that eventually stop other consultants from investigating, have been doing my head in and making this journey far more difficult. All because they don't want to listen. Smh.

The consultants at Eastman Dental Clinic suspect that I have some type of small vein Vasculitis, but they are having a hard time figuring out which one.

I will definitely speak to my Rheumatologist and suggest a few things to her and see how far we get.

I wish you all the best x

[paullevans in reply to Belinda84]

Don't you worry Belinda about asking for a Pet Scan you Show them my reply its from experience and my consultants said to me they should have done this first It would have prevented a lot of symptoms I have developed and saved my eye sight

Cutting corners always costs more in the end, Prevention is better than cure

The Poor NHS waists Money because of this Cost Saving strategy forced by government Cuts

Good Luck

God save the NHS

[Belinda84 in reply to paullevans]

I totally agree with you. The government are really destroying a good thing.

I will mention it to them and try to show them, hopefully the lady will be interested. She is normally great.

I hope they keep on top of your condition and act quicker in the future. Wishing you all the luck x

[hellojulie in reply to paullevans]

you are the first to mention deafness, a symptom that has bothered me for almost four months. I am seeing the Ear specialist this week now that I have definitely been diagnosed with Wegener's Granulomatosis and Anca-related vasculitis. Getting on rituxan on Wednesday. Taking Prednisone.

Any treatment for the deafness??? Besides a hearing aid? I can hear some, but all is far away.

[paullevans in reply to hellojulie]

there is no treatment other than keeping them clear of infection

[AmyS1]

I have relapsing polychondritis a rareb form of vascultitis

Your symptoms are very similar.

[Belinda84 in reply to AmyS1]

I will read up about that.

[Mal06]

Belinda like the others I sympathise. It can take ages to get answers but the most important thing is to have an experienced consultant who can analyse the tests to date it may be one of the vasculitus family it may be another auto immune disease. Many of us have several inter-connecting hence the variety of symptoms can confuse Drs. It took me ages to find the 'right' dr but now feel I'm in good hands. I hope that you can get a second opinion to find out what's going on and treat you appropriately. You might also (when you're up to it - although not to taxing) think about changing your GP, again it really helps with these type of conditions to have a supportive one, who keeps a good eye on us. Take care, let us know how things go.

[Belinda84 in reply to Mal06]

Thank you very much Mal. I have been thinking for months to change my GP. There is one I am interested in but I want to go and check it out first to see how I feel.

I have been going back and forth trying to get an idea of what direction my body is leading me in. Reading so many things and comparing my symptoms and the only thing I keep landing on is Lupus, but I think they are trying to stay away from that. I have always felt my symptoms go more with Lupus, and the consultants seeing me for the possible Vasculitis mentioned it could be Lupus causing "Vasculitis", but I think they are doing the whole wait and see thing.

I have thought a little bit about maybe changing Rheumatologist but I am going to wait until after the 17th Sept to see what they think and their next approach is.

My body has been behaving for a few weeks and I keep saying to my mum "I don't think I am sick anymore" and she just keep laughing at me. Lol. Do you ever have those stages and think to yourself "I'm normal again"? Lol

I will keep you guys updated x

[Mal06 in reply to Belinda84]

Hi two things firstly GP it's easy to do- I've done a lot because of moving around. First as you say research - sit in reception see what it's like, look the surgery up - they are rated on Nhs web site, also see how many Drs, nurses etc, what they do in-house. The modern surgeries I've found are the best. If they'll take you, some have almost closed lists and only take if just moved into area etc. You ask for a form, after about 5-7 days they'll have registered you and you go for a quick mini-medical blood pressure etc. I usually make appointment to see my named dr a few days later. Important - I get from my old dr - my medical history and list of prescription meds (I always top up from old dr before I tell them I'm leaving!). I take the paperwork with me to first appointment, but I always attach a copy to the form I give reception as well - a little light reading for new GP and some downloaded info on my illness (diff in your case!). As the paperwork from old GP takes about 6 weeks to come through so they don't like to prescribe etc til theyve got hence getting it to them in advance! It's fairly easy just need to organise.

Second thing is I would defo go for a second opinion, your GP will need to refer doesn't mean you actually leave your current rhumy just seeing what another view is. It'll take about 3 months to see someone so may as well get ball rolling. As I've mentioned and few others have, you could go to Guys & St Thomas' hospital, would be good choice as they lead on lupus in U.K., my consultant - prof d'cruz is based there and covers lupus and Vasculitis as well. He operates from the Louise Cotes lupus unit at Guys. He's lovely extremely thorough and looks at symptoms not just test results. I went to him when unhappy with my dr but couldn't wait the 3 months or could be longer so saw him privately at the London Bridge hospital about 10 days later (still need GP to refer) I took all my test results with me, he examined me reviewed them all and concluded immediately that I had EGPA. Agreed not to do any private tests - cost!, explained what he would do once I saw him on NHS and what the plan was in meantime which he wrote to my GP to ask for certain prescriptions. As soon as I saw him on NHS he sorted tests and within 2 weeks I was on a round of cyclo (preferred option at that time newer drugs now being used). I feel very lucky to have found him. You can end up perhaps waiting an hour or two (once it was 4!) to actually see him on the day as he spends at least 30-40 mins with each patient very thorough. The private route is about £150 or so just for that one consultation, but I was too stressed to wait.

Defo change GP and defo try second opinion, need a proper diagnosis and treatment. Yes you can feel almost well at times and can start to doubt you've got anything wrong. Hehee. But it comes back usually, mind you suppose depends what it is. Best of luck. Keep us updated. Sorry for long post.

[Belinda84 in reply to Mal06]

That is no problem. Loads of info is good.

I keep seeing St. Thomas pop up on threads and Prof D'Cruz's name. Everyone always has nice things to say about him and the hospital in regards to the Lupus centre. When I spoke to London Bridge Hospital some months back I would of had to pay over £600 for tests and so on, but now I have had quite a lot done I will get the rest of my results and probably book an appt after my Rheumatology appt on the 18th Sept. If they are still in limbo, leaving me clueless yet again, I will speak to my GP who I already know will make up some excuse to not do the referral for a second opinion. I may just take the hit and pay the £150 or so myself.

I found out about the GP I am interested in on the NHS site and they had good reviews. It's only down the road from me but I don't recall seeing the building. I noticed the new GP surgeries do tend to look after you a bit better, but then I also guess it's down to the actual GP as well. It's so hard to find a care professional who is willing to take care of you properly these days...it's sad.

They suspected I had EPGA but called it something else. I definitely have something that isn't right. My Submandibluar glands are so painful. I now have a sharp stabbing pain in them, which is about 5 days new. It's a shocking stabbing pain, it's awful.

3 more days then I will give you an update. I hope everything is a good as it can be with you x

[Belinda84 in reply to Mal06]

Hey Mal

I had my appt at Eastman Dental and they said I don't have Vasculitis but I has inflammation in the biopsy but the inflammation won't cause pain and I should just put a hot flannel on it. Even though my blood vessel is inflamed and narrow as well. She also said that it is muscle pain I am feeling and it is sending pain to my glands, even though yet again my glands and blood vessels are inflamed. I got so upset and fed up. I booked a private appt with Dr D'Cruz for the 5th December, but I was also told that a Dr Pursey is one of the best for Vasculitis so I may see if I can get in with Dr Pursey sooner.

My consultant doesn't want to find out what is causing the inflammation so I give up with them. I will see what my Rheumatologist says Monday but I have a feeling it will be bad and they will just ignore me.

Hope all is well with you x

[macrstq]

I had Wegener's diagnosed on my lungs following pneumonia. A course of cyclophosphamide. Then suffered terribly with sinus pain, bleeding from the nose. The rheumatologist taking care of me would not believe that I now had a problem in my sinuses because it was not showing in my blood. In desperation I visited an ENT specialist privately. Within 2 mins he said it was Wegener's in the sinuses. It was not until he did an operation and cleared the sinuses and took a biopsy that the disease was seen to have spread to my sinuses that the rheumatologist believed me. By this time my septum was nearly breached. Then I had another round of cyclophosphamide which worked.

So, although it may not show vasculitis in your bloods, it probably will do in your sinuses. Sorry for long reply!! Mx

[Belinda84 in reply to macrstq]

Thank you for that and I am sorry that your Rheumatologist refused to listen. I had an appt with the people investigating my glands and they basically told me that y glands won't hurt me with what I am telling them and to put a hot cloth on it. Even though it is showing inflammation in my glands and blood vessels. I am going to do an update post because it is a bit long.

I totally understand what you mean when you say it may no show in your blood but you can still have it. When I explained basic things to this consultant yesterday all should done was stay silent and told me to accept whatever my Rheumatologist tells me. Errrmmm...NO I will not.

What private clinic did you go to? I booked an appt at London Bridge Hospital straight after yesterdays failed appt. I am still fuming.

x

[macrstq in reply to Belinda84]

There were 2 private Dr's. One was Mr Toma a surgeon at Parkside Wimbledon ENT. He biopsied the sinus and sorted that. He operated and cleared it. He also works at Kingston hospital and St Georges. Then Professor D'Cruz who works out of Guys and St Thomas. I think I saw him at St Olafs. A private hospital in that area. If you have problems contacting either do get back to me. You are entitled to ask for a referral to The Louise Cooke Lupus clinic. This is where I am seen and they are excellent. Hope all works out.

[macrstq in reply to macrstq]

Hi. Just looked it up. St Olafs house is The London Bridge hospital. That may make it easier to find. Good luck.

[Belinda84 in reply to macrstq]

Thank you love. Dr D'Cruz's secretary booked my appt yesterday at his private clinic and I have been put on a cancellation list in case anything comes in sooner. I am making some phones calls this morning to see what can be done sooner as my private appt isn't until 5th December and I'm in agony.

[macrstq]

If most of yr problem is from your sinuses why not try the ENT route as well, maybe Mr Toma, who may be quicker. Also ask for an NHS referral to Louise Cooke, which could be almost as quick as 5th Dec. That is too long to wait, in my opinion. Mx

[Belinda84 in reply to macrstq]

Hi macrstq

My problem isn't just my sinus, it is a new symptom that has started that is very bad at times. I saw my Rheumatologist today and I told her I haven't seen the ENT as yet. I am not sure if she is going to send me there because a lot was going on in the appt and we were hopping from one thing to the next, so I may give her a call or just leave it and see what is said at my private appt. My Rheumatologist now doesn't want to see me for a year because they have put it down to Chronic Fatigue Syndrome and Fibromyalgia. She is only keeping an eye on me because of no producing saliva and wanting to see if it is Sjogren's.

[macrstq]

Sorry to hear this. Hope you get somewhere soon. I am sure that London Bridge is the way to go. Just a shame you have to wait so long. M

[Belinda84 in reply to macrstq]

I am hoping they give me a call with a cancellation so I will not have to wait until December. There is another private doctor I may try to get an appt with, who is very good. So if he can see me sooner I will be making that appt. This has been going on too long. Hope all is well with you.

[Hidden]

It's a real nightmare I know, I've had it since 1992, where I was in hospital for five weeks , getting worse by the day, lesions on my brain and similar symptoms to what you are experiencing, if you have a definate diagnosis of vasculitis , then go to addenbrrokes hospital Cambridge as they are good at treating vasculitis .

I have cerebral vasculitis with systemic symptoms , that affects virtually everywhere, u need a team of people around you to help you to deal with this if it is affecting your functionality of your body.

Every case is different so don't think that things are set in stone, as you get what u get with this condition.

I have tried a diet regime that has helped for a long time and now I need some intervention myself as 2016 my whole life fell apart as my wife left and divorced me.

But people have to do what is best for them I suppose.

[Belinda84 in reply to Hidden]

Hey talos, sorry for the delay in responding. I've been back and forth with my 2 year old to the hospital who burnt his hand on the cooker. My body is tired.

Unfortunately (maybe the wrong word), I do not have a diagnosis of Vasculitis. I say unfortunate because I feel with my symptoms kind of point to it but my ANCA and biopsy says different. No other tests were done though, not sure if anymore could be done. I am planning on seeing a private doctor for a second opinion.

Sorry you had to go through all of that. What is your average day like? Do you have more bad days than good?

Belinda

[slcoppedge]

Hi. I live in the USA (Florida) My symptoms are almost identical to Belinda's except I don't have the positive blood markers. I have suffered for years and am so sick of it. I'm 45, have severe migraines almost daily, diagnosed with Fibromyalgia with worsening joint/muscle pain and fatigue. The jaw/ neck pain (especially that muscle going up either side) hurts so bad. My head is under so much pressure all the time. My shoulders, hips, elbows, knees, well it just ALL hurts. I do have some numbness and tingle in my feet and hands. I have tiny little red (I call them blood spots) on my skin. I have little white and brown spots showing up (the white is like there's no melanin-if that what it's called- in my skin in those spots). Rheumatlogist just says I have fibro and lets me go. Could it be more????

[slcoppedge in reply to slcoppedge]

Oh, and feels like fiberglass when I go in the sun, and I can't sleep very well.