Awaiting Vasculitis Results - UPDATE - Vasculitis UK

Vasculitis UK

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Awaiting Vasculitis Results - UPDATE

Belinda84 profile image

Hi Guys

Everyone who responded on my first post, thank you very much, you were all lovely. I had my appointment yesterday at Eastman Dental Clinic and it was a big fail.

So...they first done an ANCA blood test and that came back negative and then they done a biopsy of my Submandibular gland but not the blood vessels (which is inflamed and narrow). The biopsy result came back negative for whatever type of Vasculitis they were looking for, but it showed inflammation.

The consultant proceeded in saying to me that the inflammation in my blood vessels and glands will not cause pain and the pain I am actually feeling is muscle pain which is starting somewhere else and radiating to my inflamed gland and blood vessel leading to the gland. I wish they had emoji faces on here so you can see the look I have on my face. Lol. She then felt just below my ear and pressed it and I felt a muscle pain. She then tried to justify what she was telling me by showing me on the computer which muscle was hurting and in that the muscle is making my gland hurt (and not the inflammation, swelling and narrowing of the gland and blood vessel). I told her that pain in my muscle is not the cause of my gland pain and tenderness.

I disagreed with her and said I do not have muscle pain and have never had neck pain in that sense. I know what muscle pain feels like and my pain is directly in the glands and I am now getting a severe sharp pain in my gland (which she ignored). You can see my gland is swollen and it is tender to touch. I explained to this professional doctor, that even though my blood results may be just above normal that does not mean it is not affecting me. That another person with my type of results may not feel anything at all, also, that a person with high result may not feel something but another person with the same results may feel something. I really don't know why I have to explain something so basic to someone who went to university for this profession. Some people really do not have common sense and it is frustrating. I informed her that they cannot go along with a basic guideline in a text book as everybody is different and that does not always help people, and then people are left suffering and deteriorating which is unacceptable. She didn't have anything to say about that.

I said to her that there has to be a reason for the inflammation, it will not appear for no reason. Inflammation anywhere is caused by something, whether it's infection, Vasculitis or something else. I asked her why the inflammation was there and she said she doesn't know. So I said "You guys do not know and are not trying to find out what is causing it? That doesn't make sense" She stayed silent and offered nothing.

I explained all my symptoms to her yet again: weight loss, confusion and forgetfulness, gland pain, sinus pain, numb tongue and left side when waking up, joint pain, gland pain, chest pain, chronic fatigue, bright red blood in poo (at one point), hair loss at one point. I forgot to tell her about the vomiting and feeling sick and the sore gums and feeling at though it is raw.

I explained to her that this whole confusion and people sticking to this diagnosis of Fibromyalgia is all because of Dr Rahman who ignored my symptoms and did not want to go into too much because I was sent to him by mistake and he is not my assigned Rheumatologist. So since he noted down that I do not have connective tissue symptoms or Lupus, which I do and my blood results are showing some things, people have then made an assumption that it is Fibromyalgia and everything I am feeling is muscle pain and they ignore everything I say and just go along this "Fibromyalgia" route. I explained that I do not believe it is Fibromyalgia, and it if is, there is also another disease involved. She said that people with Fibromyalgia present with these problems and we send them physio. From what I have read Fibromyalgia is a Central Nervous System issue?

I felt like she was a bit confused and would say anything to try to make me believe her. They say I don't have a systemic problem, but then she is saying my problem is systemic and this is why I have inflammation and pain. But I thought inflammation won't cause pain? Smh.

She told me that when I see the Rheumatologist on Monday (18th Sept) that I must accept what they say. I disagreed and said that if I feel it is wrong then I will not agree with them. I proceeded in saying to her that in life if you do not agree with something someone has said that she will not accept it, so why would I accept something when I know there is something wrong and certain things are showing it just to make people happy? She again didn't have much to say and was willing to leave as quick as possible.

She told me to put a hot cloth on my glands to help with the pain and she wants to see me again in 6 months. I was going to reject the appointment but my mum said we will come back. I really don't see any point in going back there when they basically do not believe me and do not want to find out what the cause of the inflammation is.

I can see the direction this is going. They will eventually discharge me or try to get me to see a therapist because they do not believe me and think I am making this all up even though ultrasounds and blood tests are showing probles. I had such high hopes in UCLH but now I am regretting going there.

Straight after leaving that appointment I called London Bridge Hospital to make a private appointment and was given a date of 5th December. I am making a few more phone calls this morning and trying to get my medical records from UCLH so I can take it to my private appointment but it will take up to 40 days to receive. I called my GP and they do not have the results that UCLH done, only letters to explain what happened at the appointments.

Sorry for being a downer this morning, I am just feeling really crappy after yesterday and feeling like I'm never going to find out what's wrong.

Hope everyone is as well as can be.

Belinda x

21 Replies

You are doing the right thing by fighting...not giving up! Keep making those appointments with other drs until someone listens. Most drs have never heard of vasculitis. I found that out real quick. A dermatologist is a good one to go see. Google drs with vasculitis knowledge in your area. Check their ratings. Don't let them discourage you. I gave up after five years trying to get someone to listen to me that something was wrong with me. I was either looked at like a drug seeker or a psycho. After hearing this for that long, dr after dr, I quit going. I lead of life of pain. Then, I ended up in the emergency room at the hospital. They still couldn't tell me anything even with very clear and present symptoms that they saw along with fever. I was admitted into the hospital, then discharged because two drs couldn't figure it out. Had a severe attach that night, my husband took me to a different ER, they didn't know and said to see a dermatologist. Well, I did the very next day. She did biopsies, and found the vasculitis. I'm struggling now because it took so long to get diagnosed, but at least I did. I've been twice to the Mayo Clinic , but now I have an incredible rheumatologist! If he has a question, he calls my drs at Mayo Clinic. I'm not and never have been in remission, but I am on meds to help me feel somewhat better. I know have a specialist in every field. I do have a lot of organ involvement. My point for telling you all of this, is don't ever give up!!! There's always that one dr who will help you , out there. You just have to keep looking until you find that dr. Make appointments with as many as you can. You will find that dr. I'm praying the dr on December 15, is that dr for you. Good luck!!

Belinda84 profile image
Belinda84 in reply to sand120

Hey Sand120

Thank you very much. Yesterday I really felt like giving up, especially as I have been down this road before, when I was 15. They wanted me to see a therapist because they couldn't figure out why my back, hips and knee were hurting, swelling and heating up. I got so mad at that doctor that I never seeked help again and just lived with the pain, until now when things have escalated.

I really don't understand why some of these doctor enter the profession if they are not willing to listen to patients. I understand there are some patients out there who seek attention and it turns out nothing is wrong with them, however, there are far more genuinely sick patients than pretenders. When there are patients like us who have symptoms and a few out of the ordinary blood results then that tells you something isn't right.

I'm so sorry you had to battle for as long as you did with this kind of condition. Some of these doctors are really playing with our lives and it is unacceptable. I hope you go into remission one day and stay in remission x

Belinda x

aepps42 profile image
aepps42 in reply to Belinda84

Hello I have been suffering for almost a year now with swelling under scalp it first started and would come and go the last four months the pain is constantly there and is so severe I'm unable to function anymore also all the swelling feels like cords and knots and so much of my head and neck feels this way I do have other symptoms but to much for me to get into right now but I have seen two GP and both have ignored me keep saying I have tension headaches or migraine headaches I asked them to feel the swelling and they won't i got them to check the sores on top that won't heal and they just say well there not infected I know that this much swelling and sores isn't in my imagination even my husband has said he can see how bad it is in my forehead and I know that this just isn't migraine headaches or tension everything they give me doesn't help it's so frustrating that I feel as if I won't be here much longer like this and they refuse to do even an MRI or blood work they've done nothing let me suffer and cry finally have two specialist tomorrow I'm going to see hope they can end this pain but like you I fear that they are all ignorant and only want to see what they see they look at me and I have 5 children and say your stressed or assume I'm a pill junkie cause the sores anyway I hope tomorrow will be my victory and I can end this suffering good luck to everyone who knows this hell

Belinda84 profile image
Belinda84 in reply to aepps42

Hey aepps

Sorry for the delayed reply. How did your appt go with the 2 specialist you mentioned? I hope you got closer to an answer x

I was diagnosed (after nine years) by a dermatologist who sent me to Professor David D'Cruz at St Thomas's who confirmed the diagnosis. David D'Cruz also practises at London Bridge. Since I live in East Anglia I asked to be transferred to Addenbrookes. It was the most immense relief to receive a diagnosis and proper treatment. I too had to take the private route to achieve the diagnosis. Good luck.

Belinda84 profile image
Belinda84 in reply to amms43

Thank you. Sorry for the late reply. I have been feeling really crappy. It is such a pain trying to be taken seriously and having to go privately just because many doctors cannot be bothered to listen to us. I am glad you was able to get your diagnosis.

My Rheumatologist now doesn't want to see me for a year because she said it is not a Rheumatology problem, They have given me Chronic Fatigue Syndrome and Firbomylagia, so they say I need physio and therapy. I will not be doing therapy as there is nothing wrong with me in that sense and I certainly am not bringing this on myself. Good luck also x

I am so sorry it took so long -- I feel so lucky that I was diagnosed with Wegener's Granulomatosis within a week of being admitted to the hospital with paralysis, numbness, and tingling in both feet and one hand. I still have this, and have to walk with a walker. I was treated with apheresis (plasma exchange, five treatments) one blood transfusion, and lots of prednisone. They gave me neurontin for nerve pain but if it is helping, I really can't tell. My feet burn! But I also have the option of taking oxycodone, or percacet, a narcotic and that helps. I am now receiving a once a week ( for four weeks only)"infusion" called rituxan, which I HOPE will address the neuropathy, but all my doctors are strangely silent on that. Vasculitis/neuropathy seems to be a mystery. They say the new nerves will have to grow back and it will take time. ok. what about the old nerves?? Will they just keep hurting? And they say I'll walk again, go into remission. I sure hope so! Good luck and prayers your way, for all of you!!!!

Tbrz profile image
Tbrz in reply to hellojulie

I too was dismissed by dreadful ENT doctors, over a period of 2 years. Eventually, my GP sent me to A&E as said could do nothing else for me. While in hospital, under ENt, I was even coughing up blood and they discharged me. While in hospital I had days when I couldn't move and could barely see, but I was treated as though it was nothing by both doctors and nurses. Luckily, I was told to come back for an outpatient appointment with a rheumatologist; he took one look at me and admitted me straight away putting me on 80mg of pred; I truly believed he saved my life.

I have been left with a lot of issues, nerve damage in my feet being one. Like you, I have a lot of pain, walking is very difficult and I also was told my nerves would grow back; I've not noticed anything yet.

I have had the 2 infusions of rituximab, after initially having chemo and azathioprine, which did not put me into remission. I have yet to see if rituximab has done this, all I know is I do not feel any great difference - has anyone else had this treatment and not felt much difference?? I am still on 20mg of pred which has given me diabetes, and I've tried tapering down, but when I dropped to 15mg I was in so much pain with my joints and generally felt bad so have carried on with the 20 mg until I see Dr Jayne at Addenbrookes.

This disease has totally affected my life, the physical effects has totally restricted what I am able to do, which is hard to accept. The fatigue is crippling sometimes but I try to walk every day but my feet and legs hurt so much it would be easier to give up to it - I feel very reduced as a person.

Everyone keeps saying it will get better, but what if doesn't; is that something other people have experienced?

Good luck to everyone.

hellojulie profile image
hellojulie in reply to Tbrz

Oh, dear. This sounds so much Like what I am going through. Yes, my whole life is changed. We are retired and my husband helps me so much. Will let you know what happens. Prayers your way.

Belinda84 profile image
Belinda84 in reply to Tbrz

Hi Tbrz

It is really ridiculous how we are ignored and treated as though we are trying to steal treatment and seek attention. Like we do not have anything better to do.

I'm sorry you was ignored even though you showed concerning symptoms. That must have bee scary. I have now fully given up with UCLH and will wait for my private appointment to see if I can be taken seriously and get a proper diagnosis.

My Rheumatologist now doesn't want to see me until next year and wants to discharge me from her books but is only keeping me on to see if I develop Sjogren's. I am showing signs of it already but they keep on playing this wait and see game, which is annoying.

My fatigue has me feeling as though I am sedated. I explained all of this to her and she just wants me to go to the Chronic Fatigue Clinic and see a therapist. I do not need a therapist.

I too keep thinking it will get better and just as I think I'm not sick anymore it hits me like a truck.

I'm glad that you were finally taken seriously and treated quickly. That doctor definitely did save you. I'll be waiting for my miracle doctor to come along. Lol

Belinda84 profile image
Belinda84 in reply to hellojulie

Thank you and sorry for the delay. I had my appointment with my Rheumatologist today and things won't be going any further. They have left me with a diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. They want me to do physio and see a therapist, which I will not be doing because there is nothing wrong with me mentally, in that sense. I am not creating my pain and do not need to re-wire the way I think, I need for them to find out why I have pain and stop ignoring things. I told my Rheumatologist of all my pains and new symptoms and she has ignored them as well because of what everyone else has said.

She sent me for a scan in May for my foot and the man saw a problem and was willing to give me an injection, but in his report he put down that he saw nothing and did not offer me an injection. So I am not happy. These doctors say one thing and write another, leaving us in problems and having to fight for further treatment. My left foot kills me to walk.

I have to use crutches to get around. Some days I can go without, then I suffer after. Today was a bad day with the fatigue and pain, but yet still she doesn't want to do anything else other than to get me referred to the Chronic Fatigue Clinic.

I will definitely go to my private appointment to seek help and hopefully get a diagnosis that fits my symptoms.

You are very lucky indeed. I may have to move to your area to seek help. Lol

hellojulie profile image
hellojulie in reply to Belinda84

I am indeed lucky. You may hate the idea, but a simple walker is more comfortable, I think, than crutches. With a special bag or basket on it you can carry stuff. But it is, I admit, a bit Nursing Home looking. My area, btw, is Baton Rouge, Louisiana. Come on over!

Belinda84 profile image
Belinda84 in reply to hellojulie

Baton Rouge is a little bit far for me as I am in London, UK. LOL! I will look at the walkers and see if I can find anything a bit stylish. Lol!

After 8 years of misdiagnosis i too had to take the private route and was seen at London Bridge Hospital by Professor David D'Cruz. He is a good listener and continues to oversee my care liaising with the team at my local community hospital. It will be a difficult wait until 5th December, I wish you well.

Hey Mia

It definitely will be a long wait to December but I will try to be patient. In the meantime I am waiting for UCLH to send me all of my results and reports so I can take it with me to the appointment with Dr D'Cruz. His secretary has put me on a cancellation list, so hopefully they can push me forward, but hopefully not before I get my information sent to me.

My Rheumatologist as of today will not be doing anything more other than having me sent to the Chronic Fatigue Clinic. She will see me next year to see if I have developed Sjogren's and that's it. She said I do not have anything that points to any Rheumatoloical issues or Vasculitis.

What did Dr D'Cruz diagnose you with?

Hope all is well x

I have CNS Vasculitis.

Thanks I will read up on that.

Belinda, I am so sorry. You do have many symptoms that I do not have, but they do seem to fall into the auto-immune category.

My own diagnosis of Wegener's Granulomatosis took many tests and at least six doctors, and only a week. (CATscans, MRIs, x-rays, ultra-sound, and a bioipsy of both the lung and the kidney.) I had kidney damage, and nodules on my lungs.

When the results of the biopsies came back from the Mayo Clinic, I had a definite diagnosis, and a name. I also have C-ANCA antibodies, which have been removed by the pklasma exchange and continue to be removed by the prednisone. I am receiving Rituxan infusions, which attack the white blood cells (B-cells) which produce the antibodies.

75% of patients go into remission after all this, and right now I'm just praying and hoping I am one of them, and that my vasculitis/neuropathy goes away. (It is in both feet; I have to walk with a walker; and it is in my right hand.)

I get the same silence from my doctors on the vasculitis. However, the prednisone evidently can cause some symptom of numbness, tingling, water retention, swelling. It's almost something I'm getting used to. I do have a pain medicine to take if I need it. I just need to wait until the end of October to see if the Rituxan has worked. One ominous thing is that my Reumatologist had me make an Appointment at the Pain Management Clinic. Does she expect that I will always/maybe have this pain? I see her next week and ask her.

Will let you know --- hope all this medical stuff helps.

from hellojulie

I read somewhere online, during the months after I was diagnosed with aortitis. It summed up vasculitis as "more common than you think and more serious than you know". Now, my consultant says that he sees about 2 new patients a month, with aortitis, one of the nurse specialists said to me that it is rare, and that I was only the second person in 15yrs that she had ever seen with aortitis. Another nurse has said she sees it fairly regularly. I am the only patient in my GP surgery that has this disease and none of the doctors there have any detailed knowledge about vasculitis. I spent 1 day in A &E in the beginning, because my GP thought I had all the symptoms of a pulmonary embolism. I left the hospital that day, with a box of antibiotics for a chest infection that I know I didnt have, yet my crp was 210 and I had anaemia and abnormal liver function tests. My chest scan showed a slight pleural effusion and my heart scan showed cardiac effusion. I learned later, that these were reactive symptoms. I spent 5 days in hospital the next month having a battery of blood tests and scans etc. I dischargd myself on the fifth day because I was so fed up that I couldnt get a diagnosis. At the time, I was under a consultant for infectious diseases. It was down to his perseverance that 2 weeks after I discharged myself he sent me for PET scan... An hey presto! Got my diagnosis. I havnt waited for long really, probably 5 weeks in total, but I feel for everyone who has been turned away, so to speak, because their medics dont believe them. Its shocking, considering that if vasculitis is left, it can be fatal. I agree that you must keep plugging away and make yourself heard. I wish luck to you all.

aepps42 profile image
aepps42 in reply to Suzycat

For me it has been almost a year and now I feel like I'm not going to be here much longer but they don't listen I recently looked up my symptoms and I have everything that leads to this condition right now I'm thinking about how my 5 children will be without me I'm only 38 and have babies to raise but they won't even take the time to feel all the knots and cord like swelling in my head and it's also affects my neck and throat I'm in a hell that these Drs let me stay in I have two appointments with specialist's tomorrow and I hope they listen if not I will surely die soon and I also forgot to mention all the sores on top of my head that won't heal but they just say there not infected what's wrong with the medical community it's like there being paid to look the other way

Hi Suzycat

You are definitely one of the lucky ones, I envy you right now. Lol. I will patiently wait for my private appt in December, and hopefully he will be my miracle doctor who will diagnose me.

The problem with my doctors is, because a lot of my tests are negative but some are slightly abnormal they tend to think that that isn't good enough and will not cause me the problems I am stating. So frustrating.

I get so annoyed at being dismissed and then have to remind myself that a lot of us in these communities go through the same thing and then they are diagnosed. Even if it take months or years.

I am going to try and get an appointment with my GP tomorrow to talk about getting a referral to a consultant that Keyes suggested to me. In the mean time am waiting for all my results and reports to be sent to me so I can take it with me to the appointments.

Hope you are well x

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