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.