Quix, Jenn, please help - got answers

I was on the phone to my local surgery today and a temp told me that they have been lying to me - she said that when they suspected ME 2 yrs back I actually tested positive for a virus and they did not tell me!  I had mumps, for which I thought I had for three weeks - wrong!  I had mumps for a LONG time!  I may still have it.  The lump under my ear came up when I had mumps, it never went back down again.  When I eat, I do still sometimes get pain when I put food in my mouth, and I do still have trouble swallowing.  But how on EARTH can a person have mumps still in their system and their body not fight it?

My white cells fought off colds etc... they were up when I had cold, but when I tested positive for mumps they were normal, in fact my entire blood count was normal!

And also... Lupus test, the GP said they did it, the ANA - they lied, they NEVER did it, they had it down as ANXIETY and DEPRESSION.  This temp told me all of this.  

I originally rang the results desk to find out what has been done so that when I go in today requesting more tests, i.e. hormones etc... I wanted to know what was ruled out.  Not much apparently!

So I could have lupus, I don't know.  I could still have a virus in my system.  It would explain why, in August 2005 a friend of mine got mumps out of nowhere and he was only spending his time with me!  I had mumps in May 2005.  Jeez, can that be possible?  Can someone have it in their system that long?

I'm shocked.

[quillswriting]

Been to my GP surgery today, they have not referred me to the Neurologist, they refused to insisting that I am mentally ill.  I have, however, managed to get tests arranged for autoimmune disease including ANA, Lupus Titer, ESR, FSH, Kidney and Liver function.  They;re checking my hormones too.  

I can't believe this.  I have actually considered suing this surgery, I have phoned another surgery and luckily they have some room, so I am registering with them.  

The UK is terrible with its doctor's service.

[jenn38018]

Sorry, I haven't been on much because I haven't been feeling very well and school is starting back up for me tomorrow.  I can't believe you have had some many inconsistencies with your doctors!  No wonder they think you are mentally ill!  You don't know whether you are coming or going right now.  

I don't know a whole lot about mumps, but I would think that you should be careful around your infant if you are carrying an infectious disease.  I don't know if I have asked before, but are you nursing?  The mumps could also explain why your husband has not been feeling well either.  Has he been tested?  

Definitely push for those ANA and lupus titers.  Many of your symptoms do fit into the category of a connective tissue/autoimmune  disease and you should really stay on top of that.  

I really pray you get some answers soon.

jenn

[quillswriting]

Hi Jenn,

The GP said mumps stays in your blood stream for weeks after so aparently that is normal.  I have the test form to take for my bloods to be done.

Had a terrible do last night with a panic attack, it sent my heart rate way up, took a beta blocker and it didn't help.  Took my regular one this morning and my heart rate is still up a bit.  I have had constant butterflies in my stomach since last night, so I think it is adrenalin causing the racing.  My baby was crying last night when the attack came on last night and it just went up and up with the rate.  So scary.  My neck then went into painful spasm and I had pain all down my neck and shoulders.

Spoke to my mum this afternoon and she really thinks I have the same as her, I described the spasms in the back of my neck causing my head to jerk, and that it gets bad when I am tense.  Some days I don't really get the jerks, and some days, especially if I am wound up I get them a lot!  She said she has had the same problem for years, plus the neck going into spasm.  She told me I should have the bloods done and get an x ray of the neck and spine.

I do have a funny shaped spine but I dismissed it!  I have a bone in the back of my neck that is very prominent, it sticks out at the back, sometimes it doesn't.  Also, my husband agreed with her saying that my spine is curved outwards a little bit in my lower back.  These problems occuring after baby could all be to do with the birth, I injured my coccyx giving birth also.  I still get pain there from time to time and it can be immense.

My mum said that if I have a condition affecting my neck and spine I will get the neuro symptoms because it's all to do with the central nervous system being affected by the disks in my neck.  

Admittedly, 2 yrs ago when all this started originally, I had tingles and things shortly after someone did a dodgy massage on my neck, I was getting all sorts of tingles and pin pryck sensations.  My mum was pushing then for me to get tested for the same condition as her.  She agreed that my spine is not perfectly shaped and that she suspects that because her condition is hereditary, that it is far more likely to be that.

I have arranged to register with a new GP, I rang around yesterday and found one with some spaces for new patients.