[Mystique]

Hi all,

Following my first rheumy appt. on the 25/8 I received a phone call today from my doctor stating that my blood tests have come back negative for any signs of inflammation, therefore everything appears to be ok. He did say that other specialist tests taking longer to come back but im having doubts now and feel like maybe things are not what I believe them to be.

My follow-up appointment is not until January 2010 which leaves me to think that unless something drastic happens to me, then I am just going to have to accept things the way they are right now.

I have not told any of my family about the symptoms I have been experiencing or the way that I am feeling because I feel like they really wouldnt have a clue.

Right now I am experiencing intermittent joint pain especially in my hands, elbows and knees. I went out on Friday night and found the music to be too loud for my ears and I have had constant ringing in both ears ever since. I have inflamed gums/gum disease which causes my teeth to be sensitive. My mouth always seems to be dry and my throat which tends to feel sore in the evenings. I also get sudden sharp pains in my neck and back. I have been feeling very tired for the past week.

I dont really want to go and see my doctor with all sorts of non-specific symptoms as I am really starting to feel like a hypochondriac. I am trying to find a job but cannot put my all into it because I know I am not feeling 100%, I am currently working part-time on a voluntary basis.

Sorry if this thread is abit long but I just needed to express myself.

Thanks for listening.........

 

[debatat]

Hi, don't feel too discouraged, not all the bloods are back yet. Also sometimes it takes the bloods time to show anything or to catch up with how we are feeling, if that makes sense. Diagnosis of a chronic illness always is a slow process it is unusual for it to be quick. Docs like to be sure before they give a label.

Are you keeping a symptom diary? This can help see if there is a pattern.

Take care

Deb

 

[KarolH]

(((((Mystique)))))

I want you to know that what your going through is not all in your head and your not a hypochondriac!!! It is very frustrating when we know we are ill and things with our bodies go haywire and yet the bloods look great.

My inflammation markers are never very high and typically my crp and esr are almost normal and yet you could look at my knee or my wrist and clearly see that it is twice the size of the other one. Makes no sense yet provides insight that we can have inflammation and yet our blood work not show it.

Keep a symptom diary and take pictures of any swelling, rashes, etc...that may occur. This is very helpful while you are in this period of the unknown. I also have heard that it may be good to take your temperature every night at the same time and log that into a journel as well.

You know your body best and I always tell people to push forward and don't give up until you have answers. Auto immune illness can take a long time to show up on blood work and until then we have doctors that are not willing to look at the whole picture. They sometimes take a stance that if the bloods are normal then nothing is wrong. This could not be further from the truth.

I went years feeling horrible without a true diagnosis. I started with Anxiety Disorder, then Chronic Fatigue Syndrome, then Fibromyalgia, on to Multiple Sclerosis, next was you may have Lymes disease or Hepatitis C and eventually the blood work, after many, many years started to show the abnormalities and thus came the correct diagnosis for me of Mixed Connective Tissue Disease.

Moral of the story, I was sick but my blood work was picture perfect! Don't give up and please don't doubt yourself. Push forward and keep on until you get some answers. Eventually you will but unfortunately it can take years.

Keep us posted as you move forward. Sending you warm cyber hugs.:wink2:

 

[misssay]

I feel your pain!!! both physical, mental and spiritual! I am in the same boat with having many things wrong, yet as hard as I have been searching for help, I seem to find nothing. Everything that has been done has come back normal....It is so frustrating!!! and there are times when I feel like maybe I am indeed just crazy.... but I know it is not so! I like to think of myself as an out-going fun person, but when you constantly are in some sort of pain or disstress, its really really hard to let go and enjoy yourself. I will muster the ambition to go out or to a party, and usually end up leaving soon after I get there. It is terribly frustrating for my friends, family, and most importantly my boyfriend (though as frustrated as he gets, he is WAY supportive.)

I can't really offer you any help or advice, just tell you that I know what its like, and I'm really sorry..... I wouldn't wish this on anyone.

good luck on getting things figured out... There's gotta be hope for us somewhere.

 

[Mystique]

Thanks to all those who took time to read my thread and also for your responses.

It is unfortunate that most Drs. are not willing to treat patients with particular symptoms unless something shows up in their blood work.

I feel like I have the body of a much older person even though I just turned 38. For the past couple of days I have been feeling the change in the weather and the cold gets to my knees which causes me to have severe joint pain. With me complaining about things hurting etc. my husband keeps calling me an old women. I just wish I could say to him "the reason why I am getting these pains is because I have or believe I have some type of condition" but I dont think it would go done too well. Besides I would rather be certain of things before I start discussing it. I havent even mentioned my visit to the rheumy, although he was aware that I had a hospital appointment.

Although no one really wishes to have a disease, I need to know what is going on with my body as I am definatley not feeling as young and fit as I use to and get tired so easily from doing a bit of housework. :worried:

I have three children who I do most things for but I am really finding it difficult to do as much as I used to.

I have been keeping a symptom diary since May '09' but although I do have a rash on my face which comes and goes, it is not that noticable to others especially as I have dark skin.

Here's hoping that something changes for the better soon............

 

[KarolH]

Your right, we do not wish to have a disease..................JUST A ANSWER.

With 3 kids that is a challenge in itself.

I sure hope you get a doctor to help you and get on with feeling better soon.:wink2:

 

[countrylass]

Hiw elcome to the site
im also awaiting results november lol

yes totally with u there want to know what it is but dont want a discease,i was told inflammatory arthritis then RA the sero negative ra,now polyarthitis/Lupus.
I have inflammed gums/mouth for some months now along with red inflammed butterfly rash on face cheek across nose.
sunlight and electric lights make it flare along with stress.got joint constant inflammation in bloods along with dry eyes,mouth,los of mobilty.
im also 38 blimey feellike old lady sometimes.cartn control body temp it spikes evry high to pont nearly faint then low to point shivery cold.

fighting that with help from these lovely members on here.
take care lv countrylass

 

[x_claire_x]

hiya.. just wanted you to know that my bloods were perfect the first set they took last August, but the auto immune results took a week or so longer to come through.. I wasn't told until the next consultation 6 wks later that my ANA was raised and Rnp positive.. at that point you would think alongside the physical symptoms he would have diagnosed me and put me on plaquenil... but no, he just said I will know if there is something wrong because it will be dramatic... oh it was!! ended up hospitalised less than 2 mths later and kept in the assessment ward as it was so dramatic!!! I did then get my diagnosis so it was only 5 mths in total so I am thankful for that, I have MCTD .. a mix of lupus, scleroderma, raynauds and I already am hyothryoid....like the others have said don't assume they know your body better than you, things aren't right and you know that so be sure in that knowledge and push forward for the answers..... my next set of auto immune bloods showed the RNP had reverted to normal (done at Lupus Clinic in London).... so it is a bit hit and miss, but I felt terrible and I can tell now that the weather is changing because I ache so much again at the moment despite having been settled on plaq, and pred 7mgs... ah well, its the nature of the beast... all the best..
Claire XX