[The Miss]

Hi all just wanted to introduce myself ,
not really sure if I belong here , however I am 26 and have been dealing with an abundance of re-occuring of unpleasant symptoms on and of for quiet some years, these are :

- aches in my joints sometimes only one or two sometimes the lot
-constant fatigue
- blurred vision
- raynauds (unless I can seem them I am not aware I have hands and feet 80% of the time
- nailfold telangictasia (unsightly but also annoying as they constantly burst and bleed)
- abdominal pain (had my gallbladder out aged 13 , but still have attacks)
- dyspepsia
- rashes on my face , palms and scalp
- difficulties sleeping
- unexplained fevers
- unbearable PMT
- depression and anxiety attacks (at times when I dont feel remotley anxious)
- hair loss
-low iron levels
-difficulties swallowing

Have always belived that these things were random occurences but in the last two years I have been getting this weird thing were I suddenly develop extreme pain in all my joints and basically seize up and am more or less unable to move. This usually responds well to anti-inflammatories and painkillers but it got me wondering if these random occurences werent actually so random after all .

When ever Ive so much as suggested this to any of the G.P's ive seen in the past I always found them to be relativley unsupportive and feel that any tests(usually just routine bloods) they have done been in an attempt to fob me off. When these have come back negative Ive never bothered to pursue the matter and have felt like a hypocondriact and just tried my best to manage these symptoms any way i can.

Had the latests bout of this joint thing about two weeks ago and decided that it was time to get to the bottom of this . So I hobbled to the doc's, he seemed quiet understanding and did some bloods (ANA & RF). So I left pretty pleased with myself as to date none of the other Docs Id seen had ever bothered to get that far.

Got the results back today apparently I have a weak positve result for RF and negative ANA. Doc suggested that may be a result of some sort of viral infection. My response was very good ,that can explain the instances where all my joints are effected but what about the other stuff??? His response was to tell me that he had three patients like me with lots of complaints and that there was no where he could refer us because of our none specific symptoms????? He then went on about chronic fatigue syndrome (as far as I am aware that dosent cause all the stuff I experience or does it ?) Anyway to cut a long story short he told me he'd keep prescribing me anti-immflamatories / pain relieve etc and when I told him I couldnt keep taking that all the time because it irritates my stomach and makes me vomit bile he threw in a prescription of omeprazole for good measure . Shouldn't be to hard on the guy, because actually he's been one of the better Doctors Ive seen.

Anyway he's gonna repeat the RF in a couple of months and depending on the results he said we will go from there but that was only because I looked like I might burst in to tears by the end of the appointment.

Am supposed to see a G.P who's specialism is dermatology on monday with regards to my skin complaints so maybe at least I will get thoose sorted.

Sorry for the long post ,but really am at my wits end with all this stuff though I am pretty assertive usually , I find Doctors quiet intimidating Any ideas about how I should proceed would be most appreciated

Thanks

 

[sam101360]

Hi:

All are welcome here! Sorry you are having such a hard road to dx. Couple of suggestions,

(1) Ask your GP for a referral to a Rhumatologist based on the positive RF, this way the rhumy can do more research on the symptoms.

(2) Ask the dermatologist to do a skin biopsy, start with one of the lesions if he balks and ask him to screen for the lupus band.

either way you might then get on the road to a dx and treatment.

Good Luck and welcome aboard!

Stephanie

 

[The Miss]

Thanks so much for the advice,

Will try my best to not be scared and suggest this to the Doc on Monday. Fingers x'd he will pay some attention

 

[Maia]

It sounds like you're going to get somewhere with all this soon. Do your joints actually swell and become red when they flare up? Have they tested your ESR (SED rate) when your joints are problematic? If you're concerned about lupus then a urinalysis should be done too.

Good luck at the doctor appointment for the skin issues, and I hope you get some answers soon.

You may find it interesting that up to 50% of people diagnosed with rheumatoid arthritis test negative for the RA factor. Someone I know has that dx but tests negative on all autoimmune antibodies. However, she clearly has it as the pain and swelling are very extreme without medications to control it (methotrexate, Plaquenil, prednisone).

 

[LoopyLoo]

Hi and :welcome:

It is possible for results to appear vague not just for lupus but for other auto-immune conditions so it's a good idea for your doctor to carry out tests every so often to track any changes.

Keeping a diary of symptoms is also a good way to notice anything that changes month by month.

Hugz,

Pam xxx

 

[LolaLola]

Stay with it, will be hoping you get a breakthrough soon.
x Lola

 

[The Miss]

Thanks for the support guys , keeping a diary sounds like a good idea (not sure how the docs will react when I started quoting from it though lol they will probably try and get me sectioned !!!)

As for the joints Maia I do get some swelling and rednes in my fingers which are usually badly effected when my joints flare up but thats about it apart from that its just crippling pain that has me walking around like and extra from night of the living dead. I had an operation several years ago to remove extra bone growth from my feet and I suffer from temporal mandibular disorder which if I remeber correctly are both arthritic conditions???

To be honest I think as soon as they see depression in my notes , its just much easier to put all my wierd and wonderfull symptoms down to that

Was also thinking about trying to get a copy of my medical records so I wade through and try and figure out when this all started , this stuff all goes back years and I know that alot of it is still on paper files which the docs never look at. But that would probs go down like a lead balloon Any body else done that?

xhugs to allx

 

[sam101360]

Hi:

I had TMJ as well. Long time ago...lol 1984! The Maxo-facial Dr did surgery on my left joint and replaced the pad with a teflon pad. I have not had a bit of trouble with it ever sine. Once they corrected the left side, the right became OK and didn't need surgery. Didn't even know I had lupus then! But Rhumy said that I had it even gthen, probably just not as active as now.

Stephanie

 

[mysharonna]

Hi,
Just wanted to welcome you, everyone has given you really great advice!
The diary is an excellent idea, it does not have to be pages upon pages...keep it simple... chart when you have pain, problems or anything out of the norm.

After I was diagnosed, I started thinking and realized my problems started in my teens with the weirdest medical things happening...no one put it together either. Requesting all of your records, may confuse the issue, its alot to digest. Start with the list on your first post...seems enough to get the doctors talking one would hope!

Best of luck to you,
Sharon

 

[Maia]

I would recommend getting copies of past blood test results and doctors notes for your own personal reference. Sometimes it takes the patient to connect all the dots from past history and testing, as doctors rarely have the time to review all of that. You will need to learn a lot about the various blood tests, which you can do on this site and there are other good ones out there too of course that may be more relevant for other autoimmune diseases.

I agree with you on the tendency to dismiss it as depression - I think that occurs far too often too from things I have read/heard.

Let us know how it goes on Monday! Good luck!