[Woo]

Hi All

Been to see the consultant... felt like I was an inconvience as I was the last patient of the day...

The good news is that it's not Lupus or RA he's said I have early onset osteoarthritis. My x-rays confirmed this.

As to my blood work, my lympocytes being low or my ANA being at 1:1000... one of those things. Tiredness... hey one of those things. Apparently I need to lose some weight and work through the pain as it won't do me any harm. This is the pain that won't allow me to get out of bed some days and wakes me up in the night!!!

His words were it's incurable, theres's nothing else going on and you're being discharged, you can ask for a referal back here but I'll tell you the same thing.

I'm at a brick wall, I'm 34... my husband thinks that can't be it as no-one should have this at my age.

Advice please; has anyone known of this connected to lupus.

I'm back to square one, but I suppose the doc knows best and I'll get on with things. End of rant....

Thanks for all you support and good luck in the future to you all.

Woo.

 

[cuteynblue72]

I am glad that he did say it was not Lupus . Personally I have osteoarthritis also along with the Lupus. If I were you I would just keep an eye on this because just because the test results are not giving you a positive diagnosis yet it still could be for example for 3 years they thought I did not not have Lupus but glory be I did. Do you have any other symptoms of the disease? Well I hope you do well and you take care of yourself. Laurie:wink2:

 

[Woo]

Hi Laurie

Thanks, I'll keep an eye on things and nag my doc, I'm being dragged there by my husband today as he want's answers.

The main symptons are the joint pain and fatigue. My ANA is high and my lymphocytes low. I found that I match 3 of the criteria plus some of the alternative criteria.

I've previously been diagnosed with RA due to test results, so was that really wrong???

The weird thing is is that I'm trying to find info on osteoarthritis but all I can find is that it's unknown under the age of 45-50... great... in that case why didn't the doc question why when this flared up at 29-30. Some symptoms match it and some don't. Surely with an ANA of 1:1000 they would question that.

It's 4 in the morning and I can't sleep due to the pain I'm in...

I guess time will tell.

Thanks again

Woo

 

[rwb200]

Hello for information on Arthritis of any type I would go to Arthritis org.
They also do some testing on lupus so there is a limited amount of information on it as well.

I'm not sure where you are located or how hard it is for you to get with another rhuemy.
But if at all possible I would do this.

Not sure hwer you got the information that OA is unheard of under 45-50 but I can say with out a doubt that is wrong.
It may be the age when it is typically found and cases younger may be rare but it is not unheard of.

My wife was diagnosed with OA in her 20's.

You ask if the other diagnoses for RA is wrong. It is very possible to have both.
They can tell the diference by the areas effected and how it effects them.
As for my wife she has OA, RA, SCLE and SLE.
You can have a diagnoses of any or all of these together.

At very least you should have been given information on what you were diagnosed with, been told ways to help and some sugesstions on what to do when you have trouble.
Not told you have this loose wieght now don't come back. That is pretty much how I would take the comments you wrote.

If you are in the US you can write to the Arthritis Org and get some information sent to you. You can also join it and get a monthly magazine and alot of information and suggestions from it on what helps.

Not sure if you are outside the US. But you should be able to google it and find if it is in your area.
In the US some local chapters have classes for people to teach them to deal with this, they also have exercise classes in some areas designed just for people with Arthritis. Many times they are done in the water because it helps alot of people who are limited on mobility to complete the classes.
There is a small cost with either of these but some find them very helpful.

 

[Woo]

Thank you for the info, and yes you summed up the conversation perfectly.

I'm in the UK and I'm seeing my GP this morning and will see how things go.

I've also got some phone calls to make to get some advice as well.

Thanks again

Woo

 

[purplesnowflake]

Good luck with GP.
I was diagnosed with OA in my knees at 19.?!
They only seem to play up when everything else does though.

Hope you get on ok and get some answers.

Take care

 

[mysharonna]

I was diagnosed with severe OA in my ankles at 26 based on an MRI I had due to so much pain in them..from everyones posts, seems its not as unheard of as one would think!

Good luck with your doctor today and let us know what you find out!

Sharon

 

[sushi]

i was dxd with very mild OA at age 38. I was surprised because so far it has never bothered me.


i always wondered if it was caused by lupus.

 

[LolaLola]

Hello Woo, this sounds pretty dismissive to me. I still think Lupus needs keeping in mind, any chance of a better Rheumy?
x Lola

 

[Woo]

Hi All

Thanks very much for the words of encouragement.

My GP said that he wants to wait for the letter from the Rheumy. He's keeping me on the diclofenac but jiggling the dosage so I have less more often. He seemed suprised but said I need to be careful about questioning the diagnosis.

He wants to see me the end of next month when I'm back from holiday to discuss options. My husband has even said we will go private if that helps.

I still can't get over the Rheumy yesterday though, he also said to me that he has OA in his hands and copes with it. The guy must be in his 50's!! My hands hurt so much that I can't even look after my baby properly sometimes and have to smile sweetly at my hubby. The Rheumy wasn't even interested in my pain levels or how it affects me, dismissed my bloods both from recently and going back over 4 years. Oh and the classic was "it's pain but harmless pain so just work through it"

I've read that OA can occur either as primary or secondary. I don't understand why it's my hands and feet. If it were to be anything it would be my knees as I've done quite a bit of damage to them in the past but they're fine. Just bizarre!!!

I'm not a doctor though but will continue to nag mine as I feel I need to, overall though my GP has been wonderful.

I'll keep you posted as to how this turns out.

Thanks again for all the support and advice.

Woo

 

[Maia]

I would prod on and go to an expert in rheumatology if at all possible.
OA is not unheard of when you're young, but it's not common either. I would almost think that people with a connective tissue disorder may be more prone to getting it when younger as well. Any trauma to the tendons/etc results in inflammation and the body just tries to solidify the area with calcium (& with our autoimmune diseases attacking that connective tissue all the time - makes sense OA may set in earlier than normal). This is just my personal thinking though - I have no research studies backing me up on this. But I may start a search on the topic soon as you've got me thinking!

Do you know on what basis you were diagnosed with RA a few years ago? Did medication for that help your symptoms? An ANA of your titre (1:1280 or maybe you had another testing method done?) should be enough to be taken more seriously than you have been treated by this last rheumy. It sounds as if you can't be officially diagnosed with lupus, but that doesn't mean there isn't something autoimmune going on! And treatment may be able to help you greatly - treatment beyond NSAID's of course. Furthermore, seronegative RA is actually fairly common. About 1/2 of people diagnosed with RA have no positive rheumatoid factor and lack other positive results.

Good luck - keep on. You deserve to be taken much more seriously than this.

 

[BigSis]

Hey Woo,
I think you are right to be suspicious of this rhuemie's diagnosis.
He was too dismissive of your symptoms.
I was also under the impression that OA was more asociated with wear and tear on the weight bearing joints.....less so in the hands.
I wish you the best of luck.

 

[cispence98]

Hi I would get a second opinion myself, I did when I was diagnosed I went to 4 doctors to make sure, I was diagnosed by a fluke by my gastro doc then I went to internists which confirmed then 2 Rheumys that confirmed. The fact that he told you, you can come back but I will tell you the same thing seems like he has already classified you and is not going to investigate any other possibilities because it can all be blamed on his initial diagnosis.
Be careful my dad was diagnosed with osteo and was being treated for yrs before they realized OH maybe we should check his RA factor:wall: sure enough through the roof and damage from not being treated properly, it does not hurt to get a second opinion go with your gut if you think there is something else going on see a different doctor my suggestion tell him your meds but not diagnosis so that he/she can look with an open mind and not classify you from the get go!!:?
Good luck and I hope you feel well!! :wand2:

 

[Woo]

Thanks again for the encouragement, I've spent the past 2 and a bit days crying in frustration and pain. My RF was negative, and my results say I am ANA positive at 1/1000 with levels of 160iu/ml.

From looking into this I understand this is high and is of significance, please correct me if I'm wrong.

Can anyone advise how I can push for this to be looked at again, my GP doesn't understand ANA levels so I'm stuck and I don't want to be telling him his job. Who can I go to who would look at this?

Thanks again

Woo

( I so need a holiday )

 

[Maia]

Yes, an ANA of 1:1280 (or it's near equivalent) is usually very significant for an autoimmune disease causing a level that high. I would not go back to that same doctor... is it difficult to ask for a second opinion? That's my suggestion - it depends on where you live but you may want to look through the "Find a Doctor" section and see what's there or post yourself for a suggestion on a good doctor.

I would wonder if this doctor can tell the difference between RA damage in the hands visible on x-ray and OA damage! You may be interested to know that about 50% of those diagnosed with RA do not test positive for the rheumatoid factor... these are the seronegative cases I was referring to earlier.

Good luck finding another opinion from someone with a more open mind.

 

[Woo]

Thanks Maia.

My sis is a nurse and she said exactly the same thing.

I just want to make sure that they are treating me for the correct thing.


Woo