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Discussion Starter #1
Hi All,
Just got back, Like i said none the wiser.
But way more tests, blood, urine, chest xray, xrays on hands & feet, & bone & muscle tests (neurolgist i think).
My family DR did not even send any test results that he or the other Dr had done, she only had the letter of referal, so glad i got the test results.
She did say that she could not give a diagnosis on the ANA & ENA test results alone, because all the other tests done were normal.
Real sense of dread again!!!!!!!
So it's just a waiting game again, i could have to wait upto 6 months for the bone Or the muscle tests.

Sandra......
 

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Pollianna
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So sorry sandra, can't believe they didn't offer you more. You must be so dissapointed. It took me 6 months from initial consult to get the diagnosis and more importantly the medication. keep going back..:hug:
 

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Discussion Starter #3
Yeah i know, i'm sure i've forgotten somethings she said but will remember in the end i hope.
As i am an ex pat maybe i should come back to england just to see a specialist in london??????????
Would that be worth it?????????

Not sure how i feel at the moment.

Sandra.....
 

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(((Doris)))
Your doctor took more labs and tests, she didn't dismiss you, I think that is a postive.

I know it must be so frustrating having to wait.:hug: Like Pollianna said keep going back.

Love,
Lyn
 

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Discussion Starter #5
Thanks, just really tired it was a long day.
 

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Pollianna
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Definately worth going to the london lupus centre. I had seen every specialist in my city and not one of them joined the dots until ten yrs later i saw Dr D'Cruz there. Take some time out for a little while to get over this and then back on the horse girl, we can't let them gind us down xxx
 

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Discussion Starter #7
Hi all,
I've just been on my other group, and someone mentioned that you don't have to have other organ involvement to have SLE????????

Sandra....
 

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That's right. Only about 50% of SLE lupus patients get kidney involvement. Many will get the joint pain, fatigue, rashes only. Those are my main symptoms but I've also had pleurisy which could be viewed as some type of organ involvement.
 

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Discussion Starter #9
Thanks Maia,
i thought as much,
just have to keep pushing with it i suppose.
 

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The Other Illinois Tammy
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Sandra,
Hang in there it will come. With the new test and results everything will be fresh and clear this way. It might be a good thing that it is all being done now again. It might be 6 months for some of the tests but the other will be back sooner and give them an idea what is going on and an answer before the other 2 come back for a beginning of treatment. We are still here if you need us anytime. I hope you are doing well and feeling well.
 

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Discussion Starter #11
I'm doing ok,
I know i was looking for her to look at everything & BANG yes you've got it,
Story of my life, It's just 10 yrs of struggling, & still nothing.
AAAHHHHHHHHH.
 

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Discussion Starter #12
Just thought drop a line, i went to see my chiro and was telling her about going to see the neuro. i told her about the pain i was getting around my kidney area and My family DR said it could my back muscles, so she asked me to do some tests, like stopping her from pushing down on my arms & legs, which as the rhuemie found out i have no strenghth in either to stop it, she seemed very concerned.
I have found that in the last week i am in so much pain in my hands & feet, headaches, and muscle pain which at times is really bad.
The fatigue has been unbearable, And just feeling yukey.
Should i be worried about this muscle thing, as i have noticed since i started at my present job, over 3 yrs ago. That i am alot slower and find i can not lift any thing to heavy now, and the slightest knock to my nuckles is extremely painful.
Sorry about whinning, but i don't know what to do, i need stronger pain meds but they won't give them to me yet.
Sandra......
 

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Hi Sandra, I have definitely got weaker arm muscles since I have been ill with MCTD, not to the point where the Rheumy is worried though, lost flexibility too in right arm. I know you can have a muscle biopsy to see if it is in the muscle but Rheumies can be reluctant to order these as they are quite expensive etc etc... If you can't put up any resistance to normal strengh tests then I would be wanting it to be taken a bit more seriously, even if physio was ordered then you would be being monitored a bit more closely. I don't think I can help much more than that, others may come back with some helpful suggestions... take care of yourself, keep plodding....:(
Claire X
 

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Hello Doris, if you do see Dr. D'Cruz he will thoroughly assess what your muscles can do. It is quite correct that many people do not have organ involvement, but they still have a lot of miserable symptoms and ideally need good monitoring and support.

If it makes you feel any better I wasted many years being undiagnosed. When I saw Dr. D'Cruz he took me seriously from the first appointment even though my bloods then were negative. He started helping me straight away and the formal diagnosis followed very quickly. Just a case of seeing the right person for me.

Dr. D'Cruz is great, Prof. Hughes is a real Gentleman and Dr. Chris Edwards at the London Lupus Centre is very kind and easy to talk to. Any one of these I can personally recommend. It is money well spent, and although no one likes paying out, it is good value for what it is. Blood Tests tend to increase costs because private Lab fees are so high, so if money is an issue just tell them ,they will not lumber you with big lab bills.They are very fair.
x lola
 

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Hello Doris, sorry that things are so tough for you at the moment. I don't know if you keep a diary of your symptoms at all, but I have found this to be very helpful, both for myself, to identify a pattern and for the rheumie. Hope that you feel better soon.

Take care

Deb
 
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