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Discussion Starter · #1 ·
Hello Everyone,

It's been some time since I last posted. But, here I am to say . . . I finally got the news. It took three rheumatologists and I'm on my way back to the third neurologist . . . who, by the way, when I first saw him told me I needed to be under the care of a rheumatologist (he was really a nice person) but told me with my blood work and symptoms I needed to see a rheumy first . . . then, if need be, come back and see him. (NOTE: my first rheumatologist I saw I only saw twice and little did I know he was on the right track by sending me to a neuro (only she didn't know anything . . . poked me with a safety pin and basically said in a nutshell "I DON'T KNOW WHAT TO TELL YOU"). . . . . . . . . . Then, we moved out of state so I wasn't able to follow-up with him (the 1st rheumy) . . . another story . . . BUT . . . bottom-line it seem it's CNS or NP lupus.

I could go on with a very, very, long story but all or most of you already know it. The pain, the anxiety, the "PLEASE BELIEVE ME, something is wrong"! I think the localized brain lesions finally did the trick. Not to mention the positive ANA's, significant neuro symptoms, and other positive blood work. It's not a good thing to have but, hey, to have the validation feels as though I've been vindicated to some degree. I'm an LPN and have been for 26 years and that's about how far back my symptoms started. I knew what was wrong the past few years and my medical knowledge is supposed to be limited compared to a doctor so, . . . why didn't they??? GOOD QUESTION! It's shows that everyone needs to hang in there and fight and please believe me when I say when things first started getting bad a few years ago . . . my GP and I just about went "toe to toe" . . . LITERALLY! . . . and I'm a pretty nice person, I think:lol: So, if you think you've been labeled a neurotic imbecile . . . you're not alone by any stretch of the imagination.

Again, my story is a long one and there may be some holes or missing info in the above and that's okay because what I think I really want to say is there are many of you who have been a strength to me on this site and I'm thankful for that. And, also, for those who are still "IN THE BATTLE" phase of a diagnosis . . . doggone, hang in there!! It's taken me many years although more significantly the past 8-9 years. My doctor (this last rheumy) did tell me the treatment for what I'm looking at may be worse than the illness itself and I'll may have to weigh that one out (chemo, I believe) but, I'll cross that bridge when I get to it. So, for now, I hope this may have helped those of you who are looking for answers to know the they're out there. Again, I turned to this site many a times and now I'm able to say I finally found the answers but it took the right doctors too. I hope the best for all that may read this and know there are many that will stand by you. Take care to all, Roberta
 

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Hi Roberta,

I'm glad to hear that you have finally got a diagnosis. As you say, you must feel "vindicated" at this stage.

I hope that now that you have found two good docs and have stopped moving, they will be able to treat you more effectively. I think that the only thing you can do with threatment is take it all a day at a time and see how it goes. One person's experience may not be yours as it can vary so greatly. I hope that if you do have to have the chemo treatment it works well for you. There are a few people here who have had that treatment.

bye for now,
Katharine
 

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hi roberta, it is wonderful that you are so assertive when it comes to your health, and getting the right dr to take you seriously enough is paramount. i think that if this new dr hadnt come to my health centre i would still be getting prescribed painkillers and trying to be talked into taking antidepressants. one dr even implied that i wasn't even trying to get better because if i was i would take them!!!!!!

gosh, chemo is a big step and will take some thinking about. also, try to adjust your diet to support chemo therapy if you do go ahead.

it is heartening to read your post as you sound so positive and i could do with some of that right now since being dx in january 08.
 

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Dear Roberta,

I am glad you at least now know what is what. Of course,there will be a sting in the tail in that you will have all sorts of feelings but it is good that you could come here and think of others.

I once came very close to needing Cyclophospamide after a real brain scare but luckily managed without. I still have some brain stuff but it is manageable especially as I am on Disability. No way could I earn a living!
x Lola
 

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:) Hi Roberta, at last, a diagnosis, wow it sure took long enough, didn't it? Anyway, I am very sorry of the kind of DX, I would think that it will take you some time , alone in your "safe place" to figure out just how to deal with it. But
deal with it you will, cause that's the type of person you are. And that is what I mainly wanted to appalude you on. You post is going to be of such a great help to those who are still undiagnosed. Your take-charge attitude, your not giving into believing that it is your imagination, the fact that you kept fighting and you kept following your gut. You are an inspiration to many and I wanted to say so. I hope
that you will come in and post every so often,and let us know how you are. Blessings to you, and be well.:wink2:
 

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Hi Roberta

I am glad that you have a diagnosis after all this time. You are right though you must continue seeing doctors until you have found someone that will listen and help you.

Good luck with your treatment plan and I do hope that you start to feel better really soon.

 

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Hi Roberta

You certainly are an inspiration to us all. To have a diagnosis after so long must be a "relief" to be proved right. I know it has spurred me on to press for a diagnosis, whatever the outcome.

I can't advise on chemo as I have no experience of it but my personal opinion is that I would have to consider all options and research thoroughly on the drug regime before I committed myself. If I was offered it at this moment I probably would say yes, just to improve the quality of life, and to be able to be a Mum to my kids again. Whatever you decide, I know you will make an informed decision by your very nature of profession, and we will be here to support you.

Big ((((((hugs)))))) to you.

Love Judi xx
 

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Hi Roberta

What a wonderful post :) Truly a 'spine stiffening' inspiration! Thank you for posting it and I hope it gives comfort and hope to others in a similar situation.

I want to wish you the very best of good fortune and treatment in the coming weeks and months and I sincerely hope that the medications proposed will be of benefit to you in the long run in terms of quality of life, etc.

Take good care and let us know how you are getting on

Luv n stuff
Joan:rose:
 

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Discussion Starter · #9 ·
Hello again,

Just a quick thank you to those of you who have responded and perhaps a little more info for those that may read the posts. I just wanted to mention that the 1st rheumatologist I saw put me on Plaquenil and diagnosed me with UCTD. The Plaquenil made all the difference in the world . . . it didn't take away all the problems by any means, but did give me back some semblance of life.

Just a little side note: I happened to work today . . . I fill in for a doctor I used to work for years ago and for his P.A. Both have been extremely supportive . . . even on days they've called me to work and I haven't been able to go in . . . it wasn't a problem. Today we were able to talk about last week's appointment with the rheumatlogist . . . anyway, I basically told them I would follow-up (as directed) with the neurologist but I wanted my treatment/care to be given of by them. They agreed to the max you might say. I can't explain what a comfort this is for me. When I lived in Colorado . . . it was a nightmare! Again, I say this because I wanted to wrap those "doctors" in a chair with duct tape, make them sit there and listen until they'd have no choice but to commit to my care, commit me, or commit themselves by the time I was through with them!!! There are extremely good doctors out there and then there's the other side of the coin . . . I've worked with and around them for many years . . . DO NOT let them intimidate you, sometimes you're the only person capable of standing up for yourself. Alrightyyy . . . enough of the "hang in there" speeches/scenarios. I'll keep checking and if I can help or be of support to anyone . . . please feel free to send a note. For some reason I cannot get into live chat . . . I was always able to before, so, I'll be checking on that. Take care to all, Roberta
 
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