Why are they so scared to call it LUPUS???

[brown_paper_bag]

I have no idea whether this contitutes a diagnosis. :wacko: My rheumy said he is 100% certain I have an immune disorder and 95% sure it's SLE. I have an array of symptoms, but everything started when I woke up one morning with a paralyzed arm and what I call "claw hand" (no other way to describe it). That episode (the paralysis) lasted about 2.5 months. During that time I saw a neurologist who did an EMG and MRI. The EMG confirmed that there was nerve damage caused by something other than "sleeping on it the wrong way" (as I had been told by the first doctor). He conducted the MRI to rule out MS and discovered a brain lesion. At that point, I discovered that my symptoms - Raynaud's, Thrombocytopenia, low WBC count, achy joints, sore (and weak) muscles, severe fatigue, scalp sores, severe cognitive disfunction, depression and occasional mouth and nose sores were possibly related to the same cause. I was referred to a rheumy who conducted more tests - Elevated SED, positive ANA, low C3. He advised me and my GP that he 'supposes' I have systemic lupus and put me on Plaquenil. The plaquenil was helping and then I got pregnant. I stopped all meds. Everything got better and I thought it was all gone. About 4 months postpartum it crept back again (though much milder than before). It is now 8.5 months since I had the baby. I am starting to feel the same crappy way again (though the pain is not as severe). I guess I want to understand why, with all these symptoms can I not get a 100% (firm diagnosis). What is so complicated about it? I know I should be happy with a 95%, as many of you are still struggling to even obtain THAT, but it's that 5% that can drive a person nuts. (Is it or isn't it lupus? Am I just a hypochondriac?) I'm sorry for writing a novel here but if anyone can answer some of this uncertainty I would be ever so grateful. Thanks for listening. :cry:

[AnM]

Hey Brown & Welcome to the site!!

U have come to a great site for info. & support!!!

I'm sorry you dealing w/ all this & not feeling well!

U are NOT a Hypocondriac!! Lupus is hard to diagnose- b/c it can mimic other illnesses & other illnesses can mimic Lupus.
So, the docs. for that n other reasons want to be sure before putting it in your file. Another thing is that poss. b/c of ins. too. But, i'm not sure where u live?? so.

I do understand, u want a definite answer. & it's hard. Have u asked your doctor what (s)he thinks?? why he says 95% yes, & still 5% not definite??

U should talk to your doc. & see what (s)he says? good communication is an important aspect of a doctor/paitent relationship. & shows a good doc. that will listen & answer your q's.

I wish u the best. & hope u get your def. answer soon. Important thing was (s)he was treating u. Are u back on the Plaquenil??

So, if (s)he is saying mostly this & treating u as such- that is a Great thing!!
Take care & i wish u the best!!
Alicia :coffee: :flowers:

[brown_paper_bag]

Thanks so much for your advice and support. When I spoke to my rheumy about the 5%, he said that my symptoms and MOST of the bloodwork were indicative of SLE but there were still some grey areas. I'm not sure what that means. :unsure: You're right - communication is key - so I will ask him to elaborate. He did write a letter to my GP advising that he suspects I have FM as well. Perhaps he was trying to determine EVERYTHING before diagnosing too quickly?? I'm not sure. I am NOT on Plaquenil at the moment because I am still nursing. I had blood tests done a few weeks ago to see where it's at and determine whether it's necessary to wean and go back on...(My symptoms should probably be the deciding factor but since there's still that 5% uncertainty, I figured the bloodwork would dictate what I should do - does that make sense?). :cry: So far my rheumy hasn't got back to me. I should mention, as well, that I am living in the middle of nowhere and my rheumy is in another province. We usually deal with this by phone. For now, I am tired and achy and very depressed. I feel like I can't keep up with my friends and family anymore because I'm so exhausted all the time. I'm not sure they understand this, either...It's been a while since we went through this the first time. Thanks again for listening!! :sigh:

[Clare.T]

Welcome to the forum !

Well maybe he isn't very sure of himself although I agree it's hard to see why, given your test results and symptoms.
It's certainly time for a reevaluation.

You have done very well through the pregnancy and it's great to have been able to breast feed so long. My personal view is that children deserve the healthiest & happiest parent possible and there's no point being a martyr to pain and fatigue when the child won't suffer at all from weaning.
Quality of life is very important.
You need to find out what's wrong with you whatever it is



It is very depressing when you think you are free of disease only to see it coming back again - several of us have been through this, myself included.

Here are some encouraging and strengthening hugs. See what the tests show maybe you'll have that decision taken from you, but anyway you owe it to yourself and the family to feel better and phooey about friends etc - they don't live in your shoes with your responsibilities

Let us know how it goes and good luck

Clare

[hurley]

Hi Brown - A little over a year ago I woke up to find my left arm and hand paralyzed. They called it radial nerve palsy. It lasted about the same amount of time yours did. I have experienced a lot of the same symptoms you have, to include brain lesions. My brain has also atrophied quite a bit. I have not gotten any solid answers and am planning to find a new neurologist to discuss these things.

I had the sores on my scalp biopsied and they were found to be lupus. That is a 100% diagnosis. I guess that diagnosis by blood test results and symptoms can never be 100%, but the docs usually have a pretty good idea. My guess is that they have to reserve that 5% to protect themselves against lawsuits. Anyway, you might want to have those scalp sores and any others on your face or other parts biopsied.

Please let us know how things go. I am interested to know what your docs say since your sx are so close to what I have experienced. I hope the plaquenil kicks in soon (I have been on it since November and am still having problems, but am better - recently has been increased) and take care of your sweet baby.

Hugs!

:love:

Julie

[hurley]

Hi Brown - I just realized that you are NOT currently on plaq. Maybe you should start back on it as soon as possible.

;)

Julie

[brown_paper_bag]

Thank you guys so much for all your help. Julie, that's exactly what I had (radial nerve palsy). For me it was in the right arm. I was planning on getting a biopsy of the scalp lesions anyway, but now I'll definitely get on that. :hyper: I am still waiting for my rheumy to phone me back. I'm sure he'll put me back on Plaquenil (he tried when the baby was 4 months old, but I was too worried about nursing & meds). I've been feeling guilty about weaning before 1 year, but it's true: the baby will be fine if weaned now. :sigh: It's so nice to find a place where others understand you & know what you're going through. Thanks again, everyone!! :D

[raggedyann1]

Brown,

I imagine it is difficult to decide on weaning your baby. But at least you have a happy healthy child and seem about ready to make that decision. Yes follow thru on the other symptoms; I would want to know why if I had a brain lesion I was only put on plaquenil. The major lupus specialists are taking an aggressive approach these days in how they manage their patients treatment. Then when everything seems to be quieting down they start backing off.

Some doctors, especially those that are a long distance from a major teaching hospital tend to rely on the ACR criteria no matter what. I wonder if that is what your rheumy is doing. Just a thought.

Let us know how things go.

take care,
Karen

[hurley]

...but then, not ALL of us get to be seen by a MAJOR lupus specialist. ;)

Hugs.

:love:

Julie

[dudley]

Hi bown bag

Lupus is a tough call for a doc to make. They want to be absolutly sure. There is protocal by the rhumitoid foundation on exactly what your blood and symptons must show to be dx with Lupus. )might have the name wrong- tired and loopie brian. It is on this site or you can just get back to me.

Any way they call Lupus the wolf and the great imatature. There is no specfic test for lupus. They try to rule out everything first. Lupus is one of many autoimmune diseases that share a lot of the same symptoms. It looks like your doc is just being careful.

Alot of times the DX of lupus is like hands off for insurance companies etc.

Talk with your doc. I hope you do not have lupus.

Sorry about my spelling

Elaine

[raggedyann1]

hurley,

There is a major lupus specialist in your state. :P

Karen

[hurley]

:lol: :lol: :lol:


Karen!!!! :D


If you mean Dr. Sibbett, he is supposed to be my doctor, but I keep getting this other guy.

Could you put in a good word for me??????


PPPLLLLEEEAAASSSSEEEE!!!!!


:lol:

Hugs and Bigger Hugs!

Julie

:love:

[groovy_bint]

[COLOR=purple][FONT=Courier][SIZE=1] Hi Brown. I was diagnosed when i was 17. Im now 22 and still confused with what happening. B4 they found out i had SLEi ballooned up 6 dress sizes i was only a 8 and went to a 22 in a week. I was really ill my kidneys about popped so i was rushed in and they sorted me out. I was on 13 types of tablets which was really depressing. People look at me strange when i tell the my illness is cronic. they laugh at me as you can see lupus. But 5 years on a still get a little confused. :( i did a really naughty thing 3 years ago i decided to come off my tablets and i feel much beta than i did when i started them. LOve Amy x x x :D