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mama hobbit
03-13-2009, 03:05 PM
Please forgive me if I shouldn't be posting here. I have NOT been officially diagnosed with Lupus. But I'm struggling with many of the symptoms, just as my mother and her sister have... but none of our bloodwork manages to provide the results needed.

I do not seem to have developed a full-blown lupus rash yet, but my best recollection of last summer/autumn seems to indicate that photosensitivity was what triggered my first true flare of intense joint pain, tendonitis in a variety of locations, intense exhaustion, mental fuzziness and plurisey. It became most pronounced after a combination of an afternoon on the beach and a round of Levaquin.

Has anyone here struggled with having the symptoms, but not having any signs of it in their arthritis panel, CPK or other bloodwork indicators? 15 years ago, my mother began struggling with what, the doctors at the time, believed were symptoms of lupus, but she did not have any of the bloodwork results they were working with then and she basically gave up on the medical system. She is severely ill, and frankly, seems to be suffering from deep mental impact, but has refused to ever see another doctor and my father has enabled her in this, promising not to take her to a hospital until she is completely unconscious. She has broken all our hearts... She is unable to maintain any relationships with anyone and cut us all off.

So, seeing what course she took, I have tried to stay determined not to do what she did. I have had my children later in life than she did, and checking out is simply not an option. They need me too much. But after getting my bloodwork results today, I am so depressed. It feels as though my symptoms must truly be "all in my head," despite the fact that they wake me up from a deep sleep, and require double doses of ibuprophen to keep up with even the most fundamental tasks around the house and care of my kids.

If anyone knows of any specialists who work with lupus patients in the S.E. Wisconsin or Chicagoland area, I'd appreciate any recommendations that can be offered up. Other than that, I guess I'm just looking for a lifeline to hold onto and see if there is hope out there that i'm not nuts.

But maybe I am... :embarrassed:

Thanks for letting me onto the board, but if a diagnosis is needed to continue here, I totally understand and will bow out graciously.

Angel Oliver
03-13-2009, 03:12 PM
Hello and welcome,

I am so glad you found this site. Oh and you are staying now....dont worry we will try and help you if only a little.

I was diagnosed with M.E. Just before Christmas was told i have Lupus, before the bloods came back. I told people have Lupus to find i do NOT have Lupus according to the blood results. Can you imagine how i felt....like a fake and a hypochondriac. I am neither! Doctors are still trying to find out why i have so many problems and am so sick. I have too many for M.E yet this is safer for them i think.

Dont you worry.Allot of people are in a similar situation.One day i WILL find out what is my true diagnosis. I know my body is unwell....i feel it....its not panic attacks....anxiety.....but true pain! Keep fighting lovey and welcome to this site.

love
Angel.xxxx

AyahsClan
03-13-2009, 04:00 PM
OMG what a sad state of affairs you and your poor mother are going through. It most certainly is NOT all in your head. Auto-immune factors can be so variable, same with symptoms. Sorry you are going through depression, many of us here know what that feels like.

There seems to be something genetic going on and you deserve answers so keep making them appointments and asking questions. In my case, I inherited DNA mutations from both parents but only I have the blood disease HH in my family. My mother has Hashimotos and so do I. My mother has auto-immune related polymyalgia rheumatica, I have lupus.

Researchers have only recently found a gene that causes the body to continue to attack after the virus, etc. has been successfully fought. There is obviously something going on with you. Did they do an ANA and a SED Rate (sedimentation rate)? Those are the first two they look at for lupus. My sed rate has always been normal, my ANA abnormal. My mother has a high SED rate but a negative ANA. We both are photosensitive , me to a much higher extreme.

You may want to keep copies of all your blood work. It may or may not be auto-immune related in your cases. Will keep you and yours in my heart. These great folks here will welcome you to share and be supported whether you get the lupus diagnoses or not.

mama hobbit
03-13-2009, 09:20 PM
Thanks for the welcome, ladies :wave:

I was diagnosed with Hashimoto's a couple of years ago, but my numbers are currently at a level that they feel doesn't warrant any hormone treatment right now. The thyroid doc (brain is fuzzy, can't remember what they call those guys) said that if my hives come back, he'll put me back on synthroid). My family doc doesn't think that the severe joint issues and exhaustion could be coming from that... I wonder if he's wrong. I also have celiac like symptoms to wheat, but not full-blown celiac's disease. I do keep GF pretty much.

Angel, forgive my ignorance, but what is M.E.? I probably should know, but it's just not coming to me at the moment.

Thank you for your reassurances and kind words.

sick n tired
03-13-2009, 09:37 PM
hey Mama H,

It is great that you found this site...there are many who have not been diagnosed or else have had the doc take it back...grrrr...what a mess.
Yes, I have had the same thing with the blood tests...very depressing...is your doc treating you like it is all in your head? Stupid question, I know, because many of us have had that problem at times. It took me over 15 years to get to a doctor who didn't treat me like I was nuts.
As for your mother, I totally understand where she is with doctors. The reason I stopped taking any symptoms to doctors for a while is because he treated me like I was a hypochondriac.:arghh:
I went to a friends doctor as a last ditch effort and he tested me and acted like it was not all in my head...how refreshing.
I don't know if you know, but for lupus the tests do have a tendancy of going all over the place...
Well welcome to this forum and I sincerely hope that you stay as we are now friends and I don't want to think of you feeling alone...I know how that feels and this forum is a lifeline.

Angel Oliver
03-14-2009, 06:29 AM
Sorry, its also know as Chronic Fatigue syndrome.xxxx

mountaindreamer
03-14-2009, 09:44 AM
hi mamahobbit,

welcome to the group.....this is the place to get great information and support. no one here every judges and we all know what you are going through.

i am so sorry about your mom....i know this must really take a toll on you and your family. i wish she could have found a good dr. to help her.

in reference to y our question about drs.....i remember someone in the group who got great med. attention in the chicago area. Hopefully this person will be along with information for you....i can't remember who it was. a good dr. is the secret to this crazy disease....don't give up, keep looking for your "good fit" with a dr.

as far as blood work goes....these tests can vary according to whether or not you are in a flare, and can vary depending on any meds that you are on. I agree, keep your records, go to the dr. with info in hand, and be your best advocate....the symptoms are real and don't let anyone convince you otherwise.

please feel free to call on us for help....we all help each other.

tasha
03-14-2009, 10:12 AM
Hi Mama Hobbit,

really the only advice i have for you is keep seeking more lab work and more doctor's opinions. the diagnostics stage is the hardest part, for sure. for me, i only recently came out of that stage, and now i'm doing so much better. but from september-december of last year i was so miserable. i was constantly seeing all these doctors and getting all these tests and not knowing what was wrong with me. one doctor thought i had mixed connective tissue disease, which was incorrect. it was a hard time, so i know what you're going through. i just wanted it to end and thought i would never be healthy again.

now that i know i have lupus and i'm on a treatment plan, my life has improved drastically. so don't give up looking for those answers. even if they aren't the answers you hope for, knowing and getting treated improves your life so much. i truly hope that you and your mom figure everything out very soon. just please don't give up on it!!

AyahsClan
03-14-2009, 05:24 PM
Thanks for the welcome, ladies :wave:

I was diagnosed with Hashimoto's a couple of years ago, but my numbers are currently at a level that they feel doesn't warrant any hormone treatment right now. The thyroid doc (brain is fuzzy, can't remember what they call those guys) said that if my hives come back, he'll put me back on synthroid). My family doc doesn't think that the severe joint issues and exhaustion could be coming from that... I wonder if he's wrong. I also have celiac like symptoms to wheat, but not full-blown celiac's disease. I do keep GF pretty much.

Angel, forgive my ignorance, but what is M.E.? I probably should know, but it's just not coming to me at the moment.

Thank you for your reassurances and kind words.

Hi again,

From what I understand, Hashimotoes Thyroiditus IS diagnosed because of (I don't know what it is called) but anti-thyroid antibodies, thus auto-immune in the blood. It means your body is attacking your thyroid.With Lupus our bodies attack the same way but different organs. For many the skin is involved, kidneys it can be anything. So the process is the same.

IMHO you may want to see another Endocrinologist for your thyroid. You will need to make sure it does not swell. It can cause goiter if not treated properly. It is probably just a coincidence but my lupus started with Hashimotos. First there was the terrible debilitating fatigue, then Hashimotoes was diagnosed. After that came the joint pain, worse fatigue and skin abnormalities. It wasn't until my body attacked other organs that the diagnoses of lupus was agreed on by doctors at Loma Linda Med.U.

Not to say you will progress into other complications, but your pain and fatigue is real and has a cause. We are not born with pain and fatigue. Some doctors don't have a clue what we mean when we say we are exhausted and can not function.

Don't lose hope, the answers are out there.

mama hobbit
03-14-2009, 06:10 PM
Hi again,

From what I understand, Hashimotoes Thyroiditus IS diagnosed because of (I don't know what it is called) but anti-thyroid antibodies, thus auto-immune in the blood. It means your body is attacking your thyroid.With Lupus our bodies attack the same way but different organs. For many the skin is involved, kidneys it can be anything. So the process is the same.

IMHO you may want to see another Endocrinologist for your thyroid. You will need to make sure it does not swell. It can cause goiter if not treated properly. It is probably just a coincidence but my lupus started with Hashimotos. First there was the terrible debilitating fatigue, then Hashimotoes was diagnosed. After that came the joint pain, worse fatigue and skin abnormalities. It wasn't until my body attacked other organs that the diagnoses of lupus was agreed on by doctors at Loma Linda Med.U.

Not to say you will progress into other complications, but your pain and fatigue is real and has a cause. We are not born with pain and fatigue. Some doctors don't have a clue what we mean when we say we are exhausted and can not function.

Don't lose hope, the answers are out there.

Thanks for sharing your background, Ayah.

The endocrinologist (that's the word I was looking for :cute: ) said he could have diagnosed my hashimoto's without even doing bloodwork. It is twice the size it should be, multi-nodular and has some sort of larger nodule or something on the left side. I'm convinced it's what is making my left ear buzz when I shout or sing in a certain range. Really annoying when you want to get in a good, satisfying yell at the kids. But honestly, is that really all that big?

My aunt finally had her thyroid removed a couple of years ago. It had partially calcified onto her esophaghus, so the surgery was really long. - gaack!

Ya know, I have such a hard time not being intimidated by doctors. At least when it comes to my issues. Both of my kids have a high functioning form of autism, and I fought for years for them to get the help they needed. Advocate General here! But for my stuff, I just politely swallow whatever they say, sure that they will think I'm an internet-surfing wack job who has the audacity to question their opinions.

mama hobbit
03-14-2009, 06:13 PM
Hi Mama Hobbit,

really the only advice i have for you is keep seeking more lab work and more doctor's opinions. the diagnostics stage is the hardest part, for sure. for me, i only recently came out of that stage, and now i'm doing so much better. but from september-december of last year i was so miserable. i was constantly seeing all these doctors and getting all these tests and not knowing what was wrong with me. one doctor thought i had mixed connective tissue disease, which was incorrect. it was a hard time, so i know what you're going through. i just wanted it to end and thought i would never be healthy again.

now that i know i have lupus and i'm on a treatment plan, my life has improved drastically. so don't give up looking for those answers. even if they aren't the answers you hope for, knowing and getting treated improves your life so much. i truly hope that you and your mom figure everything out very soon. just please don't give up on it!!

Tasha, how in the world are you managing grad school with this sort of disease? I mean, energy and grad studies are sort of a required combo, eh? Just a bit of the mom coming out in me, but I do hope you have a good sort of support community around you, hon!

Thanks for the welcome.

tasha
03-15-2009, 12:19 AM
Tasha, how in the world are you managing grad school with this sort of disease? I mean, energy and grad studies are sort of a required combo, eh? Just a bit of the mom coming out in me, but I do hope you have a good sort of support community around you, hon!

Thanks for the welcome.

it was definitely tough for awhile, especially before they knew what was wrong with me and i was in constant pain! but now that i'm on a good treatment plan, i feel pretty good most of the time. the hardest part is managing stress, and i have a really amazing support network surrounding me. my family is helping me a lot, both emotionally and financially. and actually... going to grad school is one of the biggest joys in my life right now, despite how stressful it is. it really makes me feel like i'm accomplishing something and i love what i'm studying, which helps me get through those hard, painful times that lupus brings.

rob
03-15-2009, 08:57 AM
Hi Mama Hobbit,

My name is Rob, and I'm a Moderator here. I just wanted to assure you that you are very much in the right place, and you are welcome here. Many of our members are in what I call "diagnostic limbo", and cannot recieve a proper diagnosis. I can't really add anything to the excellent advice you have already recieved. As you can see, we're a pretty laid back group, so please, make yourself at home. I hope we can help you find the answers you need.

Rob

AyahsClan
03-15-2009, 04:11 PM
Thanks for sharing your background, Ayah.

The endocrinologist (that's the word I was looking for :cute: ) said he could have diagnosed my hashimoto's without even doing bloodwork. It is twice the size it should be, multi-nodular and has some sort of larger nodule or something on the left side. I'm convinced it's what is making my left ear buzz when I shout or sing in a certain range. Really annoying when you want to get in a good, satisfying yell at the kids. But honestly, is that really all that big?

My aunt finally had her thyroid removed a couple of years ago. It had partially calcified onto her esophaghus, so the surgery was really long. - gaack!

Ya know, I have such a hard time not being intimidated by doctors. At least when it comes to my issues. Both of my kids have a high functioning form of autism, and I fought for years for them to get the help they needed. Advocate General here! But for my stuff, I just politely swallow whatever they say, sure that they will think I'm an internet-surfing wack job who has the audacity to question their opinions.

We have a lot in common. My mother had her thyroid removed because it had grown into her esophagus. I may be wrong, but I thought that thyroid replacement therapy kept the goiter from growing. It has mine. That is what my endocrinologists all told me. You may find some interesting information if you google "wilson's syndrome", there is a support group dealing with thyroid disorders.

My husband is an Aspie which you probably know what that means. We did not know when we got married and it was one wild ride. I read a book written by a therapist who had also married one without knowing. It helps us communicate better. DH is amazing. He can fix or build anything, literally anything. He is 4'10" and does things like build a custom room on to the house, change a 300lb bus engine, all by himself. But if I ask him a simple question that deals with his feelings, he gets stressed out. If I ask him to organize something, he stresses.

We have to be pushy with medical care. I have been jerked around so bad that now I go in, tell them what I want to happen. When I moved here 10 years ago, I had just come from top rate medical care at U of AZ. I quickly went though doctors. Last one I walked in and said "I am a complicated patient, I have A,B,C and D. I need this this and that from you. I don't like taking medicine. (non-compliant they call it) Can you do it?" He looked at me, thought for a minute and said "I think we can, it might take a while to get to know you but I can" I said "ARE YOU SURE!" lol...it has been ok. I don't get the best medical care but good enough. I try to do research before I go in with a "complaint" as the medical community calls it.

Hope you're having a good weekend.

mountaindreamer
03-15-2009, 05:59 PM
hi mamahobbit.

i am so sorry that your drs. intimidate you. Before i turned 50, they probably did the same to me. turning 50 just does something to your attitude.

we need to develop some vision so that when the drs. make us feel like loopie lunnies, we envision something funny and get a silent giggle to ourselves. anyway, sorry for rambling....just really hate that you feel intimidated...maybe you could pretend to be 50 when you have dr. appts. that should bring a chuckle