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Old 11-21-2003, 10:33 AM   #1
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Cool My Journey to a Diagnosis :)

Hey guys,

Many of you have asked what my story is, and now I have the time to sit down and type it up for you. My journey started when I was 16 years old, when I had a weird paralysis (numbness) that went down my right side and would end in my face leaving me unable to talk. Those episodes would come and go, they were almost like TIA's or mini strokes. I would get so tired that I would sleep for days, and throw up all the time. I would hallucinate, and finally was so sick that the hospital admitted me to see what the problem was. My symptoms were the butterfly rash, joint problems, fever, nausea, these TIA's, my eyesight was double and blurred, etc They had done a CT scan and it showed some spots on them, they were like brain clots. No one told us that. I was sent to another city for investigations because they thought I had Encephalitis, which is inflammation of the inner part of the meninges in the brain. It can kill you in a heartbeat. They did several spinal taps, and they showed a MAJOR increase in Lymphocytes.. which meant that my brain was very very inflamed. In this other city, a doctor tested me for Lupus. He did several tests, and lots of them were very positive! I had a positive Anti-dna, Anti-Ro, Anti-SSB etc all positive. Now, you would think that they would have diagnosed me based on that right? Well they didnt. We only found out about these tests last year- so it was almost like a deception!

I ended up going for active rehabilitation because I had lost the use of both legs and one of my hands. Things got worse in the rehab center before they improved, and the doctors tried to say that I had a psychiatric problems (forgetting about the positive blood work, CT scan and the lumbar puncture that showed TONS of cells). They tried to pin "Conversion Disorder" on me. In case you dont know what that is, it is a disorder where you pretty much believe that you are sick so your body is sick. But NOTHING comes back positive in your blood work or other tests. This makes no sense, I know! Anyway- I went home from the rehab center in a wheelchair and make a vow to myself. I promised that I would walk again, and graduate from high school. And I did both, my memory was so bad that I had to work 11 times as hard as anyone else but I DID IT!! So I went on to University and wanted to put this "Encephalitis" behind me.

That wasn't able to happen! I ended up having a period of left sided weakness and eyesight problems twice (With inflammation in the optic nerves). They told me that nothing was wrong. I then developed Type 1 Diabetes, which a doctor said had a "functional component' meaning that I was faking it? How do you fake blood work I dont know!! So then it was a Pyleonephritis, which is inflammation of the kidneys. this time they watched me carefully and treated me with high dose antibiotic IV. It took me 4 months to get better. I adorned the Lupus rash and the fatigue, weight loss, fevers, joint pain, etc through ALL of these episodes, including the Encephalitis. I could always tell when I was going to get sick again. I would get tired first, then the fevers would come (low grade ones) and then we would wait to see what was going to happen! This takes me up to my most recent battle.

In 2001 I started having abdominal pain, the usual fevers, weight loss, joint pain, fatigue, rashes etc My doctor put me on morphine, and I was investigated for LOTS of things and nothing showed. So they started to wonder what was going on, but no one brought up me being "crazy" yet! I had a 8cm cyst show up in my abdomen. I had blood work showing Lupus like activity- but my straight lupus tests were negative. They were negative because I have a chronic Mycoplasma infection- which means that this Mycoplasma is masking my blood work right now! It must be treated in order for my blood work to show. I saw 2 Rheumatologists, both of them told me that there was NO way that I had Lupus. One gave me Orthopedic foot supports for my foot swelling (I laugh about it now but at the time I was mad). My eyesight went really fuzzy and blurred and then went double. I have Optic Neuritis that started at that point. Anyway- I ended up in the hospital and the doctor told the WHOLE nursing staff that I was a "drug addict" instead of looking in my eyes and seeing what was going on. I spent a month of HELL in that hospital, they took me off the morphine to see what woudl happen and treated me with 1/3 of the dose of steriod that I needed for my eyes to heal. So I ended up not being able to eat at all, and they didn't run my IV high enough so i was dehydrated and I lost 25 pounds! What a mess. I left the hospital in far WORSE shape than I went in! We didn't know what to do!!!!

We left our Province and went to another larger city to see if we could get a second opinion. Well, these doctors decided that I was crazy too! And at this point, I had a spinal MRI that showed 6 disc bulges in the upper spine, a full blown B12 deficiency, a stomach that had GERD and tons of inflammation, eyesight that was still awful and showing TONS of inflammation etc I was a mess, and I thought- How could I make my body inflamed!!! HAHAH!! I just laugh now, but at the time it crushed my hopes of ever being diagnosed properly. I was so poor- I hadnt had any money for 9 months and I was in a dispute with my long term disabiity provider from work. It was awful! I prayed that the Lord intervene in my care and show what was really going on.

I received my long term disability settlement finally, I didn't have much of a chance of winning either by the way. It was the Lord! So I received 9 months of backpay and I thought "What the heck does the Lord want me to do with this" so I prayed for wisdom. I have met some pretty incredible people on another board- so we started talking about the next step in my journey. They recommended a BRILLIANT Rheumatologist in London England. And I am from Canada so that was quite a journey! I figured that the money that I had saved up from the settlement could go to that. So I had my GP send a referral overseas and we waited. I had a 3 month wait to see Dr. Hughes BUT I was so excited and nervous to get this sorted out. I was scared that he would say I was nuts. I thought he would tell me, like everyone else did, that those tests were false positive from when I was 16. I was SO SCARED you guys!!!

The MINUTE we walked into Dr. Hughes office I instantly was calm. I have never travelled so the trip itself was HUGE for my mom and I!! Within HALF AN HOUR he had me diagnosed with Lupus, Antiphospholipid SYndrome (which caused the Encephalitis, and all of my Neurological symptoms), Sjogren's Syndrome, and Raynauds' Phenomenon- which causes circulatory problems. So VOILA I was diagnosed! NOw I am on blood thinners and things are going a lot better. I want to get the word out there to everyone that this doesnt need to happen to us. We dont need to be deceived before we are diagnosed. And the Lord uses me to help others- like you all to get you all diagnosed and feelign better too! My life is not perfect, but I am feeling a bit better. It takes time wen you are a "mess" like me! But I am diagnosed.. and so happy

I am so glad that this board is starting to become a place where we can all talk and support each other. It used to be just people asking questions.. I am here to answer them, because I have been there. A lot of things you all have been through I have been through too! This is just a taste of my story- but thanks for being interested and I hope that I can help you all to be able to someday be diagnosed and then YOU can sit down and write your story to others that are struggling to get diagnosed properly Take care and you guys are the best. Feel free to ask questions if you like

~Luv, Dana (Angelic)

 
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Old 11-21-2003, 12:00 PM   #2
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Join Date: Jun 2002
Location: New Jersey, USA
Posts: 630
PINKYPRISCILLA HB User
Re: My Journey to a Diagnosis :)

Hi Angelic,

Wow you have been thru a lot !!!!
I am so glad that you finally got the diagnosis !!!

I don't understand why doctors will misdiagnose and/or
just not care (like my mother's current one)?

I believe that faith will get us thru it all.

 
Old 11-22-2003, 08:19 PM   #3
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Join Date: Nov 2003
Posts: 4
Jida's Girl HB User
Re: My Journey to a Diagnosis :)

Nice to meet you AngelicBrat Love your story! Not to say that I wish none of this on anyone. But the fact that you fought for the diagnosis, reminds me how I fought for my sister. I look forward to talking with you now and then!

Jida's Girl

 
Old 11-27-2003, 11:15 PM   #4
Junior Member
 
Join Date: Nov 2003
Posts: 17
Truffles HB User
Re: My Journey to a Diagnosis :)

Wow.....You are truly brave and strong. What a pain in the butt! I hate feeling like I KNOW something is wrong with me and having the doctors tell me it's my anxiety and depression causing me to analyse my symptoms then tell me my symptoms are caused from depression and anxiety. I'm glad you found your way and that you're doing great! I love this board and you also, for all your help. I'm glad I can come here even though I probably don't have lupus. Take care of yourself, you deserve it! I'm sending big hugs!! I'd like to know where you see your regular docs. I'm from Canada too. Montreal.
Thanks! ooooooo
Quote:
Originally Posted by AngelicBrat
Hey guys,

Many of you have asked what my story is, and now I have the time to sit down and type it up for you. My journey started when I was 16 years old, when I had a weird paralysis (numbness) that went down my right side and would end in my face leaving me unable to talk. Those episodes would come and go, they were almost like TIA's or mini strokes. I would get so tired that I would sleep for days, and throw up all the time. I would hallucinate, and finally was so sick that the hospital admitted me to see what the problem was. My symptoms were the butterfly rash, joint problems, fever, nausea, these TIA's, my eyesight was double and blurred, etc They had done a CT scan and it showed some spots on them, they were like brain clots. No one told us that. I was sent to another city for investigations because they thought I had Encephalitis, which is inflammation of the inner part of the meninges in the brain. It can kill you in a heartbeat. They did several spinal taps, and they showed a MAJOR increase in Lymphocytes.. which meant that my brain was very very inflamed. In this other city, a doctor tested me for Lupus. He did several tests, and lots of them were very positive! I had a positive Anti-dna, Anti-Ro, Anti-SSB etc all positive. Now, you would think that they would have diagnosed me based on that right? Well they didnt. We only found out about these tests last year- so it was almost like a deception!

I ended up going for active rehabilitation because I had lost the use of both legs and one of my hands. Things got worse in the rehab center before they improved, and the doctors tried to say that I had a psychiatric problems (forgetting about the positive blood work, CT scan and the lumbar puncture that showed TONS of cells). They tried to pin "Conversion Disorder" on me. In case you dont know what that is, it is a disorder where you pretty much believe that you are sick so your body is sick. But NOTHING comes back positive in your blood work or other tests. This makes no sense, I know! Anyway- I went home from the rehab center in a wheelchair and make a vow to myself. I promised that I would walk again, and graduate from high school. And I did both, my memory was so bad that I had to work 11 times as hard as anyone else but I DID IT!! So I went on to University and wanted to put this "Encephalitis" behind me.

That wasn't able to happen! I ended up having a period of left sided weakness and eyesight problems twice (With inflammation in the optic nerves). They told me that nothing was wrong. I then developed Type 1 Diabetes, which a doctor said had a "functional component' meaning that I was faking it? How do you fake blood work I dont know!! So then it was a Pyleonephritis, which is inflammation of the kidneys. this time they watched me carefully and treated me with high dose antibiotic IV. It took me 4 months to get better. I adorned the Lupus rash and the fatigue, weight loss, fevers, joint pain, etc through ALL of these episodes, including the Encephalitis. I could always tell when I was going to get sick again. I would get tired first, then the fevers would come (low grade ones) and then we would wait to see what was going to happen! This takes me up to my most recent battle.

In 2001 I started having abdominal pain, the usual fevers, weight loss, joint pain, fatigue, rashes etc My doctor put me on morphine, and I was investigated for LOTS of things and nothing showed. So they started to wonder what was going on, but no one brought up me being "crazy" yet! I had a 8cm cyst show up in my abdomen. I had blood work showing Lupus like activity- but my straight lupus tests were negative. They were negative because I have a chronic Mycoplasma infection- which means that this Mycoplasma is masking my blood work right now! It must be treated in order for my blood work to show. I saw 2 Rheumatologists, both of them told me that there was NO way that I had Lupus. One gave me Orthopedic foot supports for my foot swelling (I laugh about it now but at the time I was mad). My eyesight went really fuzzy and blurred and then went double. I have Optic Neuritis that started at that point. Anyway- I ended up in the hospital and the doctor told the WHOLE nursing staff that I was a "drug addict" instead of looking in my eyes and seeing what was going on. I spent a month of HELL in that hospital, they took me off the morphine to see what woudl happen and treated me with 1/3 of the dose of steriod that I needed for my eyes to heal. So I ended up not being able to eat at all, and they didn't run my IV high enough so i was dehydrated and I lost 25 pounds! What a mess. I left the hospital in far WORSE shape than I went in! We didn't know what to do!!!!

We left our Province and went to another larger city to see if we could get a second opinion. Well, these doctors decided that I was crazy too! And at this point, I had a spinal MRI that showed 6 disc bulges in the upper spine, a full blown B12 deficiency, a stomach that had GERD and tons of inflammation, eyesight that was still awful and showing TONS of inflammation etc I was a mess, and I thought- How could I make my body inflamed!!! HAHAH!! I just laugh now, but at the time it crushed my hopes of ever being diagnosed properly. I was so poor- I hadnt had any money for 9 months and I was in a dispute with my long term disabiity provider from work. It was awful! I prayed that the Lord intervene in my care and show what was really going on.

I received my long term disability settlement finally, I didn't have much of a chance of winning either by the way. It was the Lord! So I received 9 months of backpay and I thought "What the heck does the Lord want me to do with this" so I prayed for wisdom. I have met some pretty incredible people on another board- so we started talking about the next step in my journey. They recommended a BRILLIANT Rheumatologist in London England. And I am from Canada so that was quite a journey! I figured that the money that I had saved up from the settlement could go to that. So I had my GP send a referral overseas and we waited. I had a 3 month wait to see Dr. Hughes BUT I was so excited and nervous to get this sorted out. I was scared that he would say I was nuts. I thought he would tell me, like everyone else did, that those tests were false positive from when I was 16. I was SO SCARED you guys!!!

The MINUTE we walked into Dr. Hughes office I instantly was calm. I have never travelled so the trip itself was HUGE for my mom and I!! Within HALF AN HOUR he had me diagnosed with Lupus, Antiphospholipid SYndrome (which caused the Encephalitis, and all of my Neurological symptoms), Sjogren's Syndrome, and Raynauds' Phenomenon- which causes circulatory problems. So VOILA I was diagnosed! NOw I am on blood thinners and things are going a lot better. I want to get the word out there to everyone that this doesnt need to happen to us. We dont need to be deceived before we are diagnosed. And the Lord uses me to help others- like you all to get you all diagnosed and feelign better too! My life is not perfect, but I am feeling a bit better. It takes time wen you are a "mess" like me! But I am diagnosed.. and so happy

I am so glad that this board is starting to become a place where we can all talk and support each other. It used to be just people asking questions.. I am here to answer them, because I have been there. A lot of things you all have been through I have been through too! This is just a taste of my story- but thanks for being interested and I hope that I can help you all to be able to someday be diagnosed and then YOU can sit down and write your story to others that are struggling to get diagnosed properly Take care and you guys are the best. Feel free to ask questions if you like

~Luv, Dana (Angelic)

 
Old 12-02-2003, 03:18 AM   #5
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Join Date: Oct 2003
Location: Australia
Posts: 23
*Pook* HB User
Re: My Journey to a Diagnosis :)

Hey Angelic -
Have just read your story again, it's very hard to put into words the compassion I feel for you having to go through all of that - in these days of 'modern medicine'. With most condition it's a diagnosis is a bit of a dread - for us a relief.
You are a true Angel to all that you have supprted and encourgaged - I'm on top of that list.

Take Care,

Luv Gina
XX

 
Old 12-12-2003, 09:16 AM   #6
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Join Date: Oct 2003
Posts: 7
Lisa C HB User
Re: My Journey to a Diagnosis :)

Hi Dana,

I just read your story and feel for you.

I know how it feels to be told "it's all in your head" and/or "it's all due to stress".

In this day and age, it sure would be nice if there were more doctors who would specialize in auto-immune disorders solely.

Take care.

Lisa C

 
Old 12-12-2003, 01:21 PM   #7
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Join Date: Jan 2003
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: My Journey to a Diagnosis :)

It is so devistating with the number of people that are told that its all in their heads!!! I can't believe it. I wish that I could bang some of these doctor's heads together. Without having God in my life, I would be dead or in big trouble. That has gotten me through it all! There is a plan for our lives you guys, we just have to figure it out. No sense in being bitter, it doesn't get us anywhere other than miserable. I have a very positive attitude and that is why I am here helping all of you To date, I have helped 32 people get diagnosed. And the number keeps on growing!! Thank God for all of you too, and that you were led to this board with all of these supportive and wonderful people

~Luv, Dana

 
Old 12-15-2003, 03:56 PM   #8
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Erinw HB User
Re: My Journey to a Diagnosis :)

You are an inspiration to all of us
erinw

 
Old 02-10-2004, 09:48 PM   #9
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: My Journey to a Diagnosis :)

Bump!

 
Old 03-13-2004, 09:48 PM   #10
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Re: My Journey to a Diagnosis :)

Bump again!

 
Old 03-14-2004, 05:40 PM   #11
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Join Date: Mar 2004
Posts: 21
Liseesmom HB User
Re: My Journey to a Diagnosis :)

I'm in with you now, APS sister!

Its unbelievable what we have to endure to get diagnosed properly.

You are an inspiration!

Liseesmom

 
Old 03-14-2004, 07:13 PM   #12
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Join Date: Jan 2003
Posts: 665
AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: My Journey to a Diagnosis :)

LOL we are certainly APS sister's!! It is so crazy, but you know what? A person must explore all of their options hey. I always look for a window when a door closes.. that is just the way I am! I am so glad that you found us here

~Luv, Dana XO

 
Old 03-16-2004, 04:08 PM   #13
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Posts: 852
lovemythreeguys2002 HB User
Re: My Journey to a Diagnosis :)

Dana, do you have a dr there that treats you now? Are you on Plaquenil, or anything like Vioxx etc?

(((((HUGS)))))
__________________
Lupus
****
Hypothyroid

 
Old 04-16-2004, 06:02 AM   #14
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Join Date: Apr 2004
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sandips HB User
Re: My Journey to a Diagnosis :)

this is sandi. i wrote to a post about being confused about aps. if you have a chance please read the other questions i had for you about bloodwork.thanks'sandi

 
Old 04-16-2004, 08:43 AM   #15
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Join Date: Mar 2004
Location: Houston
Posts: 245
Donte HB User
Re: My Journey to a Diagnosis :)

Hi Dana - - I read your story and was very moved by it. I have a question for you: You said that you had pyleonephritis; did you ever find out if this was related to the lupus? I'm wondering because I had this and was hospitalized for it in 2001. I was just diagnosed with lupus in March of 2003 and I was curious if, now that I look back on that time, I could have had it then and they just didn't do the right tests to find out the underlying cause.

Thanks - Donna

Last edited by Donte; 04-16-2004 at 08:43 AM.

 
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