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
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!
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
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.
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
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
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
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.
The Pyleo was definitely Lupus Nephritis and not Pyleonephritis! I bet yours was too hey. Its really interesting when we put the whole picture together isn't it? Take care, and sandips I will check out your blood work right now!
Hello! Just had to say that your post made me smile and brought tears to my eyes at the same time. I am so happy that you finally got your diagnosis. God bless you.
I have read a few of your posts since I have come to the boards but you have not really been on much so I didn't know your story. I am amazed at your ability to hang on to your faith. So many seem to lose it in times of severe trial. I must admit that mine falters a beat during the worst of it sometimes too and I haven't had anywhere near the trials you have. I have only had bouts of things that lasted 2 to 6 months at a time. Some of them resulted in hospitalizations, 1 in surgery. There were never any concrete reasons for what had happened. Then I would be so healthy it would be unreal for years at a time and for those I am very grateful. I must say, having been so very healthy made me a very bad patient when I having an episode. These things started, that I noticed, with my first pregnancy, but I had many bone and joint aches and pains growing up and the discoid lesions showed up on my arms with my last pregnancy at 27.
I should also tell you that since I have recently celebrated another birthday, I am now 55, married 36 years, 3 children, 6 grandchildren. DH is a long haul trucker so I spend much of my time all alone.
I have been diagnosed with several things also, but they do not appear to be serious. They are a problem only because they are existing in combination and the symptoms are similar to each other and overlap. The biggest problem is when one acts up, they all seem to act up.
I have:
Hashimoto's Thyroiditis-------autoimmune disease
Scarring Discoid Lupus--------autoimmune disease
Intersticial Pneumanitis------They tell me this is so far mild as only about 12 to 15% of the tissue is damaged.
Mixed Connective Tissue Disease associated with Lupus---Bad legs and hips, pain in shoulders, chest, and all joints. MRIs showed some tareing in connective tissue of both knees------------Walking is Ok much of the time as long as it is on the flat. Stairs are almost impossible and hills are a problem. Have had physical therapy that helped some. Do that at home now.
Severe Gerd
Borderline Diabetic---------only in this past year
Hypertensive heart ( not high blood pressure ) ---- the feeling is that this was caused from the thyroidis not being treated properly for almost 5 years
Severe Sleep Apnea.----------No one knows why on that one but like thyroiditis and lupus, it causes muscle and joint pain and fatigue from low 02 saturation level while you sleep.
It also appears I have some allergies, I haven't begun all those tests yet because of finances.
I'm not really sure if we have stories or on going sagas because these things are forever morphing into new, fascinating and sometimes frightening problems. I will not go into the strange episodes I have had over the years, but you can see for all I think I have been through, especially these last 6 years when I was certain there was something wrong constantly and the Dr.s said it was my imagination, I have had it much better and easier than most.
My faith has seen me through the times when I had several years worth of abdominal pains that resulted in surgery and several bouts of pleurisy. Each and every time no cause was found. It is really true that when man can do no more, there is GOD.
It is nice to know your story. If it didn't help you to tell it, it helped me to count my blessing because I have been grousing some lately, especially about finances. We hate owing and there is just no way to pay this all off at once.
One question I would like to ask that my Dr.s have not given me a satisfactory answer on. All the tests in the past year and 1/2 have shown that my lymph count has been dropping. It has gone from 44 to 20 over that period of time with a normal on the test being 25 to 35. Any thoughts on this one?
I hope you continue to be able to be on the boards. Yours in Faith.
May God Bless and Keep Us All
Bonnie
Thanks for sharing a bit of what you have been through It is so hard to deal with some of these doctors especially when they say its all us being crazy that is causing the problem. The scary and sad thing is that some people accept that as an answer and go on thinking they have Psychiatric problems!! Eventually we all are led to the right place with the right people. God always provides us with answers if we are FULLY willing to accept Him into our lives. I have had a lot of problems with money too, but thankfully the Lord provides what I need and I have never gone without. I have had a few calls from the phone company and on one of my loans, but they have to wait sometimes because getting food in my mouth, warmth, and shelter are important. I have a great roomate and friend that helps me out when I need it too, thank God for her!!! My parents are good to me also, so I also thank God for them too. The answers are always within reach if we look for them!!
I like to share my story with others so that they won't feel as alone. SO many people have very similar stories to me... its such a deception when you find out the truth! We can all band together and fight about Lupus and Hughes Syndrome AND other Autoimmune conditions so that WE can share OUR information with these doctors to keep them up to date!!
Bonnie- Your lymph count could be dropping because of autoimmune activity. It will rise up high when you have inflammation/infection and it can drop very low when we have inflammation too! It confuses doctors big time, but thats one of the features of Lupus. My bet is that you do have Systemic Lupus, Discoid Lupus (it can be uncommon to have both, but not impossible) and the other diagnosis' that you listed. I dont know if you have MCTD but I am pretty sure that you do have Systemic Lupus. The low lymph count doesn't occur in a lot of other diseases!
Please take care and thanks for the support. This is a great place to come!!
~Luv, Angelic
P.S. My philosophy is that if I can help ONE person to get better and get diagnosed or treated then my life is complete I had helped 75 people get diagnosed before and I hope that I can get that number over 1000!!!
My Journey to a Diagnosis :) 
