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Chachi
01-19-2011, 05:16 AM
Hello Everyone,

I'm so glad to have found this website, it's been reassuring to read about some of your experiences and know that I am not alone. I never would have thought that at 39 years of age I would be almost wishing for a diagnosis of Lupus or AI. I've known for a while now that something is wrong, and at this point I just want to know what it is so I can move on. I saw an allergist yesterday for a follow up. He doesn't know what is causing my chronic hives. He did have me tested- I had a negative ANA, and my sed rate as well as c3 and c4 were in the normal ranges. I do have low iron and B12, and my cholesterol is high (which is odd because I eat incredibly healthy and live a healthy lifestyle-although exercising seems to be out of the question-I did interval training with the girls at work last week and it totally kickec my a**-is it possible that the exercise/possibly overdoing it started my current "episode"? I have flu symptoms, achy joints-hands, toes, fingers, especially my knees, night sweats, sore throat/glands, headaches/sinus like and of course very low energy. My eyes feel wierd and so do my lungs....I'm taking another day off work today and trying not to feel guilty/lazy. My husband is working afternoons which means that I have to parent alone...piano lesson and homework with the 11 yr. old, and trying to meet the very demanding requests of my 3 year old...Those of you with kids know how it is-life doesn't stop because we are sick. So anyways-I am going to rest up this morning so I will be able to function this afternoon for my children. Please tell me that I am not crazy and that it is not all in my head. I told Mari in an e-mail that I got a copy of my test results and that I am going to request a referall to a rheumatologist. Other than that I am trying to take it one day at a time. Any stories/suggestions about difficulties with getting diagnosed would be much appreciated. Is there such a thing as lupus progression-hard to diagnose until the disease kicks in full force....causing damage. I'm worried, I don't want to have to wait until one of my organs packs in for a diagnosis.

Thanks for listening/reading my vent of the day. I wish you all a peaceful day. I am going to bed to read the Power of Now by Eckhart Tolle. Wish me luck!

Wendy

~LUVMYFLOWERS~
01-19-2011, 06:13 AM
Hi Chachi,
Welcome to WHL!!! You have joined a wonderful family of careing people and lot's of great information, So glad you joined!! Other's will come along soon and welcome you also.
Please know that your'e not crazey and it's not all in your head!
A little about myself,I too have been down a road simular to your's. Took reumatologist &
neurologist 7 yr's to figure mine out and put all the pices togeather. Becuse of the allover
multi body symptoms and positive blood work at times and neg at other times.
I too have chronic hive's, flu type symptoms,severe joint & bone,muscel, back pain,
night sweats, low grade fever's, severe fatigue on and off,numbness and tingeling in leg's feet and hand's, cogonitive ,short term memory problems, dammaged nerves,skin rashes and on and
on.
Becuse a lot of the immuine diseases mimic others sometimes it's harder to pin down whitch is whitch, In my case the last test my reumy sent me to neurologist again to check for possible m.s. becuse of the balance problems,legs went numb, dizziness and cogonitive issues. Went
through a battery of test nerve conduction,brain wave test,muscel test,and several mri's, and lumbar puncture, and all showed negative for ms.
So finaly sent to another rumatologist at teaching hospital with all my medical records & recent test and there got dx'ed lupus, sjorgrens, ryanuad's and his thinking by the lesions in the white matter of my brain and size and where there at that sjogrens has gone to my brain causeing
cns vasculitis. And im also awateing results on a lip biopsy to see if positive for sjogrens
becuse it showes neg in my blood work , but i have all physical symptoms of it.

So please take a deep breath and know that we are here for you!
Every one is different, some get dx'ed quickly, some take's year's, and some still in limbo.
Again welcome! Hope you have a great day, and Gentle Hug's to you !! wishing you luck!
Diane,


.

Chachi
01-19-2011, 06:40 AM
Hi Diane,

Thank you so much for the warm welcome. It means a lot. I'm sorry that you have had to experience so many symptoms. Seven years-I can't imagine! You are very brave, and definitely a trooper. Diane, I still don't understand why test results are negative when someone is experiencing so many symptoms. Wrong tests? Timing of the tests (if not in a flare?) Why did one rheumy diagnose you, when the first one didn't-with the same tests/medical records? Any ideas?
How are you feeling these days? Meds working? I sure hope so. After seven years you certainly deserve some respite.
Take good care,
Wendy -aka Chachi

tgal
01-19-2011, 07:40 AM
Hi Wendy,

So glad you are posting and so sorry you are feeling bad today. You are not crazy or lazy. We understand the fatigue and it is not just being tired like the rest of the world sees tired. There is actually a thread somewhere (usually I would find it for you but I am having a bit of brain fog today and wouldn't be able to locate my head if it wasn't attached to my body!) where people give some wonderful descriptions of what this fatigue feels like.

As for the tests, one of the problems is that there is no actual test for Lupus. Basically when they have ruled everything else out and then you have met enough of the criteria you are given a Lupus diagnosis (criteria are found in a sticky under the "newly diagnosed" section). One of the problems is that too many doctors don't understand that symptoms can be cumulative and don't all have to be found at once. Blood work fluctuates due to meds, flares, time in or out of the sun. Other symptoms come and go and what should happen is that each new positive should be added to a list and when the criteria is met a diagnosis should be made. Unfortunately the doctors are not educated on AI diseases well enough or misunderstand how to diagnose and they want the criteria to be met at one time (which is wrong). So if you get a positive ANA and a high sed rate today but when you come back covered in a rash and have swollen joints but your ANA is now neg and the sed rate is back to normal they want to dismiss the last set of blood work. Sadly a Lupus diagnosis, and most AI diagnosis, are subjective and until we educate doctors and make them understand that they have to be willing to spend more than 10 min. with us in the office too many of us are going to fall through the cracks.

Sorry I will get off my soap box now. *hugs*. Try to get some rest and stay out of the sun!

Chachi
01-19-2011, 01:34 PM
I like the soap box-it's reassuring. I've been keeping track of my symptoms recently-going back in my journal/trying to make a time line AND feeling like a big hypochondriac, but not No more! It should be helpful. I appreciate your words of wisdom like you would not believe. Hope the foggy brain clears up soon.

Take care,

Wendy

~LUVMYFLOWERS~
01-20-2011, 05:10 AM
Hi Chachi,
hope your'e feeling well today! Well for 6yr's my dx was mixed connective tissue disease
on my records was possible lupus,sjogrens & ryanuad's & fibromyligia. Doctor's
said i had several of them overlaping and tested high ana but inflamation showing in
blood work, but all other lupus & sjorgrens blood work normal. But i had all the physical symptoms, weird skin rashes,low grade fevers,memory prob, severe knee & acheing pain,mouth ulcers,hair loss,sun make's me sick,uti's that i never had problems with before,etc. So when i woud go to reummy so sick didnt think i could walk in the door,they look at me & say you have all physical symptoms of lupus & sjogrens but blood's dont match, So they would pop me
with a steroid shot give me antibotics and send me home. And that would get me over the flair
slowley till it hit me again. As i kept geting sicker with flairs & weight would fall off, they
started testing me for every thing in the book to rule out all other mimics.
So finaly a new great reumatologist that took his time with me and cared enough to get to the bottom of what i have. And i thank god for him!
I was at the end of my rope with not knowing and dr's that didnt know or take time to
even care. Yes i belive my new med's are working. Just put me on 40mg predisone & 50mg imuran, and im also doing raw food juiceing & vit flax seed,fish oil,& vit d cause of my vit d came back severly low @ 10.
Thank's so much for asking,& wishing you the best of luck! they get your's figured out and get you on some med's to make you feel better!
Gentls Hug's to you!!!! Diane,
Hi Diane,

Thank you so much for the warm welcome. It means a lot. I'm sorry that you have had to experience so many symptoms. Seven years-I can't imagine! You are very brave, and definitely a trooper. Diane, I still don't understand why test results are negative when someone is experiencing so many symptoms. Wrong tests? Timing of the tests (if not in a flare?) Why did one rheumy diagnose you, when the first one didn't-with the same tests/medical records? Any ideas?
How are you feeling these days? Meds working? I sure hope so. After seven years you certainly deserve some respite.
Take good care,
Wendy -aka Chachi

Peridot_Gem
01-20-2011, 10:20 AM
Hello Cachi,
Welcome to the WHL and i hope the threads will help you alot.
I'm not a doctor. lol but everything you've explained i'd say you've got it definitley, i was born with it and started feeling symptoms from the age of 5yrs and doctor's for the last 25yrs have had a great field day diagnosing me with this and that but never took it to the extent of going beyond testing for lupus but 2yrs back my skin went bad and i was sent to a skin specialist who sorted me with steroid based cream which was great and the following time i saw him, my fingers was purple with open cuts and my toes and he only looked at me and said you have Raynauds and i was then sent to see his client the Rheumo specialist, they've had a lovely time with taking bloods and x-rays and i see him next tuesday for furthur results.
You asked if it comes at you quickly, well mines progressed terrible in the last two years alone and joint pain and swelling like yourself, skin trouble and more all i can suggest is like you mentioned push it to get refered to a Rheumo specialist as you have good signs of it plus the trouble with lupus it makes your bloods fluctuate so much it's pure madness.

Takecare Terri & it will be nice getting to know you. xxx

Chachi
01-21-2011, 11:03 AM
Hi There!

Thanks for your response! I'm sorry that it took so long for Doctor's to figure out what is wrong with you. I assume you are taking meds, as well as the cream for your skin. Are the meds helping? Do you find they decrease the amount of flares you have/or do they make the flares more bearable? I'm curious about plaquenil-I've heard some good things about it from a colleague who has lupus.

Good news is that I spoke to my N.P. yesterday and she is referring me to a rheumatologist!!!! Yay!!!! Finally someone is taking me seriously.

By the way, I lived in England for awhile, and I'm married to a Brit! My eldest daughter was born in Guilford. We moved back to Canada when she was 1. I should get back to work. I look forward to getting to know you too!

Wendy

Peridot_Gem
01-22-2011, 07:36 AM
Hi There!

Thanks for your response! I'm sorry that it took so long for Doctor's to figure out what is wrong with you. I assume you are taking meds, as well as the cream for your skin. Are the meds helping? Do you find they decrease the amount of flares you have/or do they make the flares more bearable? I'm curious about plaquenil-I've heard some good things about it from a colleague who has lupus.

Good news is that I spoke to my N.P. yesterday and she is referring me to a rheumatologist!!!! Yay!!!! Finally someone is taking me seriously.

By the way, I lived in England for awhile, and I'm married to a Brit! My eldest daughter was born in Guilford. We moved back to Canada when she was 1. I should get back to work. I look forward to getting to know you too!

WendyHello Cachi,
I'm pleased for you that you'll be seeing a rheumo specialist and wish you all the best and that they can help with some sort of medication to help with what your going through.
I've taken steroid creams for my face but they can age you, so my skin specialist gives me a rest as he's doing now because some are great but the last lot i had started off working wonders and in september when i put the last lot on it burnt my face and i did look like my head had come out the oven, so at the mo i'm using Nivea cream just to keep the rough skin away as much as i can, some creams can flare it but it's occording to what they give you, if anything makes it worse stop adding it to your face or body straight away.

Refering plaquenil Rob on the site told me about that and i spoke with my skin specialist and he said it's great for the skin and holds the pain off in the body slightly to help, well i'm off to see my rhuemo next week and hopefully i want to go on it the same as yourself.

So best of luck to we both concerning the plaquenil.

Love Terri xxx

tgal
01-22-2011, 07:58 AM
Good Morning! Plaquenil is a first line of defense drug for lupus. It is an anti malarial drug that was found to work in lower doses for Lupus (200-400 usually). Plaquenil is slow working. It usually takes 5 or 6 months for you to really see a difference. Its effects kind of sneak up on you. One day after 4 or 5 months you realize that those rashes that you were getting every few weeks haven't come back in 2 or 3 months. I notices that the blisters in my mouth were not near as bad as they were before.

The majority of us in the states are on plaquenil. I was put on it the first day I walked into the rhuemy's office

Saysusie
01-22-2011, 09:53 AM
Hi Wendy;
You have met some of our members and have been given some excellent advice. I just wanted to make sure that I welcomed you also. I hope that you have a successful appointment with your rheumatologist. Make sure that you take your journal with you so that you can educate him about the symptoms that you are experiencing and how they are affecting you. Also, be sure to let him know that you understand the nature of AI diseases and that tests can sometimes be in the normal range, even when you are suffering from symptoms. Therefore, you want him to look at ALL of the criteria for AI diseases (and Lupus specifically) so that you and he, together, can work towards a diagnosis and an appropriate treatment regimen.
As has been mentioned to you by others, DO NOT allow doctors to dismiss you based solely upon normal blood work. It is imperative that both you and your doctor work in tandem to ensure that you are getting the best care and are taking the correct steps in order to manage your symptoms. Educate yourself so that you can educate your doctors. We are here to help you do just that! Information about this disease and how it affects you personally is one of the major steps that you can take in managing the disease and its various symptoms. Information and education are also important in order for you to make informed decisions with your doctors and to not allow them to tell you that there is nothing wrong with you or that it is all in your head!
As you have seen, the people here are the most caring, understanding and informative people on the web and we want only to help you as much as we can. Please know that you are not alone :-)

Peace and Blessings
Namaste
Saysusie

Chachi
01-22-2011, 12:18 PM
Hi Saysusie,

Words cannot express my gratitude, to you, and to the others on this site that have responded to my posts. Last year, a Doctor asked me if it was possible that I was simply overworked, and tired (having a breakdown.) His comment made me question myself, and I stopped seeking treatment, until very recently. This is an amazing website. Thank you so much everyone for your knowledge and support. I haven't felt this positive in a long time.

I wish I could bring you all with me to the appointment!!! I'll keep you posted.

Feeling strong,
Wendy xo

GoodDog
01-22-2011, 01:15 PM
Hi Chachi!! Yes, questioning myself and thinking I just need to try harder still pops in my head sometimes, but not as often now. Usually if a doctor disses my complaints I walk out. Once I didn't even say anything, just got up and walked out. But it takes awhile to get to that point of knowing yourself and your disease. We're here for you and although I'm new to the forum I'm not new to AI disease.

tgal
01-22-2011, 01:16 PM
Hi Saysusie,

Words cannot express my gratitude, to you, and to the others on this site that have responded to my posts. Last year, a Doctor asked me if it was possible that I was simply overworked, and tired (having a breakdown.) His comment made me question myself, and I stopped seeking treatment, until very recently. This is an amazing website. Thank you so much everyone for your knowledge and support. I haven't felt this positive in a long time.

I wish I could bring you all with me to the appointment!!! I'll keep you posted.

Feeling strong,
Wendy xo

Oh this type of thing makes me so mad! Doctors assuming that their little tests tell the whole story and then acting smug! If they only knew how guilty we feel already and how much we question ourselves on our own! We need them for support and understanding not to make us feel crazy when we are not! I have dealt with doctors like this as well and there is nothing that ticks me off worse!

I am glad you are going back to the doctor and I am even mor glad that you found us! Let us know how everything goes at the appointment

Peridot_Gem
01-22-2011, 01:35 PM
Good Morning! Plaquenil is a first line of defense drug for lupus. It is an anti malarial drug that was found to work in lower doses for Lupus (200-400 usually). Plaquenil is slow working. It usually takes 5 or 6 months for you to really see a difference. Its effects kind of sneak up on you. One day after 4 or 5 months you realize that those rashes that you were getting every few weeks haven't come back in 2 or 3 months. I notices that the blisters in my mouth were not near as bad as they were before.

The majority of us in the states are on plaquenil. I was put on it the first day I walked into the rhuemy's officeHi Mari,
My epilepsey nurse said that's what plaquenil is an Anti-malarial drug and it's good like your saying but she says it flares epilepsey bad, how are you coping in that manner mari.

Peridot_Gem
01-22-2011, 01:39 PM
Hi Wendy,
Thank you so much for thanking we all, i just hope it goes as well as it can when you go to the Rheumo specialist and thanks for the invite to us all. lol

Terri xxx

tgal
01-22-2011, 04:49 PM
Hi Mari,
My epilepsey nurse said that's what plaquenil is an Anti-malarial drug and it's good like your saying but she says it flares epilepsey bad, how are you coping in that manner mari.

Seriously??? Are you kidding me? Three neuro's and not one of them have said a word about that. I need to look into that. Thanks for the information

Peridot_Gem
01-24-2011, 09:30 AM
Seriously??? Are you kidding me? Three neuro's and not one of them have said a word about that. I need to look into that. Thanks for the informationHi Mari,
I'm not kidding mate about the fits with plaquenil, i showed avril what i'd got wrong with me and i told her about them wanting me on presidone and told them no when i found out it counter reacts and then saying no to the steroid jab, when i was in the day unit.
I then mentioned the plaquenil and what site members said about it being ok plus the skin specialist checking it with my meds and it works with epilepsey drugs and that's when she said it does work with them but it lowers the control stage of seizure's to how the meds help it and she got the medication book out and read it to me and apparentley she saw a lady with sjogren's disease where the rheumo had put her on plauenil and when she saw avril her fits was bad again and the main specialist for epilepsey had words with the rheumo doctor and it was stopped straight away so they could get her fits under control again.
Avril knows if they kick my fits off bad again i'll slowly pull off it, if the rheumo specalist puts me on it tomorrow because when my fits get out of control i go in coma's.

So all the best mari with getting it confirmed plus i do hope your ok. xxxx

jeanneac
01-24-2011, 09:34 AM
Chachi, I am new here too and can relate to what you have posted. I am a little older than you but have felt bad since I was about your age!! They are just now finding out that my fatigue/pain isn't depression. I am going to an exercise class tonight. I'll let you know how I make out. I am going to take it easy. I used to love my exercise classes sooooo much and miss them. I hope I can start slowly and work back up to where I can tolerate them. Good luck to you and I hope you feel better soon.

tgal
01-24-2011, 10:09 AM
Hi Mari,
I'm not kidding mate about the fits with plaquenil, i showed avril what i'd got wrong with me and i told her about them wanting me on presidone and told them no when i found out it counter reacts and then saying no to the steroid jab, when i was in the day unit.
I then mentioned the plaquenil and what site members said about it being ok plus the skin specialist checking it with my meds and it works with epilepsey drugs and that's when she said it does work with them but it lowers the control stage of seizure's to how the meds help it and she got the medication book out and read it to me and apparentley she saw a lady with sjogren's disease where the rheumo had put her on plauenil and when she saw avril her fits was bad again and the main specialist for epilepsey had words with the rheumo doctor and it was stopped straight away so they could get her fits under control again.
Avril knows if they kick my fits off bad again i'll slowly pull off it, if the rheumo specalist puts me on it tomorrow because when my fits get out of control i go in coma's.

So all the best mari with getting it confirmed plus i do hope your ok. xxxx

I looked it up and saw exactly what you are saying. I am still researching but will get back with you. Thanks for the info!

Chachi
01-25-2011, 11:04 AM
Good luck with the class! I'm hoping to exercise soon-at least go for a walk. So tired of feeling crappy. Tell me more about your story.......

wendy

Angel Oliver
01-25-2011, 11:52 AM
Hi Chaci.

I know how frustrating it can be without a diagnosis.I owned my own home,drove a sports car,holidays and then after my husband and i split,i decided to travel the world.I was liberated.My plans were to work,sell my home as i was temporarily living with my Mam and planned to buy a house and start life again.It was a depressive time,that was when Insomnia first introduced itself to me.
I worked and so wanted more.I went to work on no sleep but as time when on sleep came back.Then suddenly,when the alrm clock went off i couldnt move,just thought come on stop being lazy,but no matter how hard i tried i just couldnt move,thats when fatigued introduced itself.I had 2 friends i didnt want.
I still went to work,struggled through the day,some days with my head stuck to one side or i couldnt walk as my lower back was locked,like a knife in my butt cheek i couldnt lift up my leg.I carried on.One day i was out at a pub and a friend of mine pointed out my hair was missin,as i felt my head i had no hair n some hair was spikey.I had long hair.I was so devastated.As the days went on i lost my hair and decided all my hair must go....i had short hair.Oh how my ears n neck suffered with the cold.But it was a blessing in disguise as lifting my arms for the hairdryer was painful and the hairdryer either weighed a ton or something wasnt right.I continued on,no sleep,no feeling depressed,hair loss and now the new friend came called PANIC ATTACK.To this day this friend will not leave ,no matter how i try.
Eventually,still working these friends ganged up on me.I woke one summers day,i could hear alarms in my street going off,birds were singing.Like in the Micheal Jackson Thriller song/video,where the camera zooms in on him....i lay in total fear.It was the end of the world!!! I swear to this day that moment i truely believed the world was ending.I ran ito my mams room screaming mam the world is ending can you hear the alarms?
Turns out there was a power cut lol.....yet no when i recall it,i was convinced the world was ending.My Mam called the doctor.
When he came,he didnt examine me,i lay without being able to talk,terrified,unable to eat,crying like a baby yet in a trance....he said id had a nervours breakdown.My mam was disgusted.
This was the beginning of my story summer June 2004.
Many doctors appointments later my doctor used to sigh as i entered,i felt so little,he thought i was a time waster n told me so.Asking me why i keep coming to him when he cannot help me.I just happened to mention an illness called M.E.He said yes you have it withut even blinking.From that day 2005 i did the M.E trials which was awful.People came you had to do what they said,they basically wasnt going to help me either,just used me for a trial....i was a statistic!
During this year i had a cough and couldnt breath at night.It was terrifying.My doctor gave me over the counter medicine which actually made it worse.It got so bad i decided enough was enough.I changed doctors,but before i did i went one more time on the Monday to tell my doctor i needed help with my breathing.He said its a cough,didnt examine me gave me butter syrup over the counter medicine.The following frieday i left that doctor and went to another one.He immediately looked shocked at the state of me.I had actually got severe ASTHMA. I was put on steriods,pills n nebuliser.At last someone examined me.My lips were blue so a big give a away lol.
As time went on again this doctor was great at asthma,but soon became bored of my constant visits.In the end i broke down in tears and wrote the the manager complaining.I was changed again same surgery different doctor.In the meantime i got lock jaw,thats a whole story on its own whch haunts me...i 'll tell you again,some already know what i went through lol..OUCH!!!!
This time,he had treated my dad when he had leaukimia,so i had faith.He found out i had the following and was not a hypacondriact or a nuisance.....Fibromyalgia,Acid Reflux,Astham,Raynards,Sorgrens,Migraine,depressio n anxiety insomnia,my mates lol.
Eventuallly was dx with Lupus.I joined wHL.As usual bloods came back normal so lupus was taken off me.Since then the M.E label was put back on me,a get out clause.I know im no medic,but know my symptoms go far beyond M.E.
Ive just got over pluerisy.I was shocked to learn my doctor didnt even know id had gladular fever or my blood clot on the lung,think he thought i was lying until i told which doctor n hospital.He said he'd found me a ground breaking hosital to help me.Turns out ive already been twice and done the same course in 2006.So now im left again....to fight on.Until the doctor actually takes off the blinkers and listens.Its been hell.Many times nearly given up,but friends here always helped me through.
Sickness brings a loneliness never know before,different from the loneliness felt before.As friends stop calling,work collegues forget you.....hurts allot.But yu fight on hoping like others here,i finally get recognised as actually being sick and getting a name for the beast.Dont care what name i just need it.My doctor recently said to me,Amanda be grateful its not cancer.I said doctor im not grateful,i told him at least there wuld be an end to all this.People could see i was sick and i wouldnt treated how you treat me.He was a bit shcked and said i was depressed.I laughed....depressed isnt the word id use.We ended the chat.Not heard from him since.Ive had chest n lung pain,rang today n left a message....nothing.
So dont be afraid we all go through similar things...just keep posting here.Many understand n get you through.One day we will get our answers and i so believe sometime i will see that light at the end of the tunnel and get treated and begin to feel better.
Lots of love
Amanda.xxxxxxxxx

Angel Oliver
01-26-2011, 07:29 AM
Bumped forward!

tgal
01-26-2011, 09:22 AM
What a wonder post! That is one of the reasons that this site is so great. Everyone is so open and willing to share their stories so that others can understand that we do understand. I think most of us understand the look of disgust from the doctors when they think we are just crazy. We KNOW something is wrong but they don't listen. We just have to hang tough and keep fighting through until someone listens and understands. Thank you for sharing Amanda. We love you

Saysusie
01-26-2011, 12:16 PM
As you all know, uncaring and ignorant doctors are my biggest sore spots. I think that it is totally unprofessional on their part, as well as sheer laziness and too much arrogance. So, I always say, as Amanda has so beautifully pointed out, we must keep fighting. If we do not stand up for ourselves and insist that we are treated with respect, no one else will do it for us.
I say all of that to say, we are here to support you in that area; to provide you with information so that you can educate your doctors and make informed decisions with them and, especially, so that you will be armed with the information that you need so as to not allow them to dismiss you or your symptoms.
Amanda's post is a wonderful example of how giving, supportive, and caring the people are here and how we genuinely want only to help you in any way that we can.

I wish you the very best and know that you are not alone.

Peace and Blessings
Namaste
Saysusie

Chachi
02-09-2011, 09:54 AM
Thank you for sharing your story Amanda. Hope all is well with you.

Take care,

Wendy aka chachi-because when my husband saw pictures of me as a teenager he said I reminded him of chachi from Happy Days-nice eh!
Hi Chaci.

I know how frustrating it can be without a diagnosis.I owned my own home,drove a sports car,holidays and then after my husband and i split,i decided to travel the world.I was liberated.My plans were to work,sell my home as i was temporarily living with my Mam and planned to buy a house and start life again.It was a depressive time,that was when Insomnia first introduced itself to me.
I worked and so wanted more.I went to work on no sleep but as time when on sleep came back.Then suddenly,when the alrm clock went off i couldnt move,just thought come on stop being lazy,but no matter how hard i tried i just couldnt move,thats when fatigued introduced itself.I had 2 friends i didnt want.
I still went to work,struggled through the day,some days with my head stuck to one side or i couldnt walk as my lower back was locked,like a knife in my butt cheek i couldnt lift up my leg.I carried on.One day i was out at a pub and a friend of mine pointed out my hair was missin,as i felt my head i had no hair n some hair was spikey.I had long hair.I was so devastated.As the days went on i lost my hair and decided all my hair must go....i had short hair.Oh how my ears n neck suffered with the cold.But it was a blessing in disguise as lifting my arms for the hairdryer was painful and the hairdryer either weighed a ton or something wasnt right.I continued on,no sleep,no feeling depressed,hair loss and now the new friend came called PANIC ATTACK.To this day this friend will not leave ,no matter how i try.
Eventually,still working these friends ganged up on me.I woke one summers day,i could hear alarms in my street going off,birds were singing.Like in the Micheal Jackson Thriller song/video,where the camera zooms in on him....i lay in total fear.It was the end of the world!!! I swear to this day that moment i truely believed the world was ending.I ran ito my mams room screaming mam the world is ending can you hear the alarms?
Turns out there was a power cut lol.....yet no when i recall it,i was convinced the world was ending.My Mam called the doctor.
When he came,he didnt examine me,i lay without being able to talk,terrified,unable to eat,crying like a baby yet in a trance....he said id had a nervours breakdown.My mam was disgusted.
This was the beginning of my story summer June 2004.
Many doctors appointments later my doctor used to sigh as i entered,i felt so little,he thought i was a time waster n told me so.Asking me why i keep coming to him when he cannot help me.I just happened to mention an illness called M.E.He said yes you have it withut even blinking.From that day 2005 i did the M.E trials which was awful.People came you had to do what they said,they basically wasnt going to help me either,just used me for a trial....i was a statistic!
During this year i had a cough and couldnt breath at night.It was terrifying.My doctor gave me over the counter medicine which actually made it worse.It got so bad i decided enough was enough.I changed doctors,but before i did i went one more time on the Monday to tell my doctor i needed help with my breathing.He said its a cough,didnt examine me gave me butter syrup over the counter medicine.The following frieday i left that doctor and went to another one.He immediately looked shocked at the state of me.I had actually got severe ASTHMA. I was put on steriods,pills n nebuliser.At last someone examined me.My lips were blue so a big give a away lol.
As time went on again this doctor was great at asthma,but soon became bored of my constant visits.In the end i broke down in tears and wrote the the manager complaining.I was changed again same surgery different doctor.In the meantime i got lock jaw,thats a whole story on its own whch haunts me...i 'll tell you again,some already know what i went through lol..OUCH!!!!
This time,he had treated my dad when he had leaukimia,so i had faith.He found out i had the following and was not a hypacondriact or a nuisance.....Fibromyalgia,Acid Reflux,Astham,Raynards,Sorgrens,Migraine,depressio n anxiety insomnia,my mates lol.
Eventuallly was dx with Lupus.I joined wHL.As usual bloods came back normal so lupus was taken off me.Since then the M.E label was put back on me,a get out clause.I know im no medic,but know my symptoms go far beyond M.E.
Ive just got over pluerisy.I was shocked to learn my doctor didnt even know id had gladular fever or my blood clot on the lung,think he thought i was lying until i told which doctor n hospital.He said he'd found me a ground breaking hosital to help me.Turns out ive already been twice and done the same course in 2006.So now im left again....to fight on.Until the doctor actually takes off the blinkers and listens.Its been hell.Many times nearly given up,but friends here always helped me through.
Sickness brings a loneliness never know before,different from the loneliness felt before.As friends stop calling,work collegues forget you.....hurts allot.But yu fight on hoping like others here,i finally get recognised as actually being sick and getting a name for the beast.Dont care what name i just need it.My doctor recently said to me,Amanda be grateful its not cancer.I said doctor im not grateful,i told him at least there wuld be an end to all this.People could see i was sick and i wouldnt treated how you treat me.He was a bit shcked and said i was depressed.I laughed....depressed isnt the word id use.We ended the chat.Not heard from him since.Ive had chest n lung pain,rang today n left a message....nothing.
So dont be afraid we all go through similar things...just keep posting here.Many understand n get you through.One day we will get our answers and i so believe sometime i will see that light at the end of the tunnel and get treated and begin to feel better.
Lots of love
Amanda.xxxxxxxxx

Colleenc
02-09-2011, 11:52 AM
Hi There,

It's great that your NP has referred you to a rheumy. I noticed that your from Ottawa, so hopefully there are some good docs in your area. I live just outside of Peterborough (1hr north east of Toronto) If you have no luck in Ottawa and you don't mind driving I could recommend a few good docs in Toronto that have worked through my mess with some luck. I have been on Plaquenil since my diagnosis almost 3 years ago. The only thing it seemed to help was the sores in my mouth. I didn't notice any other benefits for me. However they may be masked by all the other drugs I'm on. I have had major organ involvment and funky (I guess thats what I will call it) blood!

Colleen

(oh and keep you NP mine has been an absolute life saver)

Chachi
02-10-2011, 12:41 PM
Another Canadian! Thanks for the reply. I'm having a really shitty day-had to stay home from work-tired, achy, everything hurts, I could go on but I won't. My appt. with rheumy has been moved to March. What am I supposed to do in the mean time? I'm starting to feel pretty darn insignificant. I'm guessing I'm in a flare, was starting to feel a bit better......but no can do. This not knowing is so incredibly hard, and having to wait, not really knowing what to do, or how to feel better. How long were you sick before you got a diagnosis? What were your flares like and how did you cope with them? Today is my daughter's 3rd birthday-so I'm going to load up on advil and make it memorable for her. This morning we went through her baby album-and she didn't believe that a lot of the pictures were of her-she kept saying that the pictures of her older sister were her-so cute. As far as my NP goes, I went in last week for a follow up appt. that she told me to book, but obviously forgot about and I got the feeling she wasn't too happy to see me. She suprised me by asking if I thought how I've been feeling could be linked to anxiety.......so disappointing-I thought she was different.

wendy

Colleenc
02-10-2011, 01:03 PM
Sorry to here your having a shitty day! )<: Me too!! Happy birthday to your daughter!!! When I responeded to your thread, I was getting ready to go to my NP. However I was taken back when I got there and She fired me for being too sick. She said I was way to complicated for her (I think she was foreced into this by her boss) but the problem is that I'm just getting over a major illness and I have been passing out which they don't know why yet and I need more test done. She just dropped me said she can't order the tests. So now I have to rely on my docs in TO to help.
They are great but are so very far away... This is a huge blow for me. I wish it could have waited until I felt better. Needless to say my husband sent a nasty e-mail this am to her, but we have not heard anything back. We have no family docs in our area and I need one ASAP. As for my diagnosis. It took a long time. I didn't present in the usual way. Started off with a hand infection from a cut that would not heal, then from there blood clots and more blood clots. I was then diagnosed with Antiphosphid antibody syndrome (APS) and factor V leiden (both blood clotting disorders). After all that I noticed that I was tired, had sores through my mouth and my joints ached. My hematologist said there might been something else and that's when I was sent to TO. It took about 2 years to get that all sorted out. I have unfortunantly had major organ involvment with my lupus. My lungs and kidneys have both been affected. My stomach and intestines have as well. When I feel good I ignore the sores or the joints, because when I'm bad it usually really bad. I'm just getting over a nasty thing where my adrernal glands stopped working because of my long term use of prednisone and cause me to go into adrenal failure. Was not fun. So hang in there it takes a while and you will have many ups and downs. When your well live life to the fullest and have no regrets!!
Oh and the anxiety thing.... Get used to them saying stupid shit like that. I have been asked if I had my period (because of the amount of blood in my urine) if I was anorexic (have you ever seen 160+ lb anorexic) They don't think before they speak. and I would have answered yes it is anxiety because you stupid ass can't figure out what the hell is wrong with me!!! LOL

Take Care
Colleen

Chachi
02-11-2011, 07:06 AM
Good to hear back from you. You're my kinda gal Colleen-your e-mail made me laugh in the middle of class. Hear anything back from the NP yet? Should get back to work.

wendy

Colleenc
02-11-2011, 08:03 AM
NP e-mailed my hubby, no response to our e-mail just that she has asked a few doc if they would take me on... Oh how nice of her!!! )<: Yes I'm still very pissy about this!!

Peridot_Gem
02-15-2011, 08:02 AM
Hi Wendy & Colleen,
Your both not well and feeling to good but you've both made my day, speaking right down to earth about how your day is feeling and no messing about and to me that is good venting on the site. CARRY ON LADIES. lol

Colleenc
02-21-2011, 09:16 PM
Well Terri I can assure you that I will always sayit how it is and never sugar coat how I feeling!! I can promise you that!!! LOL

Peridot_Gem
02-24-2011, 01:14 PM
Colleen,
I like a straight forward person you know how you stand and especially if they can take it.
I actually type on sites how i would speak out, except for the dictionary on alot of my words as i'm very broad spoken and i've offended a few people just by sending texts because of how i speak, it comes to something. lol