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severe undiagnosed illness

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Old 06-16-2005, 04:52 PM   #1
Join Date: Mar 2005
Location: london
Posts: 470
zorm HB User
severe undiagnosed illness

Hello to all,

First of all i must apologise you may have seen me pop up on several boards asking questions as i ve been investigated or had different opinions from doctors about what is wrong with me?? But still no definate diagnosis. Anyway i geuss this is the best place to put a post.

Here is the story as brief as i can.
up until this time was in full health.
Nov 2004 - dianette contraceptive pill gave me allergic type spots so stopped
then took minocycline for about a month to get rid of spots felt un well on it so stopped that
dec 2004- Had two what it seemed like were cystitus took ages to clear up.
Jan 2005- woke up one morning with face bright red and texture of sand paper- prescribed anti histamines
reaction cleared.
but then started again given more anti histamines started getting really weak and headaches.
Headaches really bad lying down and got floaters too.
too weak to get to shops even and got swellings in my face
Feb 2005- saw a dermo who got me referred to accident and emergancy as she was worried. night before going in pain in thighs stomach collapsed on floor could not breath properly or even move parts of my body without great pain.
A and e referred me to a rheumatologist for possible autoimmune disease.
Was intensly sick for two weeks. so much pain did not sleep for a week. blurry vision body pain swelling face rashes around body:

Rheumie dismissed me as having bad drug reaction . Gave me sleeping pills to relieve anxiety.

March 2005- facial swellings head really blew up collapsing from headaches. Felt like i had a couple of seizures. lost bladder control.
My jaw would swell up too. And difficulty breathing. then one day the swelling went down in head it felt like it gave my body a real shock gave me real heart pain and breathing problems. stopped slleeping tablets just before this happened.
Dermotologist thought drug reaction possible angioderma but antihistamines played havoc with me too

April 2005- headaches getting worse. collapsed from a couple and felt in a daze for a couple of days. Mood really anxious.
enlarged jaw and chin continued wieght loss about 1 and half stone in three month period. horrible rash and circular spots on face itchy and skin peeling since jan . pain or numbness down left side of body. Hair loss.
mri brain scan normal though.

May/june 2005 - headaches less frequent and severe and body pain less bad too. However horrible rashes/spots spreading and worsening on face. skin thickening on face too. Swellings or liquid retention under facial skin in legs and arms too. facial peeling too.
lymph nodes swollen for last four weeks or so without pain feel rubbery to the touch. may have been there before but did not notice with eveything else going on quite frankly.
Sleeping problems wake feeling like somethings been acting on my body over night. Excessive sweating at night smell of my sweat is stronger horrible.

Endocrinologist tested me for underactive pituatary- but was noe under active though growth hormone was elevated. I thought i should have been tested for overactive pit as i felt was a problem with my growth hormone but he just sent me back to my doc saying it was probably post viral illness

So anyway where am i now? Seems no more the wiser really? not much is showing up on the bloods. positive ebv virus/ low potassium/ excess protein in urine/esr 2 and 6 on diff occasions. still waiting for microplasma serology to come back and ebv mono spot test. have not had a skin test though which i think is important.

All the docs keep saying we know you very ill- i look it- maybe its viral etc etc.
But im still suffering and they want to treat it as some post viral condition which im not having really. other docs have started asking me questions about lymphoma as they felt my glands and swelling in cheek. i have had lupus suspected but i don't think they want to investigate it further as i have had negative ana. im going to make the doc test me for lyme which they have not done especially in regard to skin rash. my own gp thinks it may be post viral or infective but admits that my immune systm seems to be doing something funny too. i think i should probaly see a viralologist/ immunologist or someone who deals in infections. but its really hard to know who to see as i wanted to get this sorted as soon as possible. i have lost the confidence to ask my docs things but i really don't think they understand how much i am suffering because of this. I had to leave my work my flat etc and feel horribly disfigured and self loathing because of this illness.
im an intellegent person who just wants to get well and get their life back but sometimes the doctors seem to try and make you seem like your going nuts!!
I also think my growth hormone is being affected in some way and would like a second opinion.

i feel so frightened and suicidal cause of this. i also think something is having a physical effect on my nerves.

i wish this horrible horrible thing would end or at least be treated with some anti biotics anything!!

the people on this board are the best. it gives me the strength to carry on.
All i can say is so much for the wonders of modern medicine eh?

any advice would be appreciated

yours gratefully zoe x

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Old 06-16-2005, 05:49 PM   #2
Senior Member
Join Date: Jan 2004
Location: Ontario, Canada
Posts: 181
hypokelly HB User
Re: severe undiagnosed illness

Dear Zoe,
I really feel for you, I cannot help you with a diagnosis as I am trying to find out what is wrong with myself. Some of your symptoms sound like mine, and I have been querying Lupus, but doc is leaning towards fibro. Anyway enough about me, the reason I'm posting is you concerned me with your thoughts of suicide. Please don't,there is alot of supportive and knowlegdeable people on these boards, lets us all help you with your journey to become well( if only in mind)
You should post on the lupus board, there is a lot of well versed vetrans of lupus, and I am no doctor but you do sound like you have alot of lupus symptoms.Please take care and remember life is good even if there is a bumpy road ahead.

Old 06-17-2005, 04:25 AM   #3
Join Date: Mar 2005
Location: london
Posts: 470
zorm HB User
Re: severe undiagnosed illness

Thank you so much Hypo kelly,

Woke up in bad way today severlysweating, skin on face literally thickened more over night swollen head and nose- horrible. Pretty breathless on waking. This alwys seems to happen after sleep its horrendous and i just don't understand it. What is happening to me its so freaky. Im trying not to be scared but i really really am. why is this illness so agressive. got letter back from a doctor i saw recently he noted enlarged lymph node in cervical chain , slight heart murmur and goiter but he reckons its ME. i never heard of ME being so agressive with anyone. Why don't they understand or pay attention to the symptons im telling them about. my jaw has enlarged but they never knew me before so they kind of don't pay too much attention. Its so so hard getting through every day. thank you for your kind kind words. i loved life before all this and it still has its tiny moments like a nice song on the radio or something. Knowing other people are going through similar things gives me some courage. Id like to know your story too. i think your words have helped me get through this day a bit.

thank you Zoe x

Old 06-17-2005, 10:45 AM   #4
Senior Member
Join Date: May 2005
Location: Upstate New York
Posts: 190
DX- HB User
Re: severe undiagnosed illness


It's time for you to begin to take some control over the information you get! One thing that I guarantee will make you feel better is if you begin to get some of the answers yourself instead of waiting for other people to tell you. There are ways you can gain information yourself -- and it will empower you to get the answers you need and want.

You can do your own research on the internet which won't give you answers about YOU, but will most definitely give you the right questions to ask the doctors. Make yourself a spreadsheet with a list of your symptoms down one side of the paper, grouped into similar categories (like, symptoms that affect your head together, then different rashes you've developed together, etc.)

Across the top, begin to list the test results you've gotten, or the possible diagnoses, or any other possible answers to the symptoms, and check them off next to the appropriate symptoms. Look up all the diagnoses or symptoms on the internet (begin by using a website such as *****.com or ) Then, when you begin to draw some conclusions yourself, begin to look at alternatives that are similar to what the doctors have told you so far.

An example of an alternative would be the lymphoma. I can tell you from my own experience (because I was diagnosed with lymphoma, then did exactly what I'm recommending you do, and proved I did not have it) -- the strange lymphoma I was diagnosed with had many of the same symptoms you are describing. Let the research lead you to new possibilities -- don't restrict yourself to what the doctors have said so far.

You might even ask your doctors to provide copies of your records and test results so you have the real medical specifics. All of those are searchable on the internet, and you can't believe how much information you'll be able to gather.

Once you begin to get your arms around your situation, you can go back to the doctor you have determined is most appropriate, and you'll be able to ask the right questions and be able to understand the answers better. Together with your doctor, you'll be able to figure out what the next steps are.

Soon you'll feel less like a victim the doctors can't fix, and more like a young woman who is taking command of her own healthcare.

Good luck to you -- and let us know how you are doing, OK? I'm sure you are very very frustrated at this point, but taking command will turn that around for you -- when you feel empowered, you will feel alive -- I promise!

Old 06-25-2005, 11:44 AM   #5
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Join Date: Nov 2004
Location: Winnipeg, Canada
Posts: 943
kitkat77 HB User
Re: severe undiagnosed illness

Please tell me that you have undergone allergy testing! Everything you describe can certainly be a severe allergic reaction. If you haven't had this done you should go immediately.

If there is no allergan found, ask for an "antibody titer" to check for various autoimmune disorders.

Old 06-25-2005, 10:09 PM   #6
Join Date: Jun 2005
Posts: 3
jopunk HB User
Re: severe undiagnosed illness


Have you checked out your pitutuary gland (sp?) A fellow coworker was having similar problem like you and could not find out what was wrong. I think she went to a endocronoligist and they realized she had a tumor on her pitituary gland. It was un usual problem, but she had it removed.... I will try to find out more about it. She no longer works with us, but might be able to find out more symptoms. I am so sorry for your problems, I know what you are going through, the unknown is so scary and frustrating. Please know that people do care for you and it is only a matter of time until you get results... Please hang in there. I will say a prayer for you

Old 06-29-2005, 01:20 PM   #7
Join Date: Mar 2005
Location: london
Posts: 470
zorm HB User
Re: severe undiagnosed illness

Thank you for all your caring responses. What you have said will help me with my reasearch. i have a second appointment with my endocrinologist tom to discuss my growth hormone and pituatry problems. It seems its still in this area although i don;t want it to be. x

Old 07-05-2005, 08:42 AM   #8
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Cushie HB User
Re: severe undiagnosed illness

You might also want to ask for a 24 hour Urinary Free Cortisol. Call it a hunch, but what you're describing reminds me of Cushing's. Also look into Lyme Disease.

Old 07-08-2005, 06:15 AM   #9
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sorrel2 HB User
Re: severe undiagnosed illness

Zoe, I have new idea that I am looking into myself. It is called carcinoid syndrome. It is when neuroendocrine tumors (hormone-secreting) occur in places other than the pituitary. Sometimes they secrete pituitary hormones (which could explain your high GH) and sometimes they secrete pancreatic hormones, or hormones involved in allergic reactions (eg histamines.) This could explain your facial flushing and allergic-type symtpoms. Check

It's pretty rare so I'm having a hard time finding a lot of info on it.

I posted on the thyroid board too in case anyone who is has been following our story there is interested.

Old 07-11-2005, 12:31 PM   #10
Join Date: Mar 2005
Location: london
Posts: 470
zorm HB User
Re: severe undiagnosed illness

these carcinoid tumors? how are they diagnosed? i think these tumors can cause cushings too. How do docs find them? interesting about them causing allergic type symptons.
Have you heard of paraneoplastic syndromes. there syndromes that give you bizarre symptons but they are symptomatic of an underlying cancer. they can fall into endocrine dermatological rheumatoid categories etc. Its basically your body responding to some cancer or something elswhere in the body. Anyhow these tumors you are talking about are they cancerous or benign?

il look into this research. thanks for pointing me to an area i can reseach.

Thanks for everyones help


Old 07-19-2005, 04:43 PM   #11
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Johnster HB User
Re: severe undiagnosed illness


So many here make GREAT points. I love the Moderators suggestions too. I have been through a lot of this same type frustrating mess too and it took years for them to find mine. Specialists all guessing at stuff. I was tested for most of the things people asked about here too. I wound up with a Rare Orphan Disease called Aggressive Systemic Mastocytosis. Please understand that I am not suggesting that you would ever have this. Iím just showing you an example of what happened to me. It has many of the same symptoms and reactions as you and many have described. Problem is that most doctors never heard of it and when they do test for it, most do it wrong because no one knows how to. Funny thing is this disease I have has to do with controlling histamines and your auto immunes system both. Sounds crazy but I think it may hold the cure or better treatment strategies for others with allergies or auto-immunes diseases. We may never know because nobody wants to put any money into research though.

Anyway, I would start simple, as some here have suggested. Start with possible allergies and start to keep a journal!!! I woke like you did until I found I had an allergic reaction to feathers in my pillows and comforter. It has to do with my disease. It did not show up in my allergy testing though. But it caused so many problems including asthma attacks and skin reactions. What made it worse was It made me week tired and sore, and I went back to bed making it even worse! Try sleeping in another room or eating different foods and laundry soaps. Write some of this down in that Journal. Good days and bad. I hope this helps. Let us know how it all goes.

Good Luck and God Bless you


Old 07-25-2005, 07:40 AM   #12
Join Date: Mar 2005
Location: london
Posts: 470
zorm HB User
Re: severe undiagnosed illness

Hey john,

i just wanted to thak you very much for taking the trouble to reply to me. i am researching having tests done so som point this will end i am sure. i ve been pretty tired lately so have not wriiten you a reply yet. There is not much in the way of advice i can offer you for your rare disorder. except for hurrah you finally got it diagnosed and i hope you are feeling better some what. what does an orphan disease mean its such a funny sounding term?? I don't want to get too paranoid about allergy stuff as i felt like this when i first started getting sick and was avoiding so much stuff. i think the pain i get in my head and jaw at night is something to do with my bones really, perhaps the position of my skeleton when i am lying down makes it worse. Anyway i know certain stuff really exasperates my symptons diet coke for example bad bad stuff and i have been drinking it for years!!

anyway all the best to you and i hope i run into you on these boards pretty soon

Zoe x

Old 07-25-2005, 08:28 AM   #13
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Johnster HB User
Re: severe undiagnosed illness

Hey Zoe,

Glad your getting some tests done. I hope and pray they find all the correct answers and treatments to the problems you have been having. I know many who have had similar symptoms or reactions to what you gave as drinking and eating even the same stuff. I will say that some carbonated drinks can lead to and cause bone loss. Not from allergies.

I would not get paranoid but still think it might be a good idea to take notes and familiarize yourself with the things you described and what makes them worse. This would apply to everything, not just allergies.

You asked what an orphan disorder or disease is. Your right, it does sound a little funny and who knows why they call them that. The definition is something like even more than rare. People with any of them would be fewer than 200,000 diagnosed with it at all today. Odds are better for winning the lottery than getting one of them. I guess I was extra lucky and special.

Let us all know what you find out.

Good luck and God Bless

Old 07-27-2005, 09:01 AM   #14
Join Date: Jul 2005
Location: Florida
Posts: 8
wesbob HB User
Re: severe undiagnosed illness

I totally agree with kitkat77, my thoughts exaclty, I have been dealing with allergies and you can be surprised at how sick you can get from simple allergies. I am thinking about what kind of laundry soap you use. Do you sleep face down on the pillow? Sometimes when we use the same thing over and over for years we all of a sudden start getting allergic to it. Our world is full of chemicals that cause severe allergic reactions as we grow older, our allergies just keep getting worse. Please see an allergiest if to rule out diagnosis only.

Old 08-03-2005, 10:40 PM   #15
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sobs HB User
Re: severe undiagnosed illness


Have you been checked for scleroderma??? Many of your symptoms are similar. Try looking at scleroderma symptoms. There are so many many different ways that it can affect a person, so I believe that it could definitely be misdiagnosed.

I know that you are scared and anxious, but try not to rush into the doctor's office and start relating your whole story with alarm. Doctors are trained to focus on your chief complaint. I know it's hard when you have one thing that is driving you nutz at the time, not to dwell on that one thing. Also, you've been ushered around to so many doctors that you may need to gather all of your records and go back to your family doctor, let him look over the records, and go from there.

Hope so much that you are doing better, and that maybe this helps.


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