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zorm 02-01-2006 12:35 PM

finally diagnosed sle, sticky blood and a cist
Hello all,

I was diagnosed with sle, sticky blood and a cist in my brain. by graham hughes two weeks ago. thank you to everyone on this journey to a diagnosis. Especially veej, golden wings and all the other lovely people. Its still a very long journey i wont start treatment till next week.

Love to you all

Zoe x

VeeJ 02-01-2006 01:45 PM

Re: finally diagnosed sle, sticky blood and a cist
Zoe, I'm glad you posted! I've been watching, hoping that you'd gotten concise results from Dr. Hughes; but I wish he'd found less going on, of course... Meanwhile, I hope anything you've started on already is starting to help you. Huge hugs for you, Zoe. Check in when you are able, OK? Always, Vee

goldenwings 02-01-2006 02:35 PM

Re: finally diagnosed sle, sticky blood and a cist
Hiya Zoe,

Glad to hear from you, but of course not your diagnosis. You have proven you have a strong mind and are a determined lady. You had blips along the way, just as we all do but now you can work towards setting your goals in your mind and aim to reach for them.

Once all of your drug regimes are sorted out and you know exactly what is going to happen treatment wise, with therapy and so on, then you will be able to work with your doctors and do your best to get fitter and stronger. Remember that you are a lady with lupus, lupus isn't who you are.

I have had SLE for over 30 years as I have said before, and I have also got other medical problems and physical disabilities. I personally know what an uphill battle all of this can be and sometimes it can be frightening, but I also know that now you are diagnosed finally you can begin to work out how you can manage your life and your health and make plans how to live your life to the best of your ability. You will get there Zoe, and we will all be here for you whenever you need us.

Take care.

goldenwings :angel:

VeeJ 02-01-2006 07:24 PM

Re: finally diagnosed sle, sticky blood and a cist
Dear Zoe, I've been in a bit of a fog, and I realized that you'd clearly written that you begin treatment *next week*. Please forgive my misreading your first msg. I think you've landed in one of the best places in the whole world for lupus/APS help, as they "know their stuff" in a very big way.

We'll all watch for your updates. Until later, with more big hugs, Vee

goldenwings 02-02-2006 12:45 PM

Re: finally diagnosed sle, sticky blood and a cist
Dear Zoe,

Just a few more words of encouragement from me too. I too have APS/Hughes - named after Graham Hughes - or sticky blood. If you are still a patient of Graham Hughes that is great. I know he retired from the NHS in November and is now practicing from a private hospital in London.

A lot of patients that I deal with who have lupus are at a bit of a loss now because GH is not at St. T's. If you still see him then this can only be encouraging news for them to know they can go somewhere other than St.T's and receive their ongoing care from him.

You are going to come through this Zoe, I know that it is hard at the moment, but give it time to sink in and then you will be abe to start geting to grips with everything that needs to be done to make things better for you.

Take care

goldenwings :angel:

life_is_good 02-02-2006 04:40 PM

Re: finally diagnosed sle, sticky blood and a cist

You've had a long , hard journey and I'm so glad they figured everything out. Getting a diagnosis can be scary, yet bring relief at the same time. I have sticky blood, as well as SLE, so if you have any questions, feel free to ask. I feel 1,000% better since being treated, I'm confident you will also. Hang in there.


zorm 02-03-2006 05:16 AM

Re: finally diagnosed sle, sticky blood and a cist
Hello all,
Thanks again for your support and replies. Its been a tough tough year and i don't think i would have got through it without all of you. Oh and my boyfriend who i met in hospital who has been with me evryday through the last three months of hell. Id like to ask some questions to you guys if that is ok? Im probably sicker now than i have ever been and am trying to get through evryday without feeling i will have to call an ambulance. however the emergancy room never does me any good whatsoever. Yesterday is an example. I slept all daycause so weak. woke sweating my heart racing. Had about two hours of not breathing properly. followed by severe headaches and nose bleeds. also ned to pee all the time and its dark. I get throbbing where my kidneys are. i know a and e will leave in a bed and tell me nothing is wrong. so i held my boyfriends hand and promised myself to wait for tommies next week. I have no positive lupus test. i have however got low lymph count high monocytes protein in urine and blood, a very high ige allergy level, i got a butterfly rash recently, very low vitimain b12 ( anemia), protein in my spinal tap, etc. graham hughes i saw him twice on both occassions he thought i had sle and sticky blood. I was not convinced as i had the cist discovered in my head by then and felt it could be causing a majority of my symptons. My mri scan in may showed no cist and then when it was repeated in september showed a 1 and half cm cist on my pineal gland( hormonal gland). that was six months ago. its shrunk 4 mm now. Graham hughes told me that he did not think the cist would be causing all my other problems too.
i have distinct livido recticularlis on my knees and elbows. in approx imately the last few weeks i have been doing this shaking thing at night almost to get my circulation going it seems. On my second visit to greahm hughes this made him more worried my kidneys were involved. It just goes to show that evrytime you see your consultant they get more of a picture of what is going on. No matter how sick i am when i get into a consultant room i pull myself together so i can articulate evrything that is going on. I feel like i have had every possible lupus sympton from pain in my veins to pain in my spinal cord which i heard can be caused by bad anemia. i have never experienced such violent pain in my head or spine from this in all of my life. i was in hospital at the time and they did absolutely nothing for me at all. i think tommies is the only answer to sort me. Nor did they answer why there was excess blood and protein in my urine. My lupus and sticky blood tests are negative but hughes thinks i need treatment and they may take more time to turn or never even turn. He told me as well that through tommies they would get me to see a neuro about the cist. He listens and takes evything you say seriously. i lost my trust in docs a long time ago though. and even when i saw him i started questioning the diagnosis i had been seaching for for so long. i feel i can trust him though. i was given plaquenil in hospital which made me worse so it was stopped. i read somwher that pineal cists in lupus can cause drug sensitivity so i will have to seriously discuss this at tommies next week? anyone know about this? My blood pressure is high too a t the bottom. I was on lorazepan for ages which was lowering my blood pressure but i started reacting to this after a few weeks and it was a mask for what was really going on. Ok that a very long boring update for you guys. I geuss what i have been thinking is that there must be something else going on for the lupus to make me this ill. I geuss i need to accept that lupus is a very serious diseae not something that gives you joint pains only and headaches. i can accept this as long as i know there is treatment and more importantly doctors and friends who listen and know what it can do. i have felt stuck in a mad world where despite all my physical outward chnges docs were telling me there was nothing wrong. My heart goes out to all of you that have lived with the illness and taken time to help me. i will be on here soon telling you all i hope that today im feeling a little bit better. Right now i cannot control the illness and thats scary but i know im still me and things will not always be this way.

Hi veej- Thanks again for your invaluable support. i hope you are doing ok ? and would love to know how YOU are. I did what you suggested and got all my blood urine tests etc etc together to take to Hughes which built up a picture of what was going on. that advice was the best. Do you know at all why i might not have got on with plaqenil? love and hugs.x

Hi goldenwings- golden wings if anyone wants to see graham hughes he practices at the london bridge hospital privately. *** connect is a service where they can possibly get someone a quick appointment or cancellation with him. Thats for anyone trying to get diagnosed you could pass it on to. He transferred me staright to his colleague at St thomas s to take me over.
golden wings - i know you have been through a very tough time and your support and encouragement are amazing. how are you doing at the moment it has been a long while since i have been on this site? i really hope you are feeling ok?

Do you know nything about why i could not tolerate plaquenil?

Oh and a quick other question i have had a butterfly rash a couple of times recently. I don't think the sun brought it out though? is it possible to get it without sun exposure?

also developing blisters on elbows aswell as knees and hips usually these were just on my face.

Oh and the kidney thing is a bit worrying. i am peeing excess fluid it can be so dark and frothy at times too. and my blood pressure has gone high. i forgot to metion the blood pressure to hughes. i also lost 1 stone of weight in the last week.

love and big hugs to you xx
Hi life is good-

Hi life is good. Thank you for contacting me and helping me through. I have some practical questions to ask you as you have been living with this thing. and i know patients know things better tahn any docs do.

this thing where im shaking my body really fast like im trying to get my circulation going is it familiar to you?

Plaqenil- do you know why i may not be able to tolerate it?

Bllod pressure- high at the bottom i seem to be iller now its high is it anything to explain the nose bleeds too?

moods- recently i can slip into terible moods were i swear at my nearest and dearest it seems like its a bit out of my control. hughes said it would be reversed with treatment?

anemia and b12 deficiency- have you had this how much does it contribute to being ill?

Finally how do you get other people to understand. My dad will often come into my room and im not able to breathe or staring with it cause im not able to get my breath. He keep telling me to stop doing it. i told him to leave the room. i can't stop it. why wont he understand and how do i explain?

wellness and love to you

Zoe xxx

VeeJ 02-03-2006 06:21 AM

Re: finally diagnosed sle, sticky blood and a cist
Dear Zoe, NOT being a dr., whatever I say here will be true based only on what I've read, which is a pretty far cry from what a real professional knows.

Anyway... About PLAQUENIL: Dr. Wallace succinctly states that this drug is only appropriate for people *without* any "active major organ involvement". I've always believed this to mean kidneys, CNS, heart, lungs, etc. For those issues, bigger meds are required.

It may be possible that you weren't as much reacting to the Plaquenil, but rather that *other* problems that the Plaquenil can't help were active & on the rise? Meaning things that are possibly lupus-related---plus, possibly, other things NOT lupus-related.

I hope you stick with those drs. & that they are starting to sort out what's causing what. By the way, your boyfriend sounds like a very loyal guy & I'm glad you have him watching over you. With hugs, Vee

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