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Old 11-11-2003, 11:47 AM   #1
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alisonmelia HB User
Unhappy hi angelic news update

Hi i hope someone will help me. For some time my fingers would go numb be burning and itching and swell. Then my shoulder started to hurt then the joints in my thumbs, then my hips and lastly my wrists. Once i stood up and the quad mussles in my thigh just ruptured. Then i started to have allergic reactions to everything i came near. Ive been permenantly covered in hives. then i got these blister like lumps all over my hands. Ive lost about 16lb in weight i keep itching i am so tired its unbelievable getting up to answer the door is sometimes too much for me Then the lymph nodes in my groin came up one is really very large. i feel sick ive got an almost permenant headache ive got pain in both kidneys and now ive started to have nose bleeds. i also have asthma and that has been much worse. I went to the doctor and he wants to do a biopsy on the lymph nodes to rule out cancer im going for the op on monday. He is doing that and a camera into the womb to rule out cervical cancer. Ive looked at the symptoms of cancer and they just don't fit. Ive allways had problems with my bladder and kidneys so i checked up on symptoms of kidney problems. they didnt fit but then i saw a link to lupus and was unsure what it was so looked a lot of the symptoms fit but my doctor already thinks im mad and i dont want him to think im a hyperchondriac because i was looking up my symptoms. Hes told me they have to rule out cancer before they look into anything else. Does anyone think it could be this is it unlikely id like to know what people think Im a 32 yr old female. ps sorry this is so long im desperate

Last edited by alisonmelia; 12-12-2003 at 02:39 AM.

 
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Old 11-11-2003, 09:47 PM   #2
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Hi alison and welcome to the boards!

I will try and help you as best I can okay? First off, I really hope that you don't feel like your a hypercondriac!! Lots of us with lots of health issues going on do though, and its hard to stop thinking that way. It is also important to educate yourself so that YOU are taking an active role in your health! By being empowered, we feel like we are a part of our healthcare. It's not a bad thing, trust me!

It does sound like you may have Lupus and perhaps a blood clotting disorder called Antiphospholipid Syndrome. Do you have a history of miscarraige, stroke, TIA (mini stroke) or a DVT (leg clot)? If so, the headaches and the stuff going on with your "girl parts" could be caused by clotting. It is so important that you be tested for this, along with Lupus. I posted about APS in the MS forum, often MS is actually APS! Very strange I know.

The other symptoms taht you have could very well be explained by Lupus alison. I really think that it would be a good idea to take a list of the symptoms of Lupus to your doctor to review them with him/her. I have formulated the criteria for diagnosing Lupus in this forum. There is also "alternative criteria" under that too.. for the patients out there that are more difficult to diagnose. Have you ever been tested for Sjogrens Syndrome? Do you get dry eyes, mouth, nose etc? I found out that I have Sjogrens, along with Lupus and the blood clotting disorder (APS). The test for Sjogrens is really simple, there is a blood test but also there is a test called teh Shirmers Blot test where they put a piece of paper into your eye and it measures the moisture. Please please look at the symptoms and all that and see if your doctor can get you tested for these things. Lupus can occur with negative blood work too! It would be good to see a Rheumatologist to see what they think. You take care and please post again here! Good luck with your biopsy!!

~Angelic

 
Old 11-11-2003, 10:12 PM   #3
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Location: leeds united kingdom
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alisonmelia HB User
Quote:
Originally Posted by AngelicBrat
Hi alison and welcome to the boards!

I will try and help you as best I can okay? First off, I really hope that you don't feel like your a hypercondriac!! Lots of us with lots of health issues going on do though, and its hard to stop thinking that way. It is also important to educate yourself so that YOU are taking an active role in your health! By being empowered, we feel like we are a part of our healthcare. It's not a bad thing, trust me!

It does sound like you may have Lupus and perhaps a blood clotting disorder called Antiphospholipid Syndrome. Do you have a history of miscarraige, stroke, TIA (mini stroke) or a DVT (leg clot)? If so, the headaches and the stuff going on with your "girl parts" could be caused by clotting. It is so important that you be tested for this, along with Lupus. I posted about APS in the MS forum, often MS is actually APS! Very strange I know.

The other symptoms taht you have could very well be explained by Lupus alison. I really think that it would be a good idea to take a list of the symptoms of Lupus to your doctor to review them with him/her. I have formulated the criteria for diagnosing Lupus in this forum. There is also "alternative criteria" under that too.. for the patients out there that are more difficult to diagnose. Have you ever been tested for Sjogrens Syndrome? Do you get dry eyes, mouth, nose etc? I found out that I have Sjogrens, along with Lupus and the blood clotting disorder (APS). The test for Sjogrens is really simple, there is a blood test but also there is a test called teh Shirmers Blot test where they put a piece of paper into your eye and it measures the moisture. Please please look at the symptoms and all that and see if your doctor can get you tested for these things. Lupus can occur with negative blood work too! It would be good to see a Rheumatologist to see what they think. You take care and please post again here! Good luck with your biopsy!!

~Angelic
hi and thanks for your advise. This may sound daft but with lupus can your symptoms come and go. i ask this because my kidneys may be really painful for a few days then they wont hurt for maybe a week and then the pain comes back with forse its the same for the othe symptoms too the only one that aint going is my complete tierdness oh and the breathing. Also im in the uk and we have to be reffered to doctors like rheumatologists and unless my doctor feels the need he wont bother so its persuading him first and he isnt easy to persuade. Its funny though because when i was talking to my childrens paediatrician the other day i told her about my symptoms and she said it sounds like its systemic and that i should get some blood work done. if only my doctor agreed. my doctor just thinks that im stressed about the thought of having cancer and thats whats causing the other symptoms. im gonna have 2 stop typing because my wrist is really hurting and so is my kidney so it looks like im in for a good day.i hate typing wid 1 finger but i just wanted 2 say how can i be stressed about having cancer when i dont actually think ive got it. i just feel forced into having the proceedures done so they can rule it out and then try 2 find out what is really wrong.

 
Old 11-12-2003, 12:03 AM   #4
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Hello again,

Perhaps it would be in your best interest to find another GP? It is so important to have a GP that you trust when you are sick! Especially when you aren't diagnosed yet. You are SO lucky to be in the UK. I say this because you aren't far from St. Thomas' Hospital, the home of one of the worlds absolute best Lupus clinics! Dr. Graham Hughes and his collegues work out of there. Dr Hughes is my Rheumatologist (I am from Canada!) and I travelled all the way to him to get figured out. He is so amazing.. I really hope that you can be referred to The Lupus Clinic at St. Thomas' Hospital. We have to be referred to specialists here too.. it can be a pain in the rear!!

Lupus symptoms can come and go- the kidney problems you describe are very much the way my kidneys are! I have had countless bouts of kidney inflammation and right now I think my pancreas is under attack. Please take it easy and I think your child's pediatrician is on the right track. I hope that you can speak to your GP and get that blood work done and perhaps even go to see Dr. Hughes or one of his associates. What a brilliant man Dr. Hughes is, he will figure you out! Please take care, and be careful with that procedure. Take care and hope to hear from you soon

~Angelic

 
Old 11-12-2003, 01:56 AM   #5
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Join Date: Oct 2003
Location: leeds united kingdom
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alisonmelia HB User
[QUOTE=AngelicBrat]Hello again,

Perhaps it would be in your best interest to find another GP? It is so important to have a GP that you trust when you are sick! Especially when you aren't diagnosed yet. You are SO lucky to be in the UK. I say this because you aren't far from St. Thomas' Hospital, the home of one of the worlds absolute best Lupus clinics! Dr. Graham Hughes and his collegues work out of there. Dr Hughes is my Rheumatologist (I am from Canada!) and I travelled all the way to him to get figured out. He is so amazing.. I really hope that you can be referred to The Lupus Clinic at St. Thomas' Hospital. We have to be referred to specialists here too.. it can be a pain in the rear!!

Lupus symptoms can come and go- the kidney problems you describe are very much the way my kidneys are! I have had countless bouts of kidney inflammation and right now I think my pancreas is under attack. Please take it easy and I think your child's pediatrician is on the right track. I hope that you can speak to your GP and get that blood work done and perhaps even go to see Dr. Hughes or one of his associates. What a brilliant man Dr. Hughes is, he will figure you out! Please take care, and be careful with that procedure. Take care and hope to hear from you soon

 
Old 11-12-2003, 03:15 AM   #6
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Join Date: Oct 2003
Location: leeds united kingdom
Posts: 20
alisonmelia HB User
[QUOTE=alisonmelia]
Quote:
Originally Posted by AngelicBrat
Hello again,

Perhaps it would be in your best interest to find another GP? It is so important to have a GP that you trust when you are sick! Especially when you aren't diagnosed yet. You are SO lucky to be in the UK. I say this because you aren't far from St. Thomas' Hospital, the home of one of the worlds absolute best Lupus clinics! Dr. Graham Hughes and his collegues work out of there. Dr Hughes is my Rheumatologist (I am from Canada!) and I travelled all the way to him to get figured out. He is so amazing.. I really hope that you can be referred to The Lupus Clinic at St. Thomas' Hospital. We have to be referred to specialists here too.. it can be a pain in the rear!!

Lupus symptoms can come and go- the kidney problems you describe are very much the way my kidneys are! I have had countless bouts of kidney inflammation and right now I think my pancreas is under attack. Please take it easy and I think your child's pediatrician is on the right track. I hope that you can speak to your GP and get that blood work done and perhaps even go to see Dr. Hughes or one of his associates. What a brilliant man Dr. Hughes is, he will figure you out! Please take care, and be careful with that procedure. Take care and hope to hear from you soon
hi thanks for replying your like a breath of fresh air. i do want to change gps mine is really not good ive suffered from severe depression my gp asked me how mad i was and he told me that i was the sainest mad person he knew. i guess st thomas's hospital is in london but i would travel to canada to feel better at the moment. i think the doctors think that my problems are psycho symatic as i have suffered from depression. but my depression is very good at the moment. I already have a few specialists. i have a urologist because my kidneys aren't draining properly and i have an atonic bladder. ive got the gyne doctors because of the swollen lymph nodes oh and of course the psychiatrist. The pain in my joints isnt that severe but it is starting to impede on my life but i know people can get it much worse. my feeling is that im only 32 and shouldnt be having this sort of pain. but i dont know whether a gp would think it sufficient to refer me to a
rheumatologist. anyway thanks again for talking to me you are being most helpful.

 
Old 11-12-2003, 09:34 AM   #7
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Hi Alison

I think it would be great if you could get to St. Thomas Hospital!! You are NOT crazy!! They try and do this to all of us when we are trying to get diagnosed. It does sound a lot like Lupus with the lymph nodes and the kidney problems. Even a tiny bit of joint pain can relate to Lupus. The name of the Lupus Unit at the hospital in London is called the Louise Coote Lupus Unit. They are so awesome in there but you may have to wait awhile to get it. Trust me, its worth the wait! Until that time I really think that you need a new GP. Talk to friends or other family members and see if they can help you with names of another one. Please don't feel guilty about changing either, if your GP say that your a bit mad, then he probably THINKS that your more mad! Isn't that silly. I hate that. I was told I was crazy too, and that was the last straw. I was off to see Dr. Hughes! Sometimes it takes finding support to get us headed in the right direction. That is why there are so many good resources on the net Take care and talk to you soon! Your not crazy, they are!!

~Luv,Angelic

P.S. If you want to reply an easier way, you don't hit reply right on MY last message but at the bottom of the screen on the left there is the "Big reply". That way my quotes wont be posted too Its up to you!

 
Old 12-10-2003, 07:43 PM   #8
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Join Date: Oct 2003
Location: leeds united kingdom
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alisonmelia HB User
Re: please help sick and worried

hi its been a long time i had the biopsies waste of time that was my surgeon fell down the day before my surgery and broke his fingers so a lady took over i had to explain to her where the lumps in my groin were etc. when i came round i felt them and they were still there. however she came round to see me straight after surgery and said that she couldnt find the one on the left and when shed put the needle in the right one a lot of pus had come out and it was now gone i said but theyre both still there she said it was probably infection however before the proceedure she said it couldnt be infection because my blood work was clear. she didnt give me antibiotics or anything and then left telling me id have the results in 6 weeks. ive just been sent an apointment for february. the day after i came down with the flu and since then its been one thing after another i keep loosing my voice even though i dont have a sore throat my sinusis are so painful it isnt funny and pain killers and sinus medication doesnt touch it i wake up with a stabbing pain in my eye and frequently loose the vision in it ive got a urine infection that wont go away i keep getting itchy rashes which appear for no reason and then disapear a few hours later i get red blotches appearing on my face and then there gone the next time i look and although i now have the occasional good day tiredness is really a big problem. the symptoms come and go so fast that i dont have time to make an appointment at the gps cus you have to wait at least a week and i keep thinking if i make an appointment by the time i get there said symptom will have gone. like the pain in my shoulder i can be just walking around and it will go as i put it the pain will be really bad and ill have limited movement but that could be for anything from a couple of hours to a couple of days there is no telling and the same goes for the rest of the joint pain my gp has said unless im actually having limited movement when i visit him he cant assess the situation. my daughter had an asthma attack recently and when i rang up the help line the lady nearly called an ambulance for me because my breathing was so bad. im just sick of it i keep thinking ill wait till february but i know they will say when i get there that they didnt find anything so thanks and goodbye but i know if i go to my gps now theyll just say wait until february!! so i guess ill have to wait. something else thats annoying is that i keep having to come off the computer because it hurts my eyes and the other week i had to turn my tv off the lights off and close the curtains because my eyes hurt i wear sunglasses to drive even in winter i had a vision check this year which was normal?

Last edited by alisonmelia; 12-10-2003 at 08:21 PM.

 
Old 12-12-2003, 02:42 AM   #9
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hi angelic news update

hi angelic ive just been to docs and shes gonna do some blood work on me to check me for inflamation and rhumetoid is this good is this a step forward will the results help or am i just following another bum lead please let me know im going on new years eve for the test thanks angelic

 
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