any ideas ?

dawn39 · Posted: Sat Sep 03, 2005 2:11 pm Post subject: any ideas ?

can anyone give me info on whether my problems could be lymphoma related or not very worried. seen haemotologist last week who was so lovely, and said my lh gland on neck was quite a size and that he would refer me for a total removal and biopsy he sent me for chest xray and blood test and phoned me up the next day to let me know they were clear and said should get appy for biopsy on monday. sorry to go on but am feeling very scared questions i didnt feel able to ask consultant cos was to scared to hear the answers at the time.
my symptoms;
chronic nausea for two years feeling of being very full up that can last hours, lack of appetite, extreme weight loss, weighed six and half stone few months ago but managed to put on 10 pounds but have started to lose it again. had gastro tests all clear.
large visible gland on lhs neck been there constantly for at least a year.
and for last 5 weeks feeling of fever but only going up to 37.5 at highest..
real bad tiredness and feelings sunburnt hot tingly feelings on neck and arms even sore to touch, but not been out in sun. i am definately not a hypochondriac and am now starting to worry about cancer because basically everything else has been eliminated in the last two years inc hormonal disturbances and any auto immune diseas have even been checked for addisons. if any one has any ideas would be much appreciated thank you.
_________________
i have been ill for two years now and am awaiting a biopsy on an enlarged node. i have been told by many doctors that there is nothing wrong and it is all in my head, so now even my family believe this i feel hopeless and very scared/

beesb · New User Joined: 07 Nov 2005 Posts: 7

Hi,
I just wanted to say good luck with your search to diagnosis your problem, its a long and worrysome process. I am sorry that your parents as well as your doctor dont think anything is wrong with you. I myself am somewhat in a similar situation. In august, i had a blood test done to reassure nothing was wrong with me because i had swollen lymph nodes in my upper neck, jaw, collar bone, and my groin. All of which are small, and the doctor said are nothing to worry about. I got my first blood test back and i was positive for having mononucleosis. It all made sense to me why my nodes were swollen, but i still to this day still have some lymph nodes that havent returned to normal size. I kep stressing to my parents that they should have cleared by now so i went back for more blood tests for my liver enzymes and a CBC. A few days later, eveything tested normal, and I am really confused. My parents as well are starting to think that i am just paranoid, and my doctor keeps telling me im OK. I just wanted to share my story, and let you know that when you think no1 is there to believe and feel the way you do, there are always people in this world who can share these similar experiences. Good luck with everything, and I hope all your problems resolve. God Bless you! Reply with updates!!

Best Wishes,
Kyle

dawn39 · Posted: Tue Nov 08, 2005 2:11 am Post subject: hello kyle

hell kyle, sory to hear about your problems, hope you are feeling better.
i had the lymph node removed and it was fine no signs of anything sinister. but then right on top of that i found a lump in breast, that has taken few weeks of terror whilst waiting for results, again non malignant.
the nausea is bloody dreadful, wakes me up in the night, early mornings
there all day, getting really fed up with it, doctor is trying to tell me it is caused by some deep emotional problem, utter crap, the only emotional problem i have is having to cope with feeling this ill all the time.
by the way i also have quite a few glands enlarged, i guess its just the way my body is.
keep in touch
dawn x
_________________
i have been ill for two years now and am awaiting a biopsy on an enlarged node. i have been told by many doctors that there is nothing wrong and it is all in my head, so now even my family believe this i feel hopeless and very scared/

beesb · New User Joined: 07 Nov 2005 Posts: 7

Hi Dawn,
Its really good news to hear that both biopsies were not cancer! It seems to me like you arent afraid to see your doctor if you feel like somethings wrong, and i think you made some good choices. I hope you feel better soon! Keep in touch!

Take Care,
Kyle

dawn39 · Posted: Tue Nov 15, 2005 11:42 am Post subject: hi kyle

hello kyle,
just a quick note to see how you are doing and have you had any answers yet?
plese let me know, im still feeling horrible, looks like i am just going to live with it, it has been suggested that i have a "functional disorder" but basically that just means that they have no idea!
well it is a wet windy dark november afternoon here only 4.30 pm and already feels like bedtime. im in the uk quite near london, where are you from?

keep in touch love dawn x
_________________
i have been ill for two years now and am awaiting a biopsy on an enlarged node. i have been told by many doctors that there is nothing wrong and it is all in my head, so now even my family believe this i feel hopeless and very scared/

beesb · New User Joined: 07 Nov 2005 Posts: 7

Hey Dawn,
I just want to say I feel so good, I have no symptoms besides these annoying swollen lymph nodes. Since before I have noticed that 2 of the lymph nodes have decreased in size, and I am starting to assure myself everything will be fine. I dont know if i should still be worried or not, but i feel excellent health wise. I am really sorry to hear that you arent feeling good at all. I hope it is just a temporary thing, and always seek the things in life that make you smile, because that can really help. I live in Baltimore, Maryland. Its getting cold now and winter is on its way! Post back sometime I really would like to know how your doing.

God Bless you!
Kyle

dawn39 · Posted: Sun Dec 11, 2005 4:09 am Post subject: Re: any ideas ?

hi kyle, glad to hear you are doing ok. im sure that your lymph nodes are still up because og the glandular fever, some never go down to normal size, mine obviously didnt, still dont know what caused mine to be so big but at least now i know its nothing sinister!
do you know what the thing that would make me smile again would be to wake up not feeling bloody sick, sitting here again been up since 5am the same as every day with this dreadflu nausea, its not a good start to the day i can tell you!!
i do envy you living where you do, i have always had this dream of moving to america have been to florida twice and loved it!
fed up with cold dreary england with only a few sunny days if we are lucky during the summer!
im finding it hard just to get to the local shops now so cant see me getting back to america anytime in the future!!
please write back if you can
happy christmas to you
love dawn x
_________________
i have been ill for two years now and am awaiting a biopsy on an enlarged node. i have been told by many doctors that there is nothing wrong and it is all in my head, so now even my family believe this i feel hopeless and very scared/

beesb · New User Joined: 07 Nov 2005 Posts: 7

Dawn Hello,
Its been a while since I have been on here, I have become less concentrated on my lymph nodes, and have noticed no big symptoms to make me worry besides the fact that my lymph nodes are still swollen. I am really sorry to hear that you havent been feeling the best lately, I hope everything changes for you oh so soon! Since the last time I talked to you I went and spoke with the doctor once again and she says that I shouldnt be so worried and that I am fine. She also said that since its my third visit that she can give me a chest xray to see if there is anything wrong in my chest, and said that I could get a biopsy done on one of my nodes. I waited for the xray results, and they came back looking good, so I have convinced myself nothing is wrong with me. Since the results of the xray, I have decided not to get a biopsy done. Im not sure if im stupid for not getting the biopsy done or not, but the lymph nodes dont really phase me like they used to. Can you please offer me some advice?? On a different note...I hope you had a very merry christmas and a happy new year! We had a miserable rainy christmas, but it was good to see the family once again.

Thank you and God Bless
Kyle

dawn39 · Posted: Tue Jan 03, 2006 2:15 am Post subject: Re: any ideas ?

hi kyle, glad to hear that everything is fine with you.
if i was you i would probably try to forget abot lymphoma worries as you say you are feeling fine and you doctor isnt worried, but it all depends really on whether you are going to continue to worry only you know whether you feel satisfied with the answers you have been given.
the only reason i enquired in the first place about my glands was that i had been feeling so ill and lost so much weight , i was looking for the answer, and when i got to see the surgeon he also agreed that i really needed to have the biopsy to see what was going on, i f at any time the haemotologist or surgeon had said it was ok i would have been out the door as i am a coward when it comes to operations. but as you are feeling fine everywhere else , i would probably not take it any further.
im still feling really sick, saw a doctor recently who suggested i may be suffering from a functional disorder called gastroparesis, where the stomach doesnt empty properly so i have been on tablets to try to help, cant say they are having any effect so far!!!!!!!
over christm,as we had some lovely weather, really cold, sunny and a bit snowy, but now we have the endless grey skies and rain back again - thats january for you!!!!

glad to hear that you are feeling fine
hope to hear from you soon
love dawn x
_________________
i have been ill for two years now and am awaiting a biopsy on an enlarged node. i have been told by many doctors that there is nothing wrong and it is all in my head, so now even my family believe this i feel hopeless and very scared/

Roberta1 · Posted: Thu Jan 12, 2006 8:28 pm Post subject: Re: any ideas ?

Hi Guys just thought I'd add my 2 cents

Kyle-
You should have the biopsy done. Not to rain on the parade but I have heard of many patients who were absolutely healthy before being diagnosed. I am one of them. All of my initial blood tests came back NORMAL. I did have a tumor in my chest but both my regular Dr. and Surgeon were 99% sure it was benign, also the 1st Pathologist that did the initial biopsy said there was nothing 'obviously malignant'. Luckily he wanted a second opinion just to be sure and sent the sample to another lab. I had no symptoms other than slight chest pain, explained away by the tumor. I hit the lucky 1%. Diagnosed w/Hodgkins Lymphoma. I also know of other HD patients who were diagnosed as more of a fluke than trying to find out if something was wrong. Do the Biopsy, and when it comes back normal you can be COMPLETELY at ease.

Dawn-
Have you tried for a 2nd opinion. You know your body don't 2nd guess yourself. Especially if it's been 2 years. See someone else, if they blow you off too , find someone else again. Keep going until you find someone willing to everything possible to help you feel better. It's not normal to feel ill every day. Again personal experience. I went to my Dr for migaraines, started having a slight muscle pain in my chest 2 days before my appointment. Mentioned the chest pain to him, he said it was caused by carrying my children- ages 2 1/2 and 5mo, I had never had the pain before. 2 wks later the pain was still there, went back to my Dr. He again dismissed it. I pushed the issue stating never in my sons 2 years of life did I experience this kind of pain. He laughed and said "Well, you're not 18 anymore!"-I'm 26 Rolling Eyes

. I asked him what I shoul do/watch for. He said if I still had the pain in 2-4 wks to make another appointment. I didn't wait, went to another Dr. On the 1st visit we found the tumor in my chest and ordered a bunch of follow up tests. I'm on my way to treating my cancer. If I took that 1st Dr's word and went along with him who knows how long it would have been before I was properly diagnosed. Moral of the story: YOU KNOW YOUR BODY BETTER THAN ANYONE ELSE. For you to be sick for so long and your Dr to say it's all in your head is completely inexcusable. Why can't they just admit when they can't figure it out?

I hope you both feel better soon. Take Care!
_________________
Love and Prayers
Berta

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