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fairy-lights 05-31-2007 09:20 AM

I Feel like I'm going downhill
I started a new thread, as I didn't think it was fair to moan about how I am feeling on singers thread, after all she's going through!!

Over the last month I have been feeling worse in myself, I have fluid retention in my left hand and arm, leg and foot, this has gotten worse and worse.

A few days ago my swollen abdomen (from my spleen) went from looking like I was six months pregnant to nine months, and the pain is so bad:confused:

I woke up yesterday with pins and needles in my left hand and a pain going across my chest, it appeared to last for ages, I thought is it a heart attack? No just bad pain, I howled out in pain and my hubby just looked so helpless, I have also been experiencing pain on the right side of my abdomen as well as my left, and either side of my groin is so painful and my lower back, I'm just not sure what is going on anymore.

I cried last night and woke up my husband, I tend to wake him up most nights as I scratch that much I make the bed bounce, and he's like don't scratch you'll make it worse, and i end up shouting you don't understand what it's like it makes me go mad, the itching won't go away no matter how hard I dig in and scratch, and it's worse with the night sweats.

I get so angry with everyone I have no patience anymore I don't even have the concentration to watch a program, what's happening to me?

My abdomen is rock hard on the left side, and I can't go to hospital, as they don't know what to do with me, I just want to curl up and close off the outside world.

DebM412 05-31-2007 09:47 AM

Re: I Feel like I'm going downhill
Fairy my friend,

I have figured things were getting a lot worse for you. Fairy, you have to get to another doctor no matter how bad you feel. You cannot wait until you feel better cause it isn't getting better.
I really think that the doc missed something in that biopsy but the important thing now is to get to another doctor with ALL of your test results.
Can your husband take you? If I was there I would take you.

Please do something to get seen by someone else!!!!

Prayers and hugs,


dma11663 05-31-2007 11:58 AM

Re: I Feel like I'm going downhill
Fairy, please, please try to get in to see another doctor/specialist. There has to be something going on that someone missed. I'm so sorry you are like this. Please, try.

Bless you.


Ails 05-31-2007 02:51 PM

Re: I Feel like I'm going downhill

Right, get it sorted. I hate to sound harsh but yu really need to. Demand that your GP refers you to a haematologist. If they refuse threaten to go to the GMC (General Medical Council) - I found that that tends to do the trick!!

I'm not telling you off (well, I am but..............) I'm just worried about you.

Ails xx

singer78 05-31-2007 03:50 PM

Re: I Feel like I'm going downhill
I just got back from the hospital & oh my goodness....YES....
Please go get another opinion. My niece is a nurse and talks about all the differences there are between doctors --not only "bedside manner," but expertise, as well. I asked her last night how "they" would have ever found out I had Hodgkin's, had NOT my collarbone lymph node swelled, and she said---"Unless you have extensive tests like you've had---they probably wouldn't have!" Fortunately, or unfortunately, I'm where I'm at--and my lymphoma is manageable---Thank God. I'm starting a new post and will fill you in---but, this is about you, Fairy-lights.....BE PERSISTANT. You are very symptomatic and something is awry somewhere. There's someone or somebody out there, that has all your answers. You just need to seek them out. I wish I knew more.....Until then, you're in my prayers. :angel:
p.s. Listen to Ails... I think she knows what she's talking about:)

sarmee 05-31-2007 08:24 PM

Re: I Feel like I'm going downhill
I just wanted to say that you are in my thoughts and prayers!

fairy-lights 06-01-2007 07:50 PM

Re: I Feel like I'm going downhill
:wave: Hi Everyone even you scary Ails:mad: (lol)

Thank you ladies for your support, much appreciated, I am so sorry I don't know what came over me, I'm not usually that bad :confused:

I have a low hemoglobin level, does any one know why this happens or what it means, I wondered if it is similar to being anemic, hence why I feel even more lethargic than normal ?

I am going to the hospital tomorrow to have some more blood tests to see if we can figure out anything new.

Thanks for standing by me again guys, it helps me feel better!!

love to you all Susie xx

fairy-lights 06-01-2007 08:50 PM

Re: I Feel like I'm going downhill
:yawn: I know me again, I still haven't been to sleep :confused:

Question any one, I have low hemoglobin levels and vitamin B12 deficiency, I know this has something to do with my protein in the red blood cells, why are they sending Nicola to see an oncologist and not me:confused:

My lymph nodes are about 2cm + and I have lots of symptoms, I just feel everyone else has better consultants than me, and by the way my bloods are abnormal.

Arghhhhhhhhhhhhhhh I know, go to the doctors :bouncing: I'm going mad, they don't seem to want to know!!!

Oh yeah, I have read that it's basically anemia if you have a low hemoglobin level.

Just wanted to add that, I'm off to bed now, I don't think I'll sleep but i'll try just wish the itching would stop!!

Bye bye for now :wave:

Ps I hope that sounded ok, I don't mean to come across like a spoilt brat, and I know of all people that were all different, I didn't mean any thing by my moaning I will promise to try and snap out of it ASAP, Ails it's time to kick *** (mine!).

*Nicola 06-02-2007 11:43 PM

Re: I Feel like I'm going downhill

You really need to go to an oncologist. This might be a stupid question, but can't you ask your doctor to refer you to an oncologist? I know that we have many, many of the same symptoms so maybe you have the same thing I do. I am sorry if this intrudes in your privacy of something, but I printed out your symptoms and took it to one of my friends who is an oncologist and he said that your doctor should refer you especially because you have low hemoglobin and blood protein and because of your lymph nodes. I will understand if you mad that I did that, but I was just worried about you. He also said that sometimes it won't show up in a biopsy right away or it can be missed. Please go to an oncologist/hematologist. If your doctor won't refer you maybe an ER doctor will. I just don't understand why he won't with all of your symptoms.

You are in my thoughts and prayers :angel:


fairy-lights 06-03-2007 08:44 AM

Re: I Feel like I'm going downhill
:wave: Hi Nicola,

I don't mind thank you for thinking of me.

They won't send us to an oncologist unless we are diagnosed with cancer!

I don't know the correct name, but you ask your friend if he knows what Reactive Sinus Hypsintosis (thats what I can't spell) it was found in my biopsies as positive, but my ENT consultant had never heard of it.

I just wondered can you have this even if you have lymphoma?

My pain has been getting worse in my abdomen in the last few days, so much so that even lifting the milk out of the fridge hurts my side.

I have pain either side of my groin, in my lower back, and I don't know if I am getting worse, or not :confused:

I just don't know what to ask or where to go from here.

may be my symptoms are nothing to do with it, but something is wrong with my immune system, I just want to know what :confused:

Thanks Nicola :) I appreciate your help.

love Susie x

pinkmada 06-03-2007 11:53 AM

Re: I Feel like I'm going downhill
hey hun! I'm so sorry everything is getting worse for you. this is so unfair on you. I really really recommend that you change gp or something. demand to see a haematologist or have another biopsy!

fairy-lights 06-03-2007 01:44 PM

Re: I Feel like I'm going downhill
Hi Mada

I'm so stupid, I just posted you a message, and then i saw you have a new thread, so I will look at that as well :dizzy:

I can't remember who I have and haven't seen, I do want to change consultants though, i will speak to my gp, and ask for his advice. I like my doctor.

i'm just being a wimp, I even got told off by my dad today, as he's worried about me, he's like whens your next appointment, whats happening, and i always have the same answer nothing at the moment.

For a while it was all go tests, scans, and now I have just been left :confused:

Same old same old I'm afraid, I will do something about it though, new lease of determination.:p


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