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Enlarged spleen treatment (Page 1)

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My problems started in October of '07 when my Ferritin level dropped to -3, the rest of the blood work was normal. I went to an Infectious Disease Doctor and she ran tests and started me on iron injections (very painful) did this till March when we learned it was not helping. She sent me to a Hematologist and he did a battery of blood work and he just found the low Ferritin Levels and through a full body CT Scan that my Spleen was enlarged. He wasn't sure what to do about the spleen, didn't think it was related to the Ferritin Level, so go back to the Infectious Disease and she is completely baffled, ran more blood test, that one came up that I was positive for Mono, but was dormant and that couldn't be the problem for my spleen being enlarged. In August, she sent me to an Internalist and he could not determine either why the spleen was in enlarged. So a year and half later, been through 3 specialist, my spleen is still enlarged and no one has any answers. I continue to have a low grade fever, muscle spasms, insomnia, and no energy. Can some please give me an idea of where to go to find out some answers??
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First Helper patkayla
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replied October 18th, 2009
spleen
I am curious as to how you are now? My ferritin levels last checked was a 6 and I just had a ct scan (whole difffernt story) and it showed my spleen was enlarged. I am curious if these 2 are related. I tested positive 6 years ago for CMV and mono and my spleen was enlarged then. Did you ever receive confirmation that your ferritin levels and your spleen are related? Thanks for posting, you are the first post that I have found in regareds to this.
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replied October 18th, 2009
I am still the same with no new results. I have seen a Rhuematologist and he knows there is something strange going on, but determined it was not a "connective tissue" disease and showed me the door. My PCP has given up and not sure where to go now. Unfortanly I lost my job, which means I lost my health insurance, so I have to wait until I get insurance again to try something else. So I am still as frustrated as ever
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replied October 18th, 2009
oh no...sorry to hear that.
I am thinking of going to an infectious disease dr that i had seen 6 years ago with my spleen.
Good luck to you.
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replied October 19th, 2009
Thanks...if you hear anything please let me know. I have been to an Infectionous Disease, Internalist, Hemogolist (blood dr), and Rheumatologist and none of them can seem to figure out what is going on :-S
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replied January 7th, 2010
Iam also having a problem with my spleen, had a stomach flu or something for about a week and ever since I have had an enlarged spleen. Doctor referred me to a hematologist so I am just waiting for that appointment. My white count went up to 18 but has since gone back down and all my other blood work was normal. I am at a loss and have been having really bad anxiety.
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replied January 14th, 2010
i have had an enlarged spleen for 16 months. the past 6 have been the worse. i have been to a hematologist, infectious disease, rheumatologist, pain management and a surgeon. There is no reason for my spleen to still be enlarged. i had mono last year but it is no longer in my blood. the pain has been so bad that my quality of life is horrible. im also 17 years old. i hope it helps to know that you are not alone. i probably will be having my spleen removed.
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replied January 14th, 2010
Thanks Ali0girl. Did you have any other symptoms besides the pain in your side. I got my appointment for the hematologists. Can you tell me what to expect when I go to this doctor? I am really scared.
PS Do you get shortness of breath from the enlarged spleen?
If they can't find anything wrong with mine I am want to have it out too.
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replied August 13th, 2012
spleen spasams
my name is Tracy and to answer your question about shortness of breath, I can say YES! As a matter of fact when my starts spasaming it hurts to try and breath... I have Cirrohiss of Liver due to a fatty liver... I also use to have bad body spasams and have been sick off and on after lossing a baby at 6months gestation... I do think their is an underlying cause but not sure
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replied January 14th, 2010
Severe pain, fatigue, loss of appetite, in the beginning it was difficult to breathe; i ended up in the hospital because of it. Also the pain keeps me up at night or will wake me up. I also get worn out easily. Such as taking a shower, I almost pass out every time. At the hematologists, they will push on your stomach and feel your spleen. They will order a bunch of blood work and see where to go from there. The spleen is an organ that you can live without but it does have a function and it can be difficult to live without it. If the dont find anything wrong, the surgeon will not do the surgery unless you have tried everything to figure out what's wrong. I've had several CT scans, a MRI of my spine, an endoscopy and a gastric emptying study. Not to mention a bunch of different pain meds. I hope this helps. Ask me any question on this you want. With so many doctors appointments and going through it for so long, im kind of a mini expert.
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replied January 14th, 2010
What type of things have you been tested for??? I am terrified they are gonna find out I have Lymphoma or something like that. Did they ever mention anything like that to you??? I have had 2 abdominal ultrasounds which just showed enlarged spleen that was normal, pelvic ultrasound which was normal and lots of blood work which was all normal(liver function, ESR, Kidney function). My white count was high at one point when I was really sick with a stomach flu but it has gone back to normal. I also had a chest x ray that was normal. Stool tests too for C diff. They put me on anxiety meds cause I am freaking out so bad about it and I am seeing a therapist. I am 24 by the way and have always been healthy. Oh and the shower thing, I feel the same way, I usually have baths cause a shower makes me tired. How did you find out about your enlarged spleen???
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replied January 14th, 2010
I've been tested for anything that could cause my spleen to enlarge. They have talked about but my blood work has shown nothing to continue in to it. I have had an ultrasound as well and showed everything was normal except the large spleen. I got a concussion in 08. A week later I couldnt breathe and went to the hospital. They took a CT scan of my chest and saw part of my spleen and could tell it was enlarged. I was sent to a hematologist and they tested me for mono, which came back postive. It should have shrank but it didnt. I had x-ray of my chest to check for broken ribs, all came back normal. The pain makes it difficult to do anything and it will hopefully end soon. I have an appt with the surgeon for next wednesday.
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replied January 15th, 2010
I was tested for Mono when I first got sick but it was negative. When I was tested for Hep A,B and C the hep A came back positive but I had the Twinrix vaccine when i was in school and public health said that is why it was positive but a specialist told that I had Hep A so I am kind of confused. Are you sore in the mornings. When I wake up in the mornings my body is sometimes sore. My therapist said it is probably from being tense while I am sleeping. Do you have facebook. I'd like to add you if you do so that we could just send messages via there. I am trying to stay off the computer cause I google my symptoms and that makes my anxiety worse LOL. My name is Mindy and I live in nova Scotia. I have 3 kids, 2 girls and 1 boy. Thanks Ali0girl. It make sound horrible but it is nice to know I am not alone.
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replied May 26th, 2010
enlarged speen
I have just been told I have an enlarged speen with enlarged lymp nodes in abdomen and pelvis. I to have had prior iron infusions and numerous tests over the past 2 years, bone marrow, colonoscopy, extensive blood work. Everything came back normal except my iron level. I do have arthitis in my knees. I will be going to have a biopsy this time on the lymp nodes. I am kind of nervous this one though.
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replied July 22nd, 2010
Finally
I am so happy to have come across this thread. Firstly Daham I wish you all the best!!

I am a 30 year old male and have been suffering from extreme fatigue, joint pain, headaches, muscle twitches and a whole host of other issues. I have had all the regular blood work that returned normal and so i was diagnosed with Chrinic Fatigue. i have never been happy with this diagnosis and one day when I was having a really bad attack i went to my GP and literally demanded some bloods be taken because something had to be going on. I requested an Iron test and the Ferritin serum levels cam back abnormally high.

I am now awaiting US of the abdomen and have a strong suspicion that my spleen will also be enlarged as I have had a 'full' feeling in that part of my back for a long time.

Keep the faith and we will find a solution to this all!
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replied July 25th, 2010
I have had some of the same symptoms as all of you and I am wondering if they are connected to mold. Have any of you discovered your homes are mold infested?
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replied July 31st, 2010
Splenectomy
I had my spleen removed as an infant due to Spherocystosis, a heritary disease passed onto to me and my brother by our mother who also had it. Symptoms included acute anaemia, chronic fatique, acholuric jaundice and enlarged spleen. Ali0girl - you are right you can live without your spleen but it is not "difficult to live without it". All three of us had our spleens removed at different ages (21, 5 and 2 years of age) and have led perfectly normal healthy lives. The only thing you have to watch out for is exposure to infection as the spleen filters out certain bacteria, viruses and other foreign particles found in the blood. I had a course of innoculations around 15 years ago when the medical profession got all excited about it (Hibvac, Mengivac and Pneumovax) and apart from the occasional antibody tests and an annual flu vac I don't require any other treatment. I rarely get ill but if I do get run down I make sure I look after myself. Also, any nasty cuts, bites etc. should really be treated with antibiotics.
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replied August 25th, 2010
Spleenomegaly
Yeah I am having a rough time with it all right now too! I found out that I have had an enlarged spleen since 2006 and my doctor didn't even tell me about it! I have been havin alot of problems since Feb 2010 I have lost about 65 lbs and all in about a month in half. I am severley anemic and my spleen is now 17cm. I go to the surgeon tomorrow. I have multiple hypoechoic masses measuring 7mm a piece within the spleen and small amt of free fluid adjacent to my spleen! I am scared and anxious! I have been dealing with this for awhile and have had fever, chills, night sweats, no appetite, feeling full, etc... I went to a doctor where I work for back pain and he did MRI and they said my spleen was extremelly enlarged and they did a US and seen everything else. My primary doctor said they want me to see a surgeon asap! Also my blood work was normal all except everything to do with my red blood cells! If anyone knows anything or has had this please let me know what to expect! Thanks!
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replied May 17th, 2011
Have them check u for polycythemia vera. A rare blood disorder that causes the bone marrow to produce extra cells (white, red,platelets) And the spleen enlarges in order to filter out the extra cells
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replied May 17th, 2011
Have them check u for polycythemia vera. A rare blood disorder that causes the bone marrow to produce extra cells (white, red,platelets) And the spleen enlarges in order to filter out the extra cells
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replied August 29th, 2010
Ali0girl
replied January 14th, 2010I've been tested for anything that could cause my spleen to enlarge. They have talked about but my blood work has shown nothing to continue in to it. I have had an ultrasound as well and showed everything was normal except the large spleen. I got a concussion in 08. A week later I couldnt breathe and went to the hospital. They took a CT scan of my chest and saw part of my spleen and could tell it was enlarged. I was sent to a hematologist and they tested me for mono, which came back postive. It should have shrank but it didnt. I had x-ray of my chest to check for broken ribs, all came back normal. The pain makes it difficult to do anything and it will hopefully end soon. I have an appt with the surgeon for next wednesday.
ALI0GIRL-
My 15 yearold son had a concussion after a fall at the Dr.office and now 2 weeks later they have found an enlarged spleen and are testing for mono etc. Is there a link between concussion and enlarged spleen?? Thanks, Nancy P.
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replied January 21st, 2011
Spleen is huge
Hey guys!!! I hope they found out why your spleen is enlarged!!! I also have an enlarged spleen, I'm actually going for surgery to take it out in 10 days, alittle scared but I'll feel better once it's out. The pain is caused but the spleen pushing on the other organs, which is the reason for the pain. The reason for my spleen being big is because of my blood flow in my esophagus vains, there is too much blood flow, which is causing my spleen to get big and it just can't handle it anymore, which is causing bad blood and damaging my liver. Anyone that has an over grown spleen might be caused by bad blood flow going through that area. I hope this will help, good luck to you all. Please let me know if you have any questions!!! Would love to help.
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replied January 31st, 2011
Spleen lesion Help!
Hello all,
I was diagnosed with spleen lesion and been to 3 surgeons, the last surgeon told me something that previous surgeons didn't tell me. He told me that the lesion is growing inside my spleen and not outside which I have never been told before. the size is about 2x3 cm it's slightly growing inside the spleen and all 3 surgeons agreed to have it removed. They did not think it's cancerous but anything abnormal and growing should be removed. My concern is living without the spleen will be a problem for me because I understand that people without spleen are susceptible to infections that can get sick more often than people with spleen. Anyway, I have one more shot, HIB, if I decide to have surgery. Per third surgeon, they also required pre-ops test to make sure everything is ok. My previous surgeon never recommended the pre-ops and told me that I look healthy and should be ok so I think I will cross him off my list. I think pre-ops is important because I never know if my body is healthy enough to go through this surgery. I started to have some discocmfort underneath my left rib cage which I don't know if it's coming from the spleen. My sleen is not enlarge or anything, at least it doesn't show on CT but could the lesion cause that pain and discomfort? I also have my own blog to allow people to share the similar experience that I have. Anyone know what are the pre-ops that I have to go through and if I should have a 4th opionion or see some type of specialist for spleen lesion? does anyone know if it's common for lesion to grow inside of the spleen? what could be the risk if I just left it alone? Thanks to all and god bless...
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