It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lymphomas Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 06-09-2013, 06:03 PM   #1
Member
(female)
 
Join Date: Nov 2010
Location: U.S.
Posts: 84
momof2rugrats HB Usermomof2rugrats HB User
Havent felt good for so long :(

What kind of testing do they do for this. And if your blood tests come back ok, does that mean everything is ok? My blood test always come back perfect. I've had xrays on my back, hips and chest. CT scan on my head and face because of headaches & feeling like I have something in my nose blocking my breathing nothing was found. and abdomen area because he pushed on my spleen & it was so painful I screamed. It was enlarged but no problems. I also feel sick a lot. After I go grocery shopping I am exhausted to the point I am down for the rest of the day. I run a low grade fever for no reason. My lymph nodes in my neck are enlarged quite often. My throat has been red for about 2 yrs. It's a bright red like I an infection every single day. I have been on every allergy med but nothing works. I have night sweats quite often. Multiple times thru the night. They are so bad, I wake up 3-4 times a night soaking wet like I jumped in a pool of water. Cancer runs in my family like crazy bad. I'm a few weeks away from being 36. I have had lots of blood tests and the other things I've listed. Told I'm healthy. Other than scoliosis & they diagnosed me with fibromyalgia. I for some reason can't believe what it is. I have this suspision that they are missing something.

 
Reply With Quote
Sponsors Lightbulb
   
Old 06-09-2013, 07:26 PM   #2
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 5,121
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: Havent felt good for so long :(

I can see why you are concerned. Blood tests do not rule out lymphoma. An enlarged spleen is not normal. Night sweats, fevers, and enlarged lymph nodes are concerning, but other things than lymphoma can cause them. I think you absolutely need to have connective tissue disease (autoimmune disorders) ruled out and the best rule out for lymphoma is an abdominal CT scan and chest xray. A PET scan can follow if abnormal nodes are seen on chest xray or abd. CT scan. Have you been tested for lupus? An oncologist would check the lymphoma possibility and a rheum for lupus and related connective tissue disease. A picture of your enlarged nodes may be helpful if they enlarge and go down intermittently. I would get a copy of all your test results thus far and insist on a referral or make an appt with those two specialists on your own. A node biopsy may be required for any node persistently enlarged over 1 cm for more than a month. You are not worrying excessively. Something is wrong and you have to fight for yourself to get a diagnosis. This does not sound like fibro to me. Were you treated with antibiotics for a throat infection along the way? Are your onsils chronically enlarged? An ENT may help if so.

Last edited by ladybud; 06-09-2013 at 07:28 PM. Reason: added

 
Reply With Quote
Sponsors Lightbulb
   
Old 06-09-2013, 08:02 PM   #3
Member
(female)
 
Join Date: Nov 2010
Location: U.S.
Posts: 84
momof2rugrats HB Usermomof2rugrats HB User
Re: Havent felt good for so long :(

I have had all the auto-immune ruled out. And, no lupus. I tested positive for rocky mountain spotted tick fever. And, I had 2 rounds of doxycycline when I first got the diagnosis. And, I have been on several other antibiotic rounds thru the years. With no relief the redness never goes away at all. And, no one has ever said I had enlarged tonsils. I've had the abdominal ct scan my family physician said no problems were seen although spleen enlarged. And, I just had a chest xray last week. He was looking for plurisy or pneumonia. So, I'm assuming if anything else was going on he would've seen it? I went in because I was having chest pain & trouble catching my breath. Thank you for taking time out to respond. Much appreciated! I'm so frustrated. Tired of feeling ran down. I'm to young to feel so icky. I have teens to keep up with. I agree that an ENT would be a great next step. My back has been hurting so bad. I'm going to a ortho Dr tomorrow to talk about getting pain shots.

Last edited by momof2rugrats; 06-09-2013 at 08:04 PM.

 
Reply With Quote
The following user gives a hug of support to momof2rugrats:
Budgiegirl (06-10-2013)
Old 06-09-2013, 09:59 PM   #4
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 5,121
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: Havent felt good for so long :(

You might ask for an ASO titer to be run on blood. It is an antibody test for strept, and with a red sore throat for so long, fever, etc., I hope you have not had an ongoing strept infection that turned into rheumatic fever. Just a thought since so many tests are coming back without answers.

 
Reply With Quote
Old 06-09-2013, 10:40 PM   #5
Member
(female)
 
3red3red's Avatar
 
Join Date: Feb 2011
Location: birmingham, alabama
Posts: 73
3red3red HB User3red3red HB User3red3red HB User3red3red HB User3red3red HB User3red3red HB User3red3red HB User
Re: Havent felt good for so long :(

Another thing to consider is that many of us "tested" negative for Lupus and other autoimmune disorders for many years, only to be later told, we did have the disorder(s). Sometimes when a doctor finds nothing specific we're thrown into the Fibro bucket......and that's not saying Fibro is nothing, because it is. It has become though the modern catch all diagnosis.

I agree with the other posters, it's time to see some specialists; I have no beef with a FP doctor......many of them do a great job. My feeling they are good doctors for minor and uncomplicated problems. At the very least, if I were you I'd get copies of all your tests, x-rays, CT's and lab reports, (for as far back as you can), and find a good Internal Medicine doctor. To me, they are much better at coordination of care with other specialists and more helpful in getting you referrals to needed specialists with timely appointments.

Personally I know nothing about Rocky Mountain Fever and its potential long term effects, but again, as said above, an enlarged spleen is not normal and low grade fevers do not occur over a long period of time when everything is "normal". This does not mean you have Lymphoma, simply you need specialty care. You are the best judge of your body and in knowing something is wrong. If one doctor can't find an answer, there are many more. And over and over again on this board you read how people go to doctor after doctor without finding the answer - you have to keep seeking answers.

Good luck and God Speed.

 
Reply With Quote
The Following User Says Thank You to 3red3red For This Useful Post:
Budgiegirl (08-01-2013)
Old 06-10-2013, 05:54 AM   #6
Junior Member
(female)
 
Join Date: Apr 2013
Location: Canada
Posts: 45
Budgiegirl HB UserBudgiegirl HB User
Re: Havent felt good for so long :(

Agree with other posters -- you need good internal med doc. Many doctors, when they hear hoofbeats, they cling to the idea that it must be a horse. One specialist I know said that there is a prejudice against those who consider zebras when diagnosing patients, as if the specialist is on an ego-trip or something. Me? I'd rather consider everything and rule EVERYTHING out, just to be sure. Also, my sister tested negative for Lupus four years ago and so was not treated for it. She died unexpectedly last March due to the damage the Lupus had done to her lungs. She was 44 years old.

 
Reply With Quote
Old 06-10-2013, 09:20 AM   #7
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 5,121
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: Havent felt good for so long :(

Ditto to the idea that lupus shouldn't be crossed off the list based on a negative test. I have lupus and had a negative test for 10 years before it turned positive. In addition, 4-5 % of lupus patients remain with symptoms but with negative ANAs throughout the course of illness. In fact, I would put lupus at the top of the possibility list right now. A rheum should test all the ways lupus can show up, not just an ANA. There are many other clues, labs and antibodies that can be checked. Agree with getting all previous test results gathered together for review by any new Drs. Keep plugging away at this. I know it feels overwhelming and takes energy, but you have to do it. Maybe a family member can help with the process. Medical offices can now scan and email your records, mail or fax so you don't have to pick them up.

 
Reply With Quote
Old 06-10-2013, 12:40 PM   #8
Member
(female)
 
Join Date: Nov 2010
Location: U.S.
Posts: 84
momof2rugrats HB Usermomof2rugrats HB User
Re: Havent felt good for so long :(

Thank you so much for all the advice & info! I just have the feeling that something is NOT right. And, trust me, I am persistant until they tell me to go to a psych. And, then, I know its time to move on!! I'm going to call an ENT to see if they need a referral which I'm sure they will. I went to my appt this morning to talk about pain shots and my appt isn't until tomorrow

 
Reply With Quote
Old 06-10-2013, 02:31 PM   #9
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 5,121
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: Havent felt good for so long :(

Hate to say it but many with lupus and other serious illnesses have been advised to see shrinks just because what they had defied diagnosis. Believe me, psych problems do not cause fever and enlarged lymph nodes and spleen. You will get to the bottom of it, but please don't buy the "it's all in your head" idea. No, it's in your body and you just don't have a name for it yet.

 
Reply With Quote
The following user gives a hug of support to ladybud:
Budgiegirl (08-01-2013)
Old 06-10-2013, 02:49 PM   #10
Member
(female)
 
Join Date: Nov 2010
Location: U.S.
Posts: 84
momof2rugrats HB Usermomof2rugrats HB User
Re: Havent felt good for so long :(

I have an appt with an ENT on Thursday ) didn't need a referral. They have 4-5 drs in same facility. So, I said I'd take the quickest appt in. I've heard great things about them all. I see a counselor & she says I'm not crazy lol!!! So, when they tell me to see a psych. I tell them I already do & tell them she says I'm not crazy Haha!

 
Reply With Quote
Old 06-15-2013, 09:03 AM   #11
Member
(female)
 
Join Date: Nov 2010
Location: U.S.
Posts: 84
momof2rugrats HB Usermomof2rugrats HB User
Re: Havent felt good for so long :(

Went to ENT & he was so mean he said my throat was NOT red. Suggested I get off my meds. They were causing me to have a dry throat. And, my teeth were going to eventually rot out. Because, saliva protects the teeth. He told me all the meds I'm on cause dry throat. I'm on 2 antidepressants each one works on a different chemical in the brain. And, I'm taking an antibiotic that ends today. I take tramadol because my back hurts so bad. And I am on hormone Creams. He can't tell me that hormone Creams cause dry throat. He was just a jerk. Didn't have anything to offer me. So, today, my throat is sore & he can't tell me that a red throat with white spots are normal & pus spots on the back of my throat. My mri result revealed degenerative disc disease, central herniated disc & a possible fracture. Going on the 18th for cat scan & see the Dr on the 26th

 
Reply With Quote
The following user gives a hug of support to momof2rugrats:
Budgiegirl (08-01-2013)
Old 06-15-2013, 10:55 PM   #12
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 5,121
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: Havent felt good for so long :(

So sorry the ENT was not helpful. Have the antibiotics made any difference in your symptoms while on them? Your fever? Do you have any blood count results from previous tests? Its no wonder your back hurts. An epidural steroid injection may help relieve some of that. What are you having a CT scan of? I know how difficult it is to have all these things wrong, and still be trying to take care of your family and kids. No one gets it unless you have been in that situation. I have been, as I had terrible disc disease with recurrent herniations and 3 back surgeries, 2 of which when my kids were still at home. I hope you get some answers and relief soon. Do consider epidural steroid injections for your back. They very well may help with some of the rest of your problems, at least giving you a temporary reprieve.

 
Reply With Quote
Old 06-17-2013, 05:31 PM   #13
Member
(female)
 
Join Date: Nov 2010
Location: U.S.
Posts: 84
momof2rugrats HB Usermomof2rugrats HB User
Re: Havent felt good for so long :(

The ct scan is going to be of my spine. I'm going to ask about the injections. That was my main purpose for being referred to this place. Guess they have to determine the problem & then we can discuss treatment

 
Reply With Quote
Old 07-04-2013, 07:01 AM   #14
Member
(female)
 
Join Date: Nov 2010
Location: U.S.
Posts: 84
momof2rugrats HB Usermomof2rugrats HB User
Re: Havent felt good for so long :(

Thought I'd come & give an update. Visited with the Dr. about my mri & catscan of my back. While I was there, I had him feel this knot under my rib cage. He said it felt like a fatty tumor. And it would be worth visiting a surgeon. So, I have an appt on the 16th for that. I imagine I will need surgery to remove it. It bothers me & causes discomfort & sometimes it aches. I wonder if this could make me run a low grade fever & make me feel ran down? Thanks to everyone for giving me advice & just listening!

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 02:31 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!