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plshelpmyfatigue
@plshelpmyfatigue

Posts: 15
Joined: Oct 19, 2017

Help! Debilitating Fatigue

Posted by @plshelpmyfatigue, Wed, Aug 8 7:16am

Hi all– I have had debilitating fatigue for over a year now. We discovered I have a thyroid disease; however, even after months of having normal numbers, the fatigue has persisted. About four weeks ago hard, painless lymph nodes popped up in my groin and my neck and are continuing to grow. Furthermore, I have had a fever of 100 degrees for 3 weeks. My blood results showed a 13.2 mg/l for C reactive protein, low MCV, high neutrophils, and relatively low lymphocytes. I have lost 9 pounds in two weeks. I am studying abroad in Spain, and the doctor I met with said it is probably just a throat infection and to take antibiotics, but my throat doesn’t hurt and neither do my lymph nodes. I was wondering if anyone had any insight or comments, because I know these are all the symptoms of lymphoma… I am meeting with an American doctor next week, but thought I would post here to see if I could receive insight before then.Thank you!

REPLY

@plshelpmyfatique Sorry your still not feeling well. It could be an infection of some kind that you caught. That is a really good idea you are seeing an American Dr. The proper way they can tell if you have Lymphoma is to biopsy the lymph nodes.

I have follicular lymphoma which was found by a CT scan for another illness. I had zero symptoms and I have perfect blood work. So you would never suspect I had anything wrong if they had not done a biopsy. It was only through the biopsy that I was diagnosed.
Ask the American Dr if you can get a biopsy of the lymph node to rule out lymphoma.

My oldest son by the way had similar symptoms to yours in college. They never figured out what was making him sick. It was a mystery infection.
Only thing that we thought was the possible cause for him, was his dorm had a bird nest in the bathroom vent. Well he sprayed the vent with lysol to try and get the dusty bird nest out. When he sprayed that spot he must of inhaled bird droppings. That was the only explanation of him getting sick. He caught some infection from that.

Were you around any animals, of any kind? If so, let the Dr. know..

After you meet with the American Dr. would you mind posting what he says?

Drink LOTS of Water in the meantime, and take vitamin C or foods high in vitamin C. That will help boost your immune system.

I will be thinking about you. Wishing you the best.

Jackie

Hi Jackie–

Thankyou so much for your reply. So sorry to hear about your diagnosis, and hope you are doing okay. I will absolutely see if my doctor can do a biopsy when I am home.

No animals of any kind unfortunately. I have had multiple of these "mystery" infections unfortunately, including one two months ago. My C reactive protein has been incredibly high multiple times over the past few years but we never figured out why, even when I wasn't symptomatic.I will absolutely post what the doctor says, and drink lots of vitamin C.

Thank you so much!!!

I am glad you have done your homework and will see another doc. Good luck.

Possibly Eppstein Barr or Mono? If the swelling comes and goes, it could also be follicular lymphoma a slower growing type that waxes and wanes. I would definitely push for a needle biopsy and a CT scan to see whether the nodes are necrotic (dead inside). ask for an LDH lab test. High LDH can be another sign of blood cancer and would further require additional testing. The main thing is you NEED additional testing to determine the cause of this. If the doctor you are seeing isn't helpful, ask the embassy for a referral to a hematologist. Best luck to you.

Keep researching and documenting your symptoms. Every little thing you notice may help the doctors figure out what's going on. Sometimes it's quite a mystery but keep after it. FYI, I had mono several years ago (as an older adult)……it caused severe lymph node swelling and the fatigue lasted a year or more. I now have elevated levels of the Epstein Barr virus and it acts up now and then (anytime I get stressed or tired)…..it can reappear in some people off and on forever once you get it. There is a blood test for that that will tell you if you have mono and also what your levels are for Epstein Barr….perhaps ask your doctors to look into that or ruling it out. Good luck……….

I had similar symptoms starting in April 2017. It took three lymph node biopsies (2 excisional and 1 core needle) and 10 months before I was diagnosed with a T-cell lymphoma called Angioimmunoblastic T Cell Lymphoma (AITL). My local oncologist at the time was absolutely convinced it was not cancer because my lymph nodes waxed and waned. Mayo Clinic in Rochester diagnosed me and we tell people they saved my life. I was in very bad shape by that point. I would recommend CT scans and to trust your gut and keep digging if needed. Here’s a link to a good article on AITL http://www.cancertherapyadvisor.com/hematology/angioimmunoblastic-t-cell-lymphoma/article/597504/
Good luck to you!

@cbb123 I firmly agree with your statement "I would recommend CT scans and to trust your gut and keep digging if needed." About 2/3 century ago I started asking doctors what is the problem? for 70 years doctors named the disorder as being the latest thing they had read about in a magazine, seen on "ER", or taken a class on. But eventually the truth begins to come when People like Bindings Site and Mayo and Alnylam and Pfizer began to see the Potential of medical practice dealing with rare diseases. Now understand, it would not have made much difference had I known about Gelsolin. I probably would not be as smart or good looking as I am. But I would not have worried so much or spent so much on repairs. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" "…Trust your gut and keep digging…"

Liked by gingerw

@cbb123

I had similar symptoms starting in April 2017. It took three lymph node biopsies (2 excisional and 1 core needle) and 10 months before I was diagnosed with a T-cell lymphoma called Angioimmunoblastic T Cell Lymphoma (AITL). My local oncologist at the time was absolutely convinced it was not cancer because my lymph nodes waxed and waned. Mayo Clinic in Rochester diagnosed me and we tell people they saved my life. I was in very bad shape by that point. I would recommend CT scans and to trust your gut and keep digging if needed. Here’s a link to a good article on AITL http://www.cancertherapyadvisor.com/hematology/angioimmunoblastic-t-cell-lymphoma/article/597504/
Good luck to you!

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@cbb123 I think this is what my husband has (AITL) after his findings this week, and we are waiting on biopsy results to confirm. I would appreciate any and all resources you have found to help you through this time, support groups for AITL? your treatment plan? etc… I am terrified of this diagnosis. thank you

Hello @aubree6284,

I can only imagine your anxiety and worry! Angioimmunoblastic T-cell lymphoma (AITL) is a rare form of non-Hodgkin lymphoma, which is a group of related cancers that affect the lymphatic system (lymphomas). https://rarediseases.org/rare-diseases/angioimmunoblastic-t-cell-lymphoma/
I’m tagging @thorsmom1959 who mentioned being diagnosed with AITL in this discussion:
https://connect.mayoclinic.org/discussion/angioimmuneoblastic-t-cell-lymphoma/

@aubree6284, may I ask if you would share a bit more, perhaps about symptoms that led your husband to get a diagnosis? What tests has your husband undergone?

@plshelpmyfatigue

Hi Jackie–

Thankyou so much for your reply. So sorry to hear about your diagnosis, and hope you are doing okay. I will absolutely see if my doctor can do a biopsy when I am home.

No animals of any kind unfortunately. I have had multiple of these "mystery" infections unfortunately, including one two months ago. My C reactive protein has been incredibly high multiple times over the past few years but we never figured out why, even when I wasn't symptomatic.I will absolutely post what the doctor says, and drink lots of vitamin C.

Thank you so much!!!

Jump to this post

Have u been tested for Sjrogens. My throat feels like that alot and my c reactive protein is always high also. I have thyroid w/sjrogen and SLE

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