Chronic Mono? 5 years undiagnosed

Posted by karmagirl @karmagirl, Nov 24, 2018

I have been having "mono signs" (with no exposure) for almost 5 years: sore throat, severe fatigue, flu like condition without fevers. It is cyclical, lasts 3-5 days to the point I am in bed for days. I have given up most of my gym/exercise activities because I only have about 4 hours a day of productive time. I have seen internal and family doctors, endocrinologist, infectious disease, urology. So far they do not know why I have persistent: low blood count, high IG Immunoglubulin labs (700s) and kidney stones with bloody urine (that does not cause bladder infections). I am over 50, normal weight/BMI, normal blood pressure, normal blood sugar etc. but does not know who else to see. I get my annual physical with no other abnormal labs or tests. I'm not a hypochondriac and being dismissed with menopause does not seem to fit my condition. Need guidance to thrive, not just to stay alive. Thank you for your time.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

John, Volunteer Mentor | @johnbishop | Nov 24, 2018

Hello @karmagirl, welcome to Mayo Clinic Connect. You are not alone and I'm glad you are advocating for yourself by asking questions and searching for answers. There are several discussions here on Connect that you might be interested in reading through to find other members with similar symptoms:

Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
-- https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

Groups > Autoimmune Diseases > Desperately Trying to Get Diagnosed
-- https://connect.mayoclinic.org/discussion/desperately-trying-to-get-diagnosed/

@karmagirl I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: https://www.mayoclinic.org/appointments

John

karmagirl | @karmagirl | Nov 27, 2018

In reply to @johnbishop "Hello @karmagirl, welcome to Mayo Clinic Connect. You are not alone and I'm glad you are..." + (show)

Thank you. What type of specialist should I be making an appointment with?

John, Volunteer Mentor | @johnbishop | Nov 28, 2018

Hi @karmagirl -- I think the appointment coordinator may be able to help with getting to the right specialist to help you. There is a good discussion that offers members tips that may be helpful to read here:

Groups > Visiting Mayo Clinic > Your Tips on How to Get Off to the Best Start with a New Specialist
-- https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

@roch listed some great information in her post in that discussion here:
-- https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

John

lioness | @lioness | Nov 29, 2018

@karmagirl I'm sorry your having these symptoms and no help I had mono the Dr did blood work but Saw I had a rash .Did your Dr do any blood work? She put me on bedrest and lots of vitamins.Hope your get your diagnosis and treatment.

lilyp | @lilyp | Dec 9, 2018

Hello @karmagirl I know it so frustrating to be sick and no one can give you a diagnosis. I was the same way for 40 years, I thought I was imagining things. Doctors kept saying I was in good health. A few years ago I had a test for Epstein-Barr and it came back positive. Well at least I know that much. Don't give up some doctor will be able to help. I know its hard because you are so tired to keep being persistent but its the only way you will get answers. Take care.

soteloli | @soteloli | Dec 9, 2018

What was the treatment option

lioness | @lioness | Dec 9, 2018

In reply to @soteloli "What was the treatment option" + (show)

@soteloli Hi Im not sure if your asking me or not but when I had Mono it was over 30yrs ago the Dr put me on bedrest ,my Mom took care of me and Prescription Vitamins I don't remember exactly what they where .I had a high titer count I think that was it but you need to be under Dr,s care and still insist on the blood work for Epstein-Barr virus. Hope this helped .

lioness | @lioness | Dec 9, 2018

In reply to @lioness "@soteloli Hi Im not sure if your asking me or not but when I had Mono..." + (show)

@bonnieboo @parus @john@sololi your all welcome.

kellye5 | @kellye5 | Dec 9, 2018

In reply to @lilyp "Hello @karmagirl I know it so frustrating to be sick and no one can give you..." + (show)

Do not give up. MY EBV nos were through the roof as well testing positive for Lyme. I believe I have EBV for 40 yrs or more. Hang in..

caretakerbob | @caretakerbob | Dec 14, 2018

Hi @karmagirl, I too have been dealing with a diagnosis of reoccurring mono. I'm a 47 yr old male and the doctor(neurologist) that gave the diagnosis has shut down his practice due to retiring Sept.'18. I'm in desperate need of a doctor or hospital or anyone that knows anything about this. I've been dealing with this for the last 2.5 years. My retired doctor found this, the reoccurring mono, August of '17. My test results come back positive for active mono and the doctors around me seem to dismiss the findings(all I'm told is there's no such thing). Trying to keep up with all the files, reports, mri's,ct's, x-rays, blood work is crazy. My symptoms go from fatigue, sore joints and muscles to back spasms to the point I'm breathless. When this reoccurs, about every 3-6 months, I'm unable to work, at times walking becomes a major undertaking, sleep is unheard of, sitting for any length of time is killer, but yet standing is hard due to weakness/soreness in my legs. I'm hoping maybe someone here can lead me in the right direction to getting my life back.