Illness difficult to diagnose and doctors and such

[Scarlett]

I am so frustrated. My dh has been sick for 3 weeks. This is his second week off work. He is off indefinitely while they try to figure out what is wrong with him. He has had 3 panels of bloodwork done...no answers except his white blood count is some low and they believe he has a virus that they can't identify. The GP is stumped and has referred him to an infectious disease specialist.

 

So we call the ID office. They won't even let dh make an appt until the doctor has looked at his chart. They've had it for a week and the doctor can't get to it because of the back load of patients. The receptionist today told dh that IF the doctor approved an appt today the next available is October 25. !!!!

 

That is just. not. acceptable. There has to be something someone can do for a 45 year old man who is so sick he can't get out of bed and go to an office job.

 

There is a strong family history of bad gall bladders. But because the ultrasound came back 'normal' (no stones, looks ok) they've pretty much ruled that out. The same thing happened to his sister last year...when she had gone through every test in the book someone finally did a fuctionality test on her gall bladder and it was working at 9%! They removed it and she is now well.

 

What would you do at this point? We are going to TRY to call the GP back tomorrow and see if HE will order the function test for the gall bladder....if he won't and/or tries to pass us back to the infectious disease doc (who won't see dh for at least a month) I think he has to look for another doctor. What kind?

 

Help. Anyone with experience in navigating the medical field...please help.

[A.Balaban]

I would call the GP and ask about functionality test. Then I'd ask him for a recommendation for a different infectious disease doc. If you don't get one, then maybe consider taking him to the E.R.?

[Unicorn.]

:grouphug: I think your plan to call the gp back is a good idea. My brother kept being told his gall bladder wasn't the problem, because all the tests and ultrasounds said no. It took 2 years before they finally realized it was a problem and removed it. I hope they don't take that long for your dh!

[Scarlett]

I would call the GP and ask about functionality test. Then I'd ask him for a recommendation for a different infectious disease doc. If you don't get one, then maybe consider taking him to the E.R.?

 

He has been to urgent care one night when he was so sick. I was out of town at my sister's wedding---a 10 hour drive away! :( He was having trouble breathing and he has a history of pulmonary embolism so they did a CT scan and ruled that out.

 

When he mentioned to the GP receptionist/nurse? today about the functionality test she basically cut him off saying, 'your gall bladder test came back fine' and when he repeated it was a different test she said, 'well, all I can do is mention it to the doctor.'

 

Grrrr......

[Scarlett]

:grouphug: I think your plan to call the gp back is a good idea. My brother kept being told his gall bladder wasn't the problem, because all the tests and ultrasounds said no. It took 2 years before they finally realized it was a problem and removed it. I hope they don't take that long for your dh!

 

We can't! He can't work because he is so sick. It is just crazy.

[mumto2]

Is there any chance your dh could get an appointment with his sister's doc? They would be apt to take the problem seriously and investigate the gall bladder.

:grouphug::grouphug::grouphug:

[magnificent_baby]

You could ask for a HIDA scan for the gallbladder, like a PP suggestion. It watches the function, versus looking for stones. His GP should be able to order that.

 

I would also suggest seeing an internal medicine doctor, especially since they aren't sure if it is viral or not. I wouldn't back down and wait around to see the infectious doctor. Just call around until you can find someone to help him in the next few days! You can always keep your appt in October, but in the meantime keep seeking answers.

 

Don't give up! :grouphug:

[kwickimom]

I am so frustrated. My dh has been sick for 3 weeks. This is his second week off work. He is off indefinitely while they try to figure out what is wrong with him. He has had 3 panels of bloodwork done...no answers except his white blood count is some low and they believe he has a virus that they can't identify. The GP is stumped and has referred him to an infectious disease specialist.

 

So we call the ID office. They won't even let dh make an appt until the doctor has looked at his chart. They've had it for a week and the doctor can't get to it because of the back load of patients. The receptionist today told dh that IF the doctor approved an appt today the next available is October 25. !!!!

 

That is just. not. acceptable. There has to be something someone can do for a 45 year old man who is so sick he can't get out of bed and go to an office job.

 

There is a strong family history of bad gall bladders. But because the ultrasound came back 'normal' (no stones, looks ok) they've pretty much ruled that out. The same thing happened to his sister last year...when she had gone through every test in the book someone finally did a fuctionality test on her gall bladder and it was working at 9%! They removed it and she is now well.

 

What would you do at this point? We are going to TRY to call the GP back tomorrow and see if HE will order the function test for the gall bladder....if he won't and/or tries to pass us back to the infectious disease doc (who won't see dh for at least a month) I think he has to look for another doctor. What kind?

 

Help. Anyone with experience in navigating the medical field...please help.

 

????? Thats RIDICULOUS!!

 

I have many friends/family that had bad gallbladders, including myself. They do an u/s to look for stones and if that comes back normal you get a HIDA scan. There is NO WAY they can tell if your GB is functioning unless they do the scan. Call and demand the scan. If they wont give it to you I would find another family practice doc or general practitioner or even a nurse practitioner or PA. I would just call around and see who can see you the soonest, but your GP should order it.

[EKS]

I would ask the GP to pull strings to get you in at the ID place ASAP and wherever else s/he thinks would be appropriate.

[ssavings]

My gall bladder ultrasound was normal, but the HIDA showed a blockage from a stone th ultrasound missed.

 

Can you get him in with another doxtor today? If not, is the ER an option?

[marbel]

I would ask the GP to pull strings to get you in at the ID place ASAP and wherever else s/he thinks would be appropriate.

 

:iagree::iagree: I don't know anything about gall bladders or your husband's symptoms. But my son has some weird sickness/mystery symptoms going on. When he was referred to a pediatric GI specialist the first available appointment was 6 weeks out. I called the primary doctor and asked for another referral and to see if he could get us in sooner. My son was seen within a couple of days. This has happened several times.

 

Specialists are busy now. It takes forever to get an appointment. Push the primary doctor to find another specialist or get your appointment moved up. I'm guessing, based on experience, that doctors have time built into their day for emergency/unexpected appointments. But the staff is protective of that time. (I'll repeat that's been my experience; don't know if that is anyone else's.) Having a doctor say "this guy needs to be seen" carries more weight than a wife/mom saying it.

[Splash]

When my dh was sick in bed and off work for weeks with one diagnosis after another that didn't fit I finally got a doctor to check him into hospital for testing. I told him I was done, couldn't do it anymore and he needed to figure this out now. Within a week they had answers and treatment plan. Dh didn't fit the normal profile for illness so no one was looking at that. We'd been to ER twice, neurologist, internal medicine, clinics, etc. Infectious disease specialist is who finally diagnosed him.

 

Hope you find answers soon.

[SailorMom]

I think they need to rule out pancreatitis, kidney infection, etc.

Does he have a fever? Does he have lower back pain? Blood in stool or urine? Abdominal pain? Taking any new meds? I mean - there is so much more than Gall Bladder here.... I wouldn't focus just on that.

My SiL had Gall Bladder issues, and while she was ill and in pain - they were able to do a simple test and figure it out.

HIDA Scans are great - but usually only needed if there are elevated pancreatic enzyme levels.

Would you feel ok giving more symptoms?

[Scarlett]

Is there any chance your dh could get an appointment with his sister's doc? They would be apt to take the problem seriously and investigate the gall bladder.

:grouphug::grouphug::grouphug:

 

THIS is a thought! It is a 4 hour drive away but I would definitely take him there if I could get a doctor to take us seriously.

 

Thank you.

[Scarlett]

You could ask for a HIDA scan for the gallbladder, like a PP suggestion. It watches the function, versus looking for stones. His GP should be able to order that.

 

I would also suggest seeing an internal medicine doctor, especially since they aren't sure if it is viral or not. I wouldn't back down and wait around to see the infectious doctor. Just call around until you can find someone to help him in the next few days! You can always keep your appt in October, but in the meantime keep seeking answers.

 

Don't give up! :grouphug:

 

We did ask for the HIDA scan--several times. Nurse at GP said, 'all I can do is mention it to the doctor.'

[Scarlett]

When my dh was sick in bed and off work for weeks with one diagnosis after another that didn't fit I finally got a doctor to check him into hospital for testing. I told him I was done, couldn't do it anymore and he needed to figure this out now. Within a week they had answers and treatment plan. Dh didn't fit the normal profile for illness so no one was looking at that. We'd been to ER twice, neurologist, internal medicine, clinics, etc. Infectious disease specialist is who finally diagnosed him.

 

Hope you find answers soon.

 

I am to that point...but if we can't get the doctor to order a HIDA scan how can I get him to admit dh to the doctor.

[Scarlett]

I think they need to rule out pancreatitis, kidney infection, etc.

Does he have a fever? Does he have lower back pain? Blood in stool or urine? Abdominal pain? Taking any new meds? I mean - there is so much more than Gall Bladder here.... I wouldn't focus just on that.

My SiL had Gall Bladder issues, and while she was ill and in pain - they were able to do a simple test and figure it out.

HIDA Scans are great - but usually only needed if there are elevated pancreatic enzyme levels.

Would you feel ok giving more symptoms?

 

I don't know if they have ruled out pancreatitis...but I do know that my SILs blood levels were all normal for the entire year she was sick. In fact, they thought she had endometriosis and went in for exploratory surgery at one point. Nothing. She didn't get relief until they took her gall bladder out...it was then that they discovered something weird had happened to her appendicts. It has been infected at one point and sort of burst and sort of healed but a bunch of adhesions had formed inside of her.

[SailorMom]

I don't know if they have ruled out pancreatitis...but I do know that my SILs blood levels were all normal for the entire year she was sick. In fact, they thought she had endometriosis and went in for exploratory surgery at one point. Nothing. She didn't get relief until they took her gall bladder out...it was then that they discovered something weird had happened to her appendicts. It has been infected at one point and sort of burst and sort of healed but a bunch of adhesions had formed inside of her.

 

 

Oh wow - nasty! Poor thing.

I'm currently dealing with my own set of "doctors with no clue, and not caring" issues. It is so frustrating.

[TravelingChris]

I am so sorry, Scarlett. What this is showing to me is that not treating patients seriously as their life disintegrates before their eyes is not limited just to the young or to females. I really, really hope you find the answer very soon. I will be praying for you all.:grouphug::grouphug::grouphug:

 

As you may know, or not, my middle dd has been seriously affected by an unknown illness or condition since February with no answers yet. We are currently waiting for a visit at a clinic at Vanderbilt that we hope will have the answer but in the meantime, she had to withdraw Spring quarter and come home. She has been able to do online work so is now doing Fall quarter at the Univ. of Alabama at home. At least one week a month, she can't drive. It has been going on so long that she is becoming depressed. And really most doctors don't see how having to move back home with us, changing her whole college experience, and not being able to do research or get a job, has affected her. She was starting to make friends at college and had to leave. My heart breaks for her but I try to keep cheerful to help her. I

[Scarlett]

I would ask the GP to pull strings to get you in at the ID place ASAP and wherever else s/he thinks would be appropriate.

 

The GP has called the ID---they wouldn't even talk to dh until the GP and sent over records. ID won't make an appt until the doctor reviews records. It is maddening.

[Perry]

Do you have a University Hospital nearby? You might try that. It's usually quicker to get consults with a specialist there.

[Lara in Colo]

Do you have a University Hospital nearby? You might try that. It's usually quicker to get consults with a specialist there.

 

 

Yes to this!!!

 

A university hospital is all I will go to now!!

They seem to have the better doctors (at least here) and they really work at finding the problem.

[Scarlett]

Would you feel ok giving more symptoms?

 

 

I asked him...he is ok with me telling his symptoms. Although they are so vague it sounds like he isn't that sick, but he is.

 

The overwhelming symptom is extreme fatigue. He also has some pain (with pressure) just under the sternum. The GP pressed on that and found the pain...dh didn't know he had pain there until he pressed...but it is still sore. He has a headache that comes and goes. He wakes up most mornings feeling like he has the worst hangover of his life,(no alcohol involved!) but he doesn't ever vomit.

 

He describes feeling nauseous but not in his stomach....more of a gag reflex feeling.

 

He has a low grade fever (highest was 100) off and on. We went to Branson 2 weeks ago (he didn't feel like going but we had put the trip off the entire summer because of our move) and the second night in the hotel he was so sick in the night I had to help him get the 3 feet to the bathroom...he couldn't stand on his own. He was very weak and dizzy that night and he is often dizzy.

 

No real appetite, but he does continue to eat and he is going to the bathroom normally. He does feel like his blood sugar is wacked...like maybe it is too high or low, but he has a test kit and it is always around 100...I think the highest was 130. Last night after eating a banana split and french fries AND a shake his blood sugar was 118. So I don't think it is diabetes...I do keep thinking the gall bladder being bad could affect how his body is processing all foods.

 

Oh and just to be clear neither of us are hung up on it being the gall bladder or even on this test. My biggest issue is the lack of urgency the doctors seem to feel....while we sit here with a man who can't get out of bed. He is a big and strong and very active man who can work circles around most men half his age. In fact, I overheard his nephew (age 27) and another friend of theirs talking about him and they said, 'he is an animal!' :)

[Scarlett]

Also, for the past year or more he has often complained of that 'hang over' feeling when he eats ice cream late at night. Or a lot of mashed potatoes for supper. We had been thinking he was heading for blood sugar problem of some kind. But recent blood work, and him daily checking his blood sugar with a home testing kid do not bear that out. And I keep reading how a gall bladder can cause such symptoms.

[Scarlett]

I am so sorry, Scarlett. What this is showing to me is that not treating patients seriously as their life disintegrates before their eyes is not limited just to the young or to females. I really, really hope you find the answer very soon. I will be praying for you all.:grouphug::grouphug::grouphug:

 

As you may know, or not, my middle dd has been seriously affected by an unknown illness or condition since February with no answers yet. We are currently waiting for a visit at a clinic at Vanderbilt that we hope will have the answer but in the meantime, she had to withdraw Spring quarter and come home. She has been able to do online work so is now doing Fall quarter at the Univ. of Alabama at home. At least one week a month, she can't drive. It has been going on so long that she is becoming depressed. And really most doctors don't see how having to move back home with us, changing her whole college experience, and not being able to do research or get a job, has affected her. She was starting to make friends at college and had to leave. My heart breaks for her but I try to keep cheerful to help her. I

 

 

:grouphug: I have been following her sickness on here. I am so thankful she has her family to turn to. Is her biggest symptom fatigue? What have they ruled out?

[teeniebeenie6]

Mu husband has had a health scares recently. It started 6 months ago. He too thought it was his gallbladder. He started out feeling unwell, looked yellowish and feeling exhausted. It flared up worse recently. He was having pressure in his chest, feeling exhausted, not able to sleep. He was also somewhat gassy. Blood came back normal, gallbladder came back normal. The Dr. said he thought it may be acid related. We really didn't think it could be that. Well after a couple weeks of being on Nexxium he is like a different person.

 

Some of your husbands symptoms seems similar. It may be worth a shot. I truly thought my husband had cancer or something. My MIL says there is a no name version of Nexxium that is much cheaper.

[Scarlett]

Mu husband has had a health scares recently. It started 6 months ago. He too thought it was his gallbladder. He started out feeling unwell, looked yellowish and feeling exhausted. It flared up worse recently. He was having pressure in his chest, feeling exhausted, not able to sleep. He was also somewhat gassy. Blood came back normal, gallbladder came back normal. The Dr. said he thought it may be acid related. We really didn't think it could be that. Well after a couple weeks of being on Nexxium he is like a different person.

 

Some of your husbands symptoms seems similar. It may be worth a shot. I truly thought my husband had cancer or something. My MIL says there is a no name version of Nexxium that is much cheaper.

 

He is on Nexxium. Has been for about 2 months.

 

Did your husband have the HIDA scan?

[TravelingChris]

Her biggest problem is the fainting. She has a longer period when she feels very fatigued, gets chest pains, shakes, blurry vision or double vision or pinpoint vision, and sometimes is so weak she is conscious but can't move body parts. BUt the thing that is the worse is her fainting. She can be sitting or almost lying down and she faints. Over and over again, total loss of conscienceless. We know the triggers, at least the major ones. Heat like a hot shower, doing a lot of exercise, and finally, every month near the beginning of her cycle. It starts about two weeks before with the more minor symptoms and increases to the multiple faintings right before it starts.

 

She has seen neurologists, sleep specialists, cardiologists, opthalmologists, rheumatologist, and I am probably missing someone. Vanderbilt has a world renowned Autonomic Dysfunction Clinic and we already know she has a problem with this which was being treated successfully for nearly a year. At the Mayo Clinic in Jacksonville, they checked her for that and thought there wasn't a problem- two issues-one is that her appointment was in the absolute best time of the month for her not to have any issues, second, she was on the medications that used to keep her from fainting-- they are still needed. IF she tries to stop taking any medication, she immediately gets worse no matter what time of month. Well what do all these medications do= keep her blood pressure up and her system more energized. This includes her ADHD medications. The best doctor we have seen so far was the sleep specialist who observed her purple toes and mottling on her lower legs and was convinced that she is having a problem again with her circulation/blood pressure. We made the appointment with Vanderbilt in April. That is how long it takes to see the top specialists. The cardiologist at Mayo also thinks it is the circulation/low blood pressure problem but gave her exercises to do which may have somewhat helped but not enough. The gastroenterologist there thinks she has a connective tissue disease that hasn't been long enough bothering her that the blood work is still negative. We do know from reading articles that some of the people with the autonomic dysfunction problems get worse when they develop an autoimmune problem and treating that problem does make the other problems better. I think that that is what the problem is. We have a tendency on both sides of the family for autoimmune issues and I know that with me, it took about 8 years for my first blood work to start coming in abnormal from the time I had my first symptoms of RA. Fortunately, I had doctors who treated me anyway and the early treatment probably made it so that I am still fairly functional almost 30 years later.

[Scarlett]

Her biggest problem is the fainting. She has a longer period when she feels very fatigued, gets chest pains, shakes, blurry vision or double vision or pinpoint vision, and sometimes is so weak she is conscious but can't move body parts. BUt the thing that is the worse is her fainting. She can be sitting or almost lying down and she faints. Over and over again, total loss of conscienceless. We know the triggers, at least the major ones. Heat like a hot shower, doing a lot of exercise, and finally, every month near the beginning of her cycle. It starts about two weeks before with the more minor symptoms and increases to the multiple faintings right before it starts.

 

She has seen neurologists, sleep specialists, cardiologists, opthalmologists, rheumatologist, and I am probably missing someone. Vanderbilt has a world renowned Autonomic Dysfunction Clinic and we already know she has a problem with this which was being treated successfully for nearly a year. At the Mayo Clinic in Jacksonville, they checked her for that and thought there wasn't a problem- two issues-one is that her appointment was in the absolute best time of the month for her not to have any issues, second, she was on the medications that used to keep her from fainting-- they are still needed. IF she tries to stop taking any medication, she immediately gets worse no matter what time of month. Well what do all these medications do= keep her blood pressure up and her system more energized. This includes her ADHD medications. The best doctor we have seen so far was the sleep specialist who observed her purple toes and mottling on her lower legs and was convinced that she is having a problem again with her circulation/blood pressure. We made the appointment with Vanderbilt in April. That is how long it takes to see the top specialists. The cardiologist at Mayo also thinks it is the circulation/low blood pressure problem but gave her exercises to do which may have somewhat helped but not enough. The gastroenterologist there thinks she has a connective tissue disease that hasn't been long enough bothering her that the blood work is still negative. We do know from reading articles that some of the people with the autonomic dysfunction problems get worse when they develop an autoimmune problem and treating that problem does make the other problems better. I think that that is what the problem is. We have a tendency on both sides of the family for autoimmune issues and I know that with me, it took about 8 years for my first blood work to start coming in abnormal from the time I had my first symptoms of RA. Fortunately, I had doctors who treated me anyway and the early treatment probably made it so that I am still fairly functional almost 30 years later.

 

:grouphug: Wow! That is so traumatic and overwhelming, I don't know how you are all dealing with it.

[Scarlett]

Nurse called back ( GP office) Doctor is out for the day. Grrrrr....

 

But she did say that his blood work came back with 'abnormalities in the Epstein-Barr test and influenza A and B.'

 

So now we have the rest of the day to google that and freak out.

 

His work just signed him up for the 12 week family leave. At least his position will be protected for that long.

[Scarlett]

Nurse called back ( GP office) Doctor is out for the day. Grrrrr....

 

But she did say that his blood work came back with 'abnormalities in the Epstein-Barr test and influenza A and B.'

 

So now we have the rest of the day to google that and freak out.

 

His work just signed him up for the 12 week family leave. At least his position will be protected for that long.

 

Google is not always your friend ya know.

 

Epstein-Barr seems to be constantly mentioned with mono. And most adults develope immunities to it by age 35. Dh is 45. Also his white count should be high with that but it is low.

 

So frustrating.

[Alice]

I’d call your GP again and ask them to call the ID doc and see about getting him in earlier. Almost always we can get ASAP appointments if we call specialists.

 

I may have missed it but is there a reason they are thinking ID other than the low white count? I’d not an adult doc but there are many other things that could cause a low WBC. I’m wondering if there are other tests the GP could be doing while they wait to see ID. A blood smear? Thyroid? Rheumatological diseases like Lupus? Lyme? Not sure what has been done or what his symptoms are. But if he’s that ill it sounds like it shouldn’t be just punted to ID.

 

I don’t understand what “abnormalities in Epstein-Barr and Influenza and B” means. Either those are positive or negative. Sounds like the nurse doesn’t want to tell you the results and gave you partial info. EBV does cause Mono and it can make you very fatigued and ill. It can cause a low WBC, it’s one particular type of WBC that is elevated (monocytes).

 

Hope you get an answer and some help.

[Scarlett]

Very helpful Alice. Do I understand you to say EBV can cause low WBC, but a certain kind of white blood count could be high?

Edited September 27, 2012 by Scarlett
last word should be high not low.

[dancer67]

I’d call your GP again and ask them to call the ID doc and see about getting him in earlier. Almost always we can get ASAP appointments if we call specialists.

 

I may have missed it but is there a reason they are thinking ID other than the low white count? I’d not an adult doc but there are many other things that could cause a low WBC. I’m wondering if there are other tests the GP could be doing while they wait to see ID. A blood smear? Thyroid? Rheumatological diseases like Lupus? Lyme? Not sure what has been done or what his symptoms are. But if he’s that ill it sounds like it shouldn’t be just punted to ID.

 

I don’t understand what “abnormalities in Epstein-Barr and Influenza and B” means. Either those are positive or negative. Sounds like the nurse doesn’t want to tell you the results and gave you partial info. EBV does cause Mono and it can make you very fatigued and ill. It can cause a low WBC, it’s one particular type of WBC that is elevated (monocytes).

 

Hope you get an answer and some help.

 

:iagree:

 

Yes, he would have low WBC count but when they do a CBC they will run it with differentials. Monocytes, Luekocytes, Basophils, etc.....The Monocytes would show elevated. Which could be EB that causes Mono. And you said he felt pain when pressing down. Mono causes an enlarged spleen.

 

Did they do a simple Mono spot test? It can be done right in the Dr's office.

 

And I know many people in their 40's and 50's who have contracted Mono.

 

I would call tomorrow and ask. Hope you get some answers.

 

ETA: I would consult with a Hematologist. They are the blood specialists, and are better versed in reading bloodwork, and ordering specific tests

Edited September 27, 2012 by dancer67

[Scarlett]

:iagree:

 

Yes, he would have low WBC count but when they do a CBC they will run it with differentials. Monocytes, Luekocytes, Basophils, etc.....The Monocytes would show elevated. Which could be EB that causes Mono. And you said he felt pain when pressing down. Mono causes an enlarged spleen.

 

Did they do a simple Mono spot test? It can be done right in the Dr's office.

 

And I know many people in their 40's and 50's who have contracted Mono.

 

I would call tomorrow and ask. Hope you get some answers.

 

ETA: I would consult with a Hematologist. They are the blood specialists, and are better versed in reading bloodwork, and ordering specific tests

 

I hope the doctor will want to dh to come in for a consult for these results. Sounds like there is actually something to report this time. If they diagnose him EBV/mono (seems to go hand in hand) then I am pretty sure the treatment is just rest rest and more rest. Which is what he has been doing for 2 weeks now....but it has been brutal not knowing what is wrong with him.

[Scarlett]

:iagree:

 

Yes, he would have low WBC count but when they do a CBC they will run it with differentials. Monocytes, Luekocytes, Basophils, etc.....The Monocytes would show elevated. Which could be EB that causes Mono. And you said he felt pain when pressing down. Mono causes an enlarged spleen.

 

Did they do a simple Mono spot test? It can be done right in the Dr's office.

 

And I know many people in their 40's and 50's who have contracted Mono.

 

I would call tomorrow and ask. Hope you get some answers.

 

ETA: I would consult with a Hematologist. They are the blood specialists, and are better versed in reading bloodwork, and ordering specific tests

 

I do not think they did a mono test because he didn't have a sore throat. He did have/does have swollen lymph nodes in his neck. Maybe they will do a mono test now?

[magnificent_baby]

I am just throwing out an idea. Disclaimer: I am not a doctor. :001_smile:

 

When you mention abnormalities related to Epstein Barr in the bloodwork, is it possible he had mono recently and didn't know it? One complication of mono is splenomegaly (enlarged spleen), which can cause symptoms similar to his.

 

I know you aren't looking for help trying to diagnose from the board, but I thought I would throw that out there in case it helped you sort out who to see. I still say an internal med would be your best bet. I would just call, call and call around until someone is willing to see him ASAP.

 

Sorry, but I would bypass the GP at this point. They are NOT being helpful to you at all, and I think it is ridiculous that the nurse would pass along lab work info to you without ANY explaination of the results or trying to get you in somewhere right now. I would go to the office, ask for copies of all lab work and start from scratch with someone else.

 

It sounds like he is stable, but I would also consider going to ER so they can order some labs and call in a specialist, if you aren't able to be seen very soon. Something is going on, and I am frustrated for you that his GP is not doing his job. :grouphug:

[Scarlett]

I am just throwing out an idea. Disclaimer: I am not a doctor. :001_smile:

 

When you mention abnormalities related to Epstein Barr in the bloodwork, is it possible he had mono recently and didn't know it? One complication of mono is splenomegaly (enlarged spleen), which can cause symptoms similar to his.

 

I know you aren't looking for help trying to diagnose from the board, but I thought I would throw that out there in case it helped you sort out who to see. I still say an internal med would be your best bet. I would just call, call and call around until someone is willing to see him ASAP.

 

Sorry, but I would bypass the GP at this point. They are NOT being helpful to you at all, and I think it is ridiculous that the nurse would pass along lab work info to you without ANY explaination of the results or trying to get you in somewhere right now. I would go to the office, ask for copies of all lab work and start from scratch with someone else.

 

It sounds like he is stable, but I would also consider going to ER so they can order some labs and call in a specialist, if you aren't able to be seen very soon. Something is going on, and I am frustrated for you that his GP is not doing his job. :grouphug:

 

I think the GP nurse threw him a bone today because she is sick of him calling. :glare: That doctor, the GP, has at least listened to dh's complaints enough to keep running various blood panels. And even after he referred dh to the ID he had his nurse call back to see if the ID office had called us. When eh found out they had not he ordered another round of blood work himself. I assume that last round is where they got the EBV info and the influenza A and B.

He also believed dh that he is too sick to go to work and put him on indefinite sick leave. So that was helpful....

 

However, he is being less than helpful on the gall bladder issue. I am not convinced yet that it is not the gall bladder..mostly due to the fact dh was complaining about some things that could be gall bladder for an entire year.

 

Oh, and I am happy to listen to all suggestions and possibilities even though I know most of you aren't doctors. You all have given us several good ideas today and helped clear up a few things that were confusing.

[magnificent_baby]

I think the GP nurse threw him a bone today because she is sick of him calling. :glare: That doctor, the GP, has at least listened to dh's complaints enough to keep running various blood panels. And even after he referred dh to the ID he had his nurse call back to see if the ID office had called us. When eh found out they had not he ordered another round of blood work himself. I assume that last round is where they got the EBV info and the influenza A and B.

He also believed dh that he is too sick to go to work and put him on indefinite sick leave. So that was helpful....

 

However, he is being less than helpful on the gall bladder issue. I am not convinced yet that it is not the gall bladder..mostly due to the fact dh was complaining about some things that could be gall bladder for an entire year.

 

Oh, and I am happy to listen to all suggestions and possibilities even though I know most of you aren't doctors. You all have given us several good ideas today and helped clear up a few things that were confusing.

 

Glad he was willing to help him out with the work situation, that's great that he doesn't have to worry about that aspect

 

A few more ideas: abdominal CT, chest CT, abdominal ultrasound, due to the pain around his sternum. These would be easy to order, quick results and relatively non-invasive, while you are waiting for the specialist appt.

 

I hope you find out something soon and it's an easy fix!

[mumto2]

I don't know if they have ruled out pancreatitis...but I do know that my SILs blood levels were all normal for the entire year she was sick. In fact, they thought she had endometriosis and went in for exploratory surgery at one point. Nothing. She didn't get relief until they took her gall bladder out...it was then that they discovered something weird had happened to her appendicts. It has been infected at one point and sort of burst and sort of healed but a bunch of adhesions had formed inside of her.

 

This is so odd. My friend's husband fit the discription of the appendix you just gave. He was absolutely miserable for about a year. Poor man. Thay finally had to remove a portion of his intestine because of the infection caused by his appendix leaking gunk on it all that time. Anyway when I first saw your post and thought of that situation. I also dismissed it because what are the odds.....well if your dh's sister had that happen it makes sense. Tests kept coming back negative. At one point his appendix was inflamed. They treated with antibiotics. Apparently appendectomies are no longer the preferred treatment.

 

I hope you can find a doctor that will take your concerns seriously soon. A four hour drive might be worth it.

[Incognito]

FWIW, EBV is the virus that causes mono. So EBV is mono.

 

Once you've had mono, you carry that virus in your body for the rest of your life. Just like chicken pox (which is VZV).

 

Sorry your husband has been so sick. Hopefully it is just an older age case of mono. Terrible and debilitating, but it does run its course.

[Scarlett]

This is so odd. My friend's husband fit the discription of the appendix you just gave. He was absolutely miserable for about a year. Poor man. Thay finally had to remove a portion of his intestine because of the infection caused by his appendix leaking gunk on it all that time. Anyway when I first saw your post and thought of that situation. I also dismissed it because what are the odds.....well if your dh's sister had that happen it makes sense. Tests kept coming back negative. At one point his appendix was inflamed. They treated with antibiotics. Apparently appendectomies are no longer the preferred treatment.

 

I hope you can find a doctor that will take your concerns seriously soon. A four hour drive might be worth it.

 

FWIW, EBV is the virus that causes mono. So EBV is mono.

 

Once you've had mono, you carry that virus in your body for the rest of your life. Just like chicken pox (which is VZV).

 

Sorry your husband has been so sick. Hopefully it is just an older age case of mono. Terrible and debilitating, but it does run its course.

 

Ty both. I am so irritated that the doctor has not called dh back this entire day. It is after 5:00 now so I doubt he will today. Why couldn't the nurse just say, 'yep it is mono' instead of the vague answer she gave.

 

I talked to my cousin today who is a PA and he made me feel better....he said yep, EBV means mono, it could be associated with something worse but not likely...and that he has seen a bunch of cases of mono lately including a 60 year old man last week.

 

So rest it is. Got him signed up for short term disability and the family leave act to protect his job.