Frustrating: Young caregiver of partner with multiple conditions

@cwebster84 All of those conditions together do sound like too much for any one person to handle! I am so sorry both of you are having to deal with this. Have you gotten a second opinion? I would suggest that you find a large medical center near you and ask for a internal medicine doctor. This doctor should be able to figure out a common cause. If you would like to try the possibility of the Mayo Clinic, here is a link
https://mayocl.in.1mtmR63.
What is the most difficult disease he has to cope with now.

@cwebster84 Welcome to Mayo Connect. That's quite a list, it must be very difficult for both of you.
Has your husband considered being seen at one of the Mayo Clinics or another multidisciplinary practice? There, a team of doctors and other specialists can cooperate to determine the best course of action.
Here is the link for making initial contact with Mayo: http://mayocl.in/1mtmR63

I hope you can help him to find answers.
Sue

I actually just submitted a referral to Mayo in Jacksonville. I would say the most difficult issue is his constant pain from his back. However, he just doesn't feel well a lot of times because his WBC will shoot up and even the hematologist he sees can't really say why it happens. I. December it was 22.7, at the end of January it was 20 and then it started trending down to 11.85 but he didn't take antibiotics. He was admitted to the hospital on Monday and it was back to 16 and his lipase was 1129. Everytime he goes to the hospital he is admitted because his blood work is off but they can't ever find the exact reason.

Good morning,

I submitted the application for a referral to Mayo in Jacksonville this morning. We are hoping that perhaps having a team of doctors in one place looking at everything may help in finding out what is wrong. Right now he has four different specialists to see but all are in different practices so they are not looking at the whole picture.

My husband started losing balance and falling last March. Among others abnormal labs his WBC was 27 and no one knew why or even seemed to care to be quite honest. Anyway, after 2 hospital stays, countless tests & doctor visits. I found an Irish (funny it's St. Patrick's Day) neurologist ( the 4th) who listened to my husband's history and paid particular attention to his drinking habits. He advised my husband to stop drinking, he did, and is now much better. I think his high WBC was a side effect of heavy drinking. It's called "Leaky Gut". I don't know if any of this is helpful but wanted to do something to try to help you. I am so sorry that you and your husband are going through so much pain.

Thank you for your compassion. My husband actually hasn't had any alcohol in 7 years because he shouldn't drink on his medications and he doesn't like drinking. The WBC is all over the place. He got discharged today and yesterday his WBC was 11.9 and his labs just came back after discharge and the WBC is now 16 again. It's all just a mystery.

It's so stressful. Doing computer searches helped me find my direction and then I had to get a doctor. I couldn't believe my luck when I found a neurologist that studied in Dublin and had availability within the month. Otherwise, my husband would still be getting infusions for CIDP and probably still drinking. The funny thing was he saw 4 neurologists who did the same tests and gave 4 different treatments. One even said Parkinson's and put him on medication for it. Hang in there, I wish you all the best. Karen

Your husband has a complex metabolic picture from reading your initial post. Was he a smoker, how long did he drink before stopping 7 years ago, were the spine and brain issues identified together? I only ask these questions to ascertain whether his illnesses are emergent or have developed over years? The complexity has baffled the doctors and shows that medicine does not have all the answers as the body is a complex system. The cysts might be responsible for some of the metabolic oddities his blood work has shown. You might ask your PCP to be the point person for staying on top of your husbands treatments if you have that kind of relationship? When you’re at the hospital with your husband see if there is a social worker you can speak with too. Having a medical social worker assigned to your husband’s case might provide some guidance for you as well. You have a great deal on your hands and I wish you well.

I hope you get your referral you put in, and soon. As you are waiting for that, I wonder if it might be helpful to write out as complete a history as you can of your husband's medical journey, of course including the problems he's been diagnosed with and when but also symptoms that may have started before he sought help. Also things that may seem inconsequential like work history and medical or other issues in his childhood and youth, his dietary habits, and biological family medical history, if available, may sometimes help a medical team to see a more complete picture.

I'm sorry to hear about what you are both going through.

I realize this is a few months behind the curve, but I'm a Jacksonville Mayo patient as well. I'm happy to compare notes, share some ideas, whatever may help. I've spent a lot of quality time there over the last several years. As you indicated, it can be a particularly difficult and, uh, "interesting" journey when dealing with a complex set of problems, especially if and when there's not a medical quarterback to really coordinate everything. (Just check my very limited profile - grin)

It may seem like an odd recommendation when you're already going through so much, but I found that reading a few books by doctors about the relationships and communications between doctors, patients and caregivers repaid the investment 1000-fold. Use Thriftbooks and it's cheap. One set is by Dr. Jerome Groopman: "How Doctors Think," "Your Medical Mind," and "The Anatomy of Hope" -- recommended in that order. The other is by Dr. Danielle Ofri: "What Doctors Feel," What Patients Say, What Doctors Hear," and "Incidental Findings."

It sounds like a lot, but so much of the time this is a marathon. Getting a handle on the range of perspectives that doctors have and the ways that communications can range from incredibly helpful to toxic (on both sides) is a huge thing. But also prayers for a quick underlying diagnosis and recovery, from as much as possible as well.