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Dad is dying & no reason why-Tests not "alarming"
My dad has been deteriorating rapidly to the point he can barely walk, almost no voice, Extreme weightloss, tremors, slow mind, swollen feet/ankles but in July we each drove 14hrs to and back on vacation. Tests, imaging, diagnostic tools show nothing of significance. He has COPD, but not severe, had tarry stools and found 2 ulcers, not big enough to cause this, has denture pain for a year which caused depression but doctors say this can't be the result of that (even though depression can be horrid). PT, CT scans fine, EKG, bloodless, xray seemingly non-alarming. Has seen specialists and tried different medications. Still deteriorating, lost all muscle, zero strength, tired, and all we can do is sit with him and keep asking for more tests and ask more questions. The worst is that he knows he's dying, but No One knows why. Can't tell us anything therefore can't treat anything. It's the worst feeling to know someone is suffering so much and there's no reason. His doctor has suggested we drive him to MAYO and sit and wait for an appt. Anyone have experience with this? What are they missing?
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@lanaeg, if you or your physician would like to consult with Mayo Clinic experts, you can ask the doctor to submit a physician referral or submit an appointment request on his behalf. You'll find all the information for either method here: http://mayocl.in/1mtmR63
I would not recommend driving to Mayo Clinic without an appointment and waiting to be seen. That might be unnecessarily taxing on your father (and you).
I can imagine you are very worried about your father. Has he been tested for infectious diseases? Are there known risks in the area he vacationed, like ticks and Lyme disease? Other?
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6 ReactionsWelcome to Connest @lanaeg.
His doctors have done what they can do and this recommendation is a worthwhile option. It is possible to request a video visit after sending results of all the testing to a referral institution like Mayo. His doctor can help you to get this done and recommend what specialty the referral should be made to. Travel and waiting for an appointment do not sound like a viable option given his condition. What is his age and are his symptoms progressive? I can only imagine how worried and frustrated you are at this point.
My husband's cancer was diagnosed at Mayo from the scans and lab results that were done at home locally. Things were missed there, and only because he had scheduled an executive physical at Mayo was he diagnosed and treatment started. More opinions, larger referral centers may lead to better results.
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8 ReactionsYes, we are calling tomorrow and submitting a request but his doctor is adamant they drive up. He told my mom they aren't taking appointments until March and I want to know if he spoke to someone specifically about my dad or he's just saying that.
He has seen an Infectious Disease doctor. They also tested him for tons of things and nothing out of ordinary came back. Vacation was South Carolina and he basically visited with his sister and brother.
He's seen a GI doctor, Pulmonologist, had Vascular tests and just no answers. He just fell 3 times last night and is so frail but even the ER won't keep him bc even though he's ill, they say his electrolytes and everything are "fine".
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2 ReactionsHello, thank you so much for your response. He is 79 and I guess they are progressive. He was basically "normal" 3 months ago and kept losing weight, then almost as if overnight, his mind was slower, he lost strength and became extremely fatigue. He is severely depressed due to denture pain & issues for over a year but they are saying this is too extreme to be just depression. He hasn't been able to eat or wear his teeth much so was eating soft foods until I got him into a different dentist. He is getting his teeth next week.
@lanaeg, time to appointment differs depending on the urgency of the request and the availability of appointments per department. I think you're right to call and get more details specific to your father's situation.
I'm going to have my mom call and ask his doctor to do the actual referral. If he can submit his medical results I feel that would be a good first step but he is acting like he doesn't want to do the work, I guess. I'm going to see if there is a way for us to submit them. I'm sitting with him now and he's hungry, eating chili and spaghetti but thinks he sitting down at his farm. He knows he's not, but can't get his mind to stop tricking him. This is the first this has happened. It's awful watching someone you love go through all this agony and no one can help him. Thank you again for your help.
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2 ReactionsWas he checked for a urinary track infection? Sometimes a UTI can cause dementia-like symptoms.
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1 ReactionThat I don't know. He's given a urine sample at the Infectious disease doctor and has had so many bloodtests, so I guess I would think they did but I will find out.
Has he been tested with a state lab for mosquito borne
virus screening?
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1 ReactionI'm not sure what you mean by state lab. He has had numerous tests bmdone by both an Infectious Disease doctor amd his PCP, plus bloodwork they did in the hospital and by a GI doctor. They have texted him for all the "uncommon" common illnesses too taking 11 to 12 vials of blood each time.