I need advice on finding the kind of doctor that will cure my husband?
My husband is 30 yrs old and he is dying of "nobody knows" he has a number of symptoms that can not be explained!! We have been to a Urologist, a Neurologist, a family doctor, and the best Infectious Disease Dr. in the state, plus we have spent ,000 in cash to pay for him to go to the Diamond Clinic in Chicago, which is out of state for us and he has had 5 operations this past 6 months to clear out all the Kidney stones but within 6 weeks they are all back, These are all his symptoms:
Extreme Cluster Migraines, Kidney stones, all his joints are very swollen, his legs tingle and go numb, very high blood pressure, he has rashes that come up all over his legs, vomiting, chest pains, blood in urine, constant kidney infection, He has had Salmonella poisoning for 15 months and they can not get rid of it, they did a bone density test and he has the bones of a 90 yr old, he has broken 3 ribs breathing hard, they have had him on Steroids for a long time to help control the headaches but it in turn causes other things, but he is getting worse by the day and we have 3 young children and I am at a loss of what to do now? None of the doctors seem to know anything other than trying to load him up on pain killers to control pain, but he was an addict years ago and does not take the pain meds, so what now?
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3 comments
quixoticalthoughts on February 28, 2010 at 4:41 am
I’m sorry, but you might want to start saving money. I will see what I can find, and I know this is one of those last ditch efforts… but I’ll give it a shot… Many people say go to a doctor but you have done that already. He might have multiple illnesses which could make it hard to diagnose, because without the source you have nothing. Just treatments of symptoms, but no cure or explanation. Good Luck, I’m sorry to hear this story, I don’t pray much, but I’ll say one for him.
Cluster Migraines : No known cause… could be an abnormality in the Hypothalamus… could be genetic, could be triggered by Nitroglycerin, hydrocarbons, alcohol, aerobic exercise, napping, heat, smoking, lack of sleep, sometimes diet.
In my NON Professional opinion, these are caused by something else in his body. The hypothalamus is a regulator so it works as a clock for the body, any number or irregularities could cause these headaches that are due to the dilation of blood vessels that can put pressure on the trigeminal nerve.
Kidney Stones: It would be convenient to go with Crohn’s Disease, that could link the stones and the skin rashes. Then again this could be due to a metabolic disorder that could also be linked to the headaches. Failing Kidneys can mean Renal tubular acidosis…
Swollen Joints : could be associated with infection, but since so much is wrong with him, perhaps he could be suffering from osteoporosis or Cushing’s Disease, you could look that up… Cushings is less likely because he would have suffered childhood symptoms probably. These could also be linked to Monoarthritis… that can be associated with the kidney stones somehow, they could be linked.
Numbness: I saw a strange operation one time, where someone had somewhat serious symptoms and had a tapeworm, but he would have exhibited massive weightloss by now. This is not my first choice, but it is worth looking into … it could also be damage in the brain linked to high blood pressure causing peripheral neuropathy. Amyloidosis AL can also be linked to the bone pain and leg numbness.
Rashes come and go so they are hard to diagnose, I am sure they are linked to one of the other more severe problem.
I would also suggest that the blood in the urine could be a result of the kidney stones and infection that were mentioned earlier… they are a common cause of blood in urine.
Bone density could be osteoporosis or something more severe… I know that amyloidosis can affect the marrow which would cause this weakness. See swollen joint section….
I must reiterate that I am just a civilian with a deep interest in medicine.. I was an EMT but my training can’t help you here really. I love medicine and I have given you suggestions that you may bring up in conversation with doctors. I do not suggest that you use this information for research purposes to help guide you towards some knowledge that you can suggest if they have not come up to the doctors yet.
Again I feel terrible about your situation. I hope that you see some improvement eventually. If you feel so inclined to contact me you can find my email in my profile or take it here collegenebula@yahoo.com.
I am not in college anymore that is an old screenname I used.
My prayers go out to your husband and your family.
ladykenmax on February 28, 2010 at 4:41 am
I am not sure there is another doctor that would help your husband. When I looked up Diamond Clinic, it said its a specialty place for headaches. I don’t know if this will help you, but I am recommending the Cleveland Clinic in Cleveland, Ohio. It is known all over the world and has been treating many foreign dignitaries. I am sorry to hear your husband is very ill. Does anyone else in his family have any of these illnesses? I wish I can do more, but I am lost. Sorry and please keep trying.
Tara H on February 28, 2010 at 4:41 am
First off, I’m sorry to hear what you’re going through. This must be really tough for you.
I don’t know a whole lot but I can offer a few suggestions from what I’ve seen before. You might have to do your own research and see if you can get some answers through process of elimination. A lot of times doctors don’t know where to look when the obvious isn’t the answer, and it’s the patient’s family members that have to find out what’s happening. The internet is a great place to find info on diseases that some doctors might not even be aware of. You might want to try the Center for Disease Control, or google some of his symptoms and see what you can come up with.
If you’ve tried a urologist, a neurologist, and an infectious disease doctor, then it’s probably safe to rule out anything they could find.
If I can throw out some ideas, have you tested for auto-immune diseases, or lyme disease? Some of his symptoms match what you would get for auto immune or advanced lyme disease. And lyme disease is notorious for coming up negative in testing when it’s actually positive. Depending on where you live, Rocky Mountain Spotted Fever is another tick caused illness that can cause some of those symptoms.
Another possibility is heavy metal poisoning. Some of his symptoms match what you would find there, so if he has a job working with chemicals or something like that, that’s a possibility. If he works with livestock, wild animals, or stray animals there are some uncommon diseases that can also be a factor.
Those are a couple of ideas that regular doctors may not think to check for. Good luck! I hope everything will work out in the end. I will keep him in my thoughts and prayers.