Just have some questions about my dad's health. He's really been through the ringer in the past few years. He's been diagnosed with Sleep Apnea, Bipolar, Depression, Osgood Slates, Fibromyalgia, and now Lupus...he's had 2 strokes, has chronic knee and back pain. He's been on and off so many pills, I can't even keep track of them anymore. He was in the ER tonight, his arms and back were numb. The chest X-ray and EKG were fine. They said it wasn't a stroke or heart attack. Basically, they don't know what happened. I don't know if maybe it's something to do with the Lupus, or the chronic pain, or what. He has an appointment at the pain management center tomorrow. Anyway, I just have a couple questions.
IP: Logged
01:19 AM
PFF
System Bot
StuGood Member
Posts: 3172 From: Wichita, KS, USA Registered: Jun 2000
If he has already had 2 strokes, he already is in a "high risk" health state (for future serious problems).
So...safety first. Arms and back numb. Not most likely to be a heart attack, but make sure it isn't a heart attack, or an aortic dissection. ECG and cxr should have ruled that out.
His symptoms don't fit a stroke, but how would they know if they didn't do another ct or mri of the brain?
He ought to be seeing neurology before seeing a pain management specialist. Then, the neurologist can do any further work-up to establish "safety" before going on to pain management.
Lupus is a serious condition, so if he really has that, I am sorry and that isn't good. He ought to be seeing a GREAT rheumatologist if he has that. That is priority number one.
Fibromyalgia is garbage science and a garbage diagnosis. Sorry to all who have it. DO NOT MIStake that statement to read that I am discounting symptoms, nor saying that the symptoms aren't real. Just that labeling it fibromyalgia is completely unhelpful in understanding why the person is having the symptoms, and knowing how to help the person
Bipolar and depression don't CAUSE his health problems, but they are certainly going to MAGNIFY his responses to it, and further "muddy" the picture.
Sleep apnea is something that is certainly going to make whatever he has worse, if not in degree, at least in symptoms and ability to handle them.
He has MULTIPLE problems that are a HIGH degree of difficulty scale. If he doesn't have EXCELLENT doctors, he is going to do poorly. Mediocre doctors can handle a lot of patients, and not screw things up. Your dad is NOT one of those patients. His level of problems requires an EXCEPTIONAL level of care if he is going to do well (and even with exceptional, you and he may not be thrilled with what that level of care results in).
Again, really sorry. But priorities:
1. see a neurologist as soon as possible to ensure safety 2. work with an EXCELLENT rheumatologist 3. THEN, pain management. But that is a long term thing. 4. CPAP 5. He is going to have to work with a psychiatrist, too.
IP: Logged
07:10 PM
Jaygee79 Member
Posts: 4259 From: Dartmouth, MA Registered: Mar 2000
If he has already had 2 strokes, he already is in a "high risk" health state (for future serious problems).
So...safety first. Arms and back numb. Not most likely to be a heart attack, but make sure it isn't a heart attack, or an aortic dissection. ECG and cxr should have ruled that out.
His symptoms don't fit a stroke, but how would they know if they didn't do another ct or mri of the brain?
He ought to be seeing neurology before seeing a pain management specialist. Then, the neurologist can do any further work-up to establish "safety" before going on to pain management.
Lupus is a serious condition, so if he really has that, I am sorry and that isn't good. He ought to be seeing a GREAT rheumatologist if he has that. That is priority number one.
Fibromyalgia is garbage science and a garbage diagnosis. Sorry to all who have it. DO NOT MIStake that statement to read that I am discounting symptoms, nor saying that the symptoms aren't real. Just that labeling it fibromyalgia is completely unhelpful in understanding why the person is having the symptoms, and knowing how to help the person
Bipolar and depression don't CAUSE his health problems, but they are certainly going to MAGNIFY his responses to it, and further "muddy" the picture.
Sleep apnea is something that is certainly going to make whatever he has worse, if not in degree, at least in symptoms and ability to handle them.
He has MULTIPLE problems that are a HIGH degree of difficulty scale. If he doesn't have EXCELLENT doctors, he is going to do poorly. Mediocre doctors can handle a lot of patients, and not screw things up. Your dad is NOT one of those patients. His level of problems requires an EXCEPTIONAL level of care if he is going to do well (and even with exceptional, you and he may not be thrilled with what that level of care results in).
Again, really sorry. But priorities:
1. see a neurologist as soon as possible to ensure safety 2. work with an EXCELLENT rheumatologist 3. THEN, pain management. But that is a long term thing. 4. CPAP 5. He is going to have to work with a psychiatrist, too.
he's been through a whole boat load of doctors. most of them just stick him on a new medication to treat the symptoms and tell him it's all in his head. he is seeing a rheumatologist and a psychiatrist. he is also in pain management. he sleeps every night with a breathing machine for the sleep apnea.
It just seems to me like all these things share very similar symptoms. Is it possible that he could've had these things diagnosed but maybe it was something else? What are the specifics of Lupus? It was the Rheumatologist that ran a series of tests, including for Lupus (which came back positive). They said there are different degrees and kinds of Lupus and, if treated correctly, he could live a long normal life. They also said that the strokes could've been caused by the Lupus.
[This message has been edited by Jaygee79 (edited 06-09-2006).]
IP: Logged
11:02 PM
Jun 10th, 2006
frontal lobe Member
Posts: 9042 From: brookfield,wisconsin Registered: Dec 1999
Lupus is a disorder where your immune system makes antibodies against its own tissue. Because the antibodies are blood borne, you can have wide spread symptoms throughout the body. That amount of symptoms and multiple locations of the symptoms can make it seem like a lot of different illnesses. So it is very hard to sort out what symptoms are related to what condition is actually going on.
The lupus antibodies can definitely clog up small blood vessels, which can cause problems anywhere but the brain is least tolerant of that happening, and that certainly could have caused his strokes. But so could have the more typical things, like smoking, diabetes, hypertension, high cholesterol. So which caused it, or contributed how much? No way to tell.
Lupus is a very difficult diagnosis to make. Often a person has the disorder and the symptoms that go with it for YEARS before the tests finally turn positive and show that it is lupus. So some doctors may have done the testing, it was negative, so they told him it was in his head. Some doctors may have done the testing, it was negative, and so they told him he had fibromyalgia. In either case, since you don't really know what is going on, it is common to just TRY different medicines to see what helps, and hope something does. Not an uncommon scenario.
And, yes, there are varying degrees of severity of lupus, as there are in many disorders.
He needs to be on aspirin and or plavix, or coumadin, to prevent future strokes.
He should be on some immune system modulator for the lupus, such as plaquenil, methotrexate, or the newer injections. He may need to be on a steroid such as prednisone for periods of time.
As I mentioned previously, your dad is a very complicated patient. There are not going to be very many doctors skilled enough to work with him until he is doing the best he can in his situation. I am sure there are some where he lives. But he is going to have to find some doctors motivated enough to keep working to get him to his maximum. Because being that complicated, he is going to require more time and work than most patients, and yet that doctor is going to get paid the same amount to do that as they get to take care of the easy patients. He is going to have to be on more powerful drugs that require more monitoring and finesse to use properly. And it takes time to titrate them to the ideal amount, even when the right drug is found.
I'm not saying it can't be done, but it is going to take a lot of work and a lot of tweaking and that is going to take time...probably longer than you or he will wish.
IP: Logged
12:14 AM
F-I-E-R-O Member
Posts: 8410 From: Endwell, NY Registered: Jan 2005
My 2 cents, I'm wondering if UVULOPALATOPHARYNGOPLASTY would be a helpful solution to the sleep apnea issue which has the associated symptoms:
Associated features may include:
* loud snoring * morning headaches * unrefreshed sleep * a dry mouth upon awakening * chest retraction during sleep in young children (chest pulls in) * high blood pressure * overweight * irritability * change in personality * depression * difficulty concentrating * excessive perspiring during sleep * heartburn * reduced libido * insomnia * frequent nocturnal urination (nocturia) * restless sleep * nocturnal snorting, gasping, choking (may wake self up) * rapid weight gain * confusion upon awakening
Not being a physician, but having gone through the experience, it seems to me that the related symptoms might be relieved by this procedure.
As far as physicians who say that it's all in his head, I would suggest that they may actually be saying that they are not experienced enough to handle this case. In my experience, the fact that a person has gone to college doesn't necessarily mean they are educated. Don't be intimidated by a couple letters in front of a persons name. Treat them as you would a mechanic and find one that you are comfortable with who is willing to take the time to work with you and your father to find solutions. Unfortunately, I think that many of them (GP's) are more concerned with volume of care vs quality of care and aren't very keen on investing time and energy into finding solutions. Finding a physician who is willing to work with specialists in a combined effort to solving or at least alleviating as many of the symptoms as possible would be the best way to go- if you can find one. I understand how frustrating this must be for everyone involved and my thoughts are with you all.
