Re: Your Health

[Guest guest]

In a message dated 3/27/02 8:17:03 PM Pacific Standard Time,

catherk@... writes:

<< How can we tell what is caused by what???? Kathy >>

Kathy, when you figure that one out will you tell me.? LOL It is so hard,

especially when you have more than one thing going on. If I have chest

pains, I never know if it is fibro, RP or my heart. LOL Geez

I would just suggest that everyone have an eye exam yearly. Especially if on

pred. as it can cause many eye problems. Just to be on the safe side. A

baseline hearing test is also recommended. I'm on plaquenil and they

wouldn't even give it to me until I had an eye exam and hearing test. It

can damage your eyes too.

I think we should all at least have a basline Pulmonary Function Test. even

if we don't have breathing problems. If we should ever get them, they would

have something to go by. This is just my opinion and I know that we can't

alway go in and demand all of these tests. LOL Try to work with your drs and

convince them it will be to both of your advantages if they are done now.

Sharyn brought up a good point today. We use to discuss this all the time in

the group and I don't think we have in a long time. It is SO important for

you to have copies of your medical records. I do have all of mine. Once you

get them, just make sure you get copies of each test you have done. My

doctors all co operate with me on this. They even send me copies of letters

that they write to each other. The lab sends me a copy of my blood work and

any tests that I have done. You might have to work hard to get them to do

this, but it is your right. At least in Calif. it is. Thank you Sharyn for

reminding me of this. You might want to add to this, I'm sure I forgot

something.

Oh Yes, and Ladies...there are TWO really important tests that you must have

yearly. A Pap and a Mammogram... PLEASE!!!! And order some kind of medic

alert bracelet. DOuble PLEASE!!! I will never give up on this so you might

as well just do it and I can cross you off my list. LOL

hugs

[Guest guest]

I just returned from getting a CT scan and X-ray of my chest/lungs. A long time ago baseline tests were talked about, but I'm not sure we've seen a consolidated list. When you ask the doctor's they never give you a straight answer. --- are there any other tests we should think of ??? ( I think I had my eyes checked once also) I know it's hard for me to figure what's RP, what's age related, smoking related, overweight related, or any other cause. My rheumy says hows it going- well my ears don't hurt- and his response is then that the disease is in remission aren't I happy with his treatment? What about the difficulty walking- sore ankles, foot, wrists, elbow, the coughing, aching back, and just plain getting meaner by the day? How can we tell what is caused by what???? Kathy

Your HealthOk, now that I have sent you the responses from Dr. Buckner and Dr. Utz, I have a little to add. PLEASE, everyone of us needs to take complete charge of our medical care. It is our bodies and WE need to take charge of it's health. WE pay the doctors to work for us. We need to be treated in a respectable manner and LISTENED to. If you find your dr won't even listen or read anything you give him, I think it is time to look for another dr. I know this isn't easy and it is very frustrating trying to find another one AND then starting all over again. I know, because I have been there many times. LOL I use to let the doctors control me. NOT any more. I want to live my life to the fullest and boy they had better give me the treatment I deserve and if they don't know, that's okay too, as long as they TRY to find out and work with me. Insist on the baseline tests that we all need. Pulmonary Function Tests, CT scans if needed, MRI's, hearing test, blood counts, Kidney function tests, eye exams. We need to know how we stand before anything happens. Then we will have something to compare to if we do start to have problems. Why wait too long and not have anything to compare to. Please take a long hard look and make sure you are getting the proper treatment. We are in the process of getting a list from drs. that will list the Drs they know of that are familiar with RP. If anyone has a wonderful doctor, please give us his name and address and we can post them to our web site. Any doctor in any specialty that has helped you. With all of us working together, we are bound to make a big difference in our treatment and maybe a cure. I will get off my bandstand now and leave you alone for the rest of today. LOL Oh, one more thing...Did you ALL order your medic alert bracelets?????????hugs

[Guest guest]

Judy, you deserve more than your share of miracles. I'm so happy about your

site. You are in my prayers always.

hugs

[Guest guest]

, funny you should bring this up. I say my Opthomalogist (sp?_ this morning with some surprising results. After my last stroke, when they tested my field of vision, it was determined that I had I had no peripheral vision. After they tested it twice this morning, they found it was normal! The doctor thinks it's just another case of the brain healing itself! Whatever, it is, I am thrilled! As for hearing tests, I've had more than I ever wanted in the past year, as I went thru two episodes of losing my hearing. Thanks to the pred it came back with minimal loss. So I will be heading for church tonight to say Thank You for yet another miracle. I have truly had more than my share! Love, Judy Re: Your Health << How can we tell what is caused by what???? Kathy >>Kathy, when you figure that one out will you tell me.? LOL It is so hard,especially when you have more than one thing going on. If I have chestpains, I never know if it is fibro, RP or my heart. LOL GeezI would just suggest that everyone have an eye exam yearly. Especially if onpred. as it can cause many eye problems. Just to be on the safe side. Abaseline hearing test is also recommended. I'm on plaquenil and theywouldn't even give it to me until I had an eye exam and hearing test. Itcan damage your eyes too.I think we should all at least have a basline Pulmonary Function Test. evenif we don't have breathing problems. If we should ever get them, they wouldhave something to go by. This is just my opinion and I know that we can'talway go in and demand all of these tests. LOL Try to work with your drs andconvince them it will be to both of your advantages if they are done now.Sharyn brought up a good point today. We use to discuss this all the time inthe group and I don't think we have in a long time. It is SO important foryou to have copies of your medical records. I do have all of mine. Once youget them, just make sure you get copies of each test you have done. Mydoctors all co operate with me on this. They even send me copies of lettersthat they write to each other. The lab sends me a copy of my blood work andany tests that I have done. You might have to work hard to get them to dothis, but it is your right. At least in Calif. it is. Thank you Sharyn forreminding me of this. You might want to add to this, I'm sure I forgotsomething.Oh Yes, and Ladies...there are TWO really important tests that you must haveyearly. A Pap and a Mammogram... PLEASE!!!! And order some kind of medicalert bracelet. DOuble PLEASE!!! I will never give up on this so you mightas well just do it and I can cross you off my list. LOLhugs

[Guest guest]

Kathy, tell him just because he got the symptoms under control, does NOT mean you are in remission, so his job is not complete! Don't let him off the hook, you keep after him until the rest of you is doing better too, not just your ears! Love, Judy O Your HealthOk, now that I have sent you the responses from Dr. Buckner and Dr. Utz, I have a little to add. PLEASE, everyone of us needs to take complete charge of our medical care. It is our bodies and WE need to take charge of it's health. WE pay the doctors to work for us. We need to be treated in a respectable manner and LISTENED to. If you find your dr won't even listen or read anything you give him, I think it is time to look for another dr. I know this isn't easy and it is very frustrating trying to find another one AND then starting all over again. I know, because I have been there many times. LOL I use to let the doctors control me. NOT any more. I want to live my life to the fullest and boy they had better give me the treatment I deserve and if they don't know, that's okay too, as long as they TRY to find out and work with me. Insist on the baseline tests that we all need. Pulmonary Function Tests, CT scans if needed, MRI's, hearing test, blood counts, Kidney function tests, eye exams. We need to know how we stand before anything happens. Then we will have something to compare to if we do start to have problems. Why wait too long and not have anything to compare to. Please take a long hard look and make sure you are getting the proper treatment. We are in the process of getting a list from drs. that will list the Drs they know of that are familiar with RP. If anyone has a wonderful doctor, please give us his name and address and we can post them to our web site. Any doctor in any specialty that has helped you. With all of us working together, we are bound to make a big difference in our treatment and maybe a cure. I will get off my bandstand now and leave you alone for the rest of today. LOL Oh, one more thing...Did you ALL order your medic alert bracelets?????????hugs

[Guest guest]

, I welcome all miracles with open arms, an I've had quite a few! One was meeting and getting to know all of you. This support group is the best, and I love you all! Judy Re: Your Health Judy, you deserve more than your share of miracles. I'm so happy about yoursite. You are in my prayers always.hugs

[Guest guest]

In a message dated 4/1/02 12:52:52 PM Pacific Standard Time, judyo_93@...

writes:

<< , I welcome all miracles with open arms, an I've had quite a few!

One was meeting and getting to know all of you. This support group is the

best, and I love you all! Judy

>>

Oh Judy I couldn't agree more.