decision making--long post

[Guest guest]

Get comfortable, make some decaf tea, maybe have a healthy snack handy!

Thanks for the input, . What we have to remember is that there is always a balance between risks & benefits--whether it's meds, tests, surgeries; sarc, diabetes, asthma, shin splints. Most medical schools are now training their students to include patients (and families when appropriate) in the decision-making. As a student nurse-midwife back in 1983, I was amazed to learn this process! I remember once I had a patient with a vaginal infection, for which there were 3 treatment options. I was asking the instructor which one I should use & she said, "Why not ask the patient what she would prefer?" It was one of those light-bulb moments! Sure enough, when I discussed it with the patient, she was first of all surprised & grateful that she was given a choice, then secondly, stated that she had tried one option before without success, didn't think she would comply well with the second, so chose the third. We were all happy! For the next 20+ years as a CNM, I never forgot that encounter & it became one of my favorite aspects of practice. It was especially gratifying when used with a patient who had never been offered her opinion or choice! That's a comparatively minor incident (unless you are the woman with the symptoms!), but the principle is the same. We, as the patient, have to have the knowledge & courage to stand up for ourselves. It would be nice to get the knowledge from our docs, but unfortunately we often have to obtain that ourselves. That's why this group is so important. Everyone needs to bcome familiar with the archives & links. Darlene has worked diligently to clean out the archives, removing messages that are unneeded or mislabeled. We can all help her by changing the subject line when indicated. If someone sends a birthday greeting & someone else responds to that post with a question or info about a drug, symptom, etc., remember to change the subject line to reflect the content of the post. That makes it much easier for someone to find info they are looking for in the archives. I am going to try to update the links section soon. If anyone has a link they would like included, please send it to me. To sum this all up, remember that just as we all respond to sarc differently, we will respond to drugs & treatments differently. We need to stay tuned in to our bodies & recognize when something is not right. It may not always be serious, or even sarc-related, but we need to have a high index of suspicion & get it checked out. When the neuropathy started in my feet, I think in 2002, for the first few months it felt like I had little pieces of tape stuck to the bottom of my feet. The site varied & the sensation didn't last long, so I didn't pay much attention to it. Over time, the areas increased & lasted longer, then my feet felt warm--like I had held them too close to a fire. There still wasn't any pain, so I didn't mention it to my doctor. A few months later, the entire front halves of both feet were numb & painful. When I walked very much, it felt like little knives sticking in my feet. I don't know if the process could have been arrested or slowed at the beginning, but I sure wish I had told my doctor & tried to do something about it. Now I have permanent nerve damage that is only slightly relieved by Lyrica & elevating my feet as much as possible. This is just one example of the need to pay attention to changes in our bodies. When you are faced with decisions, get input from others, such as this group. Ask your doctor for information on risks vs. benefits; if he/she doesn't have it, go online to reputable sites, such as those listed below. And don't forget to listen to your gut feelings. https://emall.nhlbihin.net/product2.asp?sku=5060 National Institute of Health

http://www.medscape.com/viewarticle/466526?src=search Prednisone pro & con

http://www.nationaljewish.org/medfacts/sarcoid.html National Jewish Center

http://www.stopdarcoidosis.org Foundation of Sarcoidosis Research (FSR)

http://www.tenresolutions.org Resources for patients/caregivers in dealing with chronic pain.

http://www.invisibledisabilities.com/lookgood.htm "But You Look Good!" Great booklet for dealing with unbelievers.

There are many more in the Links section at the bottom of every group email. As I said, I want to update this, but there

are many valuable resources listed. Some, like FSR & the National Inst. of Health, will send one free copy & charge a small fee for additional copies.

If you are unable to do this research yourself due to fatigue, depression, etc., enlist someone to help you. Try family members, friends, church members, anyone who is patient, caring & Internet savvy. They don't have to have a medical background, just the tenacity of a bulldog or terrier! Document all your symptoms, what helps or makes it worse. Some folks use a notebook. I use the computer; I have a file under "Rose's stuff" called Medical Stuff. I have all my med lists there--I keep them updated on the computer so that I can just print it out when I go to the doctor, plus keep one in my purse. I have all the old ones, which comes in handy. Then I have my symptom histories, which helps when I can't remember just when I started to feel like there was tape on my feet. Every time I go to a doctor, I type an update--as brief as possible, I know they don't have time to read a novel--which includes changes in symptoms, what I want to accomplish with this meeting, and any questions. I give a copy to the doctor & keep one to jot notes. If it's a new doctor, I take a brief history compiled from all these notes (I keep that on the computer also), with symptoms pertinent to that doctor highlighted. I know from my 20+ years as a certified nurse-midwife that when a patient brings in a long list of complaints, we won't have time to go through all of them. So I would ask them which were the top 3, that bothered or worried them the most. We would deal with those, I would copy the note to put in the front of the chart & give it back to her, saying that we would talk about some more at the next appointment. Most of the time, by the next appt, she wasn't bothered by the rest of the list. Obviously, sarc is much more serious than pregnancy, but again, the principle is the same. Put your top priorities first, but add the other things & indicate that you do need to discuss them. My neuro a couple of times scheduled me at the end of the day so that we would have all the time I needed. God bless him. But there are other doctors out there like that. More than likely you will need an advocate to help you accomplish all this. Look for someone assertive, but calm & respectful, someone who knows how to compromise & negotiate, who can understand the pressures of the medical team, but is definitely representing YOUR interests. There are people like that out there.

Well, I guess I've lived up to the title now! Best of luck to everybody. This stuff is all doable.

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

> To: Neurosarcoidosis > Date: Wed, 11 Aug 2010 07:56:10 +0100> Subject: RE: METHOTREXATE> > Just to back up what Rose has said: there is a possibility of liver> damage, although this doesn't necessarily affect everyone. This is the> reason for sticking to the blood test regime, especially at the start. I> am one of the lucky ones, for whom the blood tests have remained normal, so> the 30mg/week isn't a problem. Downside is that I don't take alcohol any> more, as booze can make matters worse. However, it's only after a really> tough day at work that I miss the cleansing beer! I have noticed the hair> thinning a bit faster than before, but that is minor in comparason with the> reduction in symptoms. Incidentally, the blood tests are also used to> confirm that the ACE and other levels are correct, which shows whether or> not the MTX is working at the level ordered. Adjustments can then be made.> > Best regards,> > > > > >> > Back in 2004 (I think) my local neuro> > started my on MTX after weaning me off Pred & amp; Imuran. He ordered> > \25mg/week; shortly after that I saw Dr. Baughman in Cincy & amp; he> > said that their research showed that anything over 15mg/wk did not> > increase benefits & amp; increased side effects & amp; liver damage. So> > we backed it down to 15. I was fortunate to have no side effects> > except some hair loss. Luckily I had really thick hair to begin with,> > so my hair still looked okay.> >> > I know some members have used the injectionable MTX; don't know if> > that will decrease the GI symptoms. Might want to discuss that with> > your doc. Someone posted that they were taking 75 mg; I wonder if they> > meant 7.5. I couldn't find the post again.> >> >> > Ramblin' Rose> > Moderator> >> > A merry heart is good medicine. Proverbs 17:22> >> >> >> >> > To: Neurosarcoidosis > > > Date: Mon, 9 Aug 2010 06:43:14 -0700> > Subject: Re: METHOTREXATE> >> >> >> > I was on it for 4 years at 7.5 mg for my pulmonary sarcoidosis. When> > I was honored (LOL) with the neurosarcoidosis this past November I> > went to 30 mg and let me tell you I know what you are talking about. I> > stayed at 30 for about 3 weeks and then was cut down to 20 and have> > been able to tolerate that a lot better.> >> > > >> > > Subject: METHOTREXATE> > To: Neurosarcoidosis > > Date: Sunday, August 8, 2010, 10:13 PM> >> > Hey, what's the longest anyone's been on Methotrexate and what> > doses. This is the 3rd time I was put on it and I had the same side> > effects the first two times and was able to deal with it. This time> > it's ripping up my bowels and I just feel like shit,.> >> >> >> >> >> > Anyone? Anyone? Buller? Anyone?> >> >> >> >> >> >> >> >> >> >> >> > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >