discarded APN

Jenny P. Yes, I was on betaserone for over 2 years and tried copaxone for a little while. Unfortunately the betaserone wasn't effective for me and I progressed rapidly. Couldn't really call it relapsing/remitting anymore because I forgot to do the remitting part:chuckle (just kidding) I then tried copaxone and experienced bad side effects with it. Chest pains, palpitations, respiratory depression. The doc I had at the time told me that those symptoms weren't really life threatening, just bothersome. The neurologist I changed to didn't agree and I went back to the betaserone for a while and then the doc decided that it wasn't doing anything for me and we stopped it. Avonex and betaserone are both interferones with the same effects so I haven't done the avonex. I read a lot of the research on these drugs.(one of the problems with getting a disease in your own specialty) While they help a lot of people, they don't always work for everyone and I wasn't one of the lucky ones. I have had lots of IV steroids and now have no veins left. (hence, the PICC) The steroids aren't working for me anymore either. Now they want me to try Novantrone. It's one of the chemo drugs used for guys with prostate ca. The thought is that if they use that, the nasty side effects that they find when it's used for ca patients, (frying the immune system) will/might help slow down the progression of MS. The chances of it being effective are about the same, actually slightly less than the MS ABC drugs. They are starting some bone marrow transplant studies for MS. I'm thinking about these last two things. Trying to decide if it's bad to accept that this is where I'm at and to continue to adapt to what I have left and to refrain from "grabbing at straws" and trying all the new things that are coming along. Especially when the success rates are so low. I've worked research long enough to know that the people on the research protocols are those who have failed all the conventional treatments and basically "have nothing more to loose". I'm just tired of "re-inventing" myself over and over again and trying to prove to people that I still have some worth. MY BRAIN STILL WORKS!!! my legs don't (and a few other things from about the waist down :stone Most people can't see past the wheelchair though. Is it "giving up" or is it "acceptance"? Since my employer decided that they weren't "legally required" to find another position for me and terminated me, I'll be loosing my health insurance in another 10 months or so. I'm covered on my husband's, but it doesn't provide anywhere near as much as mine did. At least I found out that the drugs weren't helping me, before I ended up loosing our home due to the cost of the ABC drugs without insurance to cover them. Sorry, I'm rambling again:imbar It does feel pretty good though. Thanks for listening.

ruffhouser, No need to be sorry for laughing about the ASSumptions made by the doc regarding my "assumed" depression. I laugh about it myself. Over the past couple of years I've been the subject of many such ASSumptions. Most of them from people who really should know better. You'll love this one. I needed another round of IV steroids a month after hospital discharge and my doctor and I decided that they could be done at home. I had given them hundreds of times and he just wanted someone to come in and start the IV for me and then I would be hanging the steroids myself. No problem, right? Well, the home health nurse decided other wise. She explained that they do have a lot of lay people hanging their own IV meds, but she "couldn't allow a NEURO patient to be trusted with doing that." She then explained that "you may have been a nurse, but now you are just a patient and a NEURO patient at that." I demonstrated the procedure to her, told her about the possible side effects, the expected effects of the drugs, potential problems and interventions for them. She again explained that a NEURO patient couldn't be trusted, in her opinion, with that. She then went on to do her "complete home assessment". Now, I've been a nurse long enough to know that there are forms to be filled out and all that. I also know that there are ways of doing it without insulting and degrading people. Commenting on the fact that there are smoke detectors in our home, she asked if I knew what those were, what they sounded like and if I could find a door to get out of the house if they went off. I explained that I unfortunately found a door to let her into my home and in a minute I would be finding it again to throw her out. She followed with questions like, "do you know what that red can with the little black hoze in front of that fireplace is for? Do you know which of these faucets are for hot water? She went on and on. I explained the different areas of the brain and what functions they controlled. Which were for motor functions, which were for memory etc. I then pulled out my MRI results and explained that the location of the lesions in my brain did not affect thinking, reasoning or any cognitive skills. She wasn't sure that I was right, so having worked in Neurology for 12 years I pulled out several of my books on the subject and she had to admit that I was right and knew more about it than she did. After her 12 attempts to start the IV she ran 1 gram of methoprednisolone in over 20 minutes (way too fast). Made me sicker than a dog. She was off the next day. The nurse covering came in, decided that there was no need for her to be there and said if I had any problems I could call her. I never let another home health nurse in my home again. After that I had a PICC put in under flouroscopy in the hospital. Took care of it myself for about a year (had five more rounds of steroids over that time) with no infections or any problems with it clotting off. I have more, but once again, I've "talked" way too much.:chuckle :

rkpgb You have been in my thoughts since I read your post last evening. Welcome to the MS sisterhood. A diagnosis of MS is frightening but not the end of everything. The scariest part is not knowing. It often takes years for that definative diagnosis and it's almost a relief to know what the problem is. You can handle anything once you know what you are dealing with. I was diagnosed with MS about 4 years ago. You're right when you said that you've needed to make a lot of life adjustments. Adjustment is the name of the game. You can still do things, just oftentimes they will be done differently. Energy conservation is very important. Things like having all the supplies for a project (cooking, writing, sewing, painting or whatever) in easy reach to decrease the need to walk across the room to get whatever you need. Most tasks can be done in a sitting position. Rest and bathroom breaks are very important. I know that these things can be very difficult while doing bedside nursing. PRN or agency nursing is a great idea to decrease the hours you'd need to make as much money as you would doing staff nursing. Are your symptoms "invisible"? If so, now would be the best time to get into something that wouldn't require all the extreme physical exertion that bedside nursing does. It's a good idea to keep your diagnosis quiet until you find something or until /if your symptoms become visible. Because I was diagnosed and treated by my own department I found that I had no patient confidentiality. I worked in Neurology. Broke my own rules there. Never get a disease in your own specialty and never go into a teaching hospital in July. :chuckle I know how hard it is. People who should be the most compassionate and understanding (administrators and others in the health "care?" industry) will give the least amount of support. When I was first diagnosed one of the residents decided that since I wasn't crying that I was really depressed and just blocking and ordered Zoloft. Then the next morning when she came in I had the TV on and there was a commercial on for a Pontiac Grand AM SE. I just bought one about 2 months before. I was so excited because I had waited until the kids were out of school and on their own. You know, one of those mom things. So much for delayed gratification :chuckle I was a little teary eyed at that time so she felt that she was right and put in my chart that I had "significant depression" over the diagnosis. I tried explaining that I wasn't depressed, I was p'd off because I wanted to be out of the hospital driving my new car. When you c/o fatigue you will also be put on antidepressants because, "you have MS, the fatigue must be from depression". Funny thing was at that time I was working 60 hours a week (salaried) and that doctor didn't believe that that had anything to do with the fatigue. I changed MDs after that and a few more of her antics. Have you seen a physical therapist? They can give you strength building exercises as well as some for balance and flexibiity. Those help a lot. Occupational therapy can help with more ideas for energy conservation. Little things like a shower chair and cool water instead of hot, staying inside in an air conditioned environment during hot weather. Support of family and friends is important. I want to start a support group for nurses with MS. We have different needs and views of the world than the general public. But I guess that's another thread. You can PM me anytime, there's a whole lot more I could tell you. I'm not sure where you are with your MS. Let me know. We can help/support each other. You're in my thoughts and prayers. Take care.