Not sure what to do
AnonymousJuly 16, 2007 at 12:07 am
Please bear with me. I am trying all of your advice to try and not worry about things and to try and live my life but stuff keeps coming up. In my last posts I shared that I was waiting for results from tests done on the 1st. Well last Wed. I finally got through to the doctor who failed to return my phone calls. He said that the mouth culture came back positive for a fungal infection which requires ten days of medicine 4xs a day. Thats why my mouth and throat were sore and it was probably induced by the combination of antibiotics from my previous infection and the methotrexate. I called my Neuro who wants me to stop the metho again and come in to discuss whether to continue the treatment or not. Meanwhile I am breaking out in rashes and taking this nasty mouth rinse and swallow stuff and feeling weak. My conondrum is, should I stay on the chemo in order to arrest the CIDP and just tolerate the low immunity and infections, or should I go off the metho and see what the CIDP does on its own? I can still walk so I feel like maybe I should just let thlings be. I mean maybe the CIDP will stop progressing and this is the worst it will be. If not maybe if it gets worse I can then reconsider treatment. I still have Plasma exchange as an option. What do you guys think? I see the neuro on weds the 18th. I just am so tired of the side effects of the treatments. Thanks again for llistening and any input you can give.
AnonymousJuly 16, 2007 at 11:24 am
Linda, I’m sure your dr has a reason for wanting to discontinue the metho treatments. Starting someone on metho isn’t just a trial type decision that a dr makes, once they start it they usually don’t want to end it early just because of a side effect, that is normal with that medication. Talk it over with your dr, then make an educated decision afterwards. Side effects are normal with metho, but then again there is side effects with all medications and even possible with pp. I would write down your questions and ask your dr, and check out the side effects of metho, and then make your decision. Remember you are your own greatest advocate for your health. There is no easy answer to this gbs/cidp situation, everything is trial and error. Take care.
AnonymousJuly 17, 2007 at 4:11 am
It’s hard for us to give advice, you are your best advocate. That said :), way back in the begining of CIDP for me I had mouth sores, they gave me something called mycelex trouche (way bad spelling). That helped me a great deal. Getting your CIDP controlled is most important, hopefully your Docs will keep the other stuff at bay so you can get better. Your in my prayers.
AnonymousJuly 21, 2007 at 6:47 pm
Well, I saw my neuro and after a lengthy and emotonally exhausting appointment, I consented to continuing metho because our goal is to not let the CIDP take anymore of my strength than it already has. We set a time frame of three more months to see if the metho will do anything and then decide if its a viable treatment. In the meantime he upped my dose of folic acid which will help in the repair of the good cells that are being destroyed. I guess its a good thing to keep going because I am definitely getting weaker. I am losing strength in my arms and torso and have had to really cut down on my daily activities. It helped to reevaluate the situation and put things in perspective. I am grateful for this site and all of your knowledge too, because I was also able to ask more educated questions and have in fact prompted the neuro to test me for what varient of CIDP I might have so as to get more specific info. and treatment. I also was able to get them to arrange PT for me so I can get supportive ankle braces and a daily exercise routine. I was’nt able to get that before due to the kind of insurance I had prior to getting on my spouses insurance. So, at least I have a finite plan. By the way, I encourage people to go see the movie SICKO by Michel Moore. I assure you you will relate to it. I would appreciate others thoughts on the issue. The movie really validated some of my experiences with not getting the treatments I have needed or the financial burden lifted from having to go on disability. All Americans should be aware of what other countries do provide and what our country does not provide to us. Thanks for listening.
July 22, 2007 at 9:44 am
I am glad you have a plan that makes you comfortable. I know some others on this site have been in your same position and had to keep searching for better plans. If this does not work for you, maybe try to PM Pam H. I think I remember reading some of her posts, and they indicated she had difficulty getting the progression under control as well. She eventually took a particular drug and I believe she has been in remission since. Read all of her posts, maybe you can get some info.
Regarding your statement about Sicko, I don’t think I am going to see it. Too many times Hollywood twists and turns until we do not even know what the facts are. Moore had quite a mouthful of lies he dispelled in his Farenheight 911 movie. Some of his pals in Hollywood were even shocked. That is what he likes to do, shock so we go see his movies and he gets richer.
I remember posting before regarding healthcare. We go to Rush University in Chicago, a well known teaching hospital, top ten in neurology and Cancer treatment. Anyway, everytime Kevin has been there, I bet more than 75% of the children on that ward are on public aid. They are getting the same great treatment as us. Now across the street from our hospital is the county hospital, it is awful, I would rather die in the street than go there. My point is, I really do believe it is how loud you speak, how educated you are about your illness and who you have advocating for you that determines the outcome of your care, regardless if you are a paying customer or a public aid customer. Unfortunately, not all paying customers have insurance that gives us what we need. This year with premiums, co-pays, deductables, etc. we have thus far spent $19000. That is a huge amount of money and we have to cut back on other things, but thats what we have to do. I guess the problem is either you have to be able to pay for expensive insurance, or be able to qualify for free healthcare. As usual it is that middle area that sufferes.
We have friends that live in Canada, and they HATE the system, they have to wait so long for tests and treatments (cancer patient) We also have a friend that WAS a doctor in Canada and moved to the US because she was tired of people worsenning while they wait for treatment. I cannot be certain, but I believe there is a person on this site that has been waiting quite a while for their treatment. We received treatment less than 24 hours upon entering the ER.
I really think that this whole healthcare issue is just a crap shoot. We just have to make sure to scream to get what we need. It is sad, but true. I hope that movie does not make you loose faith in all of the healthcare field.
I am happy that you are finally being helped and I hope your current doctor and hospital treat you the way you should be treated. I hope your new course of action that you and your doctor have planned works. I will pray for you and all on this site when we go to church today. Try and have a nice day and enjoy the weekend.
Dawn Kevies mom 😮
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