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667078 tn?1316000935

Neuropathy that is not MS related

I have neuropathy and am going on Lyrica or Trileptal. It is not MS but it is painful. My inflamed lymph nodes are pressing on nerves. My neck is sore, my back is sore. It hurts when I breath. So people with neuropathy not related to MS can be in plenty of pain. I just thought of peripheral neuropathy.

The doctor wants to send me to hospice but I am not ready. Since hospice came out in February and the called me back the same day and said I am not eligible because of the drugs I am on are too expensive.  Hospice does not get paid enough for the patients they get. I want to stay at home and I have plenty of friends so I may not need hospice until the end. I just wonder why the doctor is pushing me now. Does he know something he is not sharing? I guess it is better not to know. I am happy and living my life.

I walked in the water for a 1 1/2 Monday. I usually walk an hour. I ride Clara every other week. I have friends take me shopping at thrift stores. I have so many DVDs. I found the prettiest shirt. Bright colors and cotton. My life is good.
4 Responses
5509293 tn?1428531475
Alex, you are awesome. I see you in your new colorful shirt now ☺ you look lovely. But even if you were not wearing such a cool shirt, you would shine through your spirit. You are one of the most honest and genuine people I know. I read today that turmeric is great for pain and is anti-inflammatory. I tried it today in a hot tea. It was comforting. I hope you do not go to hospice when you do not want to. Many hugs and prayers, JdC
987762 tn?1331027953
COMMUNITY LEADER
Alex,

I personally have 5 family/friends living in chronic with pain due to peripheral neuropathy, all have different primary medical reasons behind their nerve damage, neuropathy can be very painful and difficult to find a level of comfort...

As difficult as this topic is to discuss.....over here we have two similar care options, palliative or hospice, palliative care is intended to relieve discomfort, symptoms, and stress of the patient at any time during the course of the illness, hospice care only becomes available for patients who are considered to be terminal or life expectancy of within six months.

Most hospice care programs over here are carried out in the home of the patient and completely relies on the family, with a visiting hospice nurse as back up because hospice care focuses more on helping the patient feeling as comfortable as possible towards the end of their life....Dad was never sick so his cancer dx was a shock to everyone, he never wanted to be anywhere else but at home, he had hospice care/support from the very beginning because he wasn't expected to live beyond 3 months from dx, he survived for over 2 years and lived as normal a life as possible until his last few weeks.

You are in the driver seat, make all the choices that you want to, when you want to and not before......do what ever you need to do in the time frame that's right for you! Find more bright shirts that make you happy, keep riding Clara when you can and please just keep being you....HUGS!!!

Gentle hugs from me and mine........JJ



Avatar universal
Hi Alex, I am sorry to hear that the darned lemons in life keep coming your way. Bless you for your outlook and persistent spirit.

Here we don't really have much for hospice. When Dad was near the end, we couldn't take him home because his needs were too great but we did have a wonderful palliative care specialist at the hospital he was in and she helped him (and us) a lot.

I love color! Good for you for the shirt and cotton is so soft and cool. I am also so happy that you still have Clara in your life.

Happy pool walking and horse riding and I pray that whichever med you choose helps.

Many gentle hugs,

Corrie
667078 tn?1316000935
Thanks everyone. I saw the pain clinic. The reason the Palliative care mentioned hospise is so they can put pain killers in my port with a pump. The pain clinic said they can put like the Baclfen pump except with opiates. They only glitch is I can't see the doctor to talk about it until the end of December.
1 Comments
Good news on the rationale...what a disappointment that you have to wait so long to talk about it with your doc :( Any option to discuss sooner via telephone? I really hope one of the other drugs provide you some relief in the meantime.

Thinking of you. I am glad you are finding joy in so many things despite the pain. You are so inspirational! I am trying to learn from your shining example.

Cheryl
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