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homeonthegreen 07-01-2011 12:44 PM

Newbie to the group
 
I joined the group to hear ways to lessen nerve pain and just talk with others who have nerve disease.

My story is long (sorry). In the spring of 2009 I began to not feel well, tire all of the time, weak and I had swellings all over my body that were very painful. It hurt terribly to receive a hug and to lie in bed. I was told to exercise more because the lumps were from a lactic acid build up, hard to do when you are exhausted. Also during this time my blood work was going wacky. I was anemic and my sodium was low. So I went on iron twice a day and went on salt pills, the sodium went up but the hemoglobin did not. Then several hospitalizations, lots of doctors and blood tests. Moving on to Aug of 2009 I got very sick, had gone to a walker as stability was very bad. Had lots of problems urinating. On September 15th I walked for the last time. My husband went to help me up and my legs were like jelly, call ambulance and go to hospital. My blood pressure went very low on the ride. Got to ER, they cath 1200ccs of urine from me and tell me not to raise my head because my blood pressure is so low. On to ICU to spend the night and receive lots of steroids. My husband is very frustrated because they can't figure out what is wrong with me. We had lived in MN for many years and I had been treated at Mayo before, so he start the process as to how I can get move there. The next day they tell me that I am moving me down to the step down unit to get me ready to go home. At that my husband told the doctor that we were going to Mayo and to start the process. By 4 pm that day I was on an air ambulance to Mayo. It took Mayo 2 more weeks before they find a diagnosis which was B cell lymphoma and some kind of autoimmune like disease, the lumps were fatty necrosis. I stayed on at Mayo to get my first 2 chemos and then went home to enter a rehab facility and finished the other 4 rounds. I went through that very easily but I still could not walk or use my hands nor could I roll over in bed unassisted. I will finish in another post, but I am too tired to do any more now.

azoyizes 07-01-2011 01:31 PM

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Hello, and welcome to NT! This is such a great place with many friendly, caring, and helpful people.

We're so glad you found us! :)

http://neurotalk.psychcentral.com/forum2.html

MelodyL 07-01-2011 03:41 PM

Quote:

Originally Posted by homeonthegreen (Post 782963)
I joined the group to hear ways to lessen nerve pain and just talk with others who have nerve disease.

My story is long (sorry). In the spring of 2009 I began to not feel well, tire all of the time, weak and I had swellings all over my body that were very painful. It hurt terribly to receive a hug and to lie in bed. I was told to exercise more because the lumps were from a lactic acid build up, hard to do when you are exhausted. Also during this time my blood work was going wacky. I was anemic and my sodium was low. So I went on iron twice a day and went on salt pills, the sodium went up but the hemoglobin did not. Then several hospitalizations, lots of doctors and blood tests. Moving on to Aug of 2009 I got very sick, had gone to a walker as stability was very bad. Had lots of problems urinating. On September 15th I walked for the last time. My husband went to help me up and my legs were like jelly, call ambulance and go to hospital. My blood pressure went very low on the ride. Got to ER, they cath 1200ccs of urine from me and tell me not to raise my head because my blood pressure is so low. On to ICU to spend the night and receive lots of steroids. My husband is very frustrated because they can't figure out what is wrong with me. We had lived in MN for many years and I had been treated at Mayo before, so he start the process as to how I can get move there. The next day they tell me that I am moving me down to the step down unit to get me ready to go home. At that my husband told the doctor that we were going to Mayo and to start the process. By 4 pm that day I was on an air ambulance to Mayo. It took Mayo 2 more weeks before they find a diagnosis which was B cell lymphoma and some kind of autoimmune like disease, the lumps were fatty necrosis. I stayed on at Mayo to get my first 2 chemos and then went home to enter a rehab facility and finished the other 4 rounds. I went through that very easily but I still could not walk or use my hands nor could I roll over in bed unassisted. I will finish in another post, but I am too tired to do any more now.

Hi.

I am so sorry for all that you have gone through. It really does sound scary doesn't it. But you have gotten through it, and you came here and found us and now, when you feel better, you should continue to post. Some others, more knowledgeable than myself, will come along and reply and head you in the right direction.

I am sending you hugs and good thoughts.

You are in the right place. We're a nice bunch of people who really care about one another.

Take care,

Melody

Darlene 07-02-2011 12:56 AM

Great to meet you!!
 

Happy to see you have come to be with us. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways. Seems you have been through some ruff times. Please keep us up to date.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

tamiloo 07-03-2011 06:21 PM

So grateful you found us...Welcome to Neuro Talk!!:welcome_sign: Lots of great folks here to listen or to help...you take care and hope to get to know you better!

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