Trying to cope with neurosarcoidosis

[Guest guest]

First off, file for your FMLA== Family Medical Leave Act. That makes it so that if you have ongoing health issues (you or a member of your family, your employer cannot deny you time off for medical care-- and you may be able to file for disablilty to help fill the gap you have from not being able to work.

If you are thinking that you cannot continue to work, then file for your State Disability. You can also start the process for SSDI. Social Security Disablity.

Once you have been out of work for 6 months, then SSDI kicks in and picks up some of the income lost-- -depending on your income level.

You might want to consult an attorney to see if the GI cocktail that contained the meds you had told them you were allergic to constitutes mal-practice. I suspect it does. Some of these types of lawyers don't charge anything unless you win your suit.

Most fluid retention is primarily because we don't get enough fluids, and our body goes into "starvation" mode-- it has to put fluids aside so that if you don't give it enough water- it has a reserve. I know this is a tricky battle when you are dealing with a weakened heart-- but do talk this over with your doctor.

I know I've done a gazillion posts on dehydration-- so you can search for info in our ARCHIVES AND LINKS. The address is at the bottom section of this and every email in an area called the "neurosarcoidosis community."

The first couple of days of increasing your water intake may make your hands and feet swell a bit more, but once your body sees that you aren't going to keep the fluids away, it will start processing it and you'l be amazed at how much you have to pee and how much better you feel all the way around when you get enough fluids. Your heart won't be working so hard, your pain will go down as the muscles and ligaments and joints can float the way they're supposed to, and you will not be as exhausted.

These are good places to start-- and yell if you need more info.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Mon, May 10, 2010 8:44:42 AMSubject: Trying to cope with neurosarcoidosis

On 6-23-08 I was at work and had serve chest pains making it very difficult to breathe so my firm called 911. The ambulance rushed me to town University Hospital. The nurses came in took my vital signs and medical history information and when the doctor came he also checked the vital signs and wrote down my medical history. When explaining my medical history I told them I was allergenic to Phenobarbital, Donnatal, and Dilantin and that I had a seizure as a child and those medicines made me have a serve allergic reaction were I almost died at the age of 3. town ran some test and diagnosed me with acid reflux and gave me a GI Cocktail to take for it in the hospital and then gave me a prescription also and released me. The next morning I had hives on my arms and then it spread to my entire body, I had serve chest pains, my skins was burning and I could barely walk on my feet. My husband called an ambulance and they rushed me to PG County

Hospital they said I have a allergic reaction to the GI Cocktail because the main ingredients in that were the same medicines that I told town I was allergic to, which were Phenobarbital and Donnatal. They told I was very lucky to have gotten medical attention because my body was serve damaged and I was in fact dying. PG Hospital keep me for a couple of hours and though they had it under control and sent me home with prescriptions but in the middle of the night very early morning I had to be rushed back to the hospital because of pain and not being able to breathe I had gotten worse. So P.G. Hospital admitted me and treated me for a weak sent me home and with in two weeks my body have a relapse and I was rushed back to PG Hospital. This time they caught it in time but once again my body inside and out is serve damaged. I was out of work for a month due to town's University Hospital's negligence, I had to use all of PTO leave and they put me

& my job in jeopardy. I am suffering still from the affects of this health wise, and mentally. Sometimes my body is so swollen I can't walk on my feet and that prevents me from working and if I don't work I don't get paid because I am out of leave. I suffer on a daily basis due to their negligence. I have sarcodosis in my nerve system and in my lymph nodes along with fibromyalgia now due to the hospital's negligence. It has been almost two years and my life has gotten worse health wise it's a struggle to keep my job because I stay sick a lot. This year alone since January my sick leave at work is gone due to hospital stays. It's very hard to operate in a normal fashion due to my illnesses. A lot of times I can't work nor function at work due to swelling of my hands, feet, face (with pain). I really need help.

[Guest guest]

Another thing that might help with the swelling, if it's available to you, is warm water immersion. Just a bathtub isn't enough; you have to be pretty much up to your neck. If you have access to a hot tub, have them turn the temp down to a comfortable level, probably low 90's (it might take a day for the temp to drop if they keep it at 104 like I do). If regular pool temp is ok for you, that works too. You don't have to do any exercise, just sit or bob in the water for at least 30 minutes. Your body will try to equalize the water pressure & cause you to diurese (pee out lots). Until I was a midwife I always thought that swimming made me pee because I swallowed water! I've had many patients lose several pounds of water in a day or two from water immersion.

Re: the GI cocktail, that's definitely a medical error; in your case a life-threatening error. I agree with Tracie about seeing an attorney. They should settle very nicely, and make sure the settlement includes review and changes in their medication procedures. You might want to also contact the state medical board. This is an inexcusable error.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: tiodaat2001@...Date: Mon, 10 May 2010 16:30:31 -0700Subject: Re: Trying to cope with neurosarcoidosis

First off, file for your FMLA== Family Medical Leave Act. That makes it so that if you have ongoing health issues (you or a member of your family, your employer cannot deny you time off for medical care-- and you may be able to file for disablilty to help fill the gap you have from not being able to work.

If you are thinking that you cannot continue to work, then file for your State Disability. You can also start the process for SSDI. Social Security Disablity.

Once you have been out of work for 6 months, then SSDI kicks in and picks up some of the income lost-- -depending on your income level.

You might want to consult an attorney to see if the GI cocktail that contained the meds you had told them you were allergic to constitutes mal-practice. I suspect it does. Some of these types of lawyers don't charge anything unless you win your suit.

Most fluid retention is primarily because we don't get enough fluids, and our body goes into "starvation" mode-- it has to put fluids aside so that if you don't give it enough water- it has a reserve. I know this is a tricky battle when you are dealing with a weakened heart-- but do talk this over with your doctor.

I know I've done a gazillion posts on dehydration-- so you can search for info in our ARCHIVES AND LINKS. The address is at the bottom section of this and every email in an area called the "neurosarcoidosis community."

The first couple of days of increasing your water intake may make your hands and feet swell a bit more, but once your body sees that you aren't going to keep the fluids away, it will start processing it and you'l be amazed at how much you have to pee and how much better you feel all the way around when you get enough fluids. Your heart won't be working so hard, your pain will go down as the muscles and ligaments and joints can float the way they're supposed to, and you will not be as exhausted.

These are good places to start-- and yell if you need more info.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Mon, May 10, 2010 8:44:42 AMSubject: Trying to cope with neurosarcoidosis

On 6-23-08 I was at work and had serve chest pains making it very difficult to breathe so my firm called 911. The ambulance rushed me to town University Hospital. The nurses came in took my vital signs and medical history information and when the doctor came he also checked the vital signs and wrote down my medical history. When explaining my medical history I told them I was allergenic to Phenobarbital, Donnatal, and Dilantin and that I had a seizure as a child and those medicines made me have a serve allergic reaction were I almost died at the age of 3. town ran some test and diagnosed me with acid reflux and gave me a GI Cocktail to take for it in the hospital and then gave me a prescription also and released me. The next morning I had hives on my arms and then it spread to my entire body, I had serve chest pains, my skins was burning and I could barely walk on my feet. My husband called an ambulance and they rushed me to PG County Hospital they said I have a allergic reaction to the GI Cocktail because the main ingredients in that were the same medicines that I told town I was allergic to, which were Phenobarbital and Donnatal. They told I was very lucky to have gotten medical attention because my body was serve damaged and I was in fact dying. PG Hospital keep me for a couple of hours and though they had it under control and sent me home with prescriptions but in the middle of the night very early morning I had to be rushed back to the hospital because of pain and not being able to breathe I had gotten worse. So P.G. Hospital admitted me and treated me for a weak sent me home and with in two weeks my body have a relapse and I was rushed back to PG Hospital. This time they caught it in time but once again my body inside and out is serve damaged. I was out of work for a month due to town's University Hospital's negligence, I had to use all of PTO leave and they put me & my job in jeopardy. I am suffering still from the affects of this health wise, and mentally. Sometimes my body is so swollen I can't walk on my feet and that prevents me from working and if I don't work I don't get paid because I am out of leave. I suffer on a daily basis due to their negligence. I have sarcodosis in my nerve system and in my lymph nodes along with fibromyalgia now due to the hospital's negligence. It has been almost two years and my life has gotten worse health wise it's a struggle to keep my job because I stay sick a lot. This year alone since January my sick leave at work is gone due to hospital stays. It's very hard to operate in a normal fashion due to my illnesses. A lot of times I can't work nor function at work due to swelling of my hands, feet, face (with pain). I really need help.

The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy.

[Guest guest]

Are you being treated for Sarcoidosis at all?  Can you get disability through your work? I'm sorry to hear you are having so many problems.  Many of us here have had to give up work, it's difficult but sometimes work is just too much.

Sometimes life is just to much. Marla

 

On 6-23-08 I was at work and had serve chest pains making it very difficult to breathe so my firm called 911. The ambulance rushed me to town University Ho prospital. The nurses came in took my vital signs and medical history information and when the doctor came he also checked the vital signs and wrote down my medical history. When explaining my medical history I told them I was allergenic to Phenobarbital, Donnatal, and Dilantin and that I had a seizure as a child and those medicines made me have a serve allergic reaction were I almost died at the age of 3. town ran some test and diagnosed me with acid reflux and gave me a GI Cocktail to take for it in the hospital and then gave me a prescription also and released me. The next morning I had hives on my arms and then it spread to my entire body, I had serve chest pains, my skins was burning and I could barely walk on my feet. My husband called an ambulance and they rushed me to PG County Hospital they said I have a allergic reaction to the GI Cocktail because the main ingredients in that were the same medicines that I told town I was allergic to, which were Phenobarbital and Donnatal. They told I was very lucky to have gotten medical attention because my body was serve damaged and I was in fact dying. PG Hospital keep me for a couple of hours and though they had it under control and sent me home with prescriptions but in the middle of the night very early morning I had to be rushed back to the hospital because of pain and not being able to breathe I had gotten worse. So P.G. Hospital admitted me and treated me for a weak sent me home and with in two weeks my body have a relapse and I was rushed back to PG Hospital. This time they caught it in time but once again my body inside and out is serve damaged. I was out of work for a month due to town's University Hospital's negligence, I had to use all of PTO leave and they put me & my job in jeopardy. I am suffering still from the affects of this health wise, and mentally. Sometimes my body is so swollen I can't walk on my feet and that prevents me from working and if I don't work I don't get paid because I am out of leave. I suffer on a daily basis due to their negligence. I have sarcodosis in my nerve system and in my lymph nodes along with fibromyalgia now due to the hospital's negligence. It has been almost two years and my life has gotten worse health wise it's a struggle to keep my job because I stay sick a lot. This year alone since January my sick leave at work is gone due to hospital stays. It's very hard to operate in a normal fashion due to my illnesses. A lot of times I can't work nor function at work due to swelling of my hands, feet, face (with pain). I really need help.

[Guest guest]

I agree with Rose.........not only about the water immersion, but also about an attorney.

Do NOT let this go on.........it IS inexcuseable and should be stopped before too many

more people are hurt or even killed! Good Doctors are wonderful people but........all

people are not GOOD Doctors......... Like any other profession, I think some are just

in it for the money. Of course, there is always the chance that it was a mistake but

in this case, they should have known better......

Take care.............

Hugs,DarleneNS Co-Owner/Moderator

RE: Trying to cope with neurosarcoidosis

Another thing that might help with the swelling, if it's available to you, is warm water immersion. Just a bathtub isn't enough; you have to be pretty much up to your neck. If you have access to a hot tub, have them turn the temp down to a comfortable level, probably low 90's (it might take a day for the temp to drop if they keep it at 104 like I do). If regular pool temp is ok for you, that works too. You don't have to do any exercise, just sit or bob in the water for at least 30 minutes. Your body will try to equalize the water pressure & cause you to diurese (pee out lots). Until I was a midwife I always thought that swimming made me pee because I swallowed water! I've had many patients lose several pounds of water in a day or two from water immersion. Re: the GI cocktail, that's definitely a medical error; in your case a life-threatening error. I agree with Tracie about seeing an attorney. They should settle very nicely, and make sure the settlement includes review and changes in their medication procedures. You might want to also contact the state medical board. This is an inexcusable error.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Thank you all for your responses! I will definitely try what you all have suggested hopefully it will help. I do have a mal practice suit going against the hospital it's just hard to continue to work under such pressure from my job. My job makes it very hard to function stress free I worry that if I get sick I may not have a job one day and I definitely need to work I have a family to take care of. I am going to file for SSI and pray that they approve me. It's hard being on so many different medications though because I have meds for the sarcoid,

fibromyalgia, high blood pressure, etc. I just pray it gets better