Re: not sure what to do!

[Guest guest]

Barb,

TIA's--transient Ischemic Attacks are common with NS. WRITE a note and include your neuro's phone # and name-- and carry it with you. That way if you can show them the note-- (in fact, get a letter from your Neuro when you go in) and show them his note-- or your's so that you can explain what is going on when you lose your speech. TIA's are warning mini-strokes, and can be suggestive of a full blown stroke upcoming. I'm sure the blood test they ran was to check to see if you had the changes in blood levels that occur with a TIA-- but even if it didn't-- they should have evaluated further. Do you have an option of another ER that your insurance will cover?

The other is that if you have some vasculitis going on-- you may have had some inflammation of the 5th nerve (7th nerve palsy (Bell's Palsy) is also common. The 5th nerve is on the side that would control the right side of your face.

Do you have facial drooping on that side? What is your speech doing now? Do you have any right side weakness in your arms or legs?

I'd call your Neuro's office and move your appt up if you can. Tell them what happened and that the local ER blew you off. Then the neuro can take the ball and run with it. Let them know about any of the above symptoms. If you can't call-- have someone do it for you.

Here is a site that has some very interesting articles on neuro issues.

http://yassermetwally.wordpress.com/cranial-nerve-disorders/

To: Neurosarcoidosis Sent: Tue, January 12, 2010 6:48:57 AMSubject: not sure what to do!

hi my fellow sarkies , i was making breakfast and had an episode where my energy just leaves my right side. this has happened before and my speech was affected , but this time my speech did not come back! it is not slurred but more like a stutter that i never had!! so i went to the er and the doctors would not have a one on one phone call with my neurologist as instructed! so i had blood work (which came back normal) and left the hospital ! so here i sit having the same episodes and no answers. i feel like i am crying wolf but this stuff is REAL!!! I was instructed by docs in ny and cleveland clinic to go to the er ! any ideas of what i should do next? when i get an episode i can barely talk or walk ! i seriously need some advice ! does this happen to anyone else? i also get very sleepy when this happens! hope you can help me. i am going to cleveland clinic on the 18th of january but in the mean time dont know what to

do!

[Guest guest]

Barbara

My heart really goes out to you! I've signed up with this supportive group, shortly after Oct. of last year. I feel bad cause I really haven't responded to anyone, though I do read the group's e-mails and birthday reminders. I've been so overwhelmed dealing with my husband who has the demon monster disease, that I've been off-line. The reason I'm responding to you because, I know the feeing of the medical staff, looking at me in the ER, each and everytime he is evac to the hospital. My husband has so many ailments besides the monster disease, it's like catch-22. He is now bed-ridden and paraplegic. What I'm dealing with at the moment is his decubits ulcer (bed-sore), near his coccyx area. We were blessed to have a great neurologist at the Mayo clinic in ville, who was referred to us by our local neurologist. My husband has been in the hospital 6 times last year, and just recently came out

again last week. The problem is, the main focus each time he's been in because of sepsis, whether it be euro-sepsis or a UTI infection. I'm so frustated ! My husband had to have a colostomy done (which has been a great help on my part, as far as cleaning him), which is why it was done because his wound near the buttocks area had a hard time healing. Any one familiarized with a wound vac? To make a long story short--the last time he was in, of which he stayed in the ER for 2 days before having a room, I always asked what is his diagnosis for being admitted? Of course, it's sepsis--but this last time, while I was in the room helping the nurse change his colostomy bag(mind you, it's been 2 days), his wound care dr. comes in, sees us changing his colosomy bag and just blurts out, looks like C-diff (Colostridium difficile), i want a culture done. Sure enough--the culture was positive. After concurring

with an infectionous disease dr., two additional anti-biotics are added on to his meds list. I discussed the situation with our home-health nurse, who has become like family, and I told her the concern of my husband always seem to go in for being septic. She mentioned to speak to our primary care physician about an every day anti-biotic, of which one of her pt's take. I mentioned it to our PCP, and he wasn't keen on the idea. I never got to find out why, because we were interrupted for him to see another pt. who was being discharged. I do the usual, go home, look up the symptoms of C-diff and what it entails. I find out that people can usually get C-diff while being on anti-biotics or have just come off anti-biotics. the report also states: Taking antibiotics can kill these "good" bacteria, allowing C. difficile to multiply and release toxins that damage the cells lining the intestinal wall,

causing diarrhea and other symptons. C-difficile is also found on the surface of objects (eg, door knobs, counters, etc..Therefore, handwashing is so critical, I now know, when I'm feeling like the character of the TV show "MONK". My hands are so dried out, they've broken out so badly, it hurts. I finally had to get medcal attention for myself. Being a caregiver, what can I say, s____!!! Forgive me for saying that, I'm just frustrated. So right now, seeing a neurologist for follow-up is on the back-burner. I've been approached by my sister-in law about doing a cleansing on my husband, because of all the meds he's taking. I seriously feel his body is so filled with toxins--yet I'm not sure of trying to do the alternative medicine route of holistic healing!! Anyone have any advice, or suggestions??

Subject: not sure what to do!To: Neurosarcoidosis Date: Tuesday, January 12, 2010, 9:48 AM

hi my fellow sarkies , i was making breakfast and had an episode where my energy just leaves my right side. this has happened before and my speech was affected , but this time my speech did not come back! it is not slurred but more like a stutter that i never had!! so i went to the er and the doctors would not have a one on one phone call with my neurologist as instructed! so i had blood work (which came back normal) and left the hospital ! so here i sit having the same episodes and no answers. i feel like i am crying wolf but this stuff is REAL!!! I was instructed by docs in ny and cleveland clinic to go to the er ! any ideas of what i should do next? when i get an episode i can barely talk or walk ! i seriously need some advice ! does this happen to anyone else? i also get very sleepy when this happens! hope you can help me. i am going to cleveland clinic on the 18th of january but in the mean time dont know what to

do!

[Guest guest]

HI June,

I'm glad you spoke out. What a dear you are to be not only handling the medical care your husband needs, but also for being willing to educate yourself about what he is going through. As the one who has sarcoidosis, I can tell you firsthand that it generally takes forever to get our spouses onboard-- and yet it is the most powerful team we can have! Thank you!

Your husband would do very well taking Milk Thistle Capsules-- these will help his liver enormously! They are a natural detoxifier, and you can use Milk Thistle tea also. It will not interfer with any other meds he's on-- there is no drug interaction. An oncologist that was treating a friend of mine who had Hodgkins Lymphoma as a kid, and then liver cancer that metasized into systemic cancer as an adult, was told by him to use the MT. When she passed away, her liver was in great shape! The cancer had spread to her bones and heart-- and that is what took her from us.

The other thing he needs is a good probiotic. Liquid Acidophyllus is easy to take, and you can get capsules also. The amount of aciophylls in yoghurt isn't enough to help when we're on such a variety of drugs- so you really need a good multiple combo probiotic. A reputable health food store can help you on this.

With his body so compromised, you don't want to do a "cleanse." He'll end up in septic shock. So these two adjustments will help balance out his gut and liver-- and he'll be so much more comfortable.

As you know, hydration is a hard one to keep balanced, and any upset in his electrolytes is going to set him back, so if you can find something he likes to drink that isn't soda, alcohol, or caffeine-- he'd do well to make sure he gets plenty down. When you've been on huge amounts of antibiotics, men-- like women get systemic yeast (candidis) growing and that starts the entire cycle you've described. Men just don't have the itchies we get...

The probiotics will tame that monster very quickly!

I do hope this helps, and whatever we can do to help make this journey an easier one for the both of you-- let us know.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Mon, January 18, 2010 11:57:59 PMSubject: Re: not sure what to do!

Barbara

My heart really goes out to you! I've signed up with this supportive group, shortly after Oct. of last year. I feel bad cause I really haven't responded to anyone, though I do read the group's e-mails and birthday reminders. I've been so overwhelmed dealing with my husband who has the demon monster disease, that I've been off-line. The reason I'm responding to you because, I know the feeing of the medical staff, looking at me in the ER, each and everytime he is evac to the hospital. My husband has so many ailments besides the monster disease, it's like catch-22. He is now bed-ridden and paraplegic. What I'm dealing with at the moment is his decubits ulcer (bed-sore), near his coccyx area. We were blessed to have a great neurologist at the Mayo clinic in ville, who was referred to us by our local neurologist. My husband has been in the hospital 6 times last year, and just recently came out

again last week. The problem is, the main focus each time he's been in because of sepsis, whether it be euro-sepsis or a UTI infection. I'm so frustated ! My husband had to have a colostomy done (which has been a great help on my part, as far as cleaning him), which is why it was done because his wound near the buttocks area had a hard time healing. Any one familiarized with a wound vac? To make a long story short--the last time he was in, of which he stayed in the ER for 2 days before having a room, I always asked what is his diagnosis for being admitted? Of course, it's sepsis--but this last time, while I was in the room helping the nurse change his colostomy bag(mind you, it's been 2 days), his wound care dr. comes in, sees us changing his colosomy bag and just blurts out, looks like C-diff (Colostridium difficile), i want a culture done. Sure enough--the culture was positive. After concurring

with an infectionous disease dr., two additional anti-biotics are added on to his meds list. I discussed the situation with our home-health nurse, who has become like family, and I told her the concern of my husband always seem to go in for being septic. She mentioned to speak to our primary care physician about an every day anti-biotic, of which one of her pt's take. I mentioned it to our PCP, and he wasn't keen on the idea. I never got to find out why, because we were interrupted for him to see another pt. who was being discharged. I do the usual, go home, look up the symptoms of C-diff and what it entails. I find out that people can usually get C-diff while being on anti-biotics or have just come off anti-biotics. the report also states: Taking antibiotics can kill these "good" bacteria, allowing C. difficile to multiply and release toxins that damage the cells lining the intestinal wall,

causing diarrhea and other symptons. C-difficile is also found on the surface of objects (eg, door knobs, counters, etc..Therefore, handwashing is so critical, I now know, when I'm feeling like the character of the TV show "MONK". My hands are so dried out, they've broken out so badly, it hurts. I finally had to get medcal attention for myself. Being a caregiver, what can I say, s____!!! Forgive me for saying that, I'm just frustrated. So right now, seeing a neurologist for follow-up is on the back-burner. I've been approached by my sister-in law about doing a cleansing on my husband, because of all the meds he's taking. I seriously feel his body is so filled with toxins--yet I'm not sure of trying to do the alternative medicine route of holistic healing!! Anyone have any advice, or suggestions? ?

On Tue, 1/12/10, BarbaraW <beautybarnweber@ yahoo.com> wrote:

From: BarbaraW <beautybarnweber@ yahoo.com>Subject: not sure what to do!To: Neurosarcoidosis@ yahoogroups. comDate: Tuesday, January 12, 2010, 9:48 AM

hi my fellow sarkies , i was making breakfast and had an episode where my energy just leaves my right side. this has happened before and my speech was affected , but this time my speech did not come back! it is not slurred but more like a stutter that i never had!! so i went to the er and the doctors would not have a one on one phone call with my neurologist as instructed! so i had blood work (which came back normal) and left the hospital ! so here i sit having the same episodes and no answers. i feel like i am crying wolf but this stuff is REAL!!! I was instructed by docs in ny and cleveland clinic to go to the er ! any ideas of what i should do next? when i get an episode i can barely talk or walk ! i seriously need some advice ! does this happen to anyone else? i also get very sleepy when this happens! hope you can help me. i am going to cleveland clinic on the 18th of january but in the mean time dont know what to

do!