Re: new to this disease

[Guest guest]

Welcome to our group... sorry we must meet this way, but we are a very caring and loving family.

I can speak from my experience on steroids and it was not pleasent. I was on very high doses for 5 years and I became toxic. So the Neuro I found at the time got me off them asap and put me on Imuran,Plaquinel and several other drugs for pain.. such as the duragestic patch and oxycontin, than for break through pain dilaudid.

I have been on the Imuran and Plaquniel for just about 8 years and it has helped. I still do end up going into the hospital at times for IV steriods and trips to the ER for pain shots.

To answer your other question on how it affects my marriage well it is very stressful, we both are 41 and have 2 kids between us. 19 & 5 . I also attend college part-time. but I am on SSD so I do not work.

The thing to remember is your husband needs your support and it will get very ugly sometimes, this illness is not nice. But when you feel stressed out seek help do not take it out on him, remember he did not sign up for this and cannot help being so sick.

How was your husband dxd? biopsy , spinal tap, ect???

I had both and countless MRI"S and other blood tests.

Welcome to our group again and I hope you find the support you are searching for.

Many blessings and hugs and a pain free day

Hey everyone, my husband just got diagnosed with neurosarcoidosis last week. Of course, our neurologist spent a lot of time going over the severe side effects of taking the high doses of prednisone, but I really want to hear how others & their spouses are dealing with this same thing. He has it in his hypothalamus, which I've heard is a rare area, so I just haven't found any information out there. Any information would be appreciated. The side effects that they talked about him having with the medication seem to be right in line with the symptoms that he was experiencing that lead us to go to the doctors in the first place-weight gain, severe irritability ,diabetes symptoms, etc. I already have seen our marriage be affected by this & it hurts so much. He & I are both in our 20's & have only been married for a year, so this has really tested us.

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[Guest guest]

Hi

I was diagnosed in 2006. It took about a month to decide what I had. MRI, Cat scan, Lumbar punctures, x-rays, biopsies blood draw. No one has had that around here. I am the first and only right now. I am on prednisone, plaquinel and Methotrexate and have been for the whole time. I had the weight gain, pumpkin face, loss of hair and weakness. I am wheel chair bound. I walk a little but I tire so fast.

Jim, my love, and I were married at one time. We divorced for 9 years and about 4 months before I got NS we got back together. He has never left my side while in the hospital and the nursing home. He is still here with me. I know it is hard on him a lot of the time. He gives me so much support, lets me cry on his shoulder and does things for me I can't. What do I give him? I complain, I don't go out as much as I should and forever cry "why me?" He says "why not you" He keeps me grounded. I am a very lucky person to have such an understanding man. Like said, It will be hard at times. He will make you feel like you would love to just walk away. I know my Jim does at times. I feel bad for putting him through hell at times. I don't know what I would do without him. Oh I know I could on alone but I don't want to. I need him and I do believe he needs me.

Hang in there and trust in your love for each other.

I am sorry if I sounded like I was preaching, I just wrote how I feel.

I truly am sorry you had to meet us this way but here you get support, understanding, and even a few laughs at times.

My prayers are with you for strength and understanding.

Jackie

New to this Disease

Hey everyone, my husband just got diagnosed with neurosarcoidosis last week. Of course, our neurologist spent a lot of time going over the severe side effects of taking the high doses of prednisone, but I really want to hear how others & their spouses are dealing with this same thing. He has it in his hypothalamus, which I've heard is a rare area, so I just haven't found any information out there. Any information would be appreciated. The side effects that they talked about him having with the medication seem to be right in line with the symptoms that he was experiencing that lead us to go to the doctors in the first place-weight gain, severe irritability ,diabetes symptoms, etc. I already have seen our marriage be affected by this & it hurts so much. He & I are both in our 20's & have only been married for a year, so this has really tested us.

[Guest guest]

that's unconditional love

Subject: Re: New to this DiseaseTo: Neurosarcoidosis Date: Monday, February 9, 2009, 12:57 AM

Hi

I was diagnosed in 2006. It took about a month to decide what I had. MRI, Cat scan, Lumbar punctures, x-rays, biopsies blood draw. No one has had that around here. I am the first and only right now. I am on prednisone, plaquinel and Methotrexate and have been for the whole time. I had the weight gain, pumpkin face, loss of hair and weakness. I am wheel chair bound. I walk a little but I tire so fast.

Jim, my love, and I were married at one time. We divorced for 9 years and about 4 months before I got NS we got back together. He has never left my side while in the hospital and the nursing home. He is still here with me. I know it is hard on him a lot of the time. He gives me so much support, lets me cry on his shoulder and does things for me I can't. What do I give him? I complain, I don't go out as much as I should and forever cry "why me?" He says "why not you" He keeps me grounded. I am a very lucky person to have such an understanding man. Like said, It will be hard at times. He will make you feel like you would love to just walk away. I know my Jim does at times. I feel bad for putting him through hell at times. I don't know what I would do without him. Oh I know I could on alone but I don't want

to. I need him and I do believe he needs me.

Hang in there and trust in your love for each other.

I am sorry if I sounded like I was preaching, I just wrote how I feel.

I truly am sorry you had to meet us this way but here you get support, understanding, and even a few laughs at times.

My prayers are with you for strength and understanding.

Jackie

New to this Disease

Hey everyone, my husband just got diagnosed with neurosarcoidosis last week. Of course, our neurologist spent a lot of time going over the severe side effects of taking the high doses of prednisone, but I really want to hear how others & their spouses are dealing with this same thing. He has it in his hypothalamus, which I've heard is a rare area, so I just haven't found any information out there. Any information would be appreciated. The side effects that they talked about him having with the medication seem to be right in line with the symptoms that he was experiencing that lead us to go to the doctors in the first place-weight gain, severe irritability ,diabetes symptoms, etc. I already have seen our marriage be affected by this & it hurts so much. He & I are both in our 20's & have only been married for a year, so this has really tested

us.

[Guest guest]

Yes it is. thank you for noticing.

Jackie

New to this Disease

Hey everyone, my husband just got diagnosed with neurosarcoidosis last week. Of course, our neurologist spent a lot of time going over the severe side effects of taking the high doses of prednisone, but I really want to hear how others & their spouses are dealing with this same thing. He has it in his hypothalamus, which I've heard is a rare area, so I just haven't found any information out there. Any information would be appreciated. The side effects that they talked about him having with the medication seem to be right in line with the symptoms that he was experiencing that lead us to go to the doctors in the first place-weight gain, severe irritability ,diabetes symptoms, etc. I already have seen our marriage be affected by this & it hurts so much. He & I are both in our 20's & have only been married for a year, so this has really tested us.

[Guest guest]

Thank you , Royce, Jackie, Marla, Rose & Ann for all

responding to my message. It means a lot to find support like this.

We have only been dealing with this for a few short months, but I

already feel the stress(not to mention I work in Sales, so I am

always stressed anyway). I just want to make sure that I have an

outlet & never let my stress become anger towards him.

My husband, Nate, first had symptoms around 8 months ago now. It

started with his sex drive decreasing until it slowly just stopped,

then he gained an unexpected 50lbs even though he works out & eats

well. Then he started to drink so much water that he had to plan his

days around where he could go to the bathroom & wake up numerous

times. I FINALLY convinced him that he had to go to the doctor. So,

this October he met with our PCP who knew that once he started to

list his symptoms, that there was something wrong with his Pituitary

Gland & wanted to have an MRI done. In the meantime, she referred

Nate to an Endocrinologist because his testosterone levels were

extremely low & he had hypothyroidism after doing various blood

tests. Nate was put on Synthroid & testosterone to help his side

effects until we knew further was going on. Two days after the

initial MRI, they told Nate that he had a tumor in his brain, but at

this point, we did not know what kind. They had already scheduled

him in to meet an Neurologist the very next day. We met with our

first neurologist, Dr. Garnder of UPMC Presbyterian(excellent). He

spoke to us about how the tumor was oddly located within his

hypothalamus against his optic nerve. This was why all his hormone

regulators shut down causing diabetes insipidis, fatigue, weight

gain, male PMS, and impotency. No matter what type of tumor it was,

there was no way they would be able to go into his brain to remove it-

it is just too risky of an area. Obviously we needed more tests run

to determine the type of tumor. When he couldn't get Nate scheduled

for a Spinal Tap that day, he did it himself right away & then sent

us down to radiology for a full body CT to make sure that there were

no cells anywhere else. Everything had come back normal except his

Spinal Tap. It had shown Germ Cells, which made them conclude he has

a Germ Cell tumor. Dr. Gardner admitted that Nate was a very unusual

case, so they were making sure to bring in as many specialists and

eyes as possible to ensure the correct diagnosis. At that point we

were sent to the Hillman Cancer Center to speak about possible cancer

treatments & instead of getting that,this dr. didn't feel comfortable

enough recommending treatment based off of one Spinal Tap result &

thought that it might be a low-grade astrocyte & all I can think

is " Oh Hell " . At this point, all of his doctors decided to send

Nate to a neurosurgeon that specializes in gamma ray radiation. (Spot

treatment radiation) because his " tumor " looked like a pea. They

decided they had no other alternative than to do the biopsy to

determine what this was, even though it was going to be risky. When

we went in for the biopsy, they had told us that if everything goes

as planned, then they might start the radiation treatment that day.

Well after he came out of surgery with flying colors, I could exhale,

but also we found out that the " tumor " had changed shapes and was

spread out within his brain tissue. What the heck did that mean?? He

was discharged from the hospital the next day after a few more blood

tests and another spinal tap without any sort of idea of what was

going on & we did not find out for another week that he had brain

inflammation as was put to him on the phone. We got a bit more of a

reality check when we went into the office to meet with a new

neurologist that specializes in MS and Sarchoidosis-Nate's new doctor

for the next 5 years. One of the first things out of his mouth

was, " You have life insurance & disability I hope " . Really?!?

At this point, so early on, I worry more about his mental health than

his physical health. I know that his self-esteem has taken a huge

hit. Going from being 27, athletic built, partying with friends &

enjoying our first year of marriage as a couple to 27, with 50 extra

lbs, falling asleep while going out with friends, becoming a " drag "

in his mind to be around has been extremely hard for him. We will

see how things go as he is on all his medications longer.

For anyone out there that has had problems with doctors, I most

certainly will always recommend the UPMC system in Pittsburgh.

Pittsburgh is a mega-center for excellent hospitals & specialists.

Nate and I are very fortunate that we grew up in this city & have

wonderful health care. At no point, were his symptoms questioned or

not taken seriously. We always heard any results as soon as the

doctors had them. The various doctors that worked with him, worked

as a team never choosing pride over his health. His case was a

regular discussion during their meetings & he was always referred to

the best in any of the specialties. Not only that, but Nate never

had to schedule any of his own appointments & was regularly squeezed

into doctor's schedules immediately. We haven't donated large sums

of money to any of their research & have no clout in their world, yet

he was treated with top-notch respect and care. If you do not live in

an area with the best health care, try here. It has been the best

experience that it could possibly have been.

[Guest guest]

>

Thank u Barb & Marla,

It helps to know that there is someone out there that understands

what I'm going through..currently I am not on any med's for

sarcoidosis..I'm on meds for pain..which don't seem to help. I try a

new med and within 1 month its not working...so my rhuematogolist

suggested that i flipflop with my meds..when one stops working try

the other ones..i haven't had a spinal tap yet..b/c I have scoliosis

with a harrington rod implant..i'm kinda afraid..but u guys do give

me hope..if u could share with me any websites were I can get more

info about this disease I would appreciate it...Thanks again