Hello and presentation

[Guest guest]

Hello

By way of an introduction I'll give a brief backround of my current

situation.

Last December I had a grand mal seizure in the middle of the night.

The MRI/EEG indicated a shadow & low-middle frequency " noise " on the

left side of the brain, but the Neurologist (in Sweden, where I

reside) was unable to provide a diagnosis ( " 1 seizure is no seizure "

he said).

In July my ankles swelled up and caused me considerable pain. After

about a week I dropped by the hospital to investigate and within a

few hours they diagnosed me as having Lofgrens syndrome (acute

sarcoidosis) based on my chest Xrays.

Since July I've been under the care of a lung specialist as well as

a reumotologist who are investigating " both typical and atypical "

indications of sarcoidosis on my chest Xrays (I'm having a tissue

sample taken tomorrow). My lymph nodes are more enlarged than

expected, and the granulation in my lungs is more widespread than it

should be. The lung specialist also wanted to consult with my

neurologist to see if there may be any connection to the grand mal.

-- Then, last night, I had another grand mal seizure. This time the

(new) neurologist had the benefit of knowing that I have sarcoidosis

and persuing the possibility that it may be affecting my brain.

I've been put on an anti-epilepsi drug to minimise the risk of

further seizures and am now scheduled for a new MRI and a spinal

fluid test.

So this is all new to me - and I have to say that reading up on this

topic on google has put me on edge. I'm interpreting the literature

as saying that the prognosis for recovery is not very good and that

there's even a measurable mortality risk involved. On the other

hand I know it's usually not a great idea for a common layman to try

and interpret medical literature without guidance as that can easily

lead to paranoia.

But I'm glad that this site exists and that there's a support

network for learning and sharing information!

[Guest guest]

Omg Darian, welcome to the group.. I'm sorry that you had to find us

but since you are sick, I'm glad you did.. We don't have all the

answers as I really don't thing no one has, but we are here to help

support you and be a part of a sounding board if you need someone to

talk to or rant at, which some of us do that rather well.. lol It

sounds like your doctors are on top of things which most times isn't

the case here in the states.

Feel free to join in, if you have questions ask, if you know the

answers please share..

Hugs,

>

> Hello

>

> By way of an introduction I'll give a brief backround of my

current

> situation.

>

> Last December I had a grand mal seizure in the middle of the

night.

> The MRI/EEG indicated a shadow & low-middle frequency " noise " on

the

> left side of the brain, but the Neurologist (in Sweden, where I

> reside) was unable to provide a diagnosis ( " 1 seizure is no

seizure "

> he said).

>

> In July my ankles swelled up and caused me considerable pain.

After

> about a week I dropped by the hospital to investigate and within a

> few hours they diagnosed me as having Lofgrens syndrome (acute

> sarcoidosis) based on my chest Xrays.

>

> Since July I've been under the care of a lung specialist as well

as

> a reumotologist who are investigating " both typical and atypical "

> indications of sarcoidosis on my chest Xrays (I'm having a tissue

> sample taken tomorrow). My lymph nodes are more enlarged than

> expected, and the granulation in my lungs is more widespread than

it

> should be. The lung specialist also wanted to consult with my

> neurologist to see if there may be any connection to the grand mal.

>

> -- Then, last night, I had another grand mal seizure. This time

the

> (new) neurologist had the benefit of knowing that I have

sarcoidosis

> and persuing the possibility that it may be affecting my brain.

> I've been put on an anti-epilepsi drug to minimise the risk of

> further seizures and am now scheduled for a new MRI and a spinal

> fluid test.

>

> So this is all new to me - and I have to say that reading up on

this

> topic on google has put me on edge. I'm interpreting the

literature

> as saying that the prognosis for recovery is not very good and

that

> there's even a measurable mortality risk involved. On the other

> hand I know it's usually not a great idea for a common layman to

try

> and interpret medical literature without guidance as that can

easily

> lead to paranoia.

>

> But I'm glad that this site exists and that there's a support

> network for learning and sharing information!

>

[Guest guest]

Hi Darian,

I'm glad you found us. In our LINKS and ARCHIVES we have numerous sites and articles on NS and the ways it can effect us systemically.

Your story is so much like many of ours. at least your MD's are looking at NS instead of playing it's all in your head games. This is good.

I see where you've done the prednisone thing-- and that's great- but they do know now that if you have sarc in more than one system, all you'll do is mask the symptoms-- and it's still spreading in your body. The chances of it coming back when we've been on long-term prednisone is very high.

One of the things that i've found most helpful is a combination of immunosuppresants. Imuran, Arava, Methotrexate, Plaquenil all have shown to be helpful-- and slow the progression. WWW.ARTHRITIS.ORG has a great drug booklet, and explains the different classes of immunosupressants and BRM's, and such. It is well worth taking the time to read up-- that way you will have some idea of what the MD's are suggesting in the way of treatment.

In just the last month, I've posted a site from "Epilepsy" and it explains alot about the seizures of NS. I know it's hard when our pituatary and hypothalmus get involved-- and then when we have been on high dose pred-- the adrenals are blown out--- so all those hormones are getting some really bad signals. No wonder we feel like crap.

anyway, there are some answers- and by learning about this disease-- you'll find yourself empowered and able to help make better decisions in your healthcare.

Welcome to the gang,

Tracie

NS co-owner/moderator

[Guest guest]

Thanks Tracie and Theresa for your replies.

Well, I had the bronchioskopi (sp??) yesterday, and in truth - not

so bad, despite the fact that the lung doctor said she was taking

samples a little " further out " than normal from my lungs...

I was a little " out of it " as I went in for the procedure, but I

believe she said to me that she had heard back from Neurology and

that they did *not* think that my brain MRI from last December

looked typically neurosarcoidosis - though I am scheduled for a

second MRI in 2 months to compare.

In the meantime they've got me on Hermolepsin (anti-epileptic

prescribed by the neurologist) and Orudis (anti-inflammatory

prescribed by the reumotologist).

When my ankles had swollen up this past summer they put me on a 3

week course of Prednisolon - starting at 15mg and dropping to 10 and

then 5 with each week... but that's about all I've had by way of

cortisoids. They worked wonders in getting the ankles back in

shape, but I'm pretty sure that they also gave me a dose of the

blues at the same time.

[Guest guest]

she said to me that she had heard back from Neurology and

that they did *not* think that my brain MRI from last December

looked typically neurosarcoidosis - though I am scheduled for a

second MRI in 2 months to compare.

The problem is that NS does not look "typical". It may not even show up in the MRI at all. If it's a vasculitis (swelling of the blood vessels) then it's not going to present as plaques or white spots on the MRI.

NS is a diagnosis of exclusion. when they've ruled out everything else-- Lupus, MS, Rheumatoid Arthritis, etc-- then we're left with NS.

One of the best tests is ANCA which is a protein in the blood. If there is too much of this protein, along with TNF A & B-- again more proteins in the blood-- then they will at least know that you have significant inflammation somewhere- or everywhere.

Check out www.sarcoidosissharma.com and the FSR-- Foundaton for sarcoidosis research-- and print out the articles there. Dr. Sharma has an excellant question/answer section that can help both you and your MD's.

Neuropsych testing is also an excellant test to show brain involvement, especially when we don't have "typical MRI's." Each test requires a specific part of the brain to function to complete the task-- and when it doesn't happen-- then they know what area is being effected. (There are many articles and info that I've posted on this in the ARCHIVES.) If you scroll down to the bottom section of this email and every email-- then you should find the address to that area of the group site.

Hope this helps,

Tracie

NS co-owner/moderator

[Guest guest]

Again, a big thank you for your time and attention with this.

Obviously it's a major distress when one starts reading about

morbidity and mortality rates with one's illness... bad enough to

have had two grand mal seizures and to have lost that sense

of " trust " in one's world (especially with a 5 month old child at

home, a new house in the suburbs, and a newly imposed 2 year driving

ban). Things are pretty upside-down at the moment.

I'm going to make sure I get thoroughly investigated, but barring a

solid respect for this disease and the possible ramifications, I

can't allow myself to get too far " down " over it. I need to keep in

a fighting spirit and to look at all my options for recovery and for

strengthening my body and soul.

Has any homeopathic or dietary discussion taken place on this topic?

I have a laymans understanding that vitamin D should be minimised -

that would be things like dairy and liver. Does anybody have any

other ideas?

I'm going to get involved with a homeopathic doctor to look at

holistic methods of boosting one's own immune system - the bigger

picture. Seems fair enough when one reads of all the horrible side-

effects of the medical drugs that are prescribed (especially in the

long term). I don't want to think that a future without sarcoidosis

might come at the expense of diabetes, liver cancer or a hip

replacement.

[Guest guest]

I would also be interested in any ideas people have about natural

remedies. I have always been a big believer in conventional medicine,

but the doctors are having such a hard time figuring out what disease

my son has; meanwhile, things keep getting worse. And once they

figure out a treatment, most of them (like high dose steroids) are

pretty dangerous in any event. We're not by any means giving up on

conventional medicines, but I sometimes wonder if it would make sense

just to do as much as we can with natural remedies while we wait for

the doctors to figure something out. Maybe we would even find

something that would cut down the amount of more toxic meds he

eventually will need to take.

As I think about the disease, though, it seems that natural anti-

inflammatories of some kind are more important than immune boosters.

Maybe even natural immune suppressants are needed? Anyone have any

thoughts on this? Or on other types of natural helps? Thanks, Debby

[Guest guest]

Darian, I'm sure you probably have already read, but be careful of to much sun & light exposure, it causes problems. Some of us don't have a major problem, some do. If I am in sunlight for even short periods of time, I get extremely ill. Glad to have you in our group, sorry you needed to be here...........Connie skwanderer wrote: Again, a big thank you for your time and attention with this.Obviously it's a major distress when one starts reading about

morbidity and mortality rates with one's illness... bad enough to have had two grand mal seizures and to have lost that sense of "trust" in one's world (especially with a 5 month old child at home, a new house in the suburbs, and a newly imposed 2 year driving ban). Things are pretty upside-down at the moment.I'm going to make sure I get thoroughly investigated, but barring a solid respect for this disease and the possible ramifications, I can't allow myself to get too far "down" over it. I need to keep in a fighting spirit and to look at all my options for recovery and for strengthening my body and soul.Has any homeopathic or dietary discussion taken place on this topic?I have a laymans understanding that vitamin D should be minimised - that would be things like dairy and liver. Does anybody have any other ideas?I'm going to get involved with a homeopathic doctor to look at holistic methods of

boosting one's own immune system - the bigger picture. Seems fair enough when one reads of all the horrible side-effects of the medical drugs that are prescribed (especially in the long term). I don't want to think that a future without sarcoidosis might come at the expense of diabetes, liver cancer or a hip replacement.

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