Recently Diagnosed and terrified!

[Guest guest]

Hi Im a 38 year old mum of 2 and was diasnosed finally after 5 months

with Neuro Sarcoid.

I had had about a year of having my left arm " float " off on its own

and ave a numbness yet was able to feel it. On a couple of

occassions my mouth drooped and I couldn't speak. This was

brief.....seconds worth. Then my hearing started to go strange. It

was as though I had my hands over my ears.....that was how I felt and

everyone seemed so far away audibly.....and I felt like I was looking

in...it all seemed unreal.

I had an odd turn in October when my arm floated bt my leg was also

affected and I fell over. Then in November, I collapsed and was

taken to hospital. They finally after 5 weeks dianosed a stroke but

my neurorologist wasn't happy with the final dianosis and has been

through since. Then 2 weeks ago they finally diagnosed.

I had 3000mg of methylprednisolene over 3 days whilst in hospital and

am on 30mg daily prednisolene and 2.5mg of weekly methertrexate which

is increasing every 2 weeks.. but Am terrified this is how I will

feel forever. I had a good week last week and didn't feel dizzy or

off balanace, but have gone downhill since. Im struggling and would

love to hear from others with their experiences and hopefully (!!)

success stories!!!! x

[Guest guest]

Hi ,

You've come to the right place to talk with others about their journey with NS.

We're over 430+ members strong, and we are all in this together.

I see you started with the stroke, and that is one of the problems with sarcoidosis. Strokes and TIA's (transient ischemic attacks) mini strokes that are a warning of a big one on the way-- need immediate attention.

With the stuff going on with your arms and legs, I would definately make sure that when any of those symptoms come on, you get into the Emergency Room quickly. If a stroke does happen, they can administer a drug called TPA-- and if done within the first 3 hrs of symptoms, it breaks up the blood clots and then the stroke does very little damage.

You said that they've put you on prednisone and methotrexate. These are a good place to start. With NS, it's better to be on Methotrexate and one of the steroid sparing immunosupressants-- because you will need an immunosupressant long term-- or shall I say life term.

The progression of the sarcoidosis can be slowed, and it can go into remission, but you will always have sarcoidosis. Stress adds to the challenges of any auto-immune disease, so it's best to try to balance the stress in your life. Meditation, guided imagery, balanced diets, getting plenty of rest-- listening to your body and pacing yourself is so very important.

In our ARCHIVES and LINKS (scroll down, the addresses are at the bottom of each email from the group) is many articles and posts on sarcoidosis.

We will be glad to help you understand this disease. No question is to dumb to ask-- so don't worry-- we've all been newly diagnosed. Some of us many, many years ago. (I've had sarc for 17 yrs--7 yrs of it being systemic.) It does change how we do things, but it is workable.

Take care,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi

Although I was not diagnosed at the time I have had similar problems since I was 32 with 2 young children. I was treated at the time with cortisone and have remained on a small dose ever since (although this does not fit with current thinking). I have had good times and bad times but have managed to bring up the 2 children and hold down a demanding job. Sometimes I feel I can't work at all and other times I can't stop working. It can be tough and frightening but I feel the best advice is to accept that you have a problem and go with it. Try to be positive in the 'down' times as things will get better again.

I am now 66 and still going strong. I am fortunate to have a husband who understands and cares although I am sure I drive him round the bend sometimes. I used to try to hide how I was feeling but now I just say very matter of factly if I can "it is a bad day today so please try to bear with me". My two girls also accepted from a very early age that mummy has bad days.

My thoughts are with you

Pat

[Guest guest]

Pat Thanks for your lovely message....somewhat encouraging. I honestly feel on some days that will be get the better of me. I have found that although only 5 months into this horrible "illness", "condition" or whatever it is they call it, that I do have good days and bad. Last week I felt on top of the world! I cleaned my whole kitchen through from top to bottom and then the next day shifted loads of rubbish from my garage....I felt normal. But then on Friday last week, I had a sudden knowing that I was going to go downhill and have been there since. Its horrible. My girls are lovely and as you say, they now know that mummy feels almost permenently tired and her arm hurts a lot of the time and that I have a constant dizzy or unbalanced feeling.....they are amazing.....they keep me going. You are a bit of an

inspiration.......I can't begin to think about going back to work though I desparately want to.....financially primarily but I want to use my brain again, mix socially, etc. 66.......how fantastic.....but a long time to live with a condition. I hope I live to a lovely age too. Thanks so much for your lovely words....I live in Egland....not sure where you live but thanks so much. .patrianh@... wrote: Hi Although I was not diagnosed at the time I have had similar problems since I was 32 with 2 young children. I was treated at the time with cortisone and have remained on a small dose ever since (although this does not fit with current thinking). I have had good times and bad times but have managed to bring up the 2 children and hold down a demanding job. Sometimes I feel I can't work at all and other times I can't stop working. It can be tough and frightening but I feel the best advice is to accept that you have a problem and go with it. Try to be positive in the 'down' times as things will get better again. I am now 66 and still going strong. I am fortunate to have a husband who understands and cares although I am sure I drive him round the bend sometimes. I used to try to hide how I was feeling but now I just say very matter of factly if I can "it

is a bad day today so please try to bear with me". My two girls also accepted from a very early age that mummy has bad days. My thoughts are with you Pat

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[Guest guest]

Hi

I live in Nantwich in Cheshire. As most on this site are from America it is nice to know someone from England.

You just hang on in there, that bad patch will go but I think it is better to try to relax into it and try to accept. I have tried getting angry and upset but neither work for me.

I too get patches where I am full of energy and work like mad and feel normal for a time. In my younger days I had much longer periods of feeling good so hopefully you too will gradually have longer periods. If you want to get in touch on bad days please send me a personal e-mail to patrianh@... and I will give you my phone number.

Take care

Pat

[Guest guest]

>

> Hi Im a 38 year old mum of 2 and was diasnosed finally after 5 months

> with Neuro Sarcoid.

>

> I had had about a year of having my left arm " float " off on its own

> and ave a numbness yet was able to feel it. On a couple of

> occassions my mouth drooped and I couldn't speak. This was

> brief.....seconds worth. Then my hearing started to go strange. It

> was as though I had my hands over my ears.....that was how I felt and

> everyone seemed so far away audibly.....and I felt like I was looking

> in...it all seemed unreal.

> I had an odd turn in October when my arm floated bt my leg was also

> affected and I fell over. Then in November, I collapsed and was

> taken to hospital. They finally after 5 weeks dianosed a stroke but

> my neurorologist wasn't happy with the final dianosis and has been

> through since. Then 2 weeks ago they finally diagnosed.

> I had 3000mg of methylprednisolene over 3 days whilst in hospital and

> am on 30mg daily prednisolene and 2.5mg of weekly methertrexate which

> is increasing every 2 weeks.. but Am terrified this is how I will

> feel forever. I had a good week last week and didn't feel dizzy or

> off balanace, but have gone downhill since. Im struggling and would

> love to hear from others with their experiences and hopefully (!!)

> success stories!!!! x

>Dear X

My name is Kathy . I eas Diagnosed in 2001 just 2 months before 9/1. I also

had

Hydro-Sphalis (water-on-the-brain), meningitis, cervical cancer and a gull

bladder attack,

all with-in a 3 month peroid. On top of all that, my mom died in December. That

was a

very bad year! I Lost the ability to stand and walk with-in a year and have had

occasional

bouts of dizziness and loss of balance-even while sitting. I also suffer with

unexplained

intence pain in my joints. The sensation of being numb yet still able to feel

pain or

discomfort persists to this day. I beliive my improvement is the result of good

care by my

nephew, great physical theraphy, excellent care from my doctors and going back

to work.

(I work from home). get a dependable person to help you when you need help, and

take

life one day at a time. You can live well with this, you just have to belive.

KATHY