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Hi ,

It is so sad that a 10yo child has sarcoidosis-- and yes, this sounds like the neuropathy that goes along with it.

What kind of meds do his doctors have him on? Are you here in the States? Do you have a pediatrician that knows about sarcoidosis taking care of him?

My heart goes out to the both of you, I can't imagine the challenges that as a mom you are going through. I do hope that he has a good Rheumatologist and Neurologist to help with this. I know they treat kids with the BRM's-- Biological Response Modifiers - Enbrel, Humira and Remicade.

I think one of the biggest challenges is that even though this is an autoimmune disease, the immune system attacking itself- even the healthy tissues are seen as something to attack, that we have to keep in mind that since our immune systems are overactive, the immunosuppressants are bringing them back into a "normal" stasis-- and not adopt the mindset that the immune system is going to be blown out entirely.

I do hope that you will contact Om Sharma, M.D. at USC- LA-- and get his opinion. He is great about answering emails, and can be reached at www.sarcoidosissharma.com. He may have you get your son's doctors to email him with their questions, but you will get a response.

Most sincerely,

Tracie

NS Co-owner/moderator

pain question

My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last night just for that.He says, "when did I burn my arm?" There is no discoloration. Does this sound like sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin pain. Thanks for any answers,

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Hi , That is just how I explain my nerve pain, like it's burning, so it could be nerve pain, although it may not be NS, what tests are they doing on him. Marla

My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has

recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he

feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last

night just for that.

He says, " when did I burn my arm? " There is no discoloration. Does this sound like

sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid

stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does

have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin

pain. Thanks for any answers,

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Please do as Tracie suggested. I think these immune suppressant drugs, or TNF factor drugs should be started. How did your children get this? I spoke with a GI doctor yesterday and he said sarcoidosis is being seen daily by many people.I assumed it took years to progress, are you as the mother sick with this, so confused, what are of country are you in.

Subject: Re: pain questionTo: Neurosarcoidosis Date: Thursday, September 18, 2008, 4:25 PM

Hi ,

It is so sad that a 10yo child has sarcoidosis- - and yes, this sounds like the neuropathy that goes along with it.

What kind of meds do his doctors have him on? Are you here in the States? Do you have a pediatrician that knows about sarcoidosis taking care of him?

My heart goes out to the both of you, I can't imagine the challenges that as a mom you are going through. I do hope that he has a good Rheumatologist and Neurologist to help with this. I know they treat kids with the BRM's-- Biological Response Modifiers - Enbrel, Humira and Remicade.

I think one of the biggest challenges is that even though this is an autoimmune disease, the immune system attacking itself- even the healthy tissues are seen as something to attack, that we have to keep in mind that since our immune systems are overactive, the immunosuppressants are bringing them back into a "normal" stasis-- and not adopt the mindset that the immune system is going to be blown out entirely.

I do hope that you will contact Om Sharma, M.D. at USC- LA-- and get his opinion. He is great about answering emails, and can be reached at www.sarcoidosisshar ma.com. He may have you get your son's doctors to email him with their questions, but you will get a response.

Most sincerely,

Tracie

NS Co-owner/moderator

pain question

My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last night just for that.He says, "when did I burn my arm?" There is no discoloration. Does this sound like sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin pain. Thanks for any answers,

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,

Bless his little heart. I have only hear of one other child that had NS

and she lived in the north and was 5. I can't imagine having to try to

help him with this disease.

I have a lot of burning pain - mostly in the tops of my feet and

sometimes it does feel as if I had burned myself. It sounds like nerve

pain and you migh twant to talk to his doc about one of the meds

specifically for nerve pain. Maybe that will help him some.

I will say prayers for you guys and I know the gang here will help you

as much as possible.

Terri G.

>

> My son (10 in a few weeks) may have sarcoid... still waiting on

definitive dx. He has

> recently developed a new type of pain. On his arm (inside part) from

elbow to wrist, he

> feels real pain. He thinks he has burnt himslef (he hasn't) and needed

pain meds last

> night just for that.

>

> He says, " when did I burn my arm? " There is no discoloration. Does

this sound like

> sarcoid pain to anyone. I hate when he develops a new symptom. Most of

the sarcoid

> stuff has been neurological -- dizziness, loss of balance, loss of arm

strength... he does

> have pains but a lot are associated with his arthritis. (or headaches)

This is definitely skin

> pain. Thanks for any answers,

>

>

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Thanks to all who have answered... to answer some of your questions...

We are in the UK. No one has any experience of this disease in children here.

We are not

sure what we are living with... the last 12 months have been awful.

He was dx with arthritis in Sept. last year. But as well as swollen, stiff

joints and the pain

he began to develop balance and walking problems. he had constant head and

abdominal

pain and was in a wheelchair by Feb. He had trouble sitting and then couldn't

use his

hands/arms.

The worst thing, the absolute worst thing, worse than everything else was being

told that

it was psychosomatic... I mean, he had odd facial swellings, became incontinent,

had 4 - 5

nosebleeds a day, had pins and needles in his feet and hands and developed a

hand

tremor. Still it was just psychological.

I thought he was going to die and all I did day after day was lie in bed with

him and hold

his hands. we were in and out of hospital... he missed almost a whole year of

school.

Then, just a fluke, someone tested his serum ACE level and that was very

abnormal, then

they did brainstem auditory evoked response tests... the doctor said the tests

were so

abnormal they would need to be repeated. Same result a week later, also his

parotid

glands were abnormal and his amylase too high.

So finally they began to listen. In the meantime, his arthritis was being

treated with

steroids and methotrexate.. so all his symptoms got better.

Now they have taken him off everything... they want to see what happens I guess

and are

hoping the swellings come back so they can biopsy them and look for granulomas.

I live each day worried, watching him like a hawk for symptoms. So far, his

arthritis seems

to be in remission but his other odd symptoms are creeping back. More and more

nosebleeds, tummy aches, now this burning pain.

I have no idea how or why he would have this disease but I do know we need a

good

doctor so if anyone else in UK is out there, please let me know,

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,

Please email Dr. Sharma. Even though he is in Los Angeles, California. He may be able to stear you towards someone in the UK that does know about NS. On his site, he also lists alot of MD's that specialize in sarc in all different countries.

Whatever we can do to help-- if you have more questions, ask away. We will be glad to help research and find some answers - or at least some articles you can take with you to educate his MD's.

There are so many facets to this disease, and so few answers. Know that you have our hearts and prayers with you and your son.

Most sincerely,

Tracie

NS Co-owner/moderator

Re: pain question

Thanks to all who have answered... to answer some of your questions...We are in the UK. No one has any experience of this disease in children here. We are not sure what we are living with... the last 12 months have been awful.He was dx with arthritis in Sept. last year. But as well as swollen, stiff joints and the pain he began to develop balance and walking problems. he had constant head and abdominal pain and was in a wheelchair by Feb. He had trouble sitting and then couldn't use his hands/arms.The worst thing, the absolute worst thing, worse than everything else was being told that it was psychosomatic. .. I mean, he had odd facial swellings, became incontinent, had 4 - 5 nosebleeds a day, had pins and needles in his feet and hands and developed a hand tremor. Still it was just psychological.I thought he was going to die and all I did day after day was lie in bed with him and hold his

hands. we were in and out of hospital... he missed almost a whole year of school.Then, just a fluke, someone tested his serum ACE level and that was very abnormal, then they did brainstem auditory evoked response tests... the doctor said the tests were so abnormal they would need to be repeated. Same result a week later, also his parotid glands were abnormal and his amylase too high.So finally they began to listen. In the meantime, his arthritis was being treated with steroids and methotrexate. . so all his symptoms got better.Now they have taken him off everything.. . they want to see what happens I guess and are hoping the swellings come back so they can biopsy them and look for granulomas.I live each day worried, watching him like a hawk for symptoms. So far, his arthritis seems to be in remission but his other odd symptoms are creeping back. More and more nosebleeds, tummy aches, now this

burning pain.I have no idea how or why he would have this disease but I do know we need a good doctor so if anyone else in UK is out there, please let me know,

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>

>

>

>that sounds like sarc pain. during the cold season my hands and arms

start to ache. I soak them in hot water and take a vicodin. what's so

frustrating is we can have the same symptoms yet need different

treatmants. hang in there. i got your back. don't hesitate to get in

contact if you want to VENT. Gob Bless.

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