MRI Results

August 30, 2001

i would get a second opinion asap.<br>if you tell

a doctor that u r in pain, and he relies only on

the tests results, and ignores what u say- i wouldn't

even go back to him. <br><br>try to find a doctor who

WILL be interested to find out what is the origin of

your pain, and is willing to speak to you (not through

assistants).<br>usually doctors who do researches are more thorough than

others, but they are difficult to find. <br><br>an

arthroscopy IS a surgery, despite the fact that people tend

to think of it as a minor procedure. i can't see the

logic in doing it without even having a clue of what's

going on. make sure u first make all possible tests

before doing it. <br><br>always bare in mind that if

your knees hurt and deteriorate then something is

probably wrong- no matter what the doctor says. and

sometimes it takes months to find out what's

wrong.<br><br>-sigal

June 8, 2007

i was hoping you would get the answers you so need. so are you in limbo now.

is it yes or no. i hope hans headachs go away soon.. a

teenager he needs to be. take care of yourself if they think your crazy then

were all sailing in the same boat together chicks

**************************************

See what's free at http://www.aol.com.

June 8, 2007

I don't know if this will be of much help at all, but wanted to share our

experience with you in regards to our son Mason.

Our son Mason has had fevers since before his first birthday, and next

month will turn 7. He also suffers from migraines, with or without having

a fever flare. He also has lots of nausea and/or vomiting at times. In

addition he has numerous other symptoms such as joint pain, dizziness

caused by inflammation in his heart valves, extreme fatigue, mouth ulcers,

swollen lymph nodes most often in his neck, but has also had swollen lymph

nodes behind his knees and at his groin. He has a very hard time gaining

weight and the list goes on.

The NIH believes our son has Hyper IgD syndrome even though all tests to

date have come back negative. They also believe that somewhere down the

road he will have full blown Crohn's Disease. He also has CRMO, which

means his bones become inflamed and then they hollow out. More or less

his immune system is sooo far out of whack that it caused internal

inflammation in many places in his body ...

I definitely understand your frustration, especially if the medicine

doesn't seem to be working. Don't give up ... have faith and continue to

do your research on his symptoms and go back to your doctors and demand

more answers ... which sometimes requires more testing.

Has he ever had tests to rule out any of the periodic fever syndromes?

Also, he could be checked for GERD via an upper GI since he has so much

nausea, possibly be checked for inflammatory bowel diseases via a lower

scopy procedure, etc. Our son currently takes Prevacid for his extreme

nausea and it really helps, but its taken us sometime to get the right

medicine as he tried several others before this one. He also uses

suppositories for when his migraines cause the nausea, which really helps

during his headaches.

Take care.

Heidi

Mommy of Mason, almost 7 years old, (post sigmoid colon resection and

several other intestinal surgeries, CIAS1 gene mutation, possible HIDS,

CRMO, asthma, failure to thrive, but an otherwise very happy little man)

, 13 years old

Amber, 11 years old, asthmatic, anaphylaxis to Penicillin, and hearing loss

and happily married to of 14 years

burg, Pennsylvania USA

6. MRI RESULTS

Posted by: " carayod " bernard.carayol@... carayod

Fri Jun 8, 2007 1:29 am (PST)

Hi everyone

We had our scheduled appointment to discuss MRI results yesterday.

Unfortunately we are no more knowledgeable about what is going on with

our 12 year old son who has frequent bad headaches and a lot of nausea

and vomiting both during and outside of cycles. (He cycles without

fever since we had his tonsils out in Jan 2006) The small vessel

inflammation they were looking for in the context of possible Behcet's

disease was not present, which is reassuring. They did find a cyst

which they tell us is of no concern and which they say is not causing

his present symptoms. I think there was another family here who had a

similar finding. Could you please tell me what they told you about

the cyst?

So where do we go from here??? We are to continue a migraine

treatment for the next 3 months..........we are a little sceptical

about it but for the present don't really have any choice. (He has

been on it for a month and we certainly haven't had any very

noticeable results) He had a shocking episode with mouth ulcers++ and

more in his throat. I can't see that this has to do with

migraines......?? We may have 2 " monsters " but for the moment the

docs seem to be forgetting the one. We will keep you posted and

thanks for everyone's input. It really does help to know we are not

alone in this and not entirely crazy either although at times I

question even myself!

Fond regards

Debbie mum to Hans 12 ??

South of France

June 8, 2007

Debbi- Our son Nick (10) had an MRI after many headaches with and without the

fevers and they had found a small cyst which they concluded was not related to

the fevers or any of his headaches. We met with a nuerosurgeon at Hopkins Dr.

Ben Carson and he also concluded the same. Nick still continues to have very

bad headaches with the fevers and we manage them with over the counter

medication... motrin and tylenol. He was never put on any specific medication

for migraines. He will be re- evaluated if the headaches worsen or become more

frequent because of another issue they found in the MRI. Sorry I couldn't be

more of a help. I hope Hans gets some relief from the migraine treatment...

carayod <bernard.carayol@...> wrote: