PLEASE HELP ME....

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MamaRosalind
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/29/2010 8:08 AM (GMT -7)   
 
A couple of years ago my son was crawling on the floor when he woke up (he was 11, so that was unusual)
I asked him what he was doing and he said I cant feel my legs. I took him to the emerg where he was admitted. He spent almost 2 week in the hospital on an IV taking steroid's. They did many test's. It came back for Myositis. Well in happend again a few months ago. He once again could not use his legs.
We are now seeing a rhumatologist, neurologist and a metabologist. They did some blood work and they called me yesterday and said his Antiphospholipid Antibody was abnormal and they want it repeated in the middle of may. What does that mean? I do have a cousin with Lupus and I do speak to him alot about what my son feel's, these are some of my son's symptoms:
 
He had myositis 2 time's to the point where he could not walk
He get myositis in his calves alot but able to walk except those 2 times
He has headaches almost every day
He get's joint pain
Bleeding noses
 
When he does get the myositis in his calves it is usualy after he is sick with flu or a cold!
He is going to get tests done on his heart to see if it damiging the muscle
Anyone experiance this...? I am very worried as my cousin is not doing well and I am scared my son may have this, he is only 13!

MamaRosalind
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/29/2010 12:54 PM (GMT -7)   
Wow, this site does not have many people that reply to your topic's, unless no one can relate to mine. I'm just in need of some insite to what other's have expieranced or if they expieranced any of my symptoms!

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/29/2010 1:22 PM (GMT -7)   
I think this is more a matter of no one knowing what to say. I have am idea of who we need to reply to you but it is an older gentleman who isn't online as much as the rest of us. I wanted to let you know we have read your post and do care. Also you need to give us some time. I personally have no experience with what you are describing. I have had to crawl before but that was because of pain in my spine not from not being able to feel my legs. I would tell you not to worry, but that is a mother's job and I know it well. I hope that someone comes along who can help and soon. I know how scared you must be right now. Antiphospholipid antibodies can be an indication of a tendancy to form clots but it is treatable. Beyond that I do not know what I can say that might help except that we are listening and hopefully someone with some experience will come online soon.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/29/2010 1:35 PM (GMT -7)   
Hi Pixie, I have to admit I have never heard of this before. I was thinking back about my son when he was your boys age. I was in the kitchen and he came down the hall to the kitchen and what was weird was that he was using his arms and hands to pull himself down the hall. He couldn't walk. It was like he was paralyzed from the waste down. It only happened a couple of times I had to pick him up and put him in bed. The doctor told me it was just growing pains. all though I don't really recall him crying from the pain or anything.  As far as being able to tell you what it means I'm willing to bet that even the doctor doesn't know. These immune problems are so frustrating. Either they are just to hard to figure  out or there hasn't been anyone that has/had it to make them put up the money for testing. Do they have him on any kinds of medicines now? There are many meds that will help with difference symptoms but not nessesarly going to answer the question about what it is. There are a couple of ladies that have children on here that could probably relate to your son's case but they aren't around much. Try not to worry to much if at all possible. That's not going to help anyone. It sounds like you are doing everything you can. I really hate it when you have to be on all the waiting lists. Maybe you could get another rheumy in the mean time and tell them you want to do a second opinion. Write down everything that you notice that your son does that is out of the normal for him. Start a journal. take his temp 3 times a day. write it down weather he has one or not. get a camera take pics of every rash bump or bruise that he gets. take pics or swollen legs an ankles. what happens if you don't is they won't be there when you are at the doctors and what we my think is normal may be a red flag for the doctor. Also and this is very important. Call up the doctor and asks specifically if this doctor is knowledgable of auto  immune diseases. Many of them aren't. they are RA doctors but not lupie doctors. that makes a big difference.
You might try getting some ice to put on his knees and other joints to bring the swelling down.  lastly if you don't get the answers you are looking for run do not walk to the next rheumy. No sense wasting each others time. Trust me it happens more then you know. Having a good doctor to relate to you are your son have to be comfrtable with them.
I'm sure others willl be here with info as well. I don't know about the others but this gloomy weather is kind of makingmy body drag.
I hope you and your son will find some answers soon.
hugs
carol

systemic sclerosis,scleroderma,sleep apnea, anemia, COPD
 

 But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.
 


MamaRosalind
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/29/2010 1:45 PM (GMT -7)   
Thank you very much for your reply, it is greatly appreciated!

<Edited to remove extraneous quotes of entire posts. It costs money to save copied data. Please be patient, many of us are sick or working and can only check in once every day or so.>

Post Edited By Moderator (Lynnwood) : 1/29/2010 2:15:42 PM (GMT-7)


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 1/29/2010 4:12 PM (GMT -7)   
My cousin was hit with dermomytosis... she was very sick... right now doing ok... but I think it affected her muscles....

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/29/2010 4:30 PM (GMT -7)   
Hi!  I just wanted to say, I am so sorry you are dealing with a sick child.  I'm not familiar with this disease either.  Thankfully, you are on the right track and getting him in to all the right docs.  I will be praying for you and your son.  Wish I had more to offer.  God Bless you, judy

crstr
New Member


Date Joined Jul 2009
Total Posts : 9
   Posted 1/30/2010 8:59 PM (GMT -7)   
here is some info i collected on antiphospholipid syndrome........i've been collecting any & all things related to SLE......i am so sorry to hear about ur son.......i had 4 kids & when they r sick, it nearly kills u........if this was my child, i'd pester & call & demand that any dr who knows anything about this & talk to u.........u may have to talk to many drs to get the help u need.......u know the thing about the squeaky wheel....it applies.........anyway, here's the info i have: i have alot more info on this, but it's really long........if u'd like me to mail it to u, email me at: cmtest204@mac.com................chris......

Antiphospholipid syndrome
From Wikipedia, the free encyclopediaantiphospholipid

Antiphospholipid syndrome (APS or APLS) or antiphospholipid antibody syndrome is a disorder of coagulation that causes blood clots (thrombosis) in both arteries and veins as well as pregnancy-related complications such as miscarriage, stillbirth, preterm delivery, or severe preeclampsia. The syndrome occurs due to the autoimmune production of antibodies against phospholipid (aPL), a cell membrane substance. In particular, the disease is characterised by antibodies against cardiolipin (anti-cardiolipin antibodies) and β2 glycoprotein I.
The term "primary antiphospholipid syndrome" is used when APS occurs in the absence of any other related disease. APS is commonly seen in conjunction with other autoimmune diseases; the term "secondary antiphospholipid syndrome" is used when APS coexists with other diseases such as systemic lupus erythematosus (SLE). In rare cases, APS leads to rapid organ failure due to generalised thrombosis and a high risk of death; this is termed "catastrophic antiphospholipid syndrome" (CAPS).
Antiphospholipid syndrome is sometimes referred to as Hughes syndrome after the rheumatologist Dr. Graham R.V. Hughes (St. Thomas' Hospital, London, UK) who worked at the Louise Coote Lupus Unit at St Thomas' Hospital in London.
systemic lupus, adrenal fatigue, hashimoto's disease....57, mother of 4, w/6grandkids, w/ a wonderful, understanding husband.........

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