A combination of MRI, bone scans and blood work will help make the diagnosis. In our case, the MRI made the diagnosis.
I am one of the lucky people who continue on with the Prednisone, everytime I try to get off and go below 10mg, my body feels like someone has unplugged me. I can also related to the headaches, and the crying fits. Hoping my doctor will provide a replacement for this horrible drug.
I'm another 'lucky' person, been on pred for about 1 1/2 years now, at 10mg now and feeling it, been told I'm on it for at least another year due to my heart
Sounds like your taper was too quick.
Just asked Dr for referral to IU Indy. Thanks.
Dr. Abonour comes to Carmel on Weds. Little closer.
I grew up in Goshen - your family doc should be able to refer you to a gastro who can get you in quicker than that. If not, ask for a referral to IU Indy. My husband was diagnosed after an endoscopy I pushed our family doc to refer out to a gastroenterologist. They took a biopsy and the amyloid protein showed up through a congo red stain. Then the gastro referred us to Dr. Merrill Benson in Indy, and he ordered the kappa light chain test that showed the level of protein. From him, then to Dr. Abenour. You just have to be pushy and noisy to get what you want from doctors. Good luck.
His are on the left too, even his swelling(when he does swell) is usually on the left.
I just don't know if it should be seen by a. Dr?
EDS/HMS people do bruise extremely easily. My daughter gets up every morning with at least one new bruise, she fell off her scooter last sunday so you can imagine what she looks like at the moment lol. ANd they also have very translucent skin, my sons veins show up really bright on the side of his face and his chest is like a road map. x
My son actually goes back this week for more blood work. His liver enzymes fluctuate.
I feel so sorry for all these kids fighting this disease and others. Then we have to deal with the secondary issues like HPS, AVN, Osteoporosis, weight gain, stretch marks, etc and they are just kids. UGH!
Oh Jennifer Shurman I am so sorry you have had to go through this with your daughter. My daughter takes Kineret and does seem to have some lung issues but never dreamed this could be the problem. Can I ask what the symptoms of her lung problems she started to have and how it progressed to oxygen?
Same here - sadly, that's been a major indicator that my daughter isn't feeling well. After a recent medication change and extremely challenging behavior, we increased antibiotics which improved behavior. It's been challenging finding the right balance and figuring out what's triggering the behavior. Don't wean her off the antibiotics yet (we tried too but found she still needs them). Best of luck!
the meds can definitely cause these types of behaviour symptoms...are you doing lots to detox?
Chris, I am realizing we need to up our detox. I detox extra when I herx, but she doesn't articulate how she's fee!ing or what changes very well yet. And she's probably felt "off" since birth so we wonder if she even knows what healthy feels like.
I will later Caroline Jane Richey. Thanks :) Now just got to work out how to get £350 raised !!!
I have just emailed the hms unit ...it would be nice not to have to explain for a change !
I have a 5 year old giirl who is tall for her age but thin, she is starting to develops breasts. I wonder is the boobs and moobs a side effect? It is so difficult for them.
Your right Kym Paling I just got his notes out.from what I can remember she was ok and gave us an exercise programme
Can you tell me more about the knee and ankle braces Kirsty Ann
I've pmd you Donna Bottriell Was Drewett. They are only to offer support during pe and any sporting activities. Not for all the time use but I wanted advice for sports only so I was pleased with advice received x
Hi Hun I get this with my knee and so does my daughter ours also give way. I now don't kneel ever and try not to bend my knee past a certain point. I feels as if ligaments at the back of the knee have crossed over and stuck. A big hug to your daughter xx
Thank you for the reply sometimes you feel like your going mad doctors telling you one thing and then other things happening,she falls nearly every other day at school
Having FVL does not mean you have APS. They are two totally different things. I would check with your dr if you're not sure which diagnosis applies to you :)
There are specific tests for each of these conditions, you can have more than one but it is important to know exactly what clotting conditions you have.
I have APS
I actually was just told about it by the nurse yesterday. :-) Thanks.. Yes it would have been helpful all those times before.
Oh good. My son never feels a thing. He has autism so he acts like he's much younger and he needs it even at 14.:)
Great news!!! SO SO happy for you and your girl.....time to celebrate!!!
We are a right bunch.My husband who likely has EDS has problems with his back and leg again and is in pain and on crutches.My non diagnosed daughter is looking more bendy by the day. Seems like so much happening at once.
Mine really kicked in at puberty and after each baby but it's all ok in the end, it's just hard to see it when EDS is kicking your butt. It's even harder to watch your kids fight this. I was told once that I had Hypermobile eardrums ; )
Crazy isn't it
Laparoscopically. It doesn't show up on ultrasound so they went in and looked and found lots of scar tissue all over my ovaries, bladder and bowel. They zapped it with laser. But after a few years it comes back. Only thing thst helped was mirena iud. I had no issues for 5 years but it came out last july. Slowly it is getting worse for me
Wish u the best.
Thank you all very much for your opinions xx nice to see we are not alone
Hi Tracey, I have to disagree with you, it depends on the ability of the family to give up one income, that parents have the time and energy to dedicate to that child and as I had an elder daughter who experienced clinical depression due to school I was very aware of the risks of leaving my child in school, so I did not. However as my husband is impacted by disability, we felt abandoned. It is great for you if you do have the resources but for parents who do not what choice do they have. None.
Well that's just you & your experience, not everyone. Home ed can and is done in many cases on a shoe string. Everyone's life is different, I haven't found it tough, school - yep that's tough going, I've really enjoyed our journey. It's not for everyone but it is most defiantly for us for the foreseeable future :)
Could not be without a daily banana as it provides potassium and much needed energy and serotonin. Have to avoid sugary foods and drinks because I have amyloid in the salivary glands which means I have very little saliva which protect the teeth from decay. I eat natural yoghurt with fresh fruit as a dessert and have a small amount of semi-skimmed milk in hot drinks and on cereal. Also a small amount of cheese. I could not take all those pills for the ayurvedic diet. There's no way that they can be better than healthy good wholesome natural foods containing essentials needed by the body. The message from the NAC amyloidosis specialists on diet is that nothing is specifically recommended except to eat healthily.t
All depends on each individual health condition, I guess.
I do the one banana a day too but still needed potassium pills for the longest time too. Just got off them. Also had heard there is no specific diet except to eat healthy and of coure if you had other specific problems
Thanks Angie! I start PT and getting a brace made on Tuesday. Trying that for one month and if not better then he will do surgery. It's only gotten worse, so I figured it was time do something! My hand is going numb all throughout the day now. And the tendonitis is not fun either.
Poor thing. I know how bad that can be WITHOUT a toddler. I can't imagine what you're dealing with. Let me know if I can do anything.
I had one on feet, legs, arms and hands. I could not believe it did not trigger a flare!
No, it is not pleasant. But for me, it was a good distraction from every day pain. LOL Gotta mix it up once in a while, right? :-P
I never got a large area, just had 8 individual spots over a two month period and nothing since January of this year. Seems most people get the rash type so I wonder about mine. My vasculitis is still undetermined.
I got weird marks all over just my feet! After I started getting better, it mostly cleared up. Please do call your doc and let him know.
Is it warm to the touch? Could be a vasculitis flare, but could also be cellulitis or infectious. It's good that it doesn't hurt, but always best to contact the doctor and take photos of all changes especially if it changes in color or size or appears elsewhere on your body. Have you taken any new medications recently RX or OTC? Many meds can cause rashes, too. Be sure to monitor your temp and BP too as those can indicate a flare if they are higher or lower than normal in tandem w/the rash or skin changes.
I'm not at home so I cant reference my Shoemaker material. But if I was using a Shoeamker recommended lab (which Shoemaker uses the C4a) I would never use a Labcorp reference, but instead I would use only Shoemaker ranges. ANd yes, C4a is a biomarker for elevation of cytokines when you are exposed to mold.
I would still definitely consider that elevated!
We worry about that too mine are 8yr old twins my daughter Def dx and been in treatment for about 10 months now. Her twin brother always complaining of leg pains but no swelling anywhere?
My daughter is adopted and I know nothing about her biological family's medical history. :(
Thank you all, I feel guilty as have always thought he was saying because his sister was x it really helps hearing other mummy's and daddy's views and opinions, it's still very new to me and I'm learning more and more daily, I just wish that she wasn't suffering, no hold deserves to suffer, it breaks my heart all day every day and I'm having trouble accepting that she is poorly and in pain. Thank you for your support x
Alice, as parents it is so hard to see our children suffer so much. I think one of the scariest parts is the not knowing. Not knowing how bad this will end up being. We live our lives based on how she feels or what she thinks she can tolerate. She used to be very active in sports, but at this point, she participates in none. She is now active in drama and other extra curriculars. But oh how she misses her sports.
I noticed a while back that her pain seemed to get more intense around her period. (She just started in September) but now she doesn't have a period. She was really regular for about 6 months and then it just stopped. And since she doesn't have a period the pain is worse?!? Go figure. We have an appt with rheumatology in July. So hopefully we will get more answers. One thing I have learned, is that there is certainly no textbook case of EDS. Every person is different. Every day is different.
That I agree with that 100%! Molly has not begun her cycle yet either. I keep thinking any day now, but nope! I have no idea what to expect. Just wait and see. :)
Certainly sending prayers and good vibes your and Molly's way!!! I love this little group. It's so nice to have other parents to "talk" to who are in the same boat we are.
Oh my goodness yes she really doesn't like bright lights
She probably is getting ulcers on the backs of her eyes. You need to be sure she has sunglasses on when she goes outside and also tell the doctor about her light sensitivity. Behcets causes blindness if we have too much scar tissue on the backs of our eyes from the ocular ulcers. Also regardless of what they tell you, I believe this disease is inherited. I have it and so does my youngest sister. Our kids also have it and now so does one of my grandsons. I also have 2 first cousins on my mom's side of the family who also have it. I just find it strange we all have such a rare disease like Behcet's if it isn't passed down genetically somehow.
No one in either of our families have it. It's the first I ever heard of it. Her GP was going to refer her to maxfax but said they would only focus on the ulcers not the overall issue so she's been referred to general paeds. Would it be worth getting her eyes tested??
It's not present in injectables, but it is there in bee stings. I read that it is in tiny amounts when injected. That's a problem for me. Taking the parts doesn't equal the whole. After going through both, I can say that they aren't the same treatment, not to me.
CK. if someone, for some reason, cannot do bees, can Apamin injections help at all?
Well that is just it. If you use injectables, the main ingredient is melletin. Now, that is a powerful ingredient. It looked like there might be 2 to 3% apimin in injectable venom. That might work. And I'll say this. If I had no chance of doing bees live, I'd use Swedish venom and use the protocol.
Jayne, just curious - who is your ortho? Was she always pain free or did pain lead to the OCD diagnosis? There are a few on here who had no pain symptoms and the diagnosis was incidental...
Pierre had no pain - apart from when his knee locked without him realising and he tried to carry on moving as normal!
Xxxxxxx Yzzzzzz , Issy had pain for a couple of years. Initially we were told she had severs disease by a sports doctor but early 2014 it started clicking and was painful.