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Kayla's Mom
06-08-2011, 11:28 AM
Does anyone on here have hypermobility as well as Lupus?
My daughter finally had her appt. and the Dr. thinks she is hypermobile and doubts she has Lupus. It might explain some of the joint pain, but it surely does not explain ALLLLL the other symptoms she is having as well as the ANA test! I am a bit frustrated. The Dr. sent us home with some different exercises for her to do and told us to buy her new shoes, then scheduled another appt. for Oct. New shoes?! Really??

ritzbit
06-08-2011, 11:35 AM
You saw a rheumatologist at a Childrens right? I would think you would be coming back sooner than that with all those problems she was having, if nothing else to see if she was getting any better with what they were telling her to do. Did they not even give her any medicine? I think its really important if she is sick to start on medicine now. Did you see PT while you were there? I got special orthopedic inserts when I saw them that were fitted for my feet and they actually do help a little bit. I would ask about that maybe.

Kayla's Mom
06-08-2011, 12:12 PM
Yes, it was a rheumatologist at a Children's Hospital. No, they did not give her any medication. Yes, she did see a psychical therapist. Oct. 3rd is the next appt. I just can't believe with all her symptoms that more isn't being done.

ritzbit
06-08-2011, 12:19 PM
I would try to get in earlier than that. Tell them you think that they need to look more into what is going on with her. When my mom says stuff like that they tend to listen to her more than my complaints. I was complaining of a fast heart rate and trouble breathing for almost 6 months before it got looked into. It took a really bad flare, pulse of 166, and my mom putting her foot down to get more tests done and an appointment with a pulmonologist. I hope that you can find some relief for her. Im kind of suprised they didnt start her on any medication at all. If you see that rheumatologist again and they dont do anything I would ask to see another one at that Childrens. I almost did that with mine because I didnt feel like she was always listening to me.

tgal
06-08-2011, 12:37 PM
Oh I am so sorry about this! This happens way too often (I actually posted about this just a few moments ago)! Some doctors have are in such a hurry and hard headed that they look at the meds, ask traditional symptoms and then dismiss everything because going through and finding out what is REALLY wrong will take too much time. They are great when the answer fits in their little box but not so great when they really have to take the time to ind those answers!

I will say this again (from another thread). Fire that man and find another that is willing to really LISTEN. Even if it isn't Lupus or an AI disease something is going on with her and she needs help!

magistramarla
06-08-2011, 10:49 PM
Hi Kayla's Mom,
It's good to see you here again. I agree with Mari. Keep pushing for better answers than just new shoes! This doc is just trying to dismiss you with an easy answer.
If the Children's hospital doesn't help, try a teaching hospital associated with a good medical school.
Hugs,
Marla

giggle
06-08-2011, 11:23 PM
Hi there : )

I am posting some information here because hypermobility is a symptom of a number of serious illnesses, so I wouldn't say that such a diagnosis is a step backwards. One such illness, is lupus. A diagnosis of hypermobility is a step towards a diagnosis for what may be an overall condition. What are her other symptoms may I ask? I wouldn't completely write that doctor off, but I would immediately look into other specialists that may be able to work with what has already been diagnosed. The doctor certainly does sound a bit cynical and should have offered for in between now and the next appointment than new shoes!

But, please dont see his denial of lupus as a bad thing right now, because what he DID diagnose her with is a symptom of lupus, putting his foot right in it anyway. You will probably find it easier for get a proper diagnosis now.

Anyway Im rambling... here is some basic information on hypermobility.

Some people have hypermobility with no other symptoms or medical conditions. However, people with hypermobility syndrome may experience many difficulties. For example, their joints may be easily injured, be more prone to complete dislocation due to the weakly stabilized joint and they may develop problems from muscle fatigue (as muscles must work harder to compensate for the excessive weakness in the ligaments that support the joints). Hypermobility syndrome can also lead to chronic pain.

Hypermobility may also be symptomatic of a serious medical condition, such as Ehlers-Danlos syndrome, Marfan syndrome, rheumatoid arthritis, osteogenesis imperfecta, lupus, polio, Down syndrome, morquio syndrome, cleidocranial dysostosis or myotonia congenita.

In addition, hypermobility has been associated with chronic fatigue syndrome and fibromyalgia. During pregnancy certain hormones alter the physiology of ligaments making them able to stretch to accommodate the birthing process. For some women with hypermobility pregnancy-related pelvic girdle pain can be debilitating due to these two converging factors, and prohibits her from standing up or walking.

Symptoms of hypermobility include a dull but intense pain around the knee and ankle joints and the soles of the feet. The condition affecting these parts can be alleviated by using insoles in the footwear that have been specially made for the individual after assessment by an orthopaedic surgeon and orthotist.

I would be looking into ehlers-danlos syndrome, just in case.

tgal
06-08-2011, 11:32 PM
Hey Giggles,

Thank you for the information! I think the thing that made us so angry is that we have been with Kayla's mom while she waited on this appointment. We know all of the symptom kayla has been dealing with and she should have been started on some kind of medicine because there is much more going on with her then hypermobility! It is one thing for the doctor to say "I can see the hypermobility but I also think we need to do more testing because there is so much more going on". To offer this diagnosis and then say "I will see you after suffering for 3 more months" just does not see appropriate to me.

Peridot20_Gem
06-09-2011, 02:13 AM
Hello Kayla's mom,

Like it's been mentioned get rid of him, since day one of joining we your daughter as been so ill.

You can't say one minute you have this and all of a sudden they change their minds wheather it be an adult or child, she needs properly looking at, even though you've seen the specialist, Kayla needs diagnosing properly not just being told she as something then it's bye.

((Hugs to you both)) Terri xxx

Kayla's Mom
06-09-2011, 12:10 PM
I appreciate your post. I have done all of the research I could possibly do for hypermobility. I was surprised to read that it was linked to Lupus. Her symptoms are: joint pain in the hips, knees, ankles, elbows, wrists. Confusion (brain fog), headaches, dizziness, reaction to the sun (sick in bed for a day or two after being in the sun), irritable, mood swings, nosebleeds, easily bruises, gums bleed, skin is sensitive (she says it burns when she is lightly touched), weight gain, FATIGUE, chest pains, shortness of breath, bad stomach pains, blurred vision, back pain, nauseous, sweats for no reason....I am sure I am forgetting something, but you get the idea.

ritzbit
06-09-2011, 01:06 PM
Sounds like me minus the bleeding gums and sensitive skin. I would definitely call up there and demand she be looked at more. With so many problems they need to help her more than that. I dont think its fair for her doctor to tell her to suffer on another 3 months with these problems when she's basically getting no treatment for over half of her symptoms. See if you can get in an appointment with another rheumatologist there. Even if you have to wait a long time again you might have better luck with a new one than with the one who already seems to be dismissing a lot of her complaints.

Gizmo
06-09-2011, 01:58 PM
I appreciate your post. I have done all of the research I could possibly do for hypermobility. I was surprised to read that it was linked to Lupus. Her symptoms are: joint pain in the hips, knees, ankles, elbows, wrists. Confusion (brain fog), headaches, dizziness, reaction to the sun (sick in bed for a day or two after being in the sun), irritable, mood swings, nosebleeds, easily bruises, gums bleed, skin is sensitive (she says it burns when she is lightly touched), weight gain, FATIGUE, chest pains, shortness of breath, bad stomach pains, blurred vision, back pain, nauseous, sweats for no reason....I am sure I am forgetting something, but you get the idea.

Kayla's Mom,
I have never heard of hypermobility being linked to lupus, and I've done a lot of research on both disorders. Learn someone new every day!

Your daughter sounds like a sister to my daughter (now 19). I'll skip all the messy details and suggest that you make an appointment with a geneticist. It will probably take many months to get in, but any Childrens hospital should have one or two. A geneticist would be the person to diagnose Ehlers Danlos Syndrome, which is a genetic disorder affecting collagen. My daughter has undifferentiated connective tissue disease - a diagnosis she got only because prednisone, plaquinil and methotrexate help her feel better. She was diagnosed with Ehlers Danlos Syndrome 4 years ago and since then has developed dysautonomia symptoms (a disorder that can accompany EDS and some autoimmune disorders). She has chronic fatigue, nausea and vomiting, weight gain despite not eating much, sensitivity to heat, sweating for no apparent reason, bladder issues, chest pain, rapid heart rate, wounds that heal poorly and scar badly, passing out when standing up, joints that dislocate easily, numbness in her arms and legs - and that's the short list.

Getting EDS confirmed or ruled out is important because there is a life-threatening form of the disorder that can cause organs and blood vessels to rupture. My daughter had a tissue biopsy sent to the University of Washington for testing to determine that she does not have that kind (Type IV). There are 3 physical problems that can accompany EDS that could possibly cause some of your daughters autonomic symptoms: Chiari malformation, tethered cord syndrome and cranio cervical instability. Those are diagnosed with special MRIs and treated by a neurosurgeon.

I would be happy to talk with you privately, and can give you names of doctors in Colorado and in Maryland that have helped get our daughter diagnosed. We have figured out so much on our own because very few doctors deal with this disorder. There is a national conference in July in Baltimore with most of the top hypermobility people in the country, and they are still taking registrations! Three of the featured speakers take care of my daughter. We've traveled to Baltimore 3 times in the past year. It's taken us into debt, but it's also the only place we've gotten real help.

We have had to push for every diagnosis and every treatment. You are going to have to become Super Mom and never give up. Be polite, but persistent. Research, ask questions at forums like this and be prepared to do battle for your daughter. Is Kalya's dad involved? Sometimes, especially with older male doctors, having Dad ask the questions and push for answers will help avoid the "helicopter mom" label. As Mari has recommended many times, keep a journal and take a printed list of symptoms to every appointment.

I would love to help you navigate the hypermobility maze, if you would like.

tgal
06-09-2011, 08:58 PM
Kayla's Mom,
I have never heard of hypermobility being linked to lupus, and I've done a lot of research on both disorders. Learn someone new every day!

Your daughter sounds like a sister to my daughter (now 19). I'll skip all the messy details and suggest that you make an appointment with a geneticist. It will probably take many months to get in, but any Childrens hospital should have one or two. A geneticist would be the person to diagnose Ehlers Danlos Syndrome, which is a genetic disorder affecting collagen. My daughter has undifferentiated connective tissue disease - a diagnosis she got only because prednisone, plaquinil and methotrexate help her feel better. She was diagnosed with Ehlers Danlos Syndrome 4 years ago and since then has developed dysautonomia symptoms (a disorder that can accompany EDS and some autoimmune disorders). She has chronic fatigue, nausea and vomiting, weight gain despite not eating much, sensitivity to heat, sweating for no apparent reason, bladder issues, chest pain, rapid heart rate, wounds that heal poorly and scar badly, passing out when standing up, joints that dislocate easily, numbness in her arms and legs - and that's the short list.

Getting EDS confirmed or ruled out is important because there is a life-threatening form of the disorder that can cause organs and blood vessels to rupture. My daughter had a tissue biopsy sent to the University of Washington for testing to determine that she does not have that kind (Type IV). There are 3 physical problems that can accompany EDS that could possibly cause some of your daughters autonomic symptoms: Chiari malformation, tethered cord syndrome and cranio cervical instability. Those are diagnosed with special MRIs and treated by a neurosurgeon.

I would be happy to talk with you privately, and can give you names of doctors in Colorado and in Maryland that have helped get our daughter diagnosed. We have figured out so much on our own because very few doctors deal with this disorder. There is a national conference in July in Baltimore with most of the top hypermobility people in the country, and they are still taking registrations! Three of the featured speakers take care of my daughter. We've traveled to Baltimore 3 times in the past year. It's taken us into debt, but it's also the only place we've gotten real help.

We have had to push for every diagnosis and every treatment. You are going to have to become Super Mom and never give up. Be polite, but persistent. Research, ask questions at forums like this and be prepared to do battle for your daughter. Is Kalya's dad involved? Sometimes, especially with older male doctors, having Dad ask the questions and push for answers will help avoid the "helicopter mom" label. As Mari has recommended many times, keep a journal and take a printed list of symptoms to every appointment.

I would love to help you navigate the hypermobility maze, if you would like.


We have such wonderful people here! I love the way one of our family members offers to help another.

ritzbit
06-15-2011, 12:07 PM
I just thought I'd send this link http://www.ehlersdanlosnetwork.org/mysterydiagnosis.html

I just watched this episode of Mystery Diagnosis on TV and thought of you guys. Maybe you can look though the website and watch the episode, its on the page.

Franziska
06-16-2011, 08:00 AM
I have hypermobility and lupus. I only found out last year when I went to see a very good rheumatologist. She assessed and diagnosed me with hypermobility. For me it was just giving a name to my ability to bend various parts of my body in weird ways. I've always been that way from a very young age onwards.

She told me I can't do certain things, like yoga for example but I should definitely do exercise. I swim and walk, that's all I can do once my body has "warmed up" enough and I'm able to move around. I was diagnosed with lupus at the age of 24 but I suspect I've had it longer than that.

Your daughters symptoms sound like mine but then, I'm an adult, and I don't really know any different anymore, you kind of learn to live with it.

I am so sorry that your daughter has to go through all this (and you, of course). I would push the doctor for an earlier appt. and if he doesn't commit then maybe you can go and see another doctor.

But most of all, you need to stay positive. There is light at the end of the tunnel. Good luck to you and your daughter.