[MysteryPainMom]

Hi, I am new to the forum. I have a 15 year-old daughter who I think might have RSD. The neurologist said that it is either a sensory neuropathy, which would be very rare for a child, or RSD.

There are a couple of things that seem odd to me though. Here is her story, in a nutshell:

November- she began having headaches.

January- headaches turned to migraines and continued to get worse and last for longer periods of time.

Mid-April- she developed a sudden pain in her left shin. Within 45 minutes she was screaming in pain and she could not walk. I took her to the ER, they said that it was probably related to the migraine. Her neuro at the time said that was impossible. He sent her to a rheumatologist. The rheumatologist told us that it was "just something teenagers get." and gave her Tramadol. That did no good.

First week in June-- pain spread to left arm, right arm, and right leg. She could barely move. Went to a new Pediatric Neuro, he put her on Neurontin and increaded Amitriptyline. She was then on 40 mg. Amitriptyline once a day and 300 mg. of Neurontin 3 times a day. about a week later, he increased the Neurontin to 600 mg. 3 times a day. The pain was not gone, but it was bearable, and she could walk much better. Night time was still worse than day time.

A few days ago -- the pain increased to where it was before the Neurontin was started. The neuro increased her Amitriptyline to 50 mg. per day. She is still in a lot of pain.

She did not have an injury of any kind that started this. I have read that there is not an identifiable inciting incident in about 5% of RSD patients.

Does all of this sound right?

Could the migraines have anything to do with RSD?

We have ruled out all possible underlying disease.

What do you think?

[Jimking]

MysteryPainMom, I'm truly sorry to hear about your daughter and the pain she's going through. My wife has RSD but her's is from an injury. Apparently some folks will get RSD without an injury. I'm no doctor and can only state from my observations of my wife's condition. This situation with your daughter sounds different to me but doesn't mean its not because RSD truly does differ from person to person. I did receive an email that mentions migrains and RSD. I do have one question, has your daughter gotten hives or a rash of anykind? The email I received is posted below.


"Final Progress Report of RSDSA and RSDHope co-funded grant Maternally inherited mitochondrial DNA sequence variants and CRPS-1
Researcher's Name: Richard G. Boles, M.D., Childrens Hospital Los Angeles

The term "functional disorders" refers to conditions that cause symptoms, but no abnormal findings on testing, such as from blood or imaging scans. Examples include migraine, cyclic vomiting syndrome (CVS), chronic fatigue syndrome, fibromyalgia, and irritable bowel, as well as CRPS-I (RSD).

The first finding of this RSDSA and RSDHope-funded study is that CRPS-I patients usually suffer from multiple functional disorders, including the ones listed above.
Second, in this study the Boles group found that disease is primarily inherited in the mother's family in 22% of CRPS-I families. Maternal inheritance suggests that the genetic mutation causing disease is encoded on the mitochondrial DNA (mtDNA), because the mtDNA is inherited exclusively from the mother.

Third, in this study the Boles group found that the mtDNA sequence variant called 16519T is common in CRPS-I patients. Previously, they had found that 16519T is common in CVS and in migraine patients. The data implies that 16519 doubles the risk that a person will develop CRPS-I. Overall, their data suggests that a sizable minority of CRPS-I patients have disease in part due to mitochondrial dysfunction (low cellular energy levels), which in turn is in part due to DNA sequences inherited from the mother.

Their findings suggest that therapies aimed at increasing mitochondrial energy metabolism might be helpful in at least some patients with CRPS-I, perhaps more so in those in which functional disorders are common in relatives that share the same mtDNA sequence (siblings, mother, mother's siblings, sister's children, and the children of female patients). Dr. Boles has anecdotal observations (based on clinical experience, not vigorously studied) that CRPS-I does improve markedly in many children and young adults from families demonstrating maternal inheritance (older patients and those from families without maternal inheritance have not been studied). The therapy that appears to be effective consists of a combination of the following elements:
Amitriptyline (enough to achieve a therapeutic blood level).
Co-enzyme Q10 (starting with 200 mg twice a day (in adults and children over 80 pounds) from gel capsules or liquid preparations, and monitoring for a high blood level)
B vitamins (including 100-400 mg of riboflavin a day)
Exercise in moderation and/or physical therapy (to a degree short of causing substantial pain or fatigue; immobilization generally worsens the pain and disability)
Frequent feedings to avoid fasting.
This regiment has potential side effects, and must be prescribed and followed by an appropriate physician. Therapy is complicated, and generally requires months to show full effects. For patients under age 30 years, referral to my Mitochondrial Functional Disorders Program at Childrens Hospital Los Angeles is a potential option. For more information, contact Dr. Boles at **

[daniella]

Hi I am sorry about your daughters pain. I have RSD and did not have an injury. I thought I did but went to the orthopedic right away and there was no injury so when my pain continued to increase I was sent to the neurologist who preformed many tests emg/nc,mris etc. I also went to other specialties like endocronoligst,rheumatologists,many pain doc,another neuro I could go on. I first was dx with peripheral neuropathy and then rsd. My condition is in my legs but then 6 months after that began I developed severe eye pain and sometimes get severe head aches from the eye pain which we are thinking is now rsd since every other condition that would cause this pain has been ruled out. I developed PN at 28 and though I was older then your d it is still young. What dx tests has your daughter had?What kind of blood work has she had testing for auto immune conditions or other vitamin deficiencies? Has she been sick in the past with anything? Any other problems she has had such as a fall in the past or health problems? I am sorry I don't have more answers for you. If all the testing has been done and the pain treatment is not working I suggest she see's a pain doctor/anestesolgist. My neuro does do some with pain meds and treatment but overall the pain doctor works more with that.

[dreambeliever128]

Your daughter is at the age where they goof around as I call it a lot. Very active. My youngest grandson had to quit football last year. Both of his knees are messed up. They found no injuries but his pain was so bad at night from just being active all day, the Drs. told Susan to pull him out of football. He would stay here and we'd use ice and he has prescription meds. Since getting out of football he is better but they did say not to put him back in it. He is 15. He canot tell us how he hurt his knees if he did. Your daughter just goofing around with her girlfriends or swimming or anything she could have set it off.
As you said, the headaches might have done it too. She may have even gotten a little knock on the head that sat it off in that area. As someone said though it could start without the injury at all.

I hope she finds some relief soon. I would make sure that you do have that right Dr. too. In watching that 3rd Fox news story, it says to keep going to Drs. until you find that right one. I did that when I first started. Of course mine went in a circle right back to my PCP but a good RSD Dr. is very hard to find.

Stay on here and you will learn enough that you can tell the Dr. what you think about the treatments and plans for her. You will learn more then a lot of Doctors know about RSD.

Ada

[keep smilin]

Originally Posted by dreambeliever128

Your daughter is at the age where they goof around as I call it a lot. Very active. My youngest grandson had to quit football last year. Both of his knees are messed up. They found no injuries but his pain was so bad at night from just being active all day, the Drs. told Susan to pull him out of football. He would stay here and we'd use ice and he has prescription meds. Since getting out of football he is better but they did say not to put him back in it. He is 15. He canot tell us how he hurt his knees if he did. Your daughter just goofing around with her girlfriends or swimming or anything she could have set it off.
As you said, the headaches might have done it too. She may have even gotten a little knock on the head that sat it off in that area. As someone said though it could start without the injury at all.

I hope she finds some relief soon. I would make sure that you do have that right Dr. too. In watching that 3rd Fox news story, it says to keep going to Drs. until you find that right one. I did that when I first started. Of course mine went in a circle right back to my PCP but a good RSD Dr. is very hard to find.

Stay on here and you will learn enough that you can tell the Dr. what you think about the treatments and plans for her. You will learn more then a lot of Doctors know about RSD.

Ada

Perhaps we can all think back when our RSD entered our lives and really not a rock solid cause or injury...Currently, my RSD is whole body but I first began having trouble walking..it became increasingly difficult and painful... I knew of no cause for the pain...Now three years later and whole body..I think back and I had been experiencing some ear pain, headaches, mean headaches..not your usual headaches and hearing loss too... all of that was unexplained long before my walking was becoming an issue.. was it or is it connected to the beginning of my RSD?? So I believe we may never know what tips off this animal.. as Ada said..it could have been a minimal tap on the head which we may never remember happening... most importantly, we must try to manage our lives now with it...finding a great, knowledgeable Dr. in the field of RSD, we must try to educate ourselves and stay ahead in trying to live a happy fufilled life with our RSD as each day is a challenge...we must make RSD our friend, now thats crazy!!

In the mean time, we have eachother here..we know the hard knocks of this illness and all I can say is bless you all as life is short..and I am so glad I have you all here!!

Hugz, Kathy

[MysteryPainMom]

Thank you all for your responses. This is all great information for me.

She has had an MRI/MRA cranial/cervical/thoracic --normal
CT- head -- normal
Blood work for autoimmune disorders -- normal.
Blood work showed some inflamation as well as high liver enzyme. We are having the bloodwork repeated, just to make sure that nothing shows up this time.
Bone scan -- normal

EMG -- unusual abnormal findings--neurologists don't know what to make of it. It does not show a pattern of demyelination or axonal damage. It does show that the plantar (bottom of foot) nerves are non-responsive.

We went to the PCP today. We are planning on going to U of M. He is going to find out what they have there. It will probably take several months to get in there.

I just want to make sure that I get the right doctor. I told the PCP that I want to make sure that if we wait 6 months to get in somehwere then we need to make sure that we are going to someone who knows more than the doctors that we have seen before.

Thanks for all your input. I will continue to search and read the great information here.

Tracy

[keep smilin]

Originally Posted by MysteryPainMom

Thank you all for your responses. This is all great information for me.

She has had an MRI/MRA cranial/cervical/thoracic --normal
CT- head -- normal
Blood work for autoimmune disorders -- normal.
Blood work showed some inflamation as well as high liver enzyme. We are having the bloodwork repeated, just to make sure that nothing shows up this time.
Bone scan -- normal

EMG -- unusual abnormal findings--neurologists don't know what to make of it. It does not show a pattern of demyelination or axonal damage. It does show that the plantar (bottom of foot) nerves are non-responsive.

We went to the PCP today. We are planning on going to U of M. He is going to find out what they have there. It will probably take several months to get in there.

I just want to make sure that I get the right doctor. I told the PCP that I want to make sure that if we wait 6 months to get in somehwere then we need to make sure that we are going to someone who knows more than the doctors that we have seen before.

Thanks for all your input. I will continue to search and read the great information here.

Tracy

Tracy..

Head for an anesteologists, Pain management or neurologist.. They seem to versed in RSD..if they are at all.... And I also had MRI's and many other scans, blood work etc.. at the beginning of my ear troubles and headaches..All came up negative which seems common in diagnosising my RSD..It is a process of allimantion many times...Best wishes and keep us posted..You have our support and love.

Kathy

[dreambeliever128]

I'm with Kathy on the choice of the 3 Drs. she mentioned.


As far as University hospitals, some may be good but I consider them learning hospitals and they use the patients to learn on. I went through that with the U of Denver and have heard it over and over from people around here that have went there. My PCP finally made me understand that they were using me for a guienna pig.

Call around and see if you can find a good Anesteologist that has his own office, a good PM, or a good Neurologist. I honestly think though the Drs. brand don't matter if he knows about RSD. If one don't suit you, move on. The best Drs. I have had for my RSD has been my PCP, a hand surgeon, and an Anesteologist.

Ada

[MysteryPainMom]

Originally Posted by dreambeliever128

I'm with Kathy on the choice of the 3 Drs. she mentioned.


As far as University hospitals, some may be good but I consider them learning hospitals and they use the patients to learn on. I went through that with the U of Denver and have heard it over and over from people around here that have went there. My PCP finally made me understand that they were using me for a guienna pig.

Call around and see if you can find a good Anesteologist that has his own office, a good PM, or a good Neurologist. I honestly think though the Drs. brand don't matter if he knows about RSD. If one don't suit you, move on. The best Drs. I have had for my RSD has been my PCP, a hand surgeon, and an Anesteologist.

Ada

I really love this forum. I am glad that I found somewhere where people understand. I can relate to people saying that people on this forum know more than many of the doctors. I have found that to be true already.

Ada and Kathy,

What kind of doctor diagnosed you? The PCP was the one that first mentioned it, but I don't know if he feels as though he can give us a diagnosis.

U of M hospital is very good. I have heard many great things about it. The other option was Cleveland Clinic. They have a program for kids with RSD. The PCP decided that we could go to U of M because of the abnormal EMG. The neurologist didn't sound like he had much faith in the EMG, and he suggested that we have it repeated by a musculoskeletal (sp?) doctor. The PCP is going to talk to the neuro, so we will find out what they decide.

Has anyone else had a situation with the EMG showing something puzzling?

Tracy

[tmullen]

dear mom in pain,
i'm so sorry to hear about your son. he will be in my prayers. i'm 17 and have had rsd for six years. both legs, back and both arms.
i suggest Boston Children's Hospital. That is where i went and they got me out of my wheelchair in two months. They are very well known for RSD in children.
PM if you have any questions
taylor.