Mitochondrial disease Common with EDS?

I Have very severe Ehlers Danlos syndrome type hypermobility: at my last appointment when I told the doctor I have neuropathy out of no where pins and needle feeling with numbness and also periods where I have trembling in my hands they wondered if mitochondrial disease was playing a role in this to. They also say I have my own disease. any ideas?

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I have pretty extreme hypermobility too, along with my dysmotility problems. No one has ever brought up Ehlers-Danlos to me, but then, none of my GI doctors have ever asked about my joints. How did you get diagnosed? One thing I have found with these issues- it is never straight-forward and there is always a lot of gray, unknown area.

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It sounds like neruropathy. Are you a diabetic? Of course neruropathy is caused from other health issues than being a diabetic. I hope you can get it figured out soon.
Your Friend
JoAnna

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I have eds hypermobility too and get the pins and needles feeling a lot! I'm not for sure what causes it, but it gets on my nerves!! My hands will shake sometimes and sometimes my skin feels like it's on fire. My 5 year old has the same problems. My hands go numb. I've had bells palsey too. How is your gi tract affected? My daughter has mega colon and motility issues.

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My daughter also has EDS-the hypermobility kind- and has various issues with nerve disorders over the years- RSD, fibramyalgia type reactions to new drugs, GP. I think they are connected somehow. I've always felt that there is some "condition" that is causing all of the strange disorders that seem to be going on in the fight with her body.

I pray they will continue research and find a cure.

Good luck with your journey!

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My gitract is really messed up, my stomach doesn't work,its paralyzed and doesn't pump from severe gastroparesis. I started treating it with medications and botox inectons every 3 months intobthe pyloric valve, when those became more frequent, I had a g/j tube placed that failed ended in emergency gastric repair surgery and fighting for my life. I now have jtube and a power hickman central line. Also am on tpn. Also have cyclicvomiting syndrome. And yes there are unknowd diseases out there causing all of this. My doctor ebos a pediatric xpecialist agreed to take mycase and me on as a patient evevthough I'm an adult over the, ast year due tovhis specialty in rare childhood diseases that last a livetime and have no cure.he calls me miss complicated and claims I have this and that disease charscteristics but also a syndrome of my oen and we may never have the answer to that.

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My daughters genetics Dr said she has an unknown disease too. She's had botox in her bowel, it didn't work. I know they're finding new syndromes and gene mutations a lot and I'm hoping someday we'll have more answers.

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I have EDS hypermobility and gastroparesis. Mine is really aggravated by dislocating ribs that irritate the nerves in the thoracic region of the spine. If I can get massage and chiropractic treatments regularly to keep the ribs in place it helps tremendously, but I can't afford it often enough to completely control the pain and GP.

My EDS is really affected by hormones. I may have a week where I do fairly well, then it will all start up again. Usually the first sign of a flare-up is my shoulder dislocating, then my ribs. It's so painful to sleep at night because any pressure on my ribs will mess with the vagus nerve and I'll wake up retching. I have to sleep on my stomach or sitting upright most of the time.

Have you ever seen a physiatrist (pain management doctor) about trigger point therapy? It can help with EDS. Also if you haven't already done so, you might want to ask for ganglioside antibody testing to see if you have some autoimmune issues affecting the nerves to the digestive tract. That often starts after a viral infection that may seem unrelated and can cause the neuropathy you describe.

Have you ever read Dr. Tinkle's book on EDS? It's really good...you can get it from Amazon.

Jan

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Why do you think you have Mito? If I may ask?
Mito is a very serious disease with a lot of different symptoms. The cells can't produce enough energy anymore and the body starts to slowly fail with mito. Some children die fro it at a very young age, some only have some "autism" behaviours. Others have severe intestinal problems, failing livers, weird blood counts etc.
Do you have problems that point to mito? If so, you should really get some specialist to look at you.

I did follow a blog about a little girl with Mito and EDS, but I just saw it is closed for non-invited-readers. So I can't read it anymore. But anyway, some people have both the diseased apparently so I guess that is an answer to your question. But its very very rare.

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I have Classical Type EDS and way too many complicating diseases to even list, but many are GI, autoimmune, rheumy, spinal cord, etc. It's been a mess, it's obvious to everyone that I've been very sick and just hanging on for about 5 years now-- but they're all just guessing at what's wrong. I had never heard of mitochondrial disease before, but it's interesting how many symptoms overlap with my stuff as well. But I agree, it seems to be a very serious disease and mostly diagnosed in childhood (although not always). Can I ask why they think you might have this? What symptoms do you have that are leading them to suspect this?

Sounds like many of us have a bunch of pretty bad things in common. I've always wondered if many of the diseases/diagnosis that many of us end up with are somehow EDS-linked in some way. Over the past few decades I've seen way too many 'coincidences' with specific GI complaints, numerous autoimmune diseases, similar neuropathic complaints and much, much more.

Does anyone here also think there's more to the similarities than just the EDS diagnosis? I also find a lot of overlap b/t types of EDS (such as people w/Hypermobile type having Classical type features, etc.).

I'm curious why this mitochondrial disease was suspected. Could you please supply some more info??

Thanks!

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Here are some resources for learning about Mitochondrial diseases:
Mitochondrial Disease Action Commission www.mitoaction.org Education, Advocacy, and Support for people with Mitochondrial Diseases, their families, caregivers, educators, etc.

United Mitochondrial Disease Foundation www.umdf.org “To promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families”

Mitochondrial Dysautonomia and Functional Disorders Alliance www.curemito.org

The Mitochondrial Medicine Society www.mitosoc.org/blogs/diagnosis a Diagnosis and resource toolkit, including useful handouts for parents/patients/physicians, including “Mito 101”, “Mitoland, a handbook for
patients and parents,” and “Mitochondrial Myths.”

My GI problems are secondary to Mito (confirmed dx by muscle biopsy, maternally inherited Mito). My youngest child passed away due to complications from Mito. My 13 y.o.DS also has a Mito dx, and my 12 y.o.DD is asymptomatic. Feel free to PM me if you have any questions not answered in the resources I listed.

Good luck,
HeidiC

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How is EDS diagnosed? I have very loose joints- my thumb pops in and out very easily, fingers bend backwards, I can pull my thumb over the back of my hand and touch the back of my wrist with it (so could my dad: it used to be my party trick). I also had problems with my hip coming out of joint- I would have to grasp my thigh and pop it back in. Have sprained ankles and wrists more times than I can count.
On a strange side note- my daughter trained with a Mongolian Contortionist for two years and performed with a professional circus.

If you do have mito disease, it is not unusual that you would not be diagnosed with it, because it is rare enough that most doctors have no experience with it.

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Wendy

You have to go to a geneticist doctor, but you can also test yourself

There is the beighton test: http://www.shoulderdoc.co.uk/article.asp?article=645
And the Bulbena test (which I can't find in english right now)

http://www.medicinenet.com/ehlers-danlos_syndrome/article.htm

It sounds like you have loose joints, so you might have it.

I have EDS (they aren't sure which type, it's Hypermobility or Classical), I can walk about 20 meters. Can walk on (sub)luxated joints. my hips, ankles, patellas, wrists and fingers pop out on an hourly basis, I have a lot of teared tissue around some joints. I occasionally have a misplaced disc in my spine, had 2 bankart repairs on my right shoulder and I have popped one of my left ribs completely out last month (stomach height) OUCH.

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I popped one of my ribs out last year. I was kneeling down on the beach and a wave came in so I jumped up and it popped! I lay on the sand gasping for about five minutes. It apparently popped back in but man, did it hurt. I had it xrayed and it was okay, but everyone always mentions the scoliosis on my xrays, MRI, etc. I had two pinched nerves in my neck requiring traction as a teenager- not sure if that would be considered a related thing or not. I have a lot of intermittent pain in my neck and have been on a search for the past twenty years for the perfect pillow (still have not found it).
My knees hyperextend quite a bit, as do my elbows.
My dad was the same way, and I have one daughter who also has very loose joints.

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did you do the tests? There are different types of EDS so the test might be negative. http://en.wikipedia.org/wiki/Ehlers–Danlos_syndrome

Anyway, one of the symptoms is fatigue, funny how that is a symptom of GP also. I also think the GP (maybe yours as well?) can be secundairy to EDS.

And still, with all the painful popping joints, wheelchairs and braces I think the GP is way more annoying to have!

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I did the test kind of casually, and yep- have all of that, although not as much now at 56 as I did when younger (you get stiffer as you get older). If I do have it it would be a light case, though, since I never needed braces, etc.
The funny thing is, although both of my daughters are pretty flexible, the one with the extreme joint looseness is not the one who was the contortionist. That one is more flexible in her elbows and her back was perfect for contortion. She did the type of contortion you see in Cirque du Soleil, in fact, a couple of girls she trained with or competed against in rhythmic gymnastics are now in Cirque du Soleil.

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The reason why I'm thinking mito is I wasn't thinking mito I had nevrr heard of it just like eds n gsdtroparesis until my doctor told me I had them along with dysautonomis, acetubulae protrusio,pituitary michroadenoma,califications of tge ribs,n yhe thing where there are antibodies on my platelets attacking them, and the numerous bone marrow biopsies due to depleted blood counts n blood counts that refuse to come in even low normal range.the numerouse tube placements,gastric repairs,central line n port placements,total hip replacement at age 26 w thr other one needing to be done no later then age 29 . My liver is enlarged and showing signs of failing, I was in complete kidney failure for months but with the power of prayer they are stable. Why I? D having mito bacause my physician who specislises in eds n rare childhood diseases ges a pediatrician suggested I had it n its playin a role had muscle biopsues taken awaiting results yes I know chikdren can die from it but also csn live and lead normal lives.

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