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drewswife

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Reply with quote  #1 

Hello all.  I am new to the message boards, but have been appreciating this site for many months now (thank you; thank you!).  My husband is newly diagnosed but has been suffering for four years.  The doctors are considering whether his CVS is mitochondrially related for a couple of reasons, and I am wondering if anyone who has mitchondrially-related CVS experiences joint pain.  One of the things that has continued to stump us is my husband's knee pain, other joint aches, and fatigue.  These symptoms began around the same time as the vomiting & nausea, and we've always wondered if they were related.  Any thoughts?

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LS

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Reply with quote  #2 
My son does not have this, but I met a young woman at a support group a few weeks ago with CVS who had terrible joint pain in her hands.  She asked us if this had occurred in our children.  That's the first time I had heard of it.  Maybe there is something else going on that causes the joint pain and CVS.

Lori
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typatricksmom

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Reply with quote  #3 

What are the symptoms that lead to a mitochondrial association with CVS? I have read some mitochondrial sites, and that seems so overwhelming. Do you do some sort of genetic testing to determine if it is mito related, and if so what would you treat diffrently?


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Linda
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klconner

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Reply with quote  #4 
The study of a mitochondrial link with CVS is still in it's infancy.  There are threads on all 3 forums about studies to take part in.  Those are quick and easy questionaires that will help establish a better idea about what having CVS means.  I have also submitted a silava sample to the study.  I did that at my CVS dr's office.  I don't know if that is available everywhere, but the surveys are.  Just take them here.
kate

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With perseverance, the snail made it on the ark.
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Reply with quote  #5 
I'm 23 and I experience joint pain in my back and neck right before I'm going to cycle. I've asked Dr. Feldman about it and he said he wasn't sure what it was caused by.

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Reply with quote  #6 
My son has experienced pain in his legs to the point he is often complaining and visably limping for days but can't point to an exact location were the pain is. The doctors so far can't find any swelling or cause for the pain. He also has pancreatic insufficiency with no underlying cause (like cystic fibrosis) which leads me to believe his problems might also be mitochondrial related.

Heather
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dave

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Reply with quote  #7 

My husband had severe chest pain last night. we thought it was heartburn or a heart attack- but it went away - so we think it was heartburn- today he woke up and he has terrible joint pain everywhere. He has no energy and is barely there.  I notice right before an episode he gets really tired- but the joint pain is getting worse.  He also has bad upper respitory cough that he keeps getting. I went to the conference and they mentioned GERD and POTS. I woncer if these things are causing these symptoms?? I hope everyone is well and has a good day


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dave digregorio
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dave

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Reply with quote  #8 
So we had every thing tested - like muscle formation and levels of everything and all that we got was a very low level of D. He was put on a very high dose for 12 weeks and then he just takes a supplement after that.  it could be the reason he was having all the muscle pain or weakness. We'll see. Don't know if it's his meds after all these years of taking such hard meds- but the rumetologist also said that thorazine ( which my husband takes) is a drug that is not used that often anymore because of a study that was done years ago and almost every patient on this drug ended up with neurological muscle problems.  Mostly involuntary muscle problems- just thought I'd let everyone know- because we did not know that.  And we are going to contact Dr. Fleisher with this and see if maybe this is the culprit of all the problems my husband has been having these past months. On the other hand- he got his COQ10 levels and Lcarnitine levels checked- and they were normal- but he has been taking alot of them recently- so the doctor told him he could stop- and after a day he went into an episode. I know it takes longer to get out of your system-he went back on them right away- and my theory is maybe he needs more in his system than a person with out CVS- because they are helping- he has more energy and has longer time between episodes.  really one of the only things that have helped him
good luck to everyone and hope todays a good day


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dave digregorio
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klconner

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Reply with quote  #9 
I have fibromyalgia, possibly CFS.  At least I was diagnosed with them pre CVS.  Who knows, at this point I don't care what you call it.  I think the 3 are just tangled up together. I have noticed that my muscle and joint pain has decreased a lot with the Co Q 10 and L-carnitine.  I seem to have more energy so I plan to keep taking them.
kate 

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With perseverance, the snail made it on the ark.
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Doc

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Reply with quote  #10 
I have had unexplained joint pain in my left knee and hip for years now. My knee started to hurt in high school, and my hip began to hurt a few years later. Xrays and MRI's have shown no abnormalities. I had one physical therapist tell me that my left knee cap doesn't lay right on my joint and that it is quite common in young women. He wasn't a doctor and no other docs have shared his opinion, so not sure if I should listen to that rather weird opinion. But now I just wonder if the joint pain is somehow connected to CVS.

Doc

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29 yr old veterinarian. Puke free for 1 year.
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moontears

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Reply with quote  #11 

My husband also complains about the joint pain.  He gets frustrated that every day he has a new complaint about some sort of physical pain or ailment.  His CVS was diagnosed in June after 2 years.  He also submitted a saliva sample while at McCallums office for the study.


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Amy - Loving wife of Jeff, CVS sufferer.
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drewswife

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Reply with quote  #12 
We can really identify with what you mentioned, Moontears, about the myriad of symptoms.  My husband describes it as a "revolving door"--if he isn't nauseous one day, then his knees are hurting or he's super fatigued.  This is what has made CVS so difficult for us; he rarely has a good day.

Robin--Does your husband still have a lot of chest pain?  Drew also suffered from terrible reflux but after starting to take Carafate Suspension, he has really experienced improvement in his esophagus.  I wanted to share this, in case others also have esophagus pain and/or bad reflux.
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AlexKidd

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Reply with quote  #13 
Last week my knee started aching for no apparent reason, its still quite tender but it feels like its been knocked but i know fine well that nothing happened to it as it came on when i was walking to work. Both of my wrists have been giving me jip too for possibly the last 8 months and again there is no apparent reason for it.

In regards to reflux, About two years ago before i went on holiday. I went to the doctors with severe pain in the left side of my chest and it sort of was in the top of shoulder too.

 I would sit up in bed because the pain was so bad that i couldnt lie down, i couldn't move at all i had to sleep sitting up. The doctor told me that my acid reflux was causing the pain and to take 'Gaviscon' and it worked.

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I am CVS FREE... well at least i thought so...
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dave

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Reply with quote  #14 
HI
Dave has had great success lately with his cocktail.  He has been getting sick only for about a week a month for 3 months now- which is amazing.  But - he was having horrible issues with his asthma which were causing him to get sick.  Went to many doctors including a pulminary specialist who found nothing wrong (what's new)- finally we are working with an allergist and she gave him cingilar ( an allergie med)and the first night he tried it he didn't wake up gasping for air. It has worked so great.  He is always sick (nauseaus) in the mornings. It takes him a good hour in the shower to get going. He is nauseas all day but can seem to get thru it. 
Hope everyone has a feeling good day
Robin

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dave digregorio
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mahler1987

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Reply with quote  #15 
Singular started out as the first asthma stabilizing med in oral form.  Since its development it has been discovered that it does well controlling allergies.  I am not surprized he was put on it.  I hope it continues to work well for him.  I used to take it for my asthma, but stopped it almost a yr ago and I am still doing well in that regard.

Pattie

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I may have CVS but CVS is not me.
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