Guest guest Posted December 13, 2007 Report Share Posted December 13, 2007 Hi Sharon.Thanks!I am ok.I dont know what is going on but I choose to be mostly in denial.lol.My mom reminded me that miracles happen everyday And to keep my faith and fight. And some how it will be ok.I luv my mom!The definiton says that Ischemic testing is used in evaluation of pts w/suspected McArdle disease and the levels lok for mitochhondrial myopathy.I cant even keep up!Lol.Like a glucogen storage disease.This is way over my head.lol. hugz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 Let me get this straight - I am the slow one here with medical mumble jumble - they don't know what is wrong so they are using you as a lab rat and a pin cushion on a fishing expedition. Am I in the ball park? Re: Re: Cardio Visit Hi Sharon.Thanks!I am ok.I dont know what is going on but I choose to be mostly in denial.lol.My mom reminded me that miracles happen everyday And to keep my faith and fight. And some how it will be ok.I luv my mom!The definiton says that Ischemic testing is used in evaluation of pts w/suspected McArdle disease and the levels lok for mitochhondrial myopathy.I cant even keep up!Lol.Like a glucogen storage disease.This is way over my head.lol.hugz No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.17.1/1183 - Release Date: 12/13/2007 9:15 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 Hi nne.Thanks! I am ok. Or will be ok. One of the 2.lol. Thankyou for all the prayers.They mean alot. luv you! cassy Cassy, I am so sorry that you are worse. My heart goes out to you. You remain in my prayers. Hugs nne On 12/13/07, payngabbyaol <payngabbyaol> wrote: I seen the cardio.He ordered me a walker with a seat and I got it already!He said I am worse,and my muscles dont stop contracting and im very rigid.He said alot of my symps are like parkinsons.I am having Ischemic testing next wk and soon muscle biopsy,he thinks it may be a rare muscle disease.He needs to speak with the neuro,hes in India so he will email him and when hes back in jan I will see him.My eye has a blind spot and I guess I didnt realize since I compensate with my other eye.hugz,cassy -- Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.htmlAnxiety Depression and Breast Cancer http://health.group.yahoo.com/group/AnxietyDepressionandBreastCancerAngel Feather Loomerwww.angelfeatherloomer.blogspot.comCheck out my other ornaments at www.geocities.com/chucky5741/bcornament.htmlThe Cancer Clubwww.cancerclub.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 Hi Trista! Thankyou! I have been praying alot. And I pray for you too. How are you feeling? luv n hugz cassy I'm still praying for you sis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 Better, now that I'm back on the LDN. hugs, Trista---- payngabby@... wrote:>Hi Trista! Thankyou! I have been praying alot. And I pray for you too. How are you feeling?>luv n hugz >cassy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 Thanks Sharon! I didnt know the 2 were connected.And ya.The reumo thought I had a MD,remember? The stupid neuro sent me there a few times cuz they insisted I have a reumo disease just cuz my dad did.I had the cardio send me the reports from seeing him.There is alot of interesting stuff in it.He says I have elements of dysautonomic dysfunction but also feels I have additional problems relating to the group III and group IV afferents from skeletal muscles .? hugz I found a link for you to see: http://www.muscular-dystrophy.org/information_resources/factsheets/medical_conditions_factsheets/mcardles.htmlRemember when the docs were thinking something about Muscular Dystrophy? Now this link is on an MD website. Did you know there was a connection of some sort? I'm going to go ahead and copy and past the info here for you. Tell me if you think this fits you. I'm glad you have your mom! Miracles DO happen! I'm praying for you every day, Cassie.loveSharonWhat is McArdle’s disease? McArdle’s disease is a metabolic muscle disorder first described in 1951 by Dr McArdle. The disorder is also called Glycogen Storage Disease Type V (GSD V). People born with McArdle’s disease are unable to produce an enzyme called muscle phosphorylase. This enzyme is important in producing the fuel source required by the skeletal muscles for exercise. To Top What are the symptoms? People with McArdle’s disease develop severe muscle pain and fatigue in the first few minutes of exercise. If exercise is continued despite the pain, a severe muscle spasm or contracture will develop. This results in muscle damage leading to myoglobinuria, a dark discolouration of the urine. Many people with the condition remember painful symptoms from early childhood but the disorder is rarely diagnosed before adulthood. Some people notice a worsening of their symptoms in middle-age and this may be accompanied by some muscle wasting, especially over the shoulders and back. Most people live normal lives and learn to improve their exercise tolerance using a “second wind”. To Top What is a second wind? There are two types of exercise: aerobic exercise includes walking, gentle swimming, jogging and cycling. Anaerobic exercise is more intense or sustained exercise and includes running, walking uphill and carrying loads. The first few minutes of any exercise are usually anaerobic. Normally, during anaerobic exercise, muscle phosphorylase converts glycogen (stored starch) to glucose (sugar). The glucose enters a metabolic pathway known as the glycolytic pathway, which ultimately produces ATP (energy). During aerobic exercise, the main energy source comes from free fatty acids carried in the blood stream. These fatty acids enter a different metabolic pathway, called oxidative phosphorylation, which takes place in the mitochondria (these are the power houses of the cell) the end result is the production of ATP. A second wind is like a key opening the door, enabling exercise without pain for people with McArdle’s disease. After a few minutes of exercise when pain occurs, if the individual rests for a moment or two, exercise can be continued without severe pain. The second wind probably results from a switch in metabolic pathway from the glycolytic pathway to oxidative phosphorylation. To Top Which muscles are affected? Any skeletal muscle is affected. Usually walking brings on symptoms in the legs and carrying heavy shopping affects the arms. Sawing, digging or squatting may affect the back muscles and some people develop pain eating chewy foods. To Top How is McArdle’s disease diagnosed? A blood test will usually reveal a raised muscle enzyme known as creatine kinase (CK). Sometimes a forearm lactate test is performed, although this is not essential. The diagnosis is confirmed by a muscle biopsy, which shows an excess of glycogen and absence of the muscle enzyme phosphorylase. In up to 85% of patients from Northern Europe, an abnormality in the gene encoding for muscle phosphorylase, called R50X (previously known as R49X), can be detected on a DNA test (blood test). In practice such testing is rarely helpful and not always available and is not essential to make the diagnosis. To Top Is there any treatment? The ability to develop a second wind is greatly increased by keeping physically fit. Taking regular gentle aerobic exercise, such as walking is important. At the start of exercise, when pain occurs, slow right down or stop until the pain has subsided, then try again. Sustained or severe exercise, such as weight lifting, or sprinting, must be avoided because of the high risk of muscle damage. Continuing to exercise in the presence of severe pain will also result in muscle damage and myoglobinuria, which will in turn increase the risk of acute renal failure. Many different diets and supplements have been tested in McArdle’s disease such as high protein diet, vitamin B6 and creatine supplements, as yet there is insufficient evidence to suggest that any of these benefit people with McArdle’s disease. There is some evidence to suggest that a sugary drink prior to planned exercise might help. This however, needs to be balanced against excessive weight gain, which should be avoided at all cost. Carrying increased weight will lower your body’s aerobic threshold and make exercise more difficult. Keeping aerobically fit is the best way to condition McArdle’s muscles to improve performance and improve quality of life. To Top What happens if myoglobinuria occurs? Most people with McArdle’s disease will develop myoglobinuria at some time in their lives. Myoglobinuria is a dark discolouration of the urine from a red- brown colour (mild) to a brown-black colour (severe). This is a warning sign for acute renal failure, which can occur if severe muscle damage has occurred. If this happens the kidneys stop producing urine because the draining tubules become blocked with the products of muscle breakdown. If the episode of pain and contracture was not too severe myoglobinuria will be transient and lighter in colour. After more severe episodes the muscles may be swollen and tender and there may be flu like symptoms. Minor symptoms are managed by increasing fluid intake to maintain a good urine output. More severe episodes will require an admission to hospital for intravenous fluids and if kidney failure occurs, a period of dialysis may be required. Kidney failure is almost always reversible, but expert treatment is required immediately to prevent complications during the acute stage. It is, therefore, very important to seek medical help early should any of these symptoms occur. To Top Are there any other precautions? There is a reported risk of acute muscle damage, with certain general anaesthetics (usually muscle relaxants and inhaled anaesthetics), although in practice problems appear to be very rare. The anaesthetist should be made aware of the diagnosis of McArdle’s disease, and may choose to avoid certain anaesthetic agents. Tourniquets should not be used during operative procedures in patients with McArdle’s disease.Affected women do not seem to be disadvantaged by pregnancy or childbirth. A natural childbirth is a realistic possibility for women with McArdle’s disease. To Top Will I become disabled? McArdle’s disease does not affect life expectancy. Some people do notice a slow deterioration in their symptoms over many years but by far the majority of people remain independent and able to walk. To Top Can it be passed on to my children? The condition is caused by a recessive gene. This means that one abnormal copy of the gene is passed from each parent to the affected child, who in turn will have inherited two abnormal copies of the gene. The risk for both carrier parents to have an affected child is 1:4 for each pregnancy.People who have McArdle’s disease do not usually pass the condition onto their own children because one normal copy of the gene will have been provided by their partner. However, all of their children will be carriers. Generally speaking carriers do not have symptoms. This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Re: Re: Cardio Visit Hi Sharon.Thanks!I am ok.I dont know what is going on but I choose to be mostly in denial.lol.My mom reminded me that miracles happen everyday And to keep my faith and fight. And some how it will be ok.I luv my mom!The definiton says that Ischemic testing is used in evaluation of pts w/suspected McArdle disease and the levels lok for mitochhondrial myopathy.I cant even keep up!Lol.Like a glucogen storage disease.This is way over my head.lol.hugz Looking for last minute shopping deals? Find them fast with Yahoo! Search. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 No Idea.lol.It says alot more.It also says during slow deep inspiration she showd very litle sinus arythmia and variation in HR was.4 beats a min which is lower then the expected average.And I also performed a isometric tst on her and she wasnt able to elevate her BP,in fact she wasnt able to generate suficient power,which may account for bp resonse.I wish I had a scanner.There is more,I dont understand it.lol. Do you understand what that means? The group III and IV stuff? Sharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Re: Re: Cardio Visit Hi Sharon.Thanks! I am ok.I dont know what is going on but I choose to be mostly in denial.lol.My mom reminded me that miracles happen everyday And to keep my faith and fight. And some how it will be ok.I luv my mom!The definiton says that Ischemic testing is used in evaluation of pts w/suspected McArdle disease and the levels lok for mitochhondrial myopathy.I cant even keep up!Lol.Like a glucogen storage disease.This is way over my head.lol.hugz Looking for last minute shopping deals? Find them fast with Yahoo! Search. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Im glad to hear that. When did you go back on it? And how were you without it? hugz,cassy Re: Re: Cardio Visit Better, now that I'm back on the LDN. hugs, Trista ---- payngabby@... wrote: >Hi Trista! Thankyou! I have been praying alot. And I pray for you too. How are you feeling? >luv n hugz >cassy #AOLMsgPart_2_f7ac2203-33ad-4dd8-906a-1c983ae88bc7 #AOLMsgPart_2_f7ac2203-33ad-4dd8-906a-1c983ae88bc7 #AOLMsgPart_2_f7ac2203-33ad-4dd8-906a-1c983ae88bc7 ________________________________________________________________________ More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Thanks Peggy! Your so sweet!Big hugz for you too! Yes.I have done PT. I had to see some special neuro pt cuz the other ones said they didnt know how to help me.?My pt was very limited,didnt seem to help but I still do the stretches and exercises.They are mostly done laying down,helps some but is so tiring. I think I would call my shaking tremors.The neuro called them tremors,then the cardio said they were rigid and that my muscles dont stop contracting.I have symptoms that fill a whole page.And unfortunely they are a pain in the a** every day. The thing with the tremors though almost looks like a seizure since its in my arms,legs,hands,feet,and low back.It jus jerks and hurts like hell and my back feels like its cripling over and it also jerks.To be honest I dont know what they are I thought they were spasms til it got a little worse.I take baclofen and I read about 1 of those muscle diseases and how the baclofen makes it worse.I dunno.luv ya cassy Re: Cardio Visit ((((Cassy)))) I wish I was there to give you a real hug, a nice long bear hug!!!! This is scary news, but don't jump to any conclusions until you know for sure. My Dad has Parkinsons and he shakes so I'm confused as to the part about you being rigid and your symptoms being like Parkinsons. Maybe once they know what you are up against they will know better how to treat it. Have you ever done any physical therapy at any time during all of this? That may help you as well. As for the walker with a seat, I'm glad that it came to you so quickly, but sure wish you didn't need it. Praying for you and always here for you. Love ya Peggy > > I seen the cardio.He ordered me a walker with a seat and I got it already!He said I am worse,and my muscles dont stop contracting and im very rigid.He said alot of my symps are like parkinsons.I am having Ischemic testing next wk and soon muscle biopsy,he thinks it may be a rare muscle disease.He needs to speak with the neuro,hes in India so he will email him and when hes back in jan I will see him.My eye has a blind spot and I guess I didnt realize since I compensate with my other eye. > hugz,cassy > #AOLMsgPart_2_dc412a3d-e653-47e2-bddc-d488f8b71ead #AOLMsgPart_2_dc412a3d-e653-47e2-bddc-d488f8b71ead #AOLMsgPart_2_dc412a3d-e653-47e2-bddc-d488f8b71ead ________________________________________________________________________ More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 It's really cheap to get, but I like getting several months worth at a time, to save on shipping. No reason to pay $5.95 for just 30 pills, when I can get several months worth, for the same $ I couldn't afford it when I needed to re-order, so I decided (silly me) to just not take it, and see if I notice any problems. I was off it for a month, and in pain all month. Before that, my pain was tolerable. I've been back on it for a few weeks now. ---- payngabby@... wrote:>Im glad to hear that. When did you go back on it? And how were you >without it?>hugz,cassy>>> Re: Re: Cardio Visit >>>>>>>>>> >>>Better, now that I'm back on the LDN. hugs, Trista>---- >payngabby@... wrote:>>Hi Trista! Thankyou! I have been praying >alot. And I pray for you too. How are you feeling?>>luv n hugz >>>cassy>>>>>>> >>>>>> >#AOLMsgPart_2_f7ac2203-33ad-4dd8-906a-1c983ae88bc7>> >#AOLMsgPart_2_f7ac2203-33ad-4dd8-906a-1c983ae88bc7>> >#AOLMsgPart_2_f7ac2203-33ad-4dd8-906a-1c983ae88bc7>> >________________________________________________________________________ >More new features than ever. Check out the new AOL Mail ! - >http://webmail.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 No More not taking it! Ok?! Lol. I hate pain,sorry you were suffering. Im glad its getting better. hugzzzzzzzzzzzzzzzzzz(thats a big gigantic humongous hug!) Re: Re: Cardio Visit > > > > > > > > > > > > >Better, now that I'm back on the LDN. hugs, Trista >---- >payngabby@... wrote: >>Hi Trista! Thankyou! I have been praying >alot. And I pray for you too. How are you feeling? >>luv n hugz > >>cassy > > > > > > > > > > > > > >#AOLMsgPart_2_f7ac2203-33ad-4dd8-906a-1c983ae88bc7 > > >#AOLMsgPart_2_f7ac2203-33ad-4dd8-906a-1c983ae88bc7 > > >#AOLMsgPart_2_f7ac2203-33ad-4dd8-906a-1c983ae88bc7 > > >________________________________________________________________________ >More new features than ever. Check out the new AOL Mail ! - >http://webmail.aol.com #AOLMsgPart_2_dfe3393d-aa8a-4f26-9555-f3bddcf41bf5 #AOLMsgPart_2_dfe3393d-aa8a-4f26-9555-f3bddcf41bf5 #AOLMsgPart_2_dfe3393d-aa8a-4f26-9555-f3bddcf41bf5 ________________________________________________________________________ More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 I learned my lesson! For sure. Sweet dreams. I am off to snuggle under my many blankets. hugs, Trista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 Well. Forget em! There only doctors so they can get paid for it! Lol. Lol. I have filed already.Ahhhh.lol. My phone interview is on the 18th. I signed 17 medical release forms! No wonder why people get a lawyer before they even apply. Im nervous for the phone interview.Dont know what to expect.I hate that. I like to be prepared.lol. Im expecting to get denied.Oh.well. I will get a lawyer there gonna have to approve us eventually. hugz,cassy I learned my lesson! For sure. Sweet dreams. I am off to snuggle under my many blankets. hugs, Trista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 Your not slow! My dx process is.lol. Well. Im lucky enough that they havnt taken me as there lab rat.lol. But I have had tons of tests. Im lucky my insurance hasnt kicked me out.My neuro thought I had Devics disease(like ms)then I got 3 opinions for that and it wasnt that.Then 1 of the idiot specialists thought it was a reumo thing cuz my dad had 2.Well,aftr getting all that ruled out and bouncn around I landed in a neuro genius arms.He figured me out.Autonomic dysfunction.Then I was sent to a cardio and hes findn out more as we go along.So,more to come.lol. hugz,cassy Re: Re: Cardio Visit Let me get this straight - I am the slow one here with medical mumble jumble - they don't know what is wrong so they are using you as a lab rat and a pin cushion on a fishing expedition. Am I in the ball park? Re: Re: Cardio Visit Hi Sharon.Thanks!I am ok.I dont know what is going on but I choose to be mostly in denial.lol.My mom reminded me that miracles happen everyday And to keep my faith and fight. And some how it will be ok.I luv my mom!The definiton says that Ischemic testing is used in evaluation of pts w/suspected McArdle disease and the levels lok for mitochhondrial myopathy.I cant even keep up!Lol.Like a glucogen storage disease.This is way over my head.lol. hugz No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.17.1/1183 - Release Date: 12/13/2007 9:15 AM #AOLMsgPart_2_e345d028-1cad-4561-98b7-b2263781207f #AOLMsgPart_2_e345d028-1cad-4561-98b7-b2263781207f #AOLMsgPart_2_e345d028-1cad-4561-98b7-b2263781207f ________________________________________________________________________ More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com Quote Link to comment Share on other sites More sharing options...
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