tag:blogger.com,1999:blog-6390441292756538494.post3104688265096457319..comments2024-03-27T01:10:45.967-04:00Comments on Living with Kennedy's Disease: Why is my CPK Count so High?Brucehttp://www.blogger.com/profile/17127100017051232292noreply@blogger.comBlogger126125tag:blogger.com,1999:blog-6390441292756538494.post-12012096916611125272019-03-16T05:00:00.506-04:002019-03-16T05:00:00.506-04:00Hi carlos ,Iam currently in a similar situation ,w...Hi carlos ,Iam currently in a similar situation ,what was the outcome ?,i need some help ,thank you and I apologize for the inconvenience ,hope everything went well.Marcoshttps://www.blogger.com/profile/07864660316187828398noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-78604768726088571082019-03-16T04:52:55.128-04:002019-03-16T04:52:55.128-04:00Hi Linda ,what was the outcome ,i need some help ,...Hi Linda ,what was the outcome ,i need some help ,thank you ans I apologize for the inconvenience ,hope evrything went well.Marcoshttps://www.blogger.com/profile/07864660316187828398noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-85527579869759216142018-09-08T20:02:00.043-04:002018-09-08T20:02:00.043-04:00Hi, can anyone tell me that is there any relations...Hi, can anyone tell me that is there any relationship between steroids ( testosterone cypionate, trenbolone)and CK ?????..I just started to take them to lose fat & weight faster because I am 30 years old with 112 kg in weight. Before starting steroids I had normal CK level ( < 190). But last week it was 1800 and this week 9000. plz suggest me should I stop taking steroids.....Anonymoushttps://www.blogger.com/profile/12969690507862447897noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-56774616132968449992018-08-08T19:54:21.246-04:002018-08-08T19:54:21.246-04:00Hi I have just come out of hospital with the same ...Hi I have just come out of hospital with the same I have a chest infection though and my Leo’s were very high nearly 7000 let me go home when they were 2500. Still very poorly though muscle aches fatigue not good. Are you ok now?Michellehttp://uknoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-32421973355352780702018-08-02T17:10:20.321-04:002018-08-02T17:10:20.321-04:00My ck has been high for more than 10 years 340 las...My ck has been high for more than 10 years 340 last week I Know I am losing my muscle tone and feel weak theses days. Pain every day. Waiting to go for nerve conduction studies. I am 53 what is going on?<br />Feel very tired and struggle to get up in morning.jackhttps://www.blogger.com/profile/13159094152475025266noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-32656679985932759072018-04-10T14:27:00.113-04:002018-04-10T14:27:00.113-04:00Check out this webpage on the KDA site: https://w...Check out this webpage on the KDA site: https://www.kennedysdisease.org/index.php/about-kennedys-disease/what-is-kennedys-disease/symptomsBrucehttps://www.blogger.com/profile/17127100017051232292noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-64892824339906285882018-04-10T13:45:45.236-04:002018-04-10T13:45:45.236-04:00For years I have had high CK levels, and recently ...For years I have had high CK levels, and recently was tested at 4,900. Concerned and scared. Doctor has ordered an EMG to test for MD, but I worry that it will not reveal anything. Every other test has come back negative, and I really could use answers. What are the other symptoms of Kennedy's Disease? Is it something that I should look into with my neurologist?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-72012572673823241882017-11-26T23:29:42.129-05:002017-11-26T23:29:42.129-05:00Im.very concerned my 22 yrs old son hospitalized w...Im.very concerned my 22 yrs old son hospitalized with cpk level of 400,000 he's now 33,000,pray he doesn't have any permanent damage Anonymoushttps://www.blogger.com/profile/09777748656110710023noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-55938730163442786252017-09-28T01:51:21.401-04:002017-09-28T01:51:21.401-04:00Hi, a 12 year old boy have CPK value 2500 and he c...Hi, a 12 year old boy have CPK value 2500 and he can not stand up his self, is there any treatment or solution for this problem Anonymoushttps://www.blogger.com/profile/09779292403405534713noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-35997463995652787822017-09-14T08:52:49.016-04:002017-09-14T08:52:49.016-04:00My 4 year old son is having CPK 1300 u/l he is hav...My 4 year old son is having CPK 1300 u/l he is having excessive pain in his legs right from the thigh upto his toes he is unable to stand without any support kindly adviceKailash Sahunoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-22508352108575210652017-06-07T15:06:19.656-04:002017-06-07T15:06:19.656-04:00I haver a CK value of 149 and have had muscle weak...I haver a CK value of 149 and have had muscle weakness for about 10 months. I am a 44 yr old white female and have had to give up playing piano due to forearm weakness. Sometimes driving is even difficult. I have mild peroneal foot drop in left foot as found on EMG. My neurologist says I am okay, but my quality of life sucks these days. My muscles get so tired just walking to the trash or vacuuming my house these days. Any ideas??Laurahttps://www.blogger.com/profile/11414841488435541501noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-61578484704938958322017-04-14T17:48:51.679-04:002017-04-14T17:48:51.679-04:00Ask you hematologist if mastocytosis has been rule...Ask you hematologist if mastocytosis has been ruled out special stains are used in bmb slides ClRinNYhttps://www.blogger.com/profile/07647243365299191473noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-20348667437079734662017-02-28T13:19:57.686-05:002017-02-28T13:19:57.686-05:00I'm in the hospital now my cpk level was 7000 ...I'm in the hospital now my cpk level was 7000 now it's below 2500 after getting bicarbonate ivsNealnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-75631038844086554002017-02-21T07:18:05.157-05:002017-02-21T07:18:05.157-05:00Help!!I have had severe pain in hips and thighs co...Help!!I have had severe pain in hips and thighs constantly for 15 months. I had MRI on spine and told that was problem but it now appears not the case. I am 47 and up until the time I got these pains I cycled 30 miles a week lifted weights and played football. Felt like superman but now can't do any of these. But my pain is worse than ever and my CK levels have risen slot. It is affecting my life. I had another MRI on hips and pelvis. Get results next week. Just want this pain to stop.Anonymoushttps://www.blogger.com/profile/16265446293461039386noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-57479265777125240652017-01-16T20:39:21.646-05:002017-01-16T20:39:21.646-05:00On 12-16-16 I was rushed to the hospital after dur...On 12-16-16 I was rushed to the hospital after during my sleep my entire right leg tripled in size and pain doesn't begin to cover it. My CK was 34,500. Yes that's the correct level. After 80 mg of prednisone it finally lowered. My entire leg feels rotten the pain is so bad. I had a muscle biopsy on the 28th of Dec. It still hasn't closed. The Rheumatologist dx'd me with a diabetic muscle infarction but I have know idea who to listen to and I'm an LPN!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-27159821730358441002017-01-02T19:32:00.157-05:002017-01-02T19:32:00.157-05:00I have a high ck level about 9500 my right thigh m...I have a high ck level about 9500 my right thigh muscle is shrink about one an half diagram had a muscle i had all tests but mystery no idea which disease i have i got weakness in my both thighs all the timeAli Ahmedhttps://www.blogger.com/profile/14511609425068481358noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-4942278851978038792016-11-06T02:25:03.852-05:002016-11-06T02:25:03.852-05:00My tests showed 570,I ride the bike at the gym and...My tests showed 570,I ride the bike at the gym and walk both 3 times a week for 60 minutes,but not any hard training. I have chronic kidney disease G.F.R. 60 and do not know if it is exercise or kidneys.I have a blood clot in one lung and told not to stop exercising or clot will get worse.Lindawhttps://www.blogger.com/profile/08199293057579853755noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-48374354006628125452016-10-17T13:12:49.762-04:002016-10-17T13:12:49.762-04:00I went to the gym the night before I was going for...I went to the gym the night before I was going for blood work. My ck levels came back that they were >10,000 is this normal for after a workout? Or should I be worried it's something moreKrishttps://www.blogger.com/profile/07424760612919537851noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-69877508409359068242016-10-05T09:57:07.515-04:002016-10-05T09:57:07.515-04:00My husband has a CKP level of 900 It has been 1400...My husband has a CKP level of 900 It has been 1400 when on Statins. Which he now has stopped taking. He has regular blood test and being monitored by GP.<br />What affect can he expect with high CKP levels Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-82394386526016803092016-09-07T10:07:25.698-04:002016-09-07T10:07:25.698-04:00Im 29 years old everytime a play basketball ect. I...Im 29 years old everytime a play basketball ect. I get real sore and sick. for over ten years this has been happening recently i was out playing with my 4 and 5 year old and same thing happened. Next day my urine looked like cranberry juice so i went to the dr. I had ck level of 49000. He sent me to a neurologist which my ck level was 18000. He sent me to university of utah where they see this more often. Took them 2 months to get me an appointment. They did the same test which was 9000 they said its dropping but they set up a muscle biopsy 2 wekks out. They said they think its metabolic myopathy. But why are they prolonging the tasts should i be concerned of having high ck levels. They said to continue work but i feel like crap every day and some days i dont think im going to make it. Thanks for reading this.Anonymoushttps://www.blogger.com/profile/18012074589326497546noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-49133365092186145382016-08-28T18:38:19.937-04:002016-08-28T18:38:19.937-04:00Everyone reports symptoms but I haven't read o...Everyone reports symptoms but I haven't read one person say what the diagnosis is for the reason of the high CPK or what it is caused from, or the cure????Anonymoushttps://www.blogger.com/profile/03577168691801852985noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-85751215466099995512016-08-26T14:20:08.365-04:002016-08-26T14:20:08.365-04:00I decided to get a routing blood test done after m...I decided to get a routing blood test done after my first week of gym after seveal months and the results showed that my cpk levels were 21500, it returned to normal after about 12 days of drink 4 liters water each day and no workouts ... <br />took a few weeks off and started back gym last week, did another test and it was 3500.. my kidneys and liver function normally and I have no pain or swelling and I have no strange symptoms.<br />I will continue to go to the gym and monitor my cpk levels as my body gets used to the workouts and the muscles are damaged less and less each time.Nasirnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-40336756563021854422016-08-26T08:10:17.839-04:002016-08-26T08:10:17.839-04:00He might be suffering with Polymyositis and the sy...He might be suffering with Polymyositis and the symptoms like swelling in forearms and hind limbs,rashes, morning stiffness,joint pain.Through MRI and muscle biopsy u can confirm it. Better consult good a Rheumatologist. Steroids are used in this case...shttps://www.blogger.com/profile/10246822733624137174noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-40205211414693965752016-08-25T21:48:55.533-04:002016-08-25T21:48:55.533-04:00My nephew's best friend was just hospitalized ...My nephew's best friend was just hospitalized and his CPK levels were at 9000. Reading through the comments, I did not notice that anyone here has reported such high levels.<br /><br />He's a collegiate football player and he also practices MMA. His arm became incredibly swollen and he had to go to the ER. The week prior he suffered a concussion. <br /><br />After reading through info here, some of what you guys have discussed here has shed a lot of light on an condition that I had no idea existed. <br /><br />He lifts heavy weights. He plays full contact sports. Damage was inevitable. My nephew does the same but has no suffered any similar effects. <br /><br />I am worried because I've never seen anyone report levels as high as 9000.<br /><br />Any feedback?Concerned Unclehttps://www.blogger.com/profile/02134005074294906262noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-1257462165351220782016-08-15T17:49:09.898-04:002016-08-15T17:49:09.898-04:00I have high cpk as well (1500 to 11,000). I also ...I have high cpk as well (1500 to 11,000). I also have muscle loss / weakness to go along with it. I see it mostly on my right side but it is also happening on my left as well. It is impacting my ability to walk. I saw a bunch of doctors years ago when we first noticed it. Had lots of tests but all came back negative. Neurologist in Boston say its MD even though the MD tests came back negative. I stopped going to doctors years ago due to no info and it was getting frustrating and expensive. Recently started looking online because symptoms are getting worse and came across this site. Has anyone else had symptoms like mine? Help!!! BillAnonymousnoreply@blogger.com