Aa
I know the end is near.
Hi, all
First post on here.
Just wanted to share my experience with a disease/disorder which at this stage I feel will ultimately be fatal.
If nothing else I hope my experience will help someone else in the quest for a "cure" or at least a real diagnosis.
In the summer of 2000 I was a normal healthy 24 year old male with no previous health issues at all other than typical childhood illnesses and phneumonia. One morning I woke with abdominal cramps and what I would describe as a tingling sensation deep in my gut. An hour or so later I almost passed out due to the severe cramping pains. I went to a surgeon that could see me, as I suspected something serious. While the pains had subsisded to some extent I didn't feel right. Surgeon drew blood and took X rays. All came back normal and the doctor put me on Flagyl. Never did feel quite right while on the medication and when the meds were finished I had what I would call a withdrawl reaction. Extreme excess saliva production, tooth pain, metalic taste, dissyness, etc.
No additional digestive issues, and after a day these symptoms went away. Mild odd crampy abdominal pains continued. Approx. two weeks later nausea became overwhelming to the point where I could eat very little. A few days later the vomiting started and diarrhea followed. Went to doctor who refered me to a gastroenterologist. I became unable to keep solid foods of any kind in and at times could not keep water in.
Gastro ordered a number of labs, and upper/lower gi tests. All came back negative. Dr. put me on Librax as a short term measure. Librax was effective at calming the digestive system, but as the days went on I started producing more and more acid. The acid it seemed was making me sick. Next they added Prilosec and tried a number of other drugs similar to librax because they didnt want me taking lib long term. None of the other drugs (Levsin, bentyl, etc were effective) so they decided to put me on Lybrax long term. This was a very long several months of constant sickness. At one point I had lost 20% body weight from being so sick. the prilosec librax therapy became a normal and long term means of treatment. For approx. 4 years I would occasionally get very sick them get back to some state of normal. I always experienced a low grade fever for the first couple of years. Doctors said they didn't know what caused these issues, and they classified it as IBS.
Over the years the symptoms got better and the unexplained fever slowly went away. To take it's place came sinus and tonsil problems with a constant sore throat. Also tongue became fuzzy and light colored.
Around 2005 my back started tingling occasionally. Doctors were not sure what to make of this. Gall bladder test were done which showed no issues. Around this time I found that I could reduce the amount of Librax and not become sick. Prilosec was a must have in order to keep from being nauseated/sick, but I eventually eliminated the Librax.
As time went on my hands started to shake or tremor at times. And slowly my digestive symptoms changed to constipation / bloating which non of the treatments my gastro recomended did anything for. i started drinking mineral oil which was somewhat effective.
Lower and mid abdominal pains continued on and in 2008 I had a colonoscopy which showed nothing new and no abnormalities.
I had my tonsils removed due to recomendation from my ENT. they were always irritated and were suspected as part of the problem with swollen lymph nodes, etc.
I no longer had the tonsil issues but problems with sore throat, sinuses and swollen lymph nodes continued. Docs were no too concerned about the size and location of the nodes.
Early 2009 I started having pain in my left knee for no apparent reason. It would come and go, and the docs didn't see any reason for concern initially. The pain spread to include the other knee as well as my shoulders and some of the joints in my fingers. PCP sent me to a Rheumatologist who said that I needed Neorological and orthopedic tests to rule out structural issues, or MS, parkinsons, etc...
Orho did xrays and didnt see anything abnormal in any of my joints. Neuro did brain MRI which came back negative although they did say that there was "scarring" I was asked if I had had a head trauma at any point which I had not.
Insomnia seemed to come along with all this and it got to the point that I could not sleep at all. also started experiencing black lines under various finger nails. Went back to rheumatologist who seemed determined that it could not be any kind of rhreumatoid issue. Depression was suggested as an explanation. Tried a number of antidepressants which were not effective. I went to another rheumatologist who seemed to think the same thing or Fibromyalgia. Lyrica did nothing, doc then tried Flexeril which helped a great deal with sleep. A variety of odd pains come and go at times chest pains head pains, tingling in back, veins, etc.
Went o yet another Rheumatologist who also suspected depression or fibro or that I was someone looking for a gov check. I tried several meds which had no possitive effect at all. Also I had no reason to be depressed as everything in my life except my health was good.
Along with all these issues I had beed experiencing a lot of sexual problems as well as testicle pain. Urologist diagnosed the pain as a varicocele.
Along with the varicocele came a number of suddenly visible veins in various parts of my body. When I brought the vascualar symptoms to my docs attn. I was accused as being on drugs or having some pshchological issues. The docs dont' wake up to see my body everyday and told me that they saw nothing abnormal. yet the change was sudden and very noticable to me as well as friends and parents. The number of visible veins has doubled or tripled in my arms, chest, abdomen, lover legs, and feet. Docs still dismissed this as simply not possible and that I simply had very promenent veins
One morning just a couple of months ago I woke to find a maze of spider veins on my penis which were not there the day before. I decided to go to the Mayo Clinic in FL and see one of their docs. Doc did state that my symptoms were not typical of fibro and he was very familiar with some of my bizzare symptoms such as the burning tongue which is present at times. He as others also discounted the vascualar issues as well as what I can see as minor swelling below the kneecaps. His working diagnosis was central sensitization. He did want to perform a number of test including a pelvic CT, but I could not practiaclly afford the tests with all Mayo charges being out of pocket due to my insurance.
Not knowing what else to do, I went back to my urologist a few weeks ago. No one seems to know what really causes these issues so all I know to do is go after what I can see with my own eyes. The distended veins are very real and at this stage I can see them in the palm of my hands (a lot) when they are cold or hot.
My urologist was very concerned about the veins and the fact that I have a varicocele in both testicles. he said that this is not normal and indicates something serious. he sceduled me to see a thoracic surgeon and thats where I'm at at this stage. I now take Tramadol for the various pains as well as Flexeril which is somewhat helpful for sleep.
I've gort a bad feeling that whatever tests they do will come back negative as everything else has. This disease or whatever it can be called has been very progressive for me. At this point I really dont expect a good outcome, and I'm as prepared as one can be for death. It's frustrating to know that I may never know what is really killing me.
First post on here.
Just wanted to share my experience with a disease/disorder which at this stage I feel will ultimately be fatal.
If nothing else I hope my experience will help someone else in the quest for a "cure" or at least a real diagnosis.
In the summer of 2000 I was a normal healthy 24 year old male with no previous health issues at all other than typical childhood illnesses and phneumonia. One morning I woke with abdominal cramps and what I would describe as a tingling sensation deep in my gut. An hour or so later I almost passed out due to the severe cramping pains. I went to a surgeon that could see me, as I suspected something serious. While the pains had subsisded to some extent I didn't feel right. Surgeon drew blood and took X rays. All came back normal and the doctor put me on Flagyl. Never did feel quite right while on the medication and when the meds were finished I had what I would call a withdrawl reaction. Extreme excess saliva production, tooth pain, metalic taste, dissyness, etc.
No additional digestive issues, and after a day these symptoms went away. Mild odd crampy abdominal pains continued. Approx. two weeks later nausea became overwhelming to the point where I could eat very little. A few days later the vomiting started and diarrhea followed. Went to doctor who refered me to a gastroenterologist. I became unable to keep solid foods of any kind in and at times could not keep water in.
Gastro ordered a number of labs, and upper/lower gi tests. All came back negative. Dr. put me on Librax as a short term measure. Librax was effective at calming the digestive system, but as the days went on I started producing more and more acid. The acid it seemed was making me sick. Next they added Prilosec and tried a number of other drugs similar to librax because they didnt want me taking lib long term. None of the other drugs (Levsin, bentyl, etc were effective) so they decided to put me on Lybrax long term. This was a very long several months of constant sickness. At one point I had lost 20% body weight from being so sick. the prilosec librax therapy became a normal and long term means of treatment. For approx. 4 years I would occasionally get very sick them get back to some state of normal. I always experienced a low grade fever for the first couple of years. Doctors said they didn't know what caused these issues, and they classified it as IBS.
Over the years the symptoms got better and the unexplained fever slowly went away. To take it's place came sinus and tonsil problems with a constant sore throat. Also tongue became fuzzy and light colored.
Around 2005 my back started tingling occasionally. Doctors were not sure what to make of this. Gall bladder test were done which showed no issues. Around this time I found that I could reduce the amount of Librax and not become sick. Prilosec was a must have in order to keep from being nauseated/sick, but I eventually eliminated the Librax.
As time went on my hands started to shake or tremor at times. And slowly my digestive symptoms changed to constipation / bloating which non of the treatments my gastro recomended did anything for. i started drinking mineral oil which was somewhat effective.
Lower and mid abdominal pains continued on and in 2008 I had a colonoscopy which showed nothing new and no abnormalities.
I had my tonsils removed due to recomendation from my ENT. they were always irritated and were suspected as part of the problem with swollen lymph nodes, etc.
I no longer had the tonsil issues but problems with sore throat, sinuses and swollen lymph nodes continued. Docs were no too concerned about the size and location of the nodes.
Early 2009 I started having pain in my left knee for no apparent reason. It would come and go, and the docs didn't see any reason for concern initially. The pain spread to include the other knee as well as my shoulders and some of the joints in my fingers. PCP sent me to a Rheumatologist who said that I needed Neorological and orthopedic tests to rule out structural issues, or MS, parkinsons, etc...
Orho did xrays and didnt see anything abnormal in any of my joints. Neuro did brain MRI which came back negative although they did say that there was "scarring" I was asked if I had had a head trauma at any point which I had not.
Insomnia seemed to come along with all this and it got to the point that I could not sleep at all. also started experiencing black lines under various finger nails. Went back to rheumatologist who seemed determined that it could not be any kind of rhreumatoid issue. Depression was suggested as an explanation. Tried a number of antidepressants which were not effective. I went to another rheumatologist who seemed to think the same thing or Fibromyalgia. Lyrica did nothing, doc then tried Flexeril which helped a great deal with sleep. A variety of odd pains come and go at times chest pains head pains, tingling in back, veins, etc.
Went o yet another Rheumatologist who also suspected depression or fibro or that I was someone looking for a gov check. I tried several meds which had no possitive effect at all. Also I had no reason to be depressed as everything in my life except my health was good.
Along with all these issues I had beed experiencing a lot of sexual problems as well as testicle pain. Urologist diagnosed the pain as a varicocele.
Along with the varicocele came a number of suddenly visible veins in various parts of my body. When I brought the vascualar symptoms to my docs attn. I was accused as being on drugs or having some pshchological issues. The docs dont' wake up to see my body everyday and told me that they saw nothing abnormal. yet the change was sudden and very noticable to me as well as friends and parents. The number of visible veins has doubled or tripled in my arms, chest, abdomen, lover legs, and feet. Docs still dismissed this as simply not possible and that I simply had very promenent veins
One morning just a couple of months ago I woke to find a maze of spider veins on my penis which were not there the day before. I decided to go to the Mayo Clinic in FL and see one of their docs. Doc did state that my symptoms were not typical of fibro and he was very familiar with some of my bizzare symptoms such as the burning tongue which is present at times. He as others also discounted the vascualar issues as well as what I can see as minor swelling below the kneecaps. His working diagnosis was central sensitization. He did want to perform a number of test including a pelvic CT, but I could not practiaclly afford the tests with all Mayo charges being out of pocket due to my insurance.
Not knowing what else to do, I went back to my urologist a few weeks ago. No one seems to know what really causes these issues so all I know to do is go after what I can see with my own eyes. The distended veins are very real and at this stage I can see them in the palm of my hands (a lot) when they are cold or hot.
My urologist was very concerned about the veins and the fact that I have a varicocele in both testicles. he said that this is not normal and indicates something serious. he sceduled me to see a thoracic surgeon and thats where I'm at at this stage. I now take Tramadol for the various pains as well as Flexeril which is somewhat helpful for sleep.
I've gort a bad feeling that whatever tests they do will come back negative as everything else has. This disease or whatever it can be called has been very progressive for me. At this point I really dont expect a good outcome, and I'm as prepared as one can be for death. It's frustrating to know that I may never know what is really killing me.
An old old post but I wanted to share with everyone my real diagnosis after all these years (15) and dozens of doctors all over the country.
I'm double jointed
Yep just as simple as that.
Hypermobile people are prone to a syndrome. It goes by the name Hypermobility syndrome or Ehlers Danlos Syndrome.
There's no cure and average life expectancy is 48
Just thought I'd share.
And if you happen to be double jointed here's your answer.
I'm double jointed
Yep just as simple as that.
Hypermobile people are prone to a syndrome. It goes by the name Hypermobility syndrome or Ehlers Danlos Syndrome.
There's no cure and average life expectancy is 48
Just thought I'd share.
And if you happen to be double jointed here's your answer.
Well, there's some hope.
"Nutritional, Therapeutic Strategy for Ehlers–Danlos Syndrome"
Just do a search under this title.
Best,
Niko
"Nutritional, Therapeutic Strategy for Ehlers–Danlos Syndrome"
Just do a search under this title.
Best,
Niko
I'm already doing most of the recommended supplements.
Diet is very limited at this stage as my digestive system is shutting down. Meats and water seem to be the only somewhat tolerated food.
It doesn't even really matter anymore. Just so glad I got diagnosed before my clock counted down.
If anyone else here with "Fibro" is double jointed I suggest you read up on EDS
Diet is very limited at this stage as my digestive system is shutting down. Meats and water seem to be the only somewhat tolerated food.
It doesn't even really matter anymore. Just so glad I got diagnosed before my clock counted down.
If anyone else here with "Fibro" is double jointed I suggest you read up on EDS
You may want to look into IV nutritional therapy
If you can tolerate meat and water, try gelatin from grass-fed beef bones, slow boiled 48 hours and 24 hours for free range chicken bones, for a great way to get natural collagen. You will also benefit from all the minerals.
This will help also with digestive and gastro-intestinal issues.
Wishing you well.
Niko
If you can tolerate meat and water, try gelatin from grass-fed beef bones, slow boiled 48 hours and 24 hours for free range chicken bones, for a great way to get natural collagen. You will also benefit from all the minerals.
This will help also with digestive and gastro-intestinal issues.
Wishing you well.
Niko
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