Aa
Medical Mystery
I am a 35 yr old female in chronic pain and have recently been diagnosed with Fibromyalgia.
My PCP says he feels in his gut that I have something neurological going on but Nuerologist says no. I have had all blood work known to man, of course nothing significant there. I have had MRI of brain and c-spine, Normal. My symptoms are many and I appologize now for the length of this. I am very desperate for answers and would appreciate any leads that someone could give me.
This started a few months after mono. Initially was GI pain, then female problems that resulted in complete hysterectomy AND appendectomy. 3 bouts of pancreatitis, ERCP. All this within 6months. And then things really progressed. I was on Medrol for 2 1/2 months, now on Lyrica 300mg daily, Domperidone 40mg daily, Vicodin 5/500. Nothing helping me very much. I have lost my job and feel as I am losing this battle to what ever this is.
My symptoms:
Chronic pain-all over my body
pain in back of head that goes down into neck,dibilatating
joint pain, swelling
hair loss
X-treme Fatigue
weakness
memory loss/confusion
Muscle cramps
cold intolerance
rash
eczema in ears
( I'm sure I'm leaving something out)
PLEASE HELP ME!
Again, I appoligize for the length.
My PCP says he feels in his gut that I have something neurological going on but Nuerologist says no. I have had all blood work known to man, of course nothing significant there. I have had MRI of brain and c-spine, Normal. My symptoms are many and I appologize now for the length of this. I am very desperate for answers and would appreciate any leads that someone could give me.
This started a few months after mono. Initially was GI pain, then female problems that resulted in complete hysterectomy AND appendectomy. 3 bouts of pancreatitis, ERCP. All this within 6months. And then things really progressed. I was on Medrol for 2 1/2 months, now on Lyrica 300mg daily, Domperidone 40mg daily, Vicodin 5/500. Nothing helping me very much. I have lost my job and feel as I am losing this battle to what ever this is.
My symptoms:
Chronic pain-all over my body
pain in back of head that goes down into neck,dibilatating
joint pain, swelling
hair loss
X-treme Fatigue
weakness
memory loss/confusion
Muscle cramps
cold intolerance
rash
eczema in ears
( I'm sure I'm leaving something out)
PLEASE HELP ME!
Again, I appoligize for the length.
Thank you all soooooooooMUCH!:) I will certainly look into all of these. I'm so glad to know there's more to search, not just accept fibro. I will keep you all posted on things. I am to have yet another abdominal CT on Wednesday and then I meet w/neuro on Thursday to discuss Brain MRI and EEG,EMG.
Here's wishing you all a Great Day!
Here's wishing you all a Great Day!
I agree with you, DD! I was/ am a hyperparathyroid patient and I can attest that it affects all body systems...By the time I was finally diagnosed, I had HAD IT with being blown off by my doc! I was the one who finally raised the flag on what was ailing me...I told my doc I had 11 of the 16 symptoms of hyperparathyroidism, and I wanted to have my parathyroid hormone level checked! The doc didn't seem to think this was necessary, but I refused to leave without having the test drawn...and sure enough...I had a tumor the size of a chicken egg on one of my parathyroid glands...The morning after it was removed, i felt way better...My symptoms were : frequent headaches, muscle and joint pain and spasms, joint swelling, heartburn, kidney stones, gall stones, hot flashes (I was only 38 yrs old!), constipation, heart palpitations, and a horrible time concentrating or remembering anything more than a few minutes...I'm sure there were a few more, but, I'm happy to say, they are gone now...My labs showed elevated calcium and PTH levels...Hope this helps somebody...I wouldn't wish it on anyone...
You had 3 bout of pancreatitis and they say your symptoms are NOT related??? Sorry...I just don't believe that!
People with parathyroid (not thyroid) problems have a lot of your symptoms too. And it could account for the pancreatitis. This disease is commonly referred to as the "stones, bones, abdominal groans and psychic moans". Research this and see what you think. Given the pancreatitis I'd think your more along the hyperparathyroid disease than metabolic myopathy. Hope this helps!
People with parathyroid (not thyroid) problems have a lot of your symptoms too. And it could account for the pancreatitis. This disease is commonly referred to as the "stones, bones, abdominal groans and psychic moans". Research this and see what you think. Given the pancreatitis I'd think your more along the hyperparathyroid disease than metabolic myopathy. Hope this helps!
Have you had an EMG test done? I agree with mm, fibro is a diagnosis "du jour". I'm in the same boat you are. ALL tests are neg. Dealing with this for 15+ years. What I find interesting is that you mention cramps. Check out info on Metabolic Myopathies and see if you can relate to any of them. The only dr that really seemed to give me a thorough evaluation and thought diagnosed me this this, but he couldn't say which one. I dismissed the dx for many years, until my bun/creatinin level became elevated. Talk to any dr and they'll tell you it means nothing. But, in my searches I came back across the metabolic myopathies and now feel that dr was probably right, but can' say for sure. i need genetics testing for that as my muscle biopsy only showed type 2 atrophy.
Interestingly I started taking iron (27mg) even though my iron and hemoglobin, etc., are all normal because a doc noticed how pale I was. He TOLD me to take it with my period. I did at first, then started taking it daily. You wouldn't believe the results. I'm not cured, but I have my life back. A year after starting the iron, I started on magnesium. Forget the amount but it's what ever the rda is. I believe I've trully found an effective treatment for my disease, whatever it is. If you saw the movie Lorenzo's Oil, they explain the theory of competitive inhibition. That's what the iron and magnesium do for me. The treatment for another disease hypoparathyroidism, is based on the same theory. They simply take calcium and vitamin d.
I often wonder if people with who have pain and cramps don't really have a metabolic myopathy.
Oh, also low b12 can cause a lot of your symptoms. Have you been checked for this? 20% of people with low b12 don't present with abnormal cbc bloodwork. You have to have the specific b12 tests.
Hope this helps!
Interestingly I started taking iron (27mg) even though my iron and hemoglobin, etc., are all normal because a doc noticed how pale I was. He TOLD me to take it with my period. I did at first, then started taking it daily. You wouldn't believe the results. I'm not cured, but I have my life back. A year after starting the iron, I started on magnesium. Forget the amount but it's what ever the rda is. I believe I've trully found an effective treatment for my disease, whatever it is. If you saw the movie Lorenzo's Oil, they explain the theory of competitive inhibition. That's what the iron and magnesium do for me. The treatment for another disease hypoparathyroidism, is based on the same theory. They simply take calcium and vitamin d.
I often wonder if people with who have pain and cramps don't really have a metabolic myopathy.
Oh, also low b12 can cause a lot of your symptoms. Have you been checked for this? 20% of people with low b12 don't present with abnormal cbc bloodwork. You have to have the specific b12 tests.
Hope this helps!
Agree with Mini Mom 100%. Biopsy is not perfect and can lead to false negatives. I say forget the doctors and testing, just try completely eliminating gluten for a month or so and see if you feel better. On the other hand, as mini mom mentioned you could have the antibodies blood test (but don't cut out gluten if you are going to get this test) and/or the genetic test for celiacs. Doctors always want to label Celiacs as Fibro or CFS, which are just junk names for a variety of symptoms.
I had my gall bladder removed in '97 and had ERCP done July'07 found more stones. Through that process also biop for Celiac-neg of course. Everything comes up Negative!
Doctors say that I just had a run of bad luck in '07, nothing is related. I feel in my gut that they are WRONG. It all started at the same time. Now I have had some things for years but never gave it much thought until my body went haywire!
I so appreciate you for answering. I have posted in a few forums b/c I really don't know where I fit. I have had many responses and am so greatful. I at least feel like someone cares and is willing to help. Thank you , thank you, thank you!
*Hugs
Doctors say that I just had a run of bad luck in '07, nothing is related. I feel in my gut that they are WRONG. It all started at the same time. Now I have had some things for years but never gave it much thought until my body went haywire!
I so appreciate you for answering. I have posted in a few forums b/c I really don't know where I fit. I have had many responses and am so greatful. I at least feel like someone cares and is willing to help. Thank you , thank you, thank you!
*Hugs
I am 48 years old and I used to have the same symptoms as you do. You have my utmost sympathy. When I first started to have symptoms in 1996 I was told, "There is nothing wrong with you. I think you should go to mental health!" I was so shocked that I did, for awhile. In 1998, the diagnosis changed from depression to fibromyalgia. It did not matter much, the only treatment offered was Ibuprofen and anti-depressants. I will tell you straight off that I do not believe the diagnosis of fibromyalgia is a legitimate one. The symptoms are real, the diagnosis is not. I believe that every one of us who suffer so has an underlying reason that is medically viable and is not necessarily psychosomatic.
First of all I learned that I had gallstones. My gallbladder was removed in an emergency surgery in 2001. Have you had your gallbladder checked? The procedure is a simple sonagram. Then, I too, had an appendectomy just nine months later.
Secondly, and more importantly, I learned, but not until 2005, that I have celiac disease. Celiac disease is an intolerance to gluten. It is not an allergic reaction, but an autoimmune disorder akin to rheumatoid arthritis. Gluten is a plant protein found in wheat, barley and rye grains. It is not in rice, corn or oats. To be over simple, with celiac disease, our bodies misidentifies the protein molecule as an infectious invader and the immune system kicks in. The celia found in the small intestine, the duodenum, begin to die off, and malabsorbtion occurs. This leads to all kinds of digestive problems. And because we are not absorbing the proper nutrients, we suffer fatigue, mental disorintation, weight loss, depression and a host of other things. And because this is an autoimmune disorder, we start to have joint problems and deterioration. Not everyone suffers the same. By the time my joints started swelling I was in pretty bad shape.
I took Medrol when I began to understand that my problem was an immune system disorder, but had not yet heard of celiac disease. It sure helped, but long term corticosteroid use has its own problems.
The first test for celiac disease is a blood test for certain anti-bodies. Do note, however, that the blood test is not determinate by itself. The test is prone to a significant rate of both false positives and false negatives. If you are taking a corticosteroid or are already following a gluten free diet, the blood test will likely be negative. The only sure way of achieving an accurate diagnosis is with a biopsy of the celia of the duodenum to rate the amount of damage. This was not something I would agree to, in my case, I felt I had suffered too much at the hands of the medical community. I simply went to treatment.
The only treatment for celiac disease is to eliminate all forms of gluten from your diet. There are no pills, no surgeries, no medical intervention at all. Which is probably why so few American doctors recognize celiac disease as a possible diagnosis. I even had one doctor exclaim, "You women, and your made up diseases!"
For me, however, the result of eliminating gluten was almost immediate. I can say for certain that my symptoms were miraculously reduced within 48 hours. It took a bit longer for my joints and my small intestines to heal, but heal they did. I have been gluten free for almost three years now. The only time I have had a recurrance of symptoms is when I mess up intentionally or unintentially.
It is hard to eliminate gluten, it is ubiquious, in almost packaged good on the grocery shelves. It comes in many forms and I have to be aware of all of its aliases. Let me reassure you that celiac disease is real, although under-recognized in the US. The British Medical Journal, however, cites the occurance of celiac disease in the UK to be as high as 5% of the general population and even higher when the sample is restricted to those of us of Northern European descent. The UK is currently establishing a screening protocol for all infants born there.
If you think this might apply to you, Google "Celiac Disease." There is some great info and dietary information. It seems so improbable that something so simply treated by diet can make such a big difference. Or inversely that something so simple as a grain protein can cause such a huge suffering. I hope that your answers come to you and that my post can help you toward those answers.
First of all I learned that I had gallstones. My gallbladder was removed in an emergency surgery in 2001. Have you had your gallbladder checked? The procedure is a simple sonagram. Then, I too, had an appendectomy just nine months later.
Secondly, and more importantly, I learned, but not until 2005, that I have celiac disease. Celiac disease is an intolerance to gluten. It is not an allergic reaction, but an autoimmune disorder akin to rheumatoid arthritis. Gluten is a plant protein found in wheat, barley and rye grains. It is not in rice, corn or oats. To be over simple, with celiac disease, our bodies misidentifies the protein molecule as an infectious invader and the immune system kicks in. The celia found in the small intestine, the duodenum, begin to die off, and malabsorbtion occurs. This leads to all kinds of digestive problems. And because we are not absorbing the proper nutrients, we suffer fatigue, mental disorintation, weight loss, depression and a host of other things. And because this is an autoimmune disorder, we start to have joint problems and deterioration. Not everyone suffers the same. By the time my joints started swelling I was in pretty bad shape.
I took Medrol when I began to understand that my problem was an immune system disorder, but had not yet heard of celiac disease. It sure helped, but long term corticosteroid use has its own problems.
The first test for celiac disease is a blood test for certain anti-bodies. Do note, however, that the blood test is not determinate by itself. The test is prone to a significant rate of both false positives and false negatives. If you are taking a corticosteroid or are already following a gluten free diet, the blood test will likely be negative. The only sure way of achieving an accurate diagnosis is with a biopsy of the celia of the duodenum to rate the amount of damage. This was not something I would agree to, in my case, I felt I had suffered too much at the hands of the medical community. I simply went to treatment.
The only treatment for celiac disease is to eliminate all forms of gluten from your diet. There are no pills, no surgeries, no medical intervention at all. Which is probably why so few American doctors recognize celiac disease as a possible diagnosis. I even had one doctor exclaim, "You women, and your made up diseases!"
For me, however, the result of eliminating gluten was almost immediate. I can say for certain that my symptoms were miraculously reduced within 48 hours. It took a bit longer for my joints and my small intestines to heal, but heal they did. I have been gluten free for almost three years now. The only time I have had a recurrance of symptoms is when I mess up intentionally or unintentially.
It is hard to eliminate gluten, it is ubiquious, in almost packaged good on the grocery shelves. It comes in many forms and I have to be aware of all of its aliases. Let me reassure you that celiac disease is real, although under-recognized in the US. The British Medical Journal, however, cites the occurance of celiac disease in the UK to be as high as 5% of the general population and even higher when the sample is restricted to those of us of Northern European descent. The UK is currently establishing a screening protocol for all infants born there.
If you think this might apply to you, Google "Celiac Disease." There is some great info and dietary information. It seems so improbable that something so simply treated by diet can make such a big difference. Or inversely that something so simple as a grain protein can cause such a huge suffering. I hope that your answers come to you and that my post can help you toward those answers.
Consider seeing a rheumatologist or possibly an infectious disease specialist. I can't put the constellation of symptoms together but it sounds sort of autoimmune.
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