Aa
Doctor can't seem to explain... going downhill!?
I started with symtoms of diabetes type 1 in 2007 (used insulin). Then had frequent addisons crisis (stable on high dose of cortisone), Thyroid went hypo and meds seems to work. Developed a neurogenic bladder (meds and catheterization), chronic contsipation went to impactions and obstruction (emergency loop illeostomy done). Blood pressure falling, experienced fainting, nausea and pulpitations (dual chamber pacemaker inserted) after heart rate went to 18 beats per minute. Developed bloodclots in arms and subclavian vein and a major one in my spine L5 that was removed surgically in a 10 hour operation... (Pradaxa used).
Now the weird thing. I started having extreme low blood sugar levels such as to go in to a coma 3 times. Stay in hospital for 2 months and blood tests was done. Insulin stopped and IV sustanance and glucose given. Results shows antibody on the insulin receptor. Blood pressure again went low to 50/22mmHg and I could not feed myself. Surgeon decided to do total colectomy, thank goodness no complications. Specialist started me on high doses of IV cortisone and chemotherapy. This seems to stabilize the blood sugar levels???? cannot be explained.
Test results:
Autonomic Failure with:
Addisons
Hypothyroid
Antibody to insulin receptor
Neurogenic bladder
Dual chamber pacemaker
Colon removed and small intestine conected to rectum
Antiphoshollipid syndrome and a low protein C
Anybody that can connect to me on this. I really feel isolated and alone. This is hard to overcome. Though I really try not to complain. I just need to know that I am not allone!
Now the weird thing. I started having extreme low blood sugar levels such as to go in to a coma 3 times. Stay in hospital for 2 months and blood tests was done. Insulin stopped and IV sustanance and glucose given. Results shows antibody on the insulin receptor. Blood pressure again went low to 50/22mmHg and I could not feed myself. Surgeon decided to do total colectomy, thank goodness no complications. Specialist started me on high doses of IV cortisone and chemotherapy. This seems to stabilize the blood sugar levels???? cannot be explained.
Test results:
Autonomic Failure with:
Addisons
Hypothyroid
Antibody to insulin receptor
Neurogenic bladder
Dual chamber pacemaker
Colon removed and small intestine conected to rectum
Antiphoshollipid syndrome and a low protein C
Anybody that can connect to me on this. I really feel isolated and alone. This is hard to overcome. Though I really try not to complain. I just need to know that I am not allone!
5. Is that what I have? In a word, no. But then again, I doubt any two of us on this forum have *exactly* the same condition if we really listed everything out to the fullest detail. So here's the last I have energy for today, and I'll be back to talk more another time. When I was little I frequently got various infections and bugs, seemed just not to be very hardy; strep throat was what I tended to get most frequently. We did not know it at the time (in fact the scientific discovery that explained it hadn't even been made yet!), but when I was getting these strep infections—around the age of 5 or 6—it set off an autoimmune process that attacked the cells in my brain which produce a chemical called hypocretin (or orexin), causing me to develop narcolepsy. While the symptoms become evident from that young age (excessive daytime sleepiness, abnormal dreams called "hypnagogic hallucinations," sleep paralysis, and difficulty reading that only decades later would finally make sense as being caused by microsleeps/automatic behavior) and both my mother and I complained to doctors about them over the years, the symptoms were either explained away as nothing or misdiagnosed as psychiatric problems (oh, the misadventures THAT caused in my life!) and a correct diagnosis did not come until my late 20s AFTER the onset of my dysautonomia, most likely because of the dysautonomia.
So I went about life limping along with narcolepsy and compensating with massive amounts of caffeine and naps between shifts of work until one day at the age of 27 I had sudden onset of dysautonomia. I mean SUDDEN. One day I was my "normal" self, the next day I got my first migraine, numbness in one leg, shortly thereafter collapsed unconscious on my mother's floor, and woke up completely paralyzed and unable to speak in the emergency department of the hospital. (The doctors didn't even know I was conscious because I had no way to communicate; it was awful! I thought I was going to be stuck like that permanently.) The paralysis wore off over a number of hours, and they released me from the hospital that night with no answers whatsoever as to what had happened except to give me some scare-speech about smoking while on birth control.
I'll skip a bunch here and just tell you that I went through a lot of confusion and searching and testing and going from doctor to doctor to doctor and eventually got diagnosed with generalized dysautonomia (autonomic dysfunction, not otherwise specified) and narcolepsy with cataplexy (cataplexy is a type of paralysis almost entirely unique to narcoleptics, which is thankfully at least somewhat manageable with medication for most patients). My autonomic dysfunction seems to be taking a progressive course from what I can see and over the last five years a lot has either been figured out or has developed (small fiber sensory peripheral neuropathy, gastroparesis, slow intestinal transit, post-ganglionic autonomic small fiber neuropathy, deficiency in two out of the three layers of my tear film, urinary and bowel incontinence, allodynia and hyperalgesia (chronic pain), nosebleeds, vaginal dryness, repeated (atypical) chronic yeast infections, dermatographic uticaria, eczema/seborrheic dermatitis, flushing, memory deficit secondary to head injury from syncope, orthostatic hypotension, Berlin's edema (torn retina) secondary to head injury from syncope (resolved), hypohidrosis, exercise intolerance, heat intolerance, anemia, hypokalemia, postural tachycardia, migraines, kidney stones ... and in less than two weeks I'm off to consult with the "big wigs" about my case and among other things we will be evaluating whether or not I have Sjogren's. I only briefly (approx. two weeks) attempted to work after the onset of my dysautonomia, only part time at that, and it was a bitter failure. I haven't worked a minute since. I am hoping to return to work, but I'm not going to rush myself because I don't want to make myself sick.
I cannot say that I know exactly how you feel. But I do feel for you and at a base level understand what it is like to struggle with chronic illness, the feeling of not knowing all the answers, and the isolation of not necessarily having people nearby with whom you can share your feelings about what you're going through. Take good care of yourself and I'll try to get back to you again soon,
Heiferly.
So I went about life limping along with narcolepsy and compensating with massive amounts of caffeine and naps between shifts of work until one day at the age of 27 I had sudden onset of dysautonomia. I mean SUDDEN. One day I was my "normal" self, the next day I got my first migraine, numbness in one leg, shortly thereafter collapsed unconscious on my mother's floor, and woke up completely paralyzed and unable to speak in the emergency department of the hospital. (The doctors didn't even know I was conscious because I had no way to communicate; it was awful! I thought I was going to be stuck like that permanently.) The paralysis wore off over a number of hours, and they released me from the hospital that night with no answers whatsoever as to what had happened except to give me some scare-speech about smoking while on birth control.
I'll skip a bunch here and just tell you that I went through a lot of confusion and searching and testing and going from doctor to doctor to doctor and eventually got diagnosed with generalized dysautonomia (autonomic dysfunction, not otherwise specified) and narcolepsy with cataplexy (cataplexy is a type of paralysis almost entirely unique to narcoleptics, which is thankfully at least somewhat manageable with medication for most patients). My autonomic dysfunction seems to be taking a progressive course from what I can see and over the last five years a lot has either been figured out or has developed (small fiber sensory peripheral neuropathy, gastroparesis, slow intestinal transit, post-ganglionic autonomic small fiber neuropathy, deficiency in two out of the three layers of my tear film, urinary and bowel incontinence, allodynia and hyperalgesia (chronic pain), nosebleeds, vaginal dryness, repeated (atypical) chronic yeast infections, dermatographic uticaria, eczema/seborrheic dermatitis, flushing, memory deficit secondary to head injury from syncope, orthostatic hypotension, Berlin's edema (torn retina) secondary to head injury from syncope (resolved), hypohidrosis, exercise intolerance, heat intolerance, anemia, hypokalemia, postural tachycardia, migraines, kidney stones ... and in less than two weeks I'm off to consult with the "big wigs" about my case and among other things we will be evaluating whether or not I have Sjogren's. I only briefly (approx. two weeks) attempted to work after the onset of my dysautonomia, only part time at that, and it was a bitter failure. I haven't worked a minute since. I am hoping to return to work, but I'm not going to rush myself because I don't want to make myself sick.
I cannot say that I know exactly how you feel. But I do feel for you and at a base level understand what it is like to struggle with chronic illness, the feeling of not knowing all the answers, and the isolation of not necessarily having people nearby with whom you can share your feelings about what you're going through. Take good care of yourself and I'll try to get back to you again soon,
Heiferly.
Hi again. I apologize in advance for a few things, for which I hope you will forgive me: I'm likely going to come back here and answer in fits and starts (as time and my ability to concentrate allows), I have a pronounced short term memory deficit so I may occasionally repeat myself or forget things that you've already told me, and sometimes the "brain fog" gets the best of me leading to parts of what I write being illogical or incoherent. PLEASE feel free to point out if I've said something irrational or which needs better explanation. I will not be offended. In addition to the "brain fog" (difficulty concentrating and thinking clearly) which is a symptom for many with autonomic dysfunction—most likely as top experts in the field speculate due to reduced cerebral perfusion—I also have narcolepsy (which also has not only brain fog as a symptom but also something called "automatic behaviors" which literally means my brain can fall asleep and still keep doing things such as typing to you folks!! semi-coherently even!! UGH!) as well as a prior head injury from a bad fall when fainting which led to deficits mainly in short term memory/working memory and poor concentration. (You'd never know it from my verbose messages, right?!)
SO, all that being said ... here goes ...
1. MOST forms of autonomic dysfunction are not fatal. That is to say, your prognosis, while it may not be the one you desire per se, in all likelihood is one of a normal lifespan (at least with regard to the autonomic dysfunction). Again, I'm speaking strictly to the autonomic dysfunction there. I don't know enough about the other things to know if that would alter the prognosis.
2. One of the fatal forms of dysautonomia I'm fairly certain we can rule out right out of hand—the one I mentioned which is overwhelmingly found in Ashkenazi Jews. It is almost impossible to have Familial Dysautonomia [FD] without both parents being Ashkenazi Jews. Even if both your parents are Jewish, the symptoms of FD are rather striking right from birth, so the chance of living this long in life with FD undiagnosed and untreated is basically impossible. So I'm pretty sure we can take that off the table.
3. Another form of dysautonomia which has a shortened life expectency is MSA: Multiple System Atrophy. It would be extremely unusual (though, I will be honest and say not *impossible*) for the onset of MSA to occur as young as the onset of your autonomic dysfunction. In addition, your symptoms as you describe them do not seem characteristic of MSA. The American Autonomic Society and American Academy of Neurology Consensus Statement on the Definition of MSA states that:
"MSA is a sporadic, progressive, adult onset disorder characterized by autonomic dysfunction, Parkinsonism, and ataxia in any combination. The features of the disorder include:
A. Parkinsonism (bradykinesia with rigidity or tremor or both), usually with a poor or unsustained motor response to chronic levodopa therapy.
B. Cerebellar or corticospinal signs.
C. Orthostatic hypotension, impotence, urinary incontinence, or retention usually preceding or within 2 years after the onset of the motor symptoms.
Characteristically, these features cannot be explained by medications or other disorders. Parkinsonian and cerebellar features commonly occur in combination. However, certain features may predominate. ..."
In short, you don't seem to have the entire variety of neurological dysfunction that would be indicative of MSA, so I think we can rule that out as well. Which is good news, because that leaves us at a point of saying that your autonomic dysfunction IN AND OF ITSELF is not likely going to shorten your lifespan. :-)
4. I don't know why they said soon you will stop swallowing and/or breathing. My first thought was something acute like Guillian Barre, an autoimmune disorder which causes weakness and paralysis which can sometimes progress to the point of affecting even respiration, requiring the patient to be placed on a ventilator temporarily; Guillian Barre is associated with various types of autonomic dysfunction as it attacks the nervous system. While it would fit the doctors' comment about a dysautonomia patient soon needing help with swallowing and/or breathing, it doesn't seem to fit with your symptoms at all. Myasthenia Gravis—a disorder of neuromuscular transmission—can affect respiration, however unlike Lambert-Eaton myasthenic syndrome [LEMS], MG does not have autonomic dysfunction as a feature. Basically, with my limited knowledge of conditions which affect the nervous system and the autonomic nervous system in particular, I can't think of any reason that your doctors would have made that statement that you would soon be in need of support for both swallowing and respiration. It implies a particular kind of neurological "shut down" which, as I've illustrated here, is indeed known to occur in a number of conditions, but which (I apologize) I'm failing to draw any link between your history and any condition in my knowledge base. My hunch is that they were mistaken, but that is merely the GUT FEELING of a random PATIENT with NO MEDICAL DEGREE, so I clearly don't offer it as being authoritative or worth more than any other person's arbitrary impression of the situation.
SO, all that being said ... here goes ...
1. MOST forms of autonomic dysfunction are not fatal. That is to say, your prognosis, while it may not be the one you desire per se, in all likelihood is one of a normal lifespan (at least with regard to the autonomic dysfunction). Again, I'm speaking strictly to the autonomic dysfunction there. I don't know enough about the other things to know if that would alter the prognosis.
2. One of the fatal forms of dysautonomia I'm fairly certain we can rule out right out of hand—the one I mentioned which is overwhelmingly found in Ashkenazi Jews. It is almost impossible to have Familial Dysautonomia [FD] without both parents being Ashkenazi Jews. Even if both your parents are Jewish, the symptoms of FD are rather striking right from birth, so the chance of living this long in life with FD undiagnosed and untreated is basically impossible. So I'm pretty sure we can take that off the table.
3. Another form of dysautonomia which has a shortened life expectency is MSA: Multiple System Atrophy. It would be extremely unusual (though, I will be honest and say not *impossible*) for the onset of MSA to occur as young as the onset of your autonomic dysfunction. In addition, your symptoms as you describe them do not seem characteristic of MSA. The American Autonomic Society and American Academy of Neurology Consensus Statement on the Definition of MSA states that:
"MSA is a sporadic, progressive, adult onset disorder characterized by autonomic dysfunction, Parkinsonism, and ataxia in any combination. The features of the disorder include:
A. Parkinsonism (bradykinesia with rigidity or tremor or both), usually with a poor or unsustained motor response to chronic levodopa therapy.
B. Cerebellar or corticospinal signs.
C. Orthostatic hypotension, impotence, urinary incontinence, or retention usually preceding or within 2 years after the onset of the motor symptoms.
Characteristically, these features cannot be explained by medications or other disorders. Parkinsonian and cerebellar features commonly occur in combination. However, certain features may predominate. ..."
In short, you don't seem to have the entire variety of neurological dysfunction that would be indicative of MSA, so I think we can rule that out as well. Which is good news, because that leaves us at a point of saying that your autonomic dysfunction IN AND OF ITSELF is not likely going to shorten your lifespan. :-)
4. I don't know why they said soon you will stop swallowing and/or breathing. My first thought was something acute like Guillian Barre, an autoimmune disorder which causes weakness and paralysis which can sometimes progress to the point of affecting even respiration, requiring the patient to be placed on a ventilator temporarily; Guillian Barre is associated with various types of autonomic dysfunction as it attacks the nervous system. While it would fit the doctors' comment about a dysautonomia patient soon needing help with swallowing and/or breathing, it doesn't seem to fit with your symptoms at all. Myasthenia Gravis—a disorder of neuromuscular transmission—can affect respiration, however unlike Lambert-Eaton myasthenic syndrome [LEMS], MG does not have autonomic dysfunction as a feature. Basically, with my limited knowledge of conditions which affect the nervous system and the autonomic nervous system in particular, I can't think of any reason that your doctors would have made that statement that you would soon be in need of support for both swallowing and respiration. It implies a particular kind of neurological "shut down" which, as I've illustrated here, is indeed known to occur in a number of conditions, but which (I apologize) I'm failing to draw any link between your history and any condition in my knowledge base. My hunch is that they were mistaken, but that is merely the GUT FEELING of a random PATIENT with NO MEDICAL DEGREE, so I clearly don't offer it as being authoritative or worth more than any other person's arbitrary impression of the situation.
Did they find the active bilharzia after you had taken the medicine to kill it already?
Regarding the spinning sensations along with nausea- did they rule out Meniere's Disease?
I saw you told Heiferly "the tests for multiple endocrine autonomic neoplasma antibody was positive". This being the case, I highly recommend you find an experienced neuroendocrinologist, even if it means you have to travel out of South Africa. May I suggest you try to get in contact with the people at Johns Hopkins, whose hospital ranked number one here in the U.S.A.?
Regarding the spinning sensations along with nausea- did they rule out Meniere's Disease?
I saw you told Heiferly "the tests for multiple endocrine autonomic neoplasma antibody was positive". This being the case, I highly recommend you find an experienced neuroendocrinologist, even if it means you have to travel out of South Africa. May I suggest you try to get in contact with the people at Johns Hopkins, whose hospital ranked number one here in the U.S.A.?
Hi
I have done some reading. I guess I am still accepting. You seem up to date, into this more than 5 year if I am right, you are the same age I am. Isn't it. I feel for you. I am not sure what it is I want. I always want more information. I want a friend who can understand. I want to know where it is going to end and what is next, I almost feel as if I want to be prepared to prevent death.
Sorry, it is just, I did die before. Thank God for cpr. though that was scary!
Let me give you some info. I was hardly sick as a child, chronic bladder infections due to the fact that I was swimming the 10km in the lake and sea. I was fit. I was tested for bilharzia often as all my cousins got bilharzia after swimming in the lakes and fishing... I was never tested positive. Since 1996 I had not been in lake water again. So the active bilharzia had to be in my colon since 1995. I twice had meningitis as a child once almost died. I had a cystoscopy as a child and they opened the narrow urethra. Had my appenix removed and tonsils.
My grandfather (Jew) you mentioned the jews.. got a blood clot and within two months had both legs amputated at the hips and whent into a addisons crisis, hypothyroid activity, cardiac failure, stroke and diabetes. he was put on wafarin and did not respond well, like me. 20mg per day and INR stil 1. I was put on Pradaxa. My mother has parkinsons disease bad for her age. My cousin has insulin resistance and hypothyroidism. other cousin has some insulin receptor antibody and would go into a hypo once a week pass out at work and be taken to casualty by his wife. 4 of these suffer from Raynaud syndrome.
I had antibody tests firt after the first baby I lost. I developed a bloodclot in my femur artery. High levels of cardiolipins and heamocystine levels and positive antiphospholipid syndrome.. lost four more babies before having my son. Still having those bladder infections since childhood. then I got diabetes high and low really uncontrolled. so the rest followed.
I had ct scans and had a MRI of the brain before, only thing was small white pinpointed bleedings or clots they saw, said it was the antiphospholipid. I could just stay on the floor with the headaches I have. Somehow they realized that my absorption from the intestine is compromised as meds doses are high with little reponse and other signs of malnourishment (glositis) and... I drink specialized shakes and get iv treatment regulary for malabsorptions. after the tumor in my spine, the tests for multiple endocrine autonomic neoplasma antibody was positive and so since then the dysautonomia just got out of control. I heard the doktor say that they soon look at putting a peg tube for feeding as I will stop swallowing, breathing, and is that true. I wasn't suppose to hear that.
is that what you have? can you tell it is not that bad. i am not sarcastic. scared. I had them wash me feed me before as I went paralysed from the levels of potasium and weakness after my heart stopped.. Had been in a nappy until they figured the bladder then leak then hold back.. now it just holds back so I catheterize..
Are you working. I can't keep a job. little bit of stress and this illness just forget that it is given meds to stay under control, I faint and levels go up and down. It is crazy.. My biggest goal this year is to go work. I working out in the gym hopefully I don't scare them by an episode. hahaha
Thank you for the reply. It does give me hope, if others can outlive the situation I can just as well..
I have done some reading. I guess I am still accepting. You seem up to date, into this more than 5 year if I am right, you are the same age I am. Isn't it. I feel for you. I am not sure what it is I want. I always want more information. I want a friend who can understand. I want to know where it is going to end and what is next, I almost feel as if I want to be prepared to prevent death.
Sorry, it is just, I did die before. Thank God for cpr. though that was scary!
Let me give you some info. I was hardly sick as a child, chronic bladder infections due to the fact that I was swimming the 10km in the lake and sea. I was fit. I was tested for bilharzia often as all my cousins got bilharzia after swimming in the lakes and fishing... I was never tested positive. Since 1996 I had not been in lake water again. So the active bilharzia had to be in my colon since 1995. I twice had meningitis as a child once almost died. I had a cystoscopy as a child and they opened the narrow urethra. Had my appenix removed and tonsils.
My grandfather (Jew) you mentioned the jews.. got a blood clot and within two months had both legs amputated at the hips and whent into a addisons crisis, hypothyroid activity, cardiac failure, stroke and diabetes. he was put on wafarin and did not respond well, like me. 20mg per day and INR stil 1. I was put on Pradaxa. My mother has parkinsons disease bad for her age. My cousin has insulin resistance and hypothyroidism. other cousin has some insulin receptor antibody and would go into a hypo once a week pass out at work and be taken to casualty by his wife. 4 of these suffer from Raynaud syndrome.
I had antibody tests firt after the first baby I lost. I developed a bloodclot in my femur artery. High levels of cardiolipins and heamocystine levels and positive antiphospholipid syndrome.. lost four more babies before having my son. Still having those bladder infections since childhood. then I got diabetes high and low really uncontrolled. so the rest followed.
I had ct scans and had a MRI of the brain before, only thing was small white pinpointed bleedings or clots they saw, said it was the antiphospholipid. I could just stay on the floor with the headaches I have. Somehow they realized that my absorption from the intestine is compromised as meds doses are high with little reponse and other signs of malnourishment (glositis) and... I drink specialized shakes and get iv treatment regulary for malabsorptions. after the tumor in my spine, the tests for multiple endocrine autonomic neoplasma antibody was positive and so since then the dysautonomia just got out of control. I heard the doktor say that they soon look at putting a peg tube for feeding as I will stop swallowing, breathing, and is that true. I wasn't suppose to hear that.
is that what you have? can you tell it is not that bad. i am not sarcastic. scared. I had them wash me feed me before as I went paralysed from the levels of potasium and weakness after my heart stopped.. Had been in a nappy until they figured the bladder then leak then hold back.. now it just holds back so I catheterize..
Are you working. I can't keep a job. little bit of stress and this illness just forget that it is given meds to stay under control, I faint and levels go up and down. It is crazy.. My biggest goal this year is to go work. I working out in the gym hopefully I don't scare them by an episode. hahaha
Thank you for the reply. It does give me hope, if others can outlive the situation I can just as well..
Hi
The doc gave me a dose of meds once off.. suppose that was it then for the bilharzia. I am currently in a 100mg of cortisone and 0.2mg of florinef but that is for the addisons and the low blood pressure. Then I am on alkylating agents with its' side effect, otherwise I am better off on it.
I guess I am hoping to find that thing that caused the onset of the dysautonomia.. stupid. I had severe meningitis as a child and nearly died. I only remember crawling on the floor and still at times experience the same feeling I had when lying on the bed the roof comes closer and the bed starts spinning, then nausea follows and when I get up to walk it feels like the floor is further away so I will walk as if going down stairs..
I apprechiate the talk it is nice to just talk to someone. I don't really explain my symptoms to my family, I don't like it when they get all worked up and worried. my husband and son went through a tough time. I had cpr a few times and was brought back. they had to face my death and listen to bad news more than often.
:)
The doc gave me a dose of meds once off.. suppose that was it then for the bilharzia. I am currently in a 100mg of cortisone and 0.2mg of florinef but that is for the addisons and the low blood pressure. Then I am on alkylating agents with its' side effect, otherwise I am better off on it.
I guess I am hoping to find that thing that caused the onset of the dysautonomia.. stupid. I had severe meningitis as a child and nearly died. I only remember crawling on the floor and still at times experience the same feeling I had when lying on the bed the roof comes closer and the bed starts spinning, then nausea follows and when I get up to walk it feels like the floor is further away so I will walk as if going down stairs..
I apprechiate the talk it is nice to just talk to someone. I don't really explain my symptoms to my family, I don't like it when they get all worked up and worried. my husband and son went through a tough time. I had cpr a few times and was brought back. they had to face my death and listen to bad news more than often.
:)
I hope they can kill the bilharzia, as complications can be serious. I am seriously wondering if this could be the source of your autonomic problems, as national institute of health (see that private message) indicates that infection can involve the brain, and in such a case, corticosteroids might be given. The usual treatment they say for the infection is praziquantel. Are you taking this drug?
Well, since you did not get the MRI done prior to the pacemaker being inserted, unless you were in the MedTronic trial with that new kind of MRI safe pacemaker (I saw something about online) inserted (probably not, right?), it definitely would NOT be safe for you to get an MRI with your pacemaker. (See private message.)
Wow, you have bilharzia- that's considered a rare problem by U.S.A.'s Natioal Institute of Health and I see it can happen in developing countries. I see you are in South Africa. Let me send you some info I found by private message. I confess I am not knowledgeable in this snail hosting parasitic problem in people. Are you taking an anthelmintic medication for it?
They still are doing research in the area of dysautonomia and there are a lot of things they don't know yet. While we don't know everything, our Creator sure does and it helps me a lot to trust Him and knowing I'm in His hands.
I don't have as severe of issues as you, but I know what it's like for doctors to think me a complicated patient & had one turn me down as being their patient because of numerous issues. I currently have chronic migraines, postural orthostatic tachycardia syndrome, interstitial cystitis, irritable bowel syndrome, etc., etc.
I hope you are getting the best treatment for the various ailments you are suffering from & if not, I hope you are able to travel to try to find the best you can in medical care!
Wow, you have bilharzia- that's considered a rare problem by U.S.A.'s Natioal Institute of Health and I see it can happen in developing countries. I see you are in South Africa. Let me send you some info I found by private message. I confess I am not knowledgeable in this snail hosting parasitic problem in people. Are you taking an anthelmintic medication for it?
They still are doing research in the area of dysautonomia and there are a lot of things they don't know yet. While we don't know everything, our Creator sure does and it helps me a lot to trust Him and knowing I'm in His hands.
I don't have as severe of issues as you, but I know what it's like for doctors to think me a complicated patient & had one turn me down as being their patient because of numerous issues. I currently have chronic migraines, postural orthostatic tachycardia syndrome, interstitial cystitis, irritable bowel syndrome, etc., etc.
I hope you are getting the best treatment for the various ailments you are suffering from & if not, I hope you are able to travel to try to find the best you can in medical care!
Diabetes alone can be associated with damage to the autonomic nervous system. So can autoimmune processes (is your hypothyroidism autoimmune?), bodily "traumas" such as surgeries (e.g. insertion of pacemaker, colon surgery) and pregnancies, vitamin deficiencies (e.g. B12), toxicities, damage to the spinal cord ... really, the list goes on and on and on. Autonomic dysfunction has a VERY long list of etiologies. You may very well have more than one. I don't know what tests you've had done, and what's more difficult, I don't know what's even available in your region. There are (literally) only a handful of hospitals in the US that have full autonomic testing clinics, and the numbers get more dismal when you look globally. I know of one clinic in the UK, one clinic in Australia ... I believe there's good testing/care available in Israel (at least for Familial Dysautonomia, a form that runs in Ashkenazi Jews in particular) ... Canada has clinics, though I don't know how many ... same for South America ... quite frankly, the entire continent of Africa is a mystery to me.
This may be more productive if you tell me how I can help you. My personal resources are that I have read most of the most influentual textbooks on autonomic dysfunction and some hundred(s?) of peer-reviewed journal articles on dysautonomia and related topics. I have quick access to some fraction of these at my fingertips from my home, and am willing/able to translate what I read from medical-ese into layman's terms within the confines of what "free time" I have available to volunteer here (as I am also a patient and have limited energy and time at my disposal, of course). I am knowledgable in the tests that are performed at the major Autonomic Clinics as well as a few alternate tests that can measure the same parameters but with less expensive, more widely available equipment (although, admittedly, often with less accurate or precise results). Admittedly, my knowledge is quite narrowly confined to the topic of autonomic dysfunction and I can't speak much to how this may or may not relate to your other conditions, except in the most rudimentary aspects.
If you can tell me what specifically you need help with, it would help me to give you information targeted to your needs. Do you need more information on some aspect of autonomic dysfunction? Do you want to know more about what types of testing are out there and that you might want to inquire about? Do you want to look for a physician or a hospital and want help finding a suitable one (I can't guarantee results but would be willing to try ... I've had luck with this in some foreign countries, but don't always)? Would you like help finding resources to read yourself or to give to your doctors? Finally, if you just really need a shoulder to lean on and I'm being overly aggressive in offering other resources, please feel free to say so! I can do that too, if I take a few moments to slow down, I think. Ha!
In all seriousness, though, I'm so sorry to hear about all your struggles. Although I haven't been through exactly what you've been through, my autonomic dysfunction affects multiple body systems as well and I have my own "master list" of diagnoses that I've accumulated since things started ... er, well, *changing* for me about 5 1/2 years ago. I hope that you will find all of the support and answers that you seek here in our community.
Welcome!
Heiferly.
This may be more productive if you tell me how I can help you. My personal resources are that I have read most of the most influentual textbooks on autonomic dysfunction and some hundred(s?) of peer-reviewed journal articles on dysautonomia and related topics. I have quick access to some fraction of these at my fingertips from my home, and am willing/able to translate what I read from medical-ese into layman's terms within the confines of what "free time" I have available to volunteer here (as I am also a patient and have limited energy and time at my disposal, of course). I am knowledgable in the tests that are performed at the major Autonomic Clinics as well as a few alternate tests that can measure the same parameters but with less expensive, more widely available equipment (although, admittedly, often with less accurate or precise results). Admittedly, my knowledge is quite narrowly confined to the topic of autonomic dysfunction and I can't speak much to how this may or may not relate to your other conditions, except in the most rudimentary aspects.
If you can tell me what specifically you need help with, it would help me to give you information targeted to your needs. Do you need more information on some aspect of autonomic dysfunction? Do you want to know more about what types of testing are out there and that you might want to inquire about? Do you want to look for a physician or a hospital and want help finding a suitable one (I can't guarantee results but would be willing to try ... I've had luck with this in some foreign countries, but don't always)? Would you like help finding resources to read yourself or to give to your doctors? Finally, if you just really need a shoulder to lean on and I'm being overly aggressive in offering other resources, please feel free to say so! I can do that too, if I take a few moments to slow down, I think. Ha!
In all seriousness, though, I'm so sorry to hear about all your struggles. Although I haven't been through exactly what you've been through, my autonomic dysfunction affects multiple body systems as well and I have my own "master list" of diagnoses that I've accumulated since things started ... er, well, *changing* for me about 5 1/2 years ago. I hope that you will find all of the support and answers that you seek here in our community.
Welcome!
Heiferly.
Difficult to do an MRI with the pacemaker, or not... I don't know... I had doctors running away from me. hahaha... not joking! Two who said it is scary and they won't treat me ever..
I had all the tests they could think of.. still I am just wondering what is the cause of the failure of the autonomic nervous system? Does it just die or stop working every four months a new symtom appear.
one thing I might have left out, one doctors seemed conserned and another not bothered. Is that they when I still had a colon did a colonoscopy and biopsy and found bilharzia active in the colon wall. could that mean something. I have read about it spread to the nervous system. but should't meds kill it..
thank you for the interest
I had all the tests they could think of.. still I am just wondering what is the cause of the failure of the autonomic nervous system? Does it just die or stop working every four months a new symtom appear.
one thing I might have left out, one doctors seemed conserned and another not bothered. Is that they when I still had a colon did a colonoscopy and biopsy and found bilharzia active in the colon wall. could that mean something. I have read about it spread to the nervous system. but should't meds kill it..
thank you for the interest
I hope you have one well trained pharmacist looking at any medications the various doctors are prescribing (if any and not just other treatments) to avoid dangerous interactions and over-kill!
You are not alone. Although we all have different symptoms and issues that bring us to this forum, most all of us have experienced multiple docs who dont know what to do with us.
Funny- One member said in a recent post that her doc said they were at the stage just throwing darts at her situation, hoping something would work. Last week my primary doc said the same thing. It can seem so frustrating. I am working w 6 docs currently who are all prescribing different things. I am thankful for this forum which reminds me I am not alone.
I am sorry to hear of your situation and will be praying for you.
Funny- One member said in a recent post that her doc said they were at the stage just throwing darts at her situation, hoping something would work. Last week my primary doc said the same thing. It can seem so frustrating. I am working w 6 docs currently who are all prescribing different things. I am thankful for this forum which reminds me I am not alone.
I am sorry to hear of your situation and will be praying for you.
It does sound like you need a really good pituitary center... but you may have several issues going on and that can make any diagnosis complex. Have you tried NIH to get into the undiagnosed program?
Have they done a dynamic pituitary MRI with and with out contrast in regards to hormonal issues you mention?
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