i@ruthbe wrote:
Has anyone been diagnosed with an autonomic nervous system disorder?? My cardiologist is referring me to a neurologist at the Mayo Clinic here in Scottsdale AZ that specializes in the condition. Just wondering what your experiences have been....regarding dealing with this disorder.
@ruthbe I’ve done a lot of resarch on this disease as I have it. Mine is related to Sjogren’s and other secondary autoimmune diseases I have. Hashimoto’s thyroid disease, Sjogren’s Disease, Small Fiber Neuropathy, all autoimmune diseases that are causing damage to my nerves. From my experience and research I would get tested by an endocrinologist for thyroid abnomalities, specifc tests: TPO Antibodies and other thyroid antibodies tests, TSH levels, T3 and T4 levels. They don’t typically test for antibodies up front now, but this is very important. Also see a Rhuematologist and get tested for autoimmune diseases such as Sjogren’s Disease, Lupus, and Rhuematoid Arthritis. Since you are seeing a neurologist please have him biopsy you for Small Fiber Neuopathy (SFN). This disease affects the small fiber nerves that control the autonomic functions winthin the body. Heart rate, sweating, blood pressure control (high and low), dry eyes, dry mouth (controls tear glands and saluva glands) etc... The above tests I recommended with the endocrinologist, rheumatologist and your current neurologist will uncover what is causing the autonomic disorder (damage to your nerves) and save you a lot of valuable time. These diseases are typically associated with autonomic disorder and usually patients have one or more of these diseases if they have autonomic disorder. I know what is causing mine and they wanted to send me clear down to Mayo Clinic in FL to have the autonomic part of my disease studied. There is nothing that can be done about that. It can’t be cured. However, treating the cause of the autonomic disorder can help. Treating the autoimmune disease or thyroid disease causing it, and keeping the thyroid as healthy as possible is crucial. Treating just the autonomic symtoms is dangerous as those drugs don’t address the cause, and their side effects are more harmful than the help they offer. Gabapentin and all those drugs rot the brain. I got off them. Read the side effects of them. Scary drugs. Neurologists can research autonomic disorders and test you like a guinea pig, but it’s for their own research, they can not help you other than to offer ineffective drugs. Please see these other specialists first as they will get to the root of your health issue not just treat the symptoms. The information below is valuable information about what I’ve discussed that I got off the Mayo Clinic website. I hope this information helps you. Good luck and God bless.
Autonomic neuropathy occurs when the nerves that control involuntary bodily functions are damaged. It can affect blood pressure, temperature control, digestion, bladder function and even sexual function.
The nerve damage interferes with the messages sent between the brain and other organs and areas of the autonomic nervous system, such as the heart, blood vessels and sweat glands.
While diabetes is the most common cause of autonomic neuropathy, other health conditions — even an infection — can be to blame. Some medications also might cause nerve damage. Symptoms and treatment vary based on which nerves are damaged.
Symptoms
Signs and symptoms of autonomic neuropathy depend on the nerves affected. They might include:
* Temperature Regulation Hot one minute, freezing the next
- Dizziness and fainting when standing, caused by a sudden drop in blood pressure (orthostatic hypertension).
- Urinary problems, such as difficulty starting urination, incontinence, difficulty sensing a full bladder and inability to completely empty the bladder, which can lead to urinary tract infections.
- Sexual difficulties, including problems achieving or maintaining an erection (erectile dysfunction) or ejaculation problems in men. In women, problems include vaginal dryness, low libido and difficulty reaching orgasm.
- Difficulty digesting food, such as feeling full after a few bites of food, loss of appetite, diarrhea, constipation, abdominal bloating, nausea, vomiting, difficulty swallowing and heartburn, all due to changes in digestive function.
- Inability to recognize low blood sugar (hypoglycemia), because the warning signals, such as getting shaky, aren't there.
- Sweating abnormalities, such as sweating too much or too little, which affect the ability to regulate body temperature.
- Sluggish pupil reaction, making it difficult to adjust from light to dark and seeing well when driving at night.
- Exercise intolerance, which can occur if your heart rate stays the same instead of adjusting to your activity level.
When to see a doctor
Seek medical care promptly if you begin having any of the signs and symptoms of autonomic neuropathy, particularly if you have diabetes that's poorly controlled.
If you have type 2 diabetes, the American Diabetes Association recommends annual autonomic neuropathy screening beginning when you receive your diagnosis. For people with type 1 diabetes, the association advises annual screening beginning five years after diagnosis.
Causes
Many health conditions can cause autonomic neuropathy. It can also be a side effect of treatments for other diseases, such as cancer. Some common causes of autonomic neuropathy include:
- Abnormal protein buildup in organs (amyloidosis), which affects the organs and the nervous system.
Autoimmune diseases, in which your immune system attacks and damages parts of your body, including your nerves. Examples include Sjogren's syndrome, systemic lupus erythematosus, rheumatoid arthritis and celiac disease. Guillain-Barre syndrome is an autoimmune disease that happens rapidly and can affect autonomic nerves.
An abnormal attack by the immune system that occurs as a result of some cancers (paraneoplastic syndrome) can also cause autonomic neuropathy.
- Diabetes, especially with poor glucose control, is the most common cause of autonomic neuropathy. It can gradually cause nerve damage throughout the body.
- Certain medications, including some drugs used in cancer chemotherapy.
- Certain infectious diseases. Some viruses and bacteria, such as botulism, Lyme disease and HIV, can cause autonomic neuropathy.
- Inherited disorders. Certain hereditary disorders can cause autonomic neuropathy.
Risk factors
Factors that might increase your risk of autonomic neuropathy include:
- Diabetes. Diabetes, especially when poorly controlled, increases your risk of autonomic neuropathy and other nerve damage. You're at greatest risk if you have difficulty controlling your blood sugar.
- Other diseases. Amyloidosis, porphyria, hypothyroidism and cancer (usually due to side effects from treatment) also can increase the risk of autonomic neuropathy.
Prevention
While certain inherited diseases that put you at risk of developing autonomic neuropathy can't be prevented, you can slow the onset or progression of symptoms by taking care of your health in general and managing your medical conditions.
Follow your doctor's advice on healthy living to control diseases and conditions, which might include these recommendations:
- Control your blood sugar if you have diabetes.
- Avoid alcohol and smoking.
- Get appropriate treatment if you have an autoimmune disease.
- Take steps to prevent or control high blood pressure.
- Achieve and maintain a healthy weight.
- Exercise regularly.
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