I am bringing awareness to a serious problem that is so often missed by doctors and often mimics MS, Lupus, Lyme, and many other CNS diseases. If you are on this MS Limbo Landers message board, you probably suspect that you have MS and are waiting for a diagnosis, as I was for the past year or more. Let me tell you about something that could possibly save your life!! Do your own research, however, and talk to your doctor.
First things first. If you have previously been diagnosed with Hashimoto's Thyroiditis (an autoimmune thyroid disease), then pay attention. If you have not been diagnosed with this autoimmune disease, but have so many CNS symptoms and doctors tell you that you do not have MS, then ask to get things checked out.
Second: There is an autoimmune disorder HIGHLY correlated to Hashimoto's Thyroiditis called Hashimoto's Encephalopathy (also called SREAT - Steroid Responsive Encephalopathy Associated with Thyroiditis). It is considered very rare but believed to be extremely under diagnosed or undiagnosed. It is often misdiagnosed as: MS, Lupus, Alzheimer's, Meningitis, Migraine, Psychogenic disorders (such as Conversion disorder or Somatiform disorder) or it is brushed off as "nothing wrong with you". It can be a progressive disease or relapsing/remitting disease and it is autoimmune.
The really bad news: Hashimoto's Encephalopathy is potentially fatal if undiagnosed and untreated.
The really good news: Steroid treatment or IViG can reverse most symptoms and put the disease into remission.
Why is it so hard to diagnose? Because your thyroid function can be completely normal (or corrected by Synthroid) or it can be slightly hypo, based on the usual thyroid function tests such as TSH or T3 & T4. MRI's often show nothing, or they may show Non-specific lesions (not typically indicative of MS). CSF tests often show only slightly elevated protein, or nothing at all. EEGs often show normal, or may show diffuse slowing or slow wave abnormalities. Almost all typical tests can be 100% normal or do not specifically indicate a particular disease process.
So how do doctors diagnose HE if they run all of these tests (including almost every other type of antibody test) show normal? They check your Anti-TPO (Thyroperoxidase Antibodies) which is almost 100% sensitive for HE, and these will typically be extremely elevated (more so than with just Hashimoto's Thyroiditis). They also check your Anti-Thyroglubulin which is often elevated with HE. These antibodies being elevated does not, in itself, provide a Dx of HE, but they must start steroid treatment and determine if your CNS issues are significantly improved. If they rule out all of the other diseases, and steroid treatment significantly resolves your CNS disease, and your thyroid antibodies come down significantly, then they can Dx HE.
What are the basic symptoms of HE? I'll let you do your own research if you think that any of this applies to you, but here are the real BASICS: There are two types of HE. The first being a CNS process that appears similar to strokes, causing neurological deficits (which can be as varied as with MS) such as Myoclonus, numbness, partial paralysis, muscle twitching, paresthesia, ataxia, memory loss, cognitive deficits, etc. The second type - well you probably wouldn't confuse the second type with MS - but there can be overlap between the two types. The second type causes "mental" deficiencies such as delusions, psychosis, alzheimer-like memory loss, behavioural changes, etc.
I have had relapsing/remitting CNS symptoms for years. A year ago, I got myoclonic jerking movement disorder, balance issues, neuropathic pain, parasthesia, terrible headaches, etc. on top of my remaining deficits from prior episodes (double vision, bladder retention, IBS, Orthostatic Intolerance) and my MRI showed 8-9 non-specific lesions. I was convinced it was MS. I went to the Mayo Clinic and paid a ton of money to have them check me for everything. They ruled out so many things, and said they were pretty sure it wasn't MS. They ultimately told me that they figured stress was a predominant cause of my symptoms, but did not explain the lesions, nor some of my prior symptoms. I have had Hashimoto's Thyroiditis for about 10 years, and came across HE while researching Psychogenic Illness. I thought I would share this interesting differential Dx with others who may be struggling to get a Dx.
First things first. If you have previously been diagnosed with Hashimoto's Thyroiditis (an autoimmune thyroid disease), then pay attention. If you have not been diagnosed with this autoimmune disease, but have so many CNS symptoms and doctors tell you that you do not have MS, then ask to get things checked out.
Second: There is an autoimmune disorder HIGHLY correlated to Hashimoto's Thyroiditis called Hashimoto's Encephalopathy (also called SREAT - Steroid Responsive Encephalopathy Associated with Thyroiditis). It is considered very rare but believed to be extremely under diagnosed or undiagnosed. It is often misdiagnosed as: MS, Lupus, Alzheimer's, Meningitis, Migraine, Psychogenic disorders (such as Conversion disorder or Somatiform disorder) or it is brushed off as "nothing wrong with you". It can be a progressive disease or relapsing/remitting disease and it is autoimmune.
The really bad news: Hashimoto's Encephalopathy is potentially fatal if undiagnosed and untreated.
The really good news: Steroid treatment or IViG can reverse most symptoms and put the disease into remission.
Why is it so hard to diagnose? Because your thyroid function can be completely normal (or corrected by Synthroid) or it can be slightly hypo, based on the usual thyroid function tests such as TSH or T3 & T4. MRI's often show nothing, or they may show Non-specific lesions (not typically indicative of MS). CSF tests often show only slightly elevated protein, or nothing at all. EEGs often show normal, or may show diffuse slowing or slow wave abnormalities. Almost all typical tests can be 100% normal or do not specifically indicate a particular disease process.
So how do doctors diagnose HE if they run all of these tests (including almost every other type of antibody test) show normal? They check your Anti-TPO (Thyroperoxidase Antibodies) which is almost 100% sensitive for HE, and these will typically be extremely elevated (more so than with just Hashimoto's Thyroiditis). They also check your Anti-Thyroglubulin which is often elevated with HE. These antibodies being elevated does not, in itself, provide a Dx of HE, but they must start steroid treatment and determine if your CNS issues are significantly improved. If they rule out all of the other diseases, and steroid treatment significantly resolves your CNS disease, and your thyroid antibodies come down significantly, then they can Dx HE.
What are the basic symptoms of HE? I'll let you do your own research if you think that any of this applies to you, but here are the real BASICS: There are two types of HE. The first being a CNS process that appears similar to strokes, causing neurological deficits (which can be as varied as with MS) such as Myoclonus, numbness, partial paralysis, muscle twitching, paresthesia, ataxia, memory loss, cognitive deficits, etc. The second type - well you probably wouldn't confuse the second type with MS - but there can be overlap between the two types. The second type causes "mental" deficiencies such as delusions, psychosis, alzheimer-like memory loss, behavioural changes, etc.
I have had relapsing/remitting CNS symptoms for years. A year ago, I got myoclonic jerking movement disorder, balance issues, neuropathic pain, parasthesia, terrible headaches, etc. on top of my remaining deficits from prior episodes (double vision, bladder retention, IBS, Orthostatic Intolerance) and my MRI showed 8-9 non-specific lesions. I was convinced it was MS. I went to the Mayo Clinic and paid a ton of money to have them check me for everything. They ruled out so many things, and said they were pretty sure it wasn't MS. They ultimately told me that they figured stress was a predominant cause of my symptoms, but did not explain the lesions, nor some of my prior symptoms. I have had Hashimoto's Thyroiditis for about 10 years, and came across HE while researching Psychogenic Illness. I thought I would share this interesting differential Dx with others who may be struggling to get a Dx.
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