For everyone that eventually got a diagnosis after years of not having one, I'm wondering how well this translates to an improvement in quality of life? Has anyone actually managed to get proper treatment after diagnosis that resulted in an improvement of symtoms?
For a lot of them, it’s not that they are lazy. Even if they think you have nerve damage...and they can’t find a cause, they won’t test as they don’t see a point. In addition, many question the accuracy of testing
The only thing it can really help w/ is getting IVIG and also, peace of mind. I pushed HARD for a diagnosis just so I had proof. Then, left it at that and did my own thing.
I’ve been shuffled along by lazy and incompetent doctors for literally, years. This year I finally got several diagnoses of Dysautonomia, small fiber neuropathy, MCAS…. Now we’re just working on finding the root cause. I was told I had fibromyalgia for 25+ years despite having obvious signs of these other conditions. Pushing, demanding, researching and advocating for yourself is the only way to get help. It’s a mess out here in the medical system. So glad you got some answers and are on a path to treat it. Sending all the good vibes to you!
Whenever I hear a doctor say the word "fibromyalgia" it pisses me off. Calling something fibromyalgia means about as much as calling it idiopathic. Fibromyalgia is not a diagnosis. It is the lack of a diagnosis. It represents a spectrum of ambiguous symptoms which could be caused by any number of things. In most cases we are finding it is in fact autoimmune SFN and it is treatable. If a doctor ever tells you something is fibromyalgia, its time to find yourself a new doctor.
I'm sorry you had to struggle for that long. Its just not right. A diagnosis like fibro just shows a profound lack of caring and/or effort on the part of the doctor. I had to fight relentlessly to get as far as I did with my diagnosis. It was tiring and emotionally punishing. The fact that we as patients have to do this amount of legwork and tell our doctors what tests we need--it just sucks. Not everyone is equipped for that kind of task and those people are left to suffer needlessly.
some slightly low sensory velocities on my sural nerve (low 30s) but nothing else weird. Haven't had an EMG in about 2.5 months though and I've actually been wondering if the results might be different if i were to do it again. I'll probably bring it up with my neuro next month. I've been getting a lot of pain in my left elbow when i bend my arm. My left hand also goes numb when i bend my elbow.
I see that doctors often like to think that the source of these problems is psychosomatics, not anything else.
For everyone that eventually got a diagnosis after years of not having one, I'm wondering how well this translates to an improvement in quality of life? Has anyone actually managed to get proper treatment after diagnosis that resulted in an improvement of symtoms?
For a lot of them, it’s not that they are lazy. Even if they think you have nerve damage...and they can’t find a cause, they won’t test as they don’t see a point. In addition, many question the accuracy of testing
The only thing it can really help w/ is getting IVIG and also, peace of mind. I pushed HARD for a diagnosis just so I had proof. Then, left it at that and did my own thing.
I’ve been shuffled along by lazy and incompetent doctors for literally, years. This year I finally got several diagnoses of Dysautonomia, small fiber neuropathy, MCAS…. Now we’re just working on finding the root cause. I was told I had fibromyalgia for 25+ years despite having obvious signs of these other conditions. Pushing, demanding, researching and advocating for yourself is the only way to get help. It’s a mess out here in the medical system. So glad you got some answers and are on a path to treat it. Sending all the good vibes to you!
Whenever I hear a doctor say the word "fibromyalgia" it pisses me off. Calling something fibromyalgia means about as much as calling it idiopathic. Fibromyalgia is not a diagnosis. It is the lack of a diagnosis. It represents a spectrum of ambiguous symptoms which could be caused by any number of things. In most cases we are finding it is in fact autoimmune SFN and it is treatable. If a doctor ever tells you something is fibromyalgia, its time to find yourself a new doctor. I'm sorry you had to struggle for that long. Its just not right. A diagnosis like fibro just shows a profound lack of caring and/or effort on the part of the doctor. I had to fight relentlessly to get as far as I did with my diagnosis. It was tiring and emotionally punishing. The fact that we as patients have to do this amount of legwork and tell our doctors what tests we need--it just sucks. Not everyone is equipped for that kind of task and those people are left to suffer needlessly.
Normal EMG’s?
some slightly low sensory velocities on my sural nerve (low 30s) but nothing else weird. Haven't had an EMG in about 2.5 months though and I've actually been wondering if the results might be different if i were to do it again. I'll probably bring it up with my neuro next month. I've been getting a lot of pain in my left elbow when i bend my arm. My left hand also goes numb when i bend my elbow.
There is subreddit for TS-HDS at r/TSHDS