Isaacs Syndrome: Experiences Here?
- Thread starter sarajane
- Start date
eyennyGlimmer
Well-known member
Sarahneal,
Yes this is what I think I have. I am going to be seeing a movement specialist to find out. My first neuro told me that this disease is really rare but I do not think it is as rare as they think, lets face it they do not know enough about BFS. I know StevePaul a senior member on here has this another name for it is NMT(Neuromyotonia) he has had it for 11 years. NMT is the same as BFS just more severe, it is on the other end of the PNH stick...Jenn
Yes this is what I think I have. I am going to be seeing a movement specialist to find out. My first neuro told me that this disease is really rare but I do not think it is as rare as they think, lets face it they do not know enough about BFS. I know StevePaul a senior member on here has this another name for it is NMT(Neuromyotonia) he has had it for 11 years. NMT is the same as BFS just more severe, it is on the other end of the PNH stick...Jenn
MysticalGlitchy
Well-known member
What's the workup for Isaac's?
If I read the articles right then...
ANA testing would flag the doctor
a neurologist would be able to physically see abnormalties in his clinical exam. Grip problems, etc..
Also, it's refered to as progressive, but then I see where it states it gets better/regressive.
Am I right?
I'm so confused!! Plus, WIKI site separates the BFS and Neuromyotonia definitions= not even mentioning the two together.
Somebody slap me upside the head and explain, plzzzz.
If I read the articles right then...
ANA testing would flag the doctor
a neurologist would be able to physically see abnormalties in his clinical exam. Grip problems, etc..
Also, it's refered to as progressive, but then I see where it states it gets better/regressive.
Am I right?
I'm so confused!! Plus, WIKI site separates the BFS and Neuromyotonia definitions= not even mentioning the two together.
Somebody slap me upside the head and explain, plzzzz.
eyennyGlimmer
Well-known member
Vanessa.
I was scared also because I thought I have this but like I said talking with someone that was dx with this and has had for 11 years, he is fine and so are the others. I never heard that an ANA can pick up on Isaac's I only heard that a neurolgist goes by your symptoms and I believe an EMG can pick something up on this, but not sure but I believe so. Isaac's is the same as BFS just more severe in symptoms. Wiki site does not mention this but remember there are people who put that info on there that do not know all about PNH. If you read the sticky on this site about PNH I am sure it will mention it...Jenn
I was scared also because I thought I have this but like I said talking with someone that was dx with this and has had for 11 years, he is fine and so are the others. I never heard that an ANA can pick up on Isaac's I only heard that a neurolgist goes by your symptoms and I believe an EMG can pick something up on this, but not sure but I believe so. Isaac's is the same as BFS just more severe in symptoms. Wiki site does not mention this but remember there are people who put that info on there that do not know all about PNH. If you read the sticky on this site about PNH I am sure it will mention it...Jenn
MysticalGlitchy
Well-known member
Thanks Jenn.
As for the ANA- I'm assuming when they say autoreactive antibodies can be detected that the ANA test would reveal such a thing.
I found an old posting that StevePaul stated the EMG would be the deciding factor as to whether it is BFS of Neuromytonia- single firing vs. multi firing. Funny thing is... I didn't have a single fasciculation when they were testing- well they were in other places.
Also, StevePaul said that his neuro sorta knew from the beginning that he had Neuromytonia. Maybe his exam showed slow-relaxing muscles and grip problems.??
Hmmm... this stuff just sucks!! I love this board, but sometimes it scares the crap out of me!! Like the association w/ the thymus problem stuff.
Jenn... when reading did you gather from the Mayo site that Isaac's is progressive? What's up with that?
As for the ANA- I'm assuming when they say autoreactive antibodies can be detected that the ANA test would reveal such a thing.
I found an old posting that StevePaul stated the EMG would be the deciding factor as to whether it is BFS of Neuromytonia- single firing vs. multi firing. Funny thing is... I didn't have a single fasciculation when they were testing- well they were in other places.
Also, StevePaul said that his neuro sorta knew from the beginning that he had Neuromytonia. Maybe his exam showed slow-relaxing muscles and grip problems.??
Hmmm... this stuff just sucks!!
I love this board, but sometimes it scares the crap out of me!! Like the association w/ the thymus problem stuff. Jenn... when reading did you gather from the Mayo site that Isaac's is progressive? What's up with that?
bluestarman
Well-known member
ANA does not detect NMT--it is a marker for lupus and some other autoimmune disorders. There is an antibody to voltage-gated potassium channels that often shows positive for NMT, but not always. It is also hideously expensive and not readily available The best reading is Hart's paper, whose link has been given by StevePaul, but which I don't have here at the moment.
-Dave
-Dave
MysticalGlitchy
Well-known member
Thanks Dave for the clarification.
Now I'm wondering why Mayo wouldn't have called my condition Neuromyotonia. It seems they would be highly educated & familiar with such a disorder. Many of the docs there aren't even from America- so the "American Medical Terminology" theory is blown there.
Trust your neuro I hear that advice on this board all the time. Well... I was seen by Mayo Clinic here in Florida. My diagnosis was anxiety w/ benign fasciculations. My family became very angry with me (not too long ago) when I spiraled into deep depression because some on this board suggested I trash that particular diagnosis. Man, Oh man... maybe I need a break. I get so flustered with this situation.
Now I'm wondering why Mayo wouldn't have called my condition Neuromyotonia. It seems they would be highly educated & familiar with such a disorder. Many of the docs there aren't even from America- so the "American Medical Terminology" theory is blown there.
Trust your neuro I hear that advice on this board all the time. Well... I was seen by Mayo Clinic here in Florida. My diagnosis was anxiety w/ benign fasciculations. My family became very angry with me (not too long ago) when I spiraled into deep depression because some on this board suggested I trash that particular diagnosis. Man, Oh man... maybe I need a break. I get so flustered with this situation.
eyennyGlimmer
Well-known member
Vanessa,
Really dont worry, my EMG picked up no fasciculations but I was not even having them during the EMG, go figure. Isaac's I have heard could be progressive and that is why I was freaked out about it until StevePaul told me he knows only one person that progressed with it and even that person is not that bad. He has had it for 11 years and is fine so are all the other people with it. Do not worry about yourself with this I was just saying I think I have it because of the symptoms I have but then again people on this board say I am no different then them so I do not know. My neuro wants me to see a movement disorder specialist and that is all I know so far but I will ask them about this when I go. When I was really freaked out about this I remember StevePaul saying to me, "Jenn why are you so freaked out about Isaac's it is only PNH no big deal..benign..so I trust him in this he knows alot about this syndrome, so I say, if I have Isaac's rather then BFS so be it, it will not disable me or kill me..another words benign just like BFS...Keep smilin hon..Jenn
Really dont worry, my EMG picked up no fasciculations but I was not even having them during the EMG, go figure. Isaac's I have heard could be progressive and that is why I was freaked out about it until StevePaul told me he knows only one person that progressed with it and even that person is not that bad. He has had it for 11 years and is fine so are all the other people with it. Do not worry about yourself with this I was just saying I think I have it because of the symptoms I have but then again people on this board say I am no different then them so I do not know. My neuro wants me to see a movement disorder specialist and that is all I know so far but I will ask them about this when I go. When I was really freaked out about this I remember StevePaul saying to me, "Jenn why are you so freaked out about Isaac's it is only PNH no big deal..benign..so I trust him in this he knows alot about this syndrome, so I say, if I have Isaac's rather then BFS so be it, it will not disable me or kill me..another words benign just like BFS...Keep smilin hon..Jenn
MysticalGlitchy
Well-known member
Thanks Jenn... you're such a sweetie!
Maybe I'm reading into it too much. I guess I'm scared more because it's associated with the malignant tumor thing!! I did have a chest x-ray when this all started, though. But... then it again it says it can PRECEDE the tumor by up to 4 years!! Who knows. I just wish this *beep* would go away for all of us! It's so frustrating and I'm tired of everyone thinking I'm a nut.
Take care.
Maybe I'm reading into it too much. I guess I'm scared more because it's associated with the malignant tumor thing!! I did have a chest x-ray when this all started, though. But... then it again it says it can PRECEDE the tumor by up to 4 years!! Who knows. I just wish this *beep* would go away for all of us! It's so frustrating and I'm tired of everyone thinking I'm a nut.
Take care.
eyennyGlimmer
Well-known member
Vanessa,
What tumor are you thinking about the thymus? I also have had a chest xray and nothing there. What exactly was said about this thymus thing or could you point me to the post? Thanks..Jenn
What tumor are you thinking about the thymus? I also have had a chest xray and nothing there. What exactly was said about this thymus thing or could you point me to the post? Thanks..Jenn
MysticalGlitchy
Well-known member
It's mentioned in the Dr. Hart study.
Now, I can't find it.
Now, I can't find it.
eyennyGlimmer
Well-known member
Vanessa,
Ok lets say it is a symptom to pre-cancer, what can we do about it? Nothing, are future is planted already for us. Also if this is the case then I would think these Dr.'s would be making sure that are thymus is checked on a yearly basis. Also there are alot of people that do have cancer that do not have what we have..Do you see what I mean here? It doesnt matter what it says about cancer, right now we are ok, we cannot predict or prevent what will happen in our future. I try to protect myself all the time but am learning just to love the moment because if we do get something we have wasted all these years on worrying. I should talk because this is what I do, try to prevent but I am realizing that I simply cannot. Now I smoke and have for years I probably have a better chance of getting cancer because of that. Dont even give this a thought about your thymus, if we continue to do this we will have no life. Ya know what is really funny is that they also say this can be a autoimmune thing..well ok..autoimmune means are bodies are always in high gear, always fighting things off, infections and including cancer...soooo if we fit that into the pic then maybe we have a less chance of getting cancer..See you never know....Do not worry ...THe Lord will take care of us...Jenn
Ok lets say it is a symptom to pre-cancer, what can we do about it? Nothing, are future is planted already for us. Also if this is the case then I would think these Dr.'s would be making sure that are thymus is checked on a yearly basis. Also there are alot of people that do have cancer that do not have what we have..Do you see what I mean here? It doesnt matter what it says about cancer, right now we are ok, we cannot predict or prevent what will happen in our future. I try to protect myself all the time but am learning just to love the moment because if we do get something we have wasted all these years on worrying. I should talk because this is what I do, try to prevent but I am realizing that I simply cannot. Now I smoke and have for years I probably have a better chance of getting cancer because of that. Dont even give this a thought about your thymus, if we continue to do this we will have no life. Ya know what is really funny is that they also say this can be a autoimmune thing..well ok..autoimmune means are bodies are always in high gear, always fighting things off, infections and including cancer...soooo if we fit that into the pic then maybe we have a less chance of getting cancer..See you never know....Do not worry ...THe Lord will take care of us...Jenn
bluestarman
Well-known member
When you take a look at the tumor mention, I believe this was for the worst affected group in Hart's study, was it not? Also, with smoking as a risk factor. When you take a look at the criteria used, the group of people who were recommended for a chest x-ray were in pretty bad shape in the first place (really twitching and with lots of myokymia).
The initial Mayo study did not note any complications of the thymus tumor type in followup with the BFS participants.
It is still my opinion only, but I think some of us have nothing more than supercharged limbic systems that are bent on anxiety at the moment and are acting it out through our peripheral nervous systems. I say this for myself anyway.
-Dave
The initial Mayo study did not note any complications of the thymus tumor type in followup with the BFS participants.
It is still my opinion only, but I think some of us have nothing more than supercharged limbic systems that are bent on anxiety at the moment and are acting it out through our peripheral nervous systems. I say this for myself anyway.
-Dave
MysticalGlitchy
Well-known member
THANK YOU SOOOOOOO MUCH DAVE! I really do appreciate it. You have calmed my fears.
Not many on this board are willing to admit this could be totally anxiety related and that scares me sometimes.
Not many on this board are willing to admit this could be totally anxiety related and that scares me sometimes.