GM1 antibody levels high

[NEWJERSEY]

All of a sudden at age 47 I have neuro problems!  My neurologist told me he knew my symptoms were neuropathy because my GM1 antibodies showed to be 1:800.    
Upon further reading up on the GM1 genes, I need to know if that means I have "GM1 Gandliosidosis".   Should I be prepared for this to progress into siezures, dementia, parkinsons, stroke, etc?    The only symptoms I had throughout my teenage years was the cherry red spot in the eye, but it went away 10 years ago, and I have hip  dysplasia.
My teenage son has been treated for neuro problems his whole life, but never tested for GM1 that I know of.   He has some signs:  Ataxia, extreme reaction to being startled, flattened nose.   He was born with a cherry red spot on his arm, but not in the eye.      
Since I am reading there is no treatment or cure, how concerned should I be about what to expect for the future?        

[NEWJERSEY]

Thank you so much for your response.   I am so relieved to have some clarity of the subject.  
My son's neurologist actually turned us away when he was dealing with severe OCD, anxiety and depression; he told me to take him to a psychiatrist instead.     We have been turned away by psychiatrists too, because he has so many different problems, and doctors in our area don't seem to want the multi-complex cases.    
Once I get past my angiogram, then hip replacement surgery, I will get back to the neurologist.
I was going to ask the neurologist if during my hip replacement surgery (since my guts will be out anyway) if she might want bone marrow or spinal fluid samples drawn at that time for testing.    Do they ever do that?    

Thanks again....this is a wonderful place to turn to when you are unsure.

NewJersey

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you what the exact abnormality is implicated by your laboratory findings. However I will try to provide you with some useful information


GM1 antibodies are not the cause of the condition GM1 gangliosidosis (I can understand your confusion though, all this terminology can be VERY confusing).

GM1 antibodies are basically antibodies (proteins formed in our immune system) against a specific protein called GM1. GM-1 antibodies occur in a group of conditions called neuropathy. These neuropathies can include (but are not limited to) a type called motor neuropathy with conduction block, chronic inflammatory demyelinating neuropathy, ALS, and acute inflammatory demyelinating neuropathy. To further complicate things, anti-GM1 antibodies can occur in entirely normal people. In fact, while the normal value is usually around 20, a titer of 1:800 may be entirely non-specific and of no clinical consequence. In patients with neuropathy due to or associated with anti-GM1 antibodies, the values are usually more in the 1000s. I can not really comment on the positivity of antibodies in your case or their relevance; it depends on whether or not you have a neuropathy based on your clinical history, symptoms, and EMG/NCS.

On the other hand, GM1 gangliosidosis is a type of neurologic disorder characterized by the accumulation of abnormal proteins. This is the condition that you refer to above that can cause developmental problems and seizures. GM1 gangliosidosis are not caused by GM1 antibodies. Rather they are caused by an abnormality in a specific enzyme called beta -galactosidase. I do not believe that your GM1-antibodies are in any way related to your son's condition, however, I can not be certain without further information regarding your testing, and this is a good question to ask your neurologist and his pediatric neurologist.

It is important for you to understand from your physician exactly what he/she means from GM1 antibodies, and what the implications are for your symptoms/condition. I recommend you discuss this further with him/her.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.