Basically its called visual snow syndrome bcz it has many other visual associated sysmptoms related to VS. 7 out 8 specialists I hav seen say its related to migraine and the closest diagnoses which the IHS has come up with to describe this visual problem is called persistent migraine aura without infarction. However the IHS has not come up with a diagnostic criteria for this condition and calls it a complicated migraine disorder which is difficult to reverse.
In recent times however Dr Schankin and Dr Goadsby have challenged the IHS and the medical community that this condition is a totally separate entity to migraine and are performing research into this at UCSF. In fact the research material is complete and the paper has gone for peer review so not sure how long it will take before its released. Since this research was announced last year our visual snow forum also has been divided and we have now two groups, one that believes in all the previous scientic research already taken placein different parts of the world by different docs of the all pointing towards migraine.
and one group that is complete backing up dr schankin and and dr peter goadsby who admittedly are one of the best research neurologists in the world and have so far confirmed that they have made progresss to find out the cause of VS but obviously have not given any other details yet until the final paper is relased. this second group does believe that their problems r related to migraine based on what schankin and goadsby say even if they have some form of migraine activity going on behind them. a lot of them r arguing that it cud be lyme or hppd or some other misfiring of neurons in the brain or a mini stroke or epilepsy etc. so this facegroup.of ours also once used to b a happy forum but that happiness does not exist there any longer.
my point evrry 2nd person is different. so really u shud nott mind what the person says and just have a big heart and let go. Lisa being a long standing member was frustrated with this diseases and now was finally getting help.from reading her posts i believe she was just letting out allll rudeness in frustration… imagime if one of u were sick for years and years with no outcome? obviously u wud be frutrated if no one listened or understood her. i second what scott says that she now needs to set a lyme forum of her own and helps others. but i appreciate how she has helped others in the forum so far.
but for those of u who r leaving this forum just cz of this debate is absolutely wrong and i urge u all u to come back. we migraineurs want u need u u r like our second family and we need support from a shoulderr yo cry like the past during our bad days and for the newbies
and i wish Lisa well with her Lyme movement. I am sure she willl.b successful and v happy that finally she is better