Living with Neuro Muscular Disease

[BFSer2006]

Dear all,

Yesterday, the Sunday evening news of the Norwegian TV channel TV2, presented a case a man between 30-35 years old of age, that suffers from a neuro muscular disease. Basically, he has pain in his entire body and muscle contractions that go up to one hundred in one minute. He has good and bad days. I do not remember quite exactly the name of the disorder, but he was diagnosed in the US, because the doctors here in Norway could not find a diagnose for him. The diagnose he got in Norway was: Schizophrenia. Can you imagine!!!! Is it so simple to diagnose a person the worst psychiatric illness there is?!!! The guy was desperate!

In the end, the journalist said that there are approximately 500 people in Norway (a small country with 4.6 million inhabitants) with “undiagnosable” neuro muscular disorders. I guess BFS may be one of them?! I say it because I was diagnosed with BFS by a neurophysiologist, and two other neurologists said that they did not no anything about it!

My question is: Can we ask for example the Mayo Clinic of the Cleveland Clinc to write something on BFS in their websites? If they have diagnosed patients with this condition, the diagnose must be based on something! I must say that it is quite annoying to see people, including myself suffering from these strange symptoms, and doctors tell me that it is psychological!! I am glad no one diagnosed me schizophrenia…

Regards,

 

[furballfury]

Unfortunately, I went to Mayo for a workup last year, and while they recognize that a body of patients exists out there that suffer from a constellation of symptoms that represent "a condition of benign cramps and fasciculations...", they do not formally recognize the syndrome as a medical condition.

Apparently this is especially meaningful to medical types who know more about the whys and wherefores of these things (I think actually they do not recognize a "syndrome" as such until there is a specific pathological origin and progression that is identifiable - e.g.: AIDS, SIDS), though I think it is needlessly splitting hairs. That said, my neuro there asked me what having a specific recognized "name" for this would accomplish for me, and I honestly DID have a hard time answering it other than "peace of mind, I guess?". That probably proves their point in a way.

To that end, I don't know if we would encounter much success in this regard. And maybe it doesn't matter - obviously, we are nowhere near having formal searches for a cure being performed until and unless an outcome other than a perfectly benign one (no, quality of life impact doesn't apparently qualify) is discovered. I, for one, will not root for that to occur anytime soon.

JG

 

[mosciski.camryn1]

I guess that having a name for the very real thing that I have would satisfy me by lending an element of legitimacy to the it. I don't want to wear it like a badge or anything...in fact, my husband and all of you are the only ones that know anything about my "condition." However, it would be nice to be able to tell other medical providers what you have and to see some spark of recognition when you tell them. I think my GP thinks I made it up....she stared at me blankly and said, "you have what???" wrinkling her forehead in an irritated fashion. When I told her it was a condition involving fasciculations and cramps she asked, "and how is that different from ALS?" (just what I needed to hear)
I mean, really, when you think about it there are other conditions that are not lethal or progressive and which do not have a well defined pathophysiology and yet make the people who suffer from them miserable...restless leg syndrome, irritable bowel syndrome, fibromyalgia....these are recognized diagnoses with the consequent medical literature, research studies, and treatment strategies that go along with recognition. How is BFS or BFCS different....do we suffer less than someone with one of the aforementioned conditions? I think not. Is it different because many of us also suffer from anxiety and therefore our symptoms are thought to be all in our heads? I would point out that anxiety is also a common comorbidity in fibromyalgia and irritable bowel syndrome. That doesn't make them any less real.

The fact that BFS is not a universally recognized disorder means that there is a paucity of research on it's prevalence and other epidemiological features as well as its treatment. That's bad news for all of us.