Marti
I just had a converstaion with my GP about that yesterday and my neuro a few weeks ago. I am not diagnosed at this point, but have had a rapid onset of symptoms and progression over a 12 week period. My doctors said that something significant is going on. The really frustrating thing (which also gives me hope), is that I have had many, but not all, of these symptoms episodically (real word?
) since I was 15 years old.
When I was 15, my right side went clumsy and I had no balance...kept 'falling' to the left when I walked. I was told it was vertigo. At 17, I was in the hospital for a week with more left side clumsiness, but also brutal abdominal pain (like my midsection was being squeezed with a belt). They thought appendix, then kidney stones, then had no explanation. I've continued to have symptoms every year or few years for 30 years! In the late 90's I had places all over my body where the muscles were 'knotted' and those spots were excrutiating to touch. In 2001, my left side was out of whack and I was clumsy again, but this time, my tongue changed shape and would not come out straight anymore. I also had a few days of calf twitching. Neuros said migraine or MS that wasn't visible on mri, or some pathology that they couldn't find. I remember he said that a cause can not be found in 30% to 40% of neurological issues. I didn't even both going back to a doctor when things returned for 3 months in Fall 2005. Same symptoms, but added absolute exhaustion, night sweats and brutal muscular pain in lower back (kidney area), and upper back.
This August, I started with trouble chewing, swallowing and writing (with my right hand). Soon after, all the left side clumsiness kicked in, but with non stop twitching and 12 weeks of progressive weakness in all limbs. That limb is new! I do have intense pain on bottom of feet and base of thumb, night sweats, abdominal 'tightness', lots of numbness/tingling (which my neuro says can come with als), and 'shaking' episodes which last for 10-15 sec at a time . The 'coolest' symptom this time is when I just start bleeding in dozens of places-at the exact same time-all over my hands, arms, face and forehead. It happened in September and last week. It's as though someone is taking a needle and poking me all over, all at once. That's really fun. It doesn't hurt. I just wipe the little tiny drops of blood, and that seems to be the end of it.
OMG, sorry for rambling. There was a point when I started. Oh yeah; Is this the same thing as before? Who knows? My GP and neuro both think it's unlikely (but not impossible) to be something new. They both have told me that I have many symptoms of als this time and they continue to test to find another explanation. I have many, many symptoms I've felt for nearly 30 years, and some new crappy ones which are scary and progressing quickly. Have I had als since 15 years old, is this it now or is it still something that will go undiagnosed?
The nervous system is one strange, strange entity.
Good luck to you and take care.
