YummyDrFood
Member
- Joined
- Jun 5, 2013
- Messages
- 26
- Reason
- Learn about ALS
- Country
- US
- State
- OH
- City
- Columbus
Hi all. After browsing the forums, I thought I would lay out my story to see if anyone can relate to it. I'm going to lay it out in timeline fashion for clarity's sake:
before January 2012 - I was an avid runner who recently completed a full marathon, 2 half marathons and several other races. I was gearing up to run another marathon in March.
January 2012 - I started to feel sluggish in my runs, and if I ran for too long (over 6 miles), I would start to have pain in my left leg that felt like burning.
February 2012 - I visited my primary care physician (PCP) about the issues with my left leg that would not go away. During this time, I also had numbness and tingling in my left arm. I was referred to a physical therapist for an EMG/NC study. She found "motor nerve damage" in my RIGHT leg.
February 2012 through July 2012 - Both of my legs, and then my feet, felt increasingly pained and a tad weak after running. My daily mileage dropped from 7-8 miles to 3 miles. The left arm issues disappeared.
late July 2012 - Almost overnight, both of my legs started to feel REALLY weak. Concerned, I went to my PCP, and he referred me to a neuro. The only thing the neuro could find were "brisk reflexes" that were "off the charts" in my patellar deep tendon reflexes (DTR). The neuro called for a complete MRI and several blood tests. My left arm started to feel sore and weaker than the right arm at this point.
early August 2012 - The MRI was essentially normal except for an enlarged thyroid that had a multinodular goiter. The neuro did another exam and remarked that I "appeared more normal than appreciated 2 weeks ago". He referred me to an ENT concerning the goiter, and he also referred me to a neuromuscular clinic. About that time, he dropped the term "ALS" on me. Also, my right leg started to feel like the knee and behind the leg would "give away" if I wasn't careful.
middle August 2012 - I started to get twitches in my left knee. Further, my left arm continued to feel out of sorts. The ENT said that my thyroid issues were in no way related to my muscle weakness, and that was that.
late August 2012 - I visited the neuromuscular specialist. After a clinical exam, she asked me what I was afraid of. I told her ALS, and she flat out said I did not have ALS. I mentioned my earlier EMG/NC, and she promptly dismissed that. She gave me an EMG/NC on both my legs and my left arm. She could find nothing to point to ALS. She did write in her report that I had brisk (+3) patellar reflexes. I feel a little better afterwards.
early September 2012 - A followup visit to my neuro goes uneventful. He remarks that my reflexes are "less brisk".
November 2012 - My legs start to feel worse. My running becomes more sporadic, and it starts to feel uncomfortable to stand up for longer than 1 hour. I start getting twitches in both legs and feet. I occasionally get them in my left arm.
February 2013 - My right arm starts to feel weak. The twitches start spreading to both arms.
April 2013 - My left hand starts to feel clumsy. Additionally, my right arm starts to feel a bit weaker. My right leg has a fairly constant weakness around the knee area. The twitches are more widespread.
May 2013 - My tongue starts tingling. Everything else seems the same. I change states (finished my PhD)
June 2013 - I go to a new PCP about my worsening symptoms. He orders blood tests and a thyroid ultrasound based on my history. My swallowing starts to become difficult, and I feel like it's more of an effort to speak correctly.
late June 2013 - The blood tests indicate that my fasting glucose is high (111). The tests also indicate that my red blood cell and hemoglobin counts are higher than normal. My thyroid ultrasound reveals 2 nodules in one lobe and the other lobe looks to be mostly filled with large nodules. My TSH and T4 levels are normal.
early August 2013 - My speech still sounds awkward to me, but my swallowing issues seem to have cleared up. My legs and arms seem to feel even weaker now. It's a tad painful and tough to do anything too tough with them. I've stopped exercising altogether for the past 3 months because it's getting really uncomfortable and hard to do cardio. I'm scheduled to see an endocrinologist in November (they don't seem very concerned with the nodules) and a neuro in December (lol).
That's it. Should I still be worried about ALS? Also, can anyone relate to what I'm going through now? I admit that I may sound crazy, but it's really maddening not knowing what's wrong with me and having to wait for so long to nail down a diagnosis.
before January 2012 - I was an avid runner who recently completed a full marathon, 2 half marathons and several other races. I was gearing up to run another marathon in March.
January 2012 - I started to feel sluggish in my runs, and if I ran for too long (over 6 miles), I would start to have pain in my left leg that felt like burning.
February 2012 - I visited my primary care physician (PCP) about the issues with my left leg that would not go away. During this time, I also had numbness and tingling in my left arm. I was referred to a physical therapist for an EMG/NC study. She found "motor nerve damage" in my RIGHT leg.
February 2012 through July 2012 - Both of my legs, and then my feet, felt increasingly pained and a tad weak after running. My daily mileage dropped from 7-8 miles to 3 miles. The left arm issues disappeared.
late July 2012 - Almost overnight, both of my legs started to feel REALLY weak. Concerned, I went to my PCP, and he referred me to a neuro. The only thing the neuro could find were "brisk reflexes" that were "off the charts" in my patellar deep tendon reflexes (DTR). The neuro called for a complete MRI and several blood tests. My left arm started to feel sore and weaker than the right arm at this point.
early August 2012 - The MRI was essentially normal except for an enlarged thyroid that had a multinodular goiter. The neuro did another exam and remarked that I "appeared more normal than appreciated 2 weeks ago". He referred me to an ENT concerning the goiter, and he also referred me to a neuromuscular clinic. About that time, he dropped the term "ALS" on me. Also, my right leg started to feel like the knee and behind the leg would "give away" if I wasn't careful.
middle August 2012 - I started to get twitches in my left knee. Further, my left arm continued to feel out of sorts. The ENT said that my thyroid issues were in no way related to my muscle weakness, and that was that.
late August 2012 - I visited the neuromuscular specialist. After a clinical exam, she asked me what I was afraid of. I told her ALS, and she flat out said I did not have ALS. I mentioned my earlier EMG/NC, and she promptly dismissed that. She gave me an EMG/NC on both my legs and my left arm. She could find nothing to point to ALS. She did write in her report that I had brisk (+3) patellar reflexes. I feel a little better afterwards.
early September 2012 - A followup visit to my neuro goes uneventful. He remarks that my reflexes are "less brisk".
November 2012 - My legs start to feel worse. My running becomes more sporadic, and it starts to feel uncomfortable to stand up for longer than 1 hour. I start getting twitches in both legs and feet. I occasionally get them in my left arm.
February 2013 - My right arm starts to feel weak. The twitches start spreading to both arms.
April 2013 - My left hand starts to feel clumsy. Additionally, my right arm starts to feel a bit weaker. My right leg has a fairly constant weakness around the knee area. The twitches are more widespread.
May 2013 - My tongue starts tingling. Everything else seems the same. I change states (finished my PhD)
June 2013 - I go to a new PCP about my worsening symptoms. He orders blood tests and a thyroid ultrasound based on my history. My swallowing starts to become difficult, and I feel like it's more of an effort to speak correctly.
late June 2013 - The blood tests indicate that my fasting glucose is high (111). The tests also indicate that my red blood cell and hemoglobin counts are higher than normal. My thyroid ultrasound reveals 2 nodules in one lobe and the other lobe looks to be mostly filled with large nodules. My TSH and T4 levels are normal.
early August 2013 - My speech still sounds awkward to me, but my swallowing issues seem to have cleared up. My legs and arms seem to feel even weaker now. It's a tad painful and tough to do anything too tough with them. I've stopped exercising altogether for the past 3 months because it's getting really uncomfortable and hard to do cardio. I'm scheduled to see an endocrinologist in November (they don't seem very concerned with the nodules) and a neuro in December (lol).
That's it. Should I still be worried about ALS? Also, can anyone relate to what I'm going through now? I admit that I may sound crazy, but it's really maddening not knowing what's wrong with me and having to wait for so long to nail down a diagnosis.