Join Date: Sep 2011
| | Weakess, Looking for your opinions or suggestions
I thought perhaps itís a bit premature to post in the ALS board, or maybe Iím just scared to, so here I am. I am experiencing noticeable muscle weakness throughout my entire body, however it seems to be pronounced in my arms and legs. My core muscles, like my diaphragm, , jaw, facial, and abdominal muscles also seem to be affected, although i think it is less noticeable than my extremities. If you have a moment, I was hoping some of you could give this post a read. Sorry for the length. I am 30 years old and male.
This all seems to have started in about august of 2011, but i also had some similar problems back in 2008 that seemed to diminish.
I think maybe it is best if I give a timeline of what happened.
Early 2008 - benign fasciculation syndrome diagnosed after body-wide muscle twitching for months. seemed to resolve by 2009. no noticeable weakness or other symptoms other than anxiety from the fear of having ALS. Symptoms seemed to subside after about 6 months.
Skip ahead to 2011
Early August 2011 - Everything is fine. Life normal, working hard, staying busy etc.
Late August 2011 - Suddenly become ill with some kind of flu-like sickness. It lasts about 5 or 6 days and then I seem to recover from it for a day or two. Then I develop significant fatigue, mental fog, coordination problems, muscle twitching all over body, weigh loss, generalized weakness and situational depression. The fatigue was so bad that I had to quit my job temporarily as I could hardly get out of bed or off the couch. I did not really characterize my fatigue as Ďweaknessí at this time, just feeling extremely tired. I saw my doctor numerous times and had dozens of blood tests done. Everything came back fine except for slightly low vitamin D. Was referred to a neurologist and I had a spinal tap and that came back completely normal.
This continued with no noticeable improvement until late October 2011, which is when I began to improve. I was able to return to work in early November and wasnít completely better but greatly improved. While many of my symptoms lingered, i felt well enough to function.
December 2011 - What I began to notice in December was similar to, but not as severe to what I had experienced in a couple months back. My first observation was that I was having difficulty standing in place. My legs felt weak and I kind of wobbled and swayed. I thought maybe I was just tired and having lingering symptoms from whatever I had before. Since then, this weakness has gradually spread across my body and the intensity has increased dramatically, mainly manifesting in my legs and arms. The muscle twitching like i had in 2008 returned and is body-wide but primarily focused in my arms and legs. I also have problems with dizziness and clouded thinking and problem solving. I get winded extremely easily, going up and down stairs is the worst. My overall strength is greatly declined, or at least seems to be. I have trouble with complex movements of my hands, typing, using a mouse, tying shoes. Everything just takes longer or fails on the first attempt. I also have some slight speech problems like stuttering and difficulty finding words and low volume.
Late December 2012 and current. I start having strange and alarming heart palpitations with faintness. For the past 6 years, I have had a history of palpitations stemming from an ablation in 2006 for PSVT. I have had very regular, benign PVCs and PACs, most likely as a complication of the procedure since then. These new palpitations were something completely different and were rather alarming. Since I had been getting winded very easily and there were new palpitations, my doctor ordered a 30 day heart event monitor to wear. It found that I have been having episodes of non-sustained ventricular tachycardia. They are not sure why, so I had an echocardiogram to see if there is any structural heart disease. I will get the results of this test later this week. None of my doctors seem to think the weakness could be heart related.
I have been on propranolol for about 2 years to try to control the benign heart palpations I have had. About 2 weeks ago I stopped the propranolol and was put on 2.5 mg daily of bisoprolol (a newer beta blocker) to control the ventricular tachycardia and Iíve heard that. I have heard that muscle weakness is a potential side effect of beta blockers, but is not common. My hope is that we can eliminate structural heart disease as a problem, which will mean the v-tach is benign so I can stop the beta blockers and see if thatís causing this weakness. The difficulty there is v-tach can cause sudden cardiac death, and the beta blockers help to prevent v-tach, so itís somewhat of a gamble.
I use to have good days and bad days. Now all days are some form of bad, with varying degrees of weakness. One thing I notice is the weakness moves around, some days itís worse in my legs, other days itís worse in my arms. The weakness seems to vary in severity throughout the day.
The only tests that have come back out of range throughout all of this are low vitamin D a couple months ago, and my creatine kinaise was slightly high. 285 in early january. (standard range is 0-200). My neuro said he considers anything below 1000 to be normal. I plan to get this rechecked soon.
Had a spinal MRI and all was normal except for 2 buldging discs in my thorascic spine at t7-t8. I thought for a while this could be an explanation of my leg weakness, but then the arm weakness started and it no longer made sense.
So why am I posting and what am I looking for? Iíve been waiting so long for an EMG itís crazy. The anxiety of waiting for this test has been hard on me. Itís going on 2 months since it was scheduled. I have Kaiser in Sacramento, CA and apparently only one doctor performs them.
My main fear is ALS or some other debilitating or fatal neuromuscular disease. It is also possible that I have some new or worsening structural heart disease. I would gladly take a heart problem over a neurological problem. When observing my symptoms and history, i see things that make me hopeful, and other things that scare me. My neurologist seems very good and says he doesnít see anything on my physical exam that alarms him other than the description of my symptoms.
There is a bottom line though, and that is this has severely affected the way i live my life. Last year, I was a totally normal, strong, 30 year old guy who could do whatever he wanted. Now, I am extremely limited in what I can do physically. my emotional state is not so great. my girlfriend of 9 years is extremely understanding and supportive but this must be hard for her as well. I can tell that she is also scared. I foresee having to quit my job of 15 years for good by the end of this month and that will cause a whole spectrum of new problems.
I feel like the answers are coming (EMG is next week, echocardiogram results this week) but in the meantime, Iím really just looking for your opinions, suggestions, support... whatever youíve got. Iíll take it.
Thanks so much for reading.
Here are the labs Iíve had done in case anyone is wondering.
1/5/2012 CREATINE KINASE (ELEVATED)
1/5/2012 LACTATE DEHYDROGENASE
1/5/2012 MYOGLOBIN, URINE
12/5/2011 POTASSIUM, SERUM
12/5/2011 CREATININE, SERUM, WITH GLOMERULAR FILTRATION RATE
12/5/2011 GLUCOSE, RANDOM
12/5/2011 SODIUM, SERUM
12/5/2011 COMPLETE BLOOD COUNT WITH DIFFERENTIAL
12/5/2011 WHITE BLOOD CELL DIFFERENTIAL, AUTOMATED
10/12/2011 GLUCOSE, CEREBROSPINAL FLUID
10/12/2011 CEREBROSPINAL FLUID PROTEIN
10/12/2011 CULTURE, CEREBROSPINAL FLUID
10/12/2011 VDRL, CEREBROSPINAL FLUID, QUALITATIVE
10/12/2011 CELL COUNT WITH DIFFERENTIAL, CEREBROSPINAL FLUID
10/12/2011 GRAM STAIN, CEREBROSPINAL FLUID
10/12/2011 WEST NILE VIRUS IGG+IGM, CEREBROSPINAL FLUID
10/12/2011 HERPES SIMPLEX, PCR CEREBROSPINAL FLUID
10/5/2011 GLUCOSE, RANDOM
10/5/2011 ALT (ALANINE AMINOTRANSFERASE), SERUM
10/5/2011 CALCIUM, SERUM
10/5/2011 CREATININE, SERUM, WITH GLOMERULAR FILTRATION RATE
10/5/2011 ALKALINE PHOSPHATASE
10/5/2011 BILIRUBIN, TOTAL, SERUM
10/5/2011 CREATINE KINASE
10/5/2011 TSH (THYROID STIMULATING HORMONE)
10/5/2011 ERYTHROCYTE SEDIMENTATION RATE, AUTOMATED
10/5/2011 RHEUMATOID FACTOR, SERUM
10/5/2011 ANA (ANTINUCLEAR ANTIBODY)
10/5/2011 VITAMIN D, 25-HYDROXY (LOW)
10/5/2011 CBC (COMPLETE BLOOD COUNT) WITHOUT DIFFERENTIAL
10/5/2011 WHITE BLOOD CELL DIFFERENTIAL, AUTOMATED
10/5/2011 URINALYSIS, AUTOMATED (WITH MICROSCOPY IF INDICATED, NO CULTURE)
9/27/2011 BORRELIA BURGDORFERI ANTIBODY
9/20/2011 HELICOBACTER PYLORI ANTIBODY
9/20/2011 TSH (THYROID STIMULATING HORMONE)
9/20/2011 VITAMIN D, 25-HYDROXY
9/20/2011 CREATINE KINASE
9/14/2011 STREP A PROBE, THROAT
9/14/2011 HETEROPHILE ANTIBODY SCREEN (MONONUCLEOSIS TESTING)
9/8/2011 LIPID PANEL
9/8/2011 ALT (ALANINE AMINOTRANSFERASE), SERUM
9/8/2011 ALKALINE PHOSPHATASE
9/8/2011 BILIRUBIN, TOTAL, SERUM tachycardia
9/8/2011 COMPLETE BLOOD COUNT WITH DIFFERENTIAL
9/8/2011 DIFFERENTIAL, MANUAL