ALS symptoms??

[EPS868]

At the end of April this year, I woke up on a Sunday morning with shortness of breath upon exertion and a "hard" heart beat.  Fast walking/working out/running elicited the shortness of breath. Heart rate in 80's/90's while laying down.  Never had these symptoms before. GP referred me to a cardiologist within a week.  Ultrasound, EKG, and 24 HR heart monitor all normal. Cardiologist put me on a beta blocker which relieved the "hard" heart beat but did nothing for the shortness of breath upon exertion.  GP put me on Temazepam to help me sleep (had never taken a sleeping pill before, always a good sleeper until this started).

Had CT scan of chest w/contrast three weeks after symptoms started (mid May)...negative.  GP referred me to a pulmonologist, but appt. not until mid-June.  In the meantime, by mid-May, started to get several episodes of feeling "out of it"; loss of appetite; unable to stand w/out fatigue for more than 5-10 minutes.  Losing weight/losing muscle mass.

GP referred me to a neurologist.  By this time (five weeks into symptoms) I had really "dinged" my right shoulder and scapula area by sleeping wrong.  Extreme pain in shoulder blade/shoulder/upper and lower arm into hand.  Neurologist did all standard physical testing (strength, memory, standing on toes/heals/walking in a line, etc).  He deemed me normal neurologically except for the right arm....gave me some cortisone  shots.  I expressed concern over shortness of breath (respiratory) possibly being a neurologic problem (i.e. ALS, MS) and he said no to both.  Suggested it might be a virus. Said he was very learned in ALS because he had trained under Dr. Appel at Baylor (leading ALS specialist in world).

By this time I had taken FMLA  leave from work because my R arm was killing me (despite several chiropractor visits) and I was still having "out of it" episodes. My GP did every type of blood test possible and everything was negative.

By the seventh week I finally saw the pulmonologist.  Had a huge battery of tests.  Doctor said all tests were normal and perhaps I was having bronchospasms.  By this time I could hardly walk a few yards without getting out of breath.  He prescribed me an inhaler and also scheduled a "sniff test" which would show if I had any diaphragm issues (ie. paralysis). BTW inhaler did nothing to improve symptoms. Saw same doc two weeks later for repeat of breathing test and still normal.

I had the sniff test two weeks later (nine weeks into symptoms).  Of course it was normal.  By this time, I had developed fasciculation's in both thigh muscles.  I also felt as if my thighs were "weaker" when walking down stairs.  I also noticed some atrophy developing in my R tricep and it appeared as if my R bicep was not flexing (but was not atrophying).

My GP scheduled an "urgent" appt. with my neurologist that I had seen five weeks earlier (by this time my GP thought I was having severe anxiety and strongly suggested I see a psychiatrist). I received an NCV from toes to upper arms and an EMG on two spots each on my calves, two spots each on my thighs. His notes deemed everything normal except for borderline carpal tunnel on my right arm. He again did strength tests and reflexes and all normal.  He did not note any fasciculation's (and I didn't feel any); he did test the muscle in which I had been bilaterally feeling them. By this time my R arm felt much better as far as pain. We discussed ALS in depth and he emphatically stated that I did not have it.  He suggested that perhaps I should investigate auto-immune diseases more in depth and endocrine issues with my GP.  Of course my GP at this point thinks it's all stress because all tests have been normal.

By the end of July I was feeling much more weakness in my thighs.  I had pretty much been bed ridden (probably mainly due to anxiety/depression) for over two months.  My R arm (esp. triceps) had really atrophied and my thigh muscles were bilaterally atrophying.  I was no longer feeling fasciculation's in my thighs but was now feeling them in both right and left triceps. I was also developing a shaky feeling in both arms when lifting anything; i was finding it difficult to do fine movements like cutting food and texting (but not writing or typing). I was also getting a cramp on the right side of the body whenever I twisted and a cramp in my right pectoral muscle when flexing).  I still had horrible fatigue.

I also noticed that my diaphragm seemed to have shrunk.  I used to have a very prominent one.

I also saw a psychiatrist during this time.  I was placed on Lexapro (started out at 5mg mg and increased to 20mg by the end of August).

Saw my neurologist twice in the span of two weeks (end of July to mid August) due to a slowly developing shaky feeling in my arms and hands.  He diagnosed me with "essential tremors" of my arms.  He also sent me to a neuro-muscular specialist.  I saw him at the end of August.  He did physical exam; I was able to produce fasiculations in my R tricep.  He said emphatically "you don't have ALS" and prescribed an anti-convulsant.

So now we are at the end of September, 22 weeks after my first symptom (shortness of breath) started.  Here is a breakdown of how i am at this point:

*I feel like my breathing has improved.  Doing day-to-day tasks seem more normal now (compared to feeling awful during the summer) like walking the dogs, taking walks, riding bike, doing dishes, etc.  I am still unable to do a weight work out or run.
*Bilateral leg weakness seems to be less now but still there.  I will admit that I was literally almost completely immobile for three months.  Obvious atrophy in thighs.  No fasciculation's but do see "waves" in medial lateralis muscles (bilaterally) when flexing (both neurologists were shown this).  Have been walking everyday for past month and legs will feel "sore" afterwards, but could be the result of doing no activities for so long.  Able to stand on toes and heals with ease.
*Right tricep very atrophied compared to four months ago.  Bicep seems to be slightly smaller but now can flex it  Also will still get fasciculation in tricep if i do a pushup (often wonder if I developed Personage Turner Syndrome) Both forearms seem thinner.  Left bicep and tricep muscles are slightly smaller.  Can do pushups but very much a weaker feeling than before four months ago.
*Fatgue in morning.  Don't get out of bed until between 8-9am.  Could be a "hangover" effect from Temazepam.  Endurance increases substantially as the day progresses and feel normal in the evening.
*Shaking in arms/hands is almost gone but still feel like it's "almost" there.  Almost feels like it's coming from my head/neck area.  Don't really have issues with fine gripping anymore (never lost strength in hands, just felt shakiness, but cutting food almost feels normal).  Never had an issue with writing or typing.
*No longer have "out of it" feelings.  Have gained back almost 15lbs during the last 5-6 weeks.  Almost no anxiety or depression anymore.  Normal appetite has returned. Could be the result of all the meds, but that's fine with me.

My GP and first neurologist had originally suggested that perhaps I had some weird virus that was taking forever to exit my body and then stress exasperated the situation.  I did quit my job (which required some mental and physical endurance 10 hours a day four days a week), so I haven't worked in four months.  I also don't feel as if I could make a full 10 hour work day.

I still have it in the back of my mind that I have ALS. I've also had friends suggest auto-immune diseases, endocrine diseases, metabolic diseases, thyroid diseases, etc.  Based on all that I've typed, what do you guys think?