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harmonyboy74

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Hello,
I’ve been visiting the forums for the last few months but this is my first post. I’m a 38 year old man and in March of this year I started having some symptoms that mostly included dizziness, tingling, weakness in my neck that would come and go, and what felt like mild heart palpitations. I had a friend who was diagnosed with MS around then and I figured I was just having sympathetic symptoms so I went to my GP and had a physical. They ran all kinds of bloodwork including tests for Lyme, thyroid issues etc, and when all of that came back normal my doctor referred me to a cardiologist to have my heart checked out. I had an ultrasound of my heart, and a stress test where I ran on the treadmill hooked up to all kinds of heart monitors. All of that was normal and my GP ordered an MRI of the brain just to rule out MS. The MRI came back normal and my doctor said he believed my problems were anxiety related. I’d had some very stressful changes at work early this year and I agreed to take 10mg of Celexa once a day. He also referred me to a neurologist to do a Neuro exam and review my MRI. This appointment was a couple months away since everything seemed normal so I started working to overcome this supposed anxiety. The dizziness and tingling slowly faded away and my neck was not really an issue. It just seemed tired once in a while. Then in June I noticed that my legs were feeling a little awkward when I walked. I initially didn’t think much of this until one day I noticed I was having some foot cramps, and what seemed like a hand cramp. My left hand felt a little clumsy and I had to concentrate to button my shirt and floss my teeth. I consulted Dr. Google thinking I would find something about potassium or dehydration that was causing muscle cramps and then by chance I stumbled across something about ALS. I didn’t know what ALS was but when I read what the early symptoms were it was enough to send me running to the bathroom to vomit. They seemed to fit what I was experiencing to a tee. I then spent the next few days convincing myself that I didn’t have ALS and doing every self test I could think of to back up that theory.
In March I had been playing tennis a few times a week and running 3 miles every other day. I began to notice that I was having a harder and harder time finish my runs because I felt winded. By June I had stopped running altogether because I just felt so out of breath every time I ran. Part of me figured this was due to the heat. I live in Southeast Virginia on the middle peninsula and by the time we get to June we have 90 and 100 degree temps sometimes. I’m a singer and I also noticed that my voice was weaker and hoarse in the high end of my range. In July I began to notice that my forearms were shrinking. My watch which has a sized metal band began to slide up and down my arm when it once had been a great fit. I also noticed that my calves which were once defined began to shrink as well. I figured I had stopped running so that was probably the cause. By the time I saw the Neurologist in July I was having muscle twitching in my arms and legs. She completed a full hour long work up and exam which examined my history, my recent MRI, tested my reflexes, dexterity, and muscle strength. I told her I was concerned about ALS and she told me that she didn’t see anything that looked like that to her at all. She suspected a pinched nerve and ordered some x-rays of my neck. She also scheduled me for an EMG to put my mind at ease. When the x-rays of my neck came back normal I felt sure that the EMG would show problems and that I’d then start the process of confirming diagnosis with a second neurologist and learning to live with ALS. On EMG test day they completed the nerve conductivity part of the test on my left arm and leg, and then came back to do my right arm. The doctor told me that was because she hadn’t seen numbers that good all week and wanted to compare the left to the right. They then completed the needle part of the test on my right side working from my shoulder down to my arm and leg to my ankle. At the end of the test she said it was as she’d expected. No ALS. Needless to say I was relieved. I asked her what could be causing my issues and she said anxiety. I agreed to let her increase my dose to 20mg a day of Celexa and took my mother who’d accompanied me to the test out to lunch. I again set my mind to overcoming anxiety.
Throughout the rest of July not much changed. I took a couple trips, played golf and was actually playing better than I’d played in years. At the beginning of August my neck began to feel weak again though, worse this time and constant, my head felt like it weighed 200 pounds. This weakness was not also accompanied by muscle twitching in the back of my neck. This went on for about two weeks. Then I went on a vacation with my family for ten days and by the end of that trip my neck felt better and actually hasn’t given me any other problems since. I did however begin to have some difficulty swallowing then. No choking or anything too serious but enough for me to be conscious of it. My hands also continued to feel awkward and clumsy but that too isn’t really noticeable unless I’m handling small objects. My typing doesn’t seem to be affected, and I can still play piano and guitar with no trouble. At the end of August I saw my neurologist again for a follow up and she completed the standard exam. I told her about my swallowing difficulties and shortness of breath, as well as my continued clumsiness in my hands. She was not concerned however and scheduled another follow up for the end of December. She did however refer me to the Neurology department at the University of Virginia just to ease my mind and I got an appointment for the beginning of October. Between the time I saw my regular Neurologist and my appointment at UVA I started feeling short of breath more often. Even when playing golf I felt like I needed to rest and recover after every swing. I called my regular Neurologist and she was out of the country. I did however get a call back from one of the other doctors at the office and he scheduled me for more blood work and made an appointment for me to have some breathing tests with a pulmonologist. The breathing tests did show some problems but the doctor said the results showed they were issues of obstruction possibly due to my formerly being a smoker. I quit in 2011. He also said that the results were not consistent with breathing issues seen in neurodegenerative diseases, and he scheduled more tests. I went in for a lung scan to see if I had a pulmonary embolism, and a metacholine challenge to see if I had asthma. Both of these tests were normal but the pulmonologist prescribed me a once a day inhaler of Spiriva to hopefully help overcome the obstruction and breathing difficulty.
October finally came and my symptoms had progressed to more twitching in my arms, legs, torso, eyelids, and muscle shrinking in my arms and legs. I finally went to my appointment at UVA and had another full Neuro exam. I then had another EMG which they completed again on my right side. This time they warmed up my hands and feet in big soaking tanks before the test. At the end the attending Neurologist came in, repeated the Neuro exam and told me that they don’t see any sign of anything unhealthy in the tests or EMG. No ALS. He said that they diagnose ALS about once a week in the neurology department there and that the EMG would definitely detect any abnormalities even before there were symptoms. Since I’ve definitely had my symptoms quite a while I felt relieved again. I asked him what he thought could be causing my muscle shrinking and he recommended I begin exercising again, saying that perhaps I overreacted to my symptoms and stopped my regular routine which might explain my loss of muscle. I left and took my poor worried mother to dinner this time and tried to process all of this. While I certainly appreciate the relief of the good news, I still have no explanation for the muscle loss. I hadn’t been lifting weights to keep my arms in shape and now I can easily put my index finger on my other hand in between my wrist and my watch band. My legs are also thinner, and I’m having more trouble swallowing again. I’ve not lost weight but I’m pretty sure it’s because I’m offsetting it in the middle. I’m now currently carrying a bit of a belly I’ve never had before. I’m 6’3’’ and have maintained around 195 pounds. I also noticed this week that when I hold my teeth close together I can feel a slight chattering. My hands are getting thinner, clumsier lately, I’m constantly out of breath and feel weaker all the time but still have no answers at all. I can still run and throw in the yard with my nephews but I’m immediately winded. I’m sure this is not a unique story here but I’d love any insight or ideas anyone might have. Thank you all so much for taking the time to read this! I didn’t intend for it to be so long but looking back it’s been a long year so far…
 

Luke

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I'm sorry to hear about the troubles you've had but it's great to know it's not ALS. Having that taken off the table is a sigh of relief for you, at least. I don't have any words of wisdom or ideas for you, but I wish you well in your continued search for answers. In the meantime, take stock of all the physical things you can still do -- it sounds like you're not experiencing any objective level of physical disability, which should serve as further reassurance to you that this isn't anything too ominous or scary. The fact that your symptoms can't be detected clinically and that they come and go also points away from anything serious. Good luck and take care.
 

Grateful

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Hi
I think you have been given your diagnosis but did not quite grasp it because you were so focused on possible neurological problems; COPD is defined by the World Health Organisation thus:

'Chronic obstructive pulmonary disease (COPD) is a lung disease characterized by chronic obstruction of lung airflow that interferes with normal breathing and is not fully reversible. The more familiar terms 'chronic bronchitis' and 'emphysema' are no longer used, but are now included within the COPD diagnosis. COPD is not simply a "smoker's cough" but an under-diagnosed, life-threatening lung disease.'

You need a good respiratory medicine specialist to get to grips with this so I suggest that you stop worrying about ALS/MND and start dealing with the disease that you do have; I wish you the best of luck in the future.
 

notme

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Hi

It really does sound like you let anxiety get the best of you. Clear EMG, clear MRI and NCV mean there is simply nothing going on in the muscles or the nerves that control them.

I used to play the guitar, and typed 80wpm. Believe me, you could do neither with ALS in your hands, or any kind of trapped nerves in them for that matter.

The breathing issues, since cardiac issues have been ruled out, suggest COPD. Did the doc mention it? The spirits will help, but you may need further testing and a sleep study to check for sleep apnea which can cause all kinda of daytime issues.

With true Ateophy, there is always weakness that a doc finds when he checks you out. I gather the exams were all normal, so the seemingly smaller muscles could be from your lack of exercise now, as the new belly you have developed.

There is something called BFS. Read the sticky posts for more on it. It is harmless, but irritating.

If the swallowing issues continue, perhaps a check of that area for GERD or the like?

Sounds like you're really fine other than the lung issues. Sometimes, we can have exercise induced asthma, too.

Good luck. There are just no issues here that point to ALS
 

Tokahfang

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More paragraph breaks, please!

I agree with my fellows above, but I wanted to add a few things about BFS. BFS isn't dangerous, it is irritating, but I wouldn't say it is harmless. In addition to the harmless twitching it causes, it plunges people into anxiety (often more disabling than a minor physical impairment), causes weight loss, and often some of the chronic day-to-day disabling symptoms of things like fibor and chronic fatigue. It is a lot like insomnia, it isn't the most directly dangerous thing, but if it insomnia causes you to take a header into a truck or lose your job, you probably won't be much appreciating the difference.

BFS does get better, though, over time. So if you can managed your breathing issues, a year from now you should be feeling a lot better.
 

Grateful

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Whilst I agree with Notme's and Beky's observations I think I should add that unless you take your lung problems seriously and see a pulmonologist as a matter of urgency you may not be around in a year's time to enjoy an improvement in your BFS.

The standard tests which they have already run rule out any form of asthma, so you are stuck with, at best, COPD which is a life-threatening disease. One in twenty people in the US die as a result of COPD. There are other, even nastier, lung conditions which also result in the increasing breathlessness which you describe.

You say that you have no answers but that isn't the case; you've had answers from your doctors but you have ignored them because they were not the answers you wanted to hear. It is your life so you can throw it away if you wish but please don't encourage others to go down your path...
 

harmonyboy74

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Hi Guys,

Thanks so much for taking the time to read my story. I'm sorry I didn't include more paragraph breaks and that it runs on and on. I really appreciate everyone's take on what may be the root of my issues as well. I guess the things that leave me wondering the most are:

1. If I didn't have any lung problems like this when I was a smoker why would they show up a year after I quit? I'd been exercising regularly, and running 3 miles with no difficulty but now I get out of breath just by walking out to the car to get my briefcase and back to the house. The doctor never mentioned COPD but said the results showed a slight obstruction but were still in the normal range. He said we'd try Spiriva just to see if maybe it'd help.

2. I definitely know that anxiety can wreak havoc on the mind and body but what would cause my muscles to shrink so quickly? When I hold my hand out and let my watch band hang lose from my arm there is literally a half inch of space between it and my arm. This all happened in a matter of about 3 months. I had never done any strength training to build up my arms so how could they just suddenly shrink over such a short period of time? Legs too.

Thanks again for the time and consideration guys! You're all great!
 

Grateful

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That's like asking why you have lung cancer when you gave up smoking last year; the damage is done over time and it takes time to reveal itself. Your unwillingness to accept that your smoking has permanently damaged your lungs is very common but unfortunately it doesn't stop your lungs being damaged. There are other contributory factors as well; both indoor and outdoor pollution will wreak extra havoc on someone whose lungs are already damaged by smoking.

You need also to bear in mind that exacerbations of COPD, usually bacterial or viral infections, will do still further damage; it's a vicious circle since the COPD makes you more likely to get bacterial and viral infections in the first place. And as I mentioned above there are even nastier lung diseases; frankly, someone who is so obsessed with ALS/MND that he doesn't follow up his increasing breathlessness with doctors who specialise in treating people's lungs is not doing much for his own life expectancy.

As for the losing lots of weight very quickly, well, we're back to the nasty lung diseases as well as your very obvious extreme anxiety. You say that the doctor you saw said your spirometry showed some obstruction but was within normal limits; was he referring to normal for non-smokers or normal for smokers? There's a big difference.

I'm not a doctor and I really hope that you do not have lung cancer, but on the information you have provided it is far more probable that you have lung cancer than that you have ALS/MND. Please go and see your doctors and start listening to them.
 

harmonyboy74

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I understand that symptoms of something like lung cancer could show up years after quitting smoking, or even if having never smoked at all. The pulmonologist I've been seeing x-rayed my lungs and also had a ct scan completed on them. I'm certain that if I had lung cancer there would have been some indication having had both of those tests. I have a follow up with him as well in a few weeks and am certainly concerned about my own life expectancy.

I agree with you as well on anxiety as a cause for weight loss, but I haven't lost weight. I've actually gained a little weight, but I've lost muscle in my wrists, forearms, and legs. My arms now look foreign to me. They're significantly smaller that they were in July and when I flex my wrist down there's a dent on the top of my forearm that was never there before. I've also noticed the flattening out of my biceps a bit. My strength however, while diminished somewhat is certainly nowhere near clinical weakness.

Believe me when I say the last thing I want to have is ALS/MND. If I were here posting today because I had a foot cramp and some muscle twitches this week then I would completely understand your thinking I'm so obsessed with ALS/MND. I'm here though only after 8 months of watching things about my body change rapidly, and exhibiting symptoms consistent with ALS, ie twitching, muscle loss, difficulty swallowing, shortness of breath, loss of fine motor skills in the hands, some hoarseness in my singing voice, etc. As for not being able to accept that I don't have ALS. You've got the wrong guy. I'm more than happy to accept that. I'm here because I was hoping that in such a large community of people with lots of first hand experience and expertise, someone would have a recommendation that neither I or my doctors have thought of as a cause for my issues that's not ALS. Frankly, I'll openly admit that I'm obsessed with recovering and getting on with my life. Thanks for taking the time to try and help me!
 

Grateful

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Hi,

As Shakespeare put it, I'm hoist on my own petard.

I have to point out that COPD specialists are intimately acquainted with skeletal muscular atrophy; it is a well known systemic feature of the disease. Indeed, there is an article in the January 2012 issue of the medical journal Thorax about it which is an open access article which you can read; it's heavy duty science stuff exploring why this is the case. There is, however, no doubt that this is the case.

I didn't mention it in my earlier reply because the article reiterates the fact that it is usually an indication that the prognosis is far from good, and I did not want to dump that on you. Lung cancer can be treated successfully sometimes; with COPD with systemic features then even lung transplantation may not be a viable option.

I chickened out and was trying to sugarcoat the pill. That was a mistake on my part, and thus I am hoisted on my own petard since I should have just said this straight away and left you to read the background material; yes, COPD can progress that fast and yes, it can explain skeletal muscle atrophy. It's a progressive and degenerative disease with effects which are not confined to the lungs.

I suggest that you accelerate your follow up and check that the lung guy is a COPD specialist, and if he isn't then get one who is. He can either confirm that diagnosis or exclude it from the list of differential diagnoses on severe breathlessness combined with skeletal muscle atrophy.

It's past 3am here so I had better get some sleep; you haven't posted enough to be able to do private messaging but you can leave an open message to me at my user profile if you want to follow up outside the thread. I should declare a personal interest in the Thorax paper since I am treated at the hospital where the research was done. I don't have COPD, and they are not my doctors but I mention it for completeness. I hope that this is of some help to you...
 

notme

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Hi

While it may be true that some of your symptoms seem similar to ALS, what you're describing is body-wide. ALS doesn't work like that.

It starts in one area and moves on to other areas over time, some quickly, some relatively slowly.

Muscle loss would have shown on an E M G, and. Doc can see clinical weakness you may not notice when he/she compares limb strength.

With the body wide stuff you seem to have going on, I would be looking at my GP for answers and requesting auto-immune testing, and more than a basic blood panel.

I'm not sure what kind of cardio workup you had, but perhaps you need a bit more than the standard EKG.

COPD has been mentioned because Spiriva is the med indicated for it. If there is an obstruction, something is causing it. You said the X-ray and CT were ok on the lungs?

Something is going on, it sounds like you're looking in the wrong areas, though. Did the doctor note atrophy or are you the one noticing it?

Limbs can simply change when we do less with them. There is a lot of bone and tendons in the wrist area, but not much in the way of muscle in that area.

ALS atrophy would generally begin somewhere like the space between tour thumb and forefinger.

Try doing some light strength training if your doctor approves it. Your lab work would have shown muscle loss in CPK levels, I'm assuming it didn't.

I hope they get you sorted out, but I'd stop the neuro and work with a good internist at this point personally, and a cardiologist.
 

Luke

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How is your sleep? Do you wake up often, have any trouble breathing (apnea), etc?
 

Grateful

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I see that Notme has asked whether the X-rays and CT scan showed anything obstructing the lung; it is a common misconception of COPD that it would show up on an X-ray or CT scan.

COPD is diagnosed by spirometry. There are rare cases where skeletal muscle wasting is the first symptom, preceding the breathlessness.
 

harmonyboy74

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Hi Guys,

I've actually been sleeping pretty well, as far as I know and I'm not waking up many times, at least that I'm aware of. My breathing seems to be ok lying down as well.

I was reassured by the EMGs which found nothing even though my forearms are significantly smaller. The Neurologist at UVA assured me that if there was ALS that the EMG would pick it up months before I even noticed a symptom. So I figured at this point it probably can't be that since my muscle shrinkage is noticeable in both arms and it still showed nothing. I have however continued to have difficulty swallowing this week, and noticed yesterday that my tongue is slightly scalloped along the edges and constantly twitching. I actually hadn't looked at it before yesterday.

I read also that tongue scalloping could be caused by sleep apnea and some other things. Perhaps since my breathing tests showed a slight obstruction it's related? Maybe I'm not sleeping as well as I thought. I have felt sleepy while driving and working. I read about the muscle wasting caused by COPD and was very surprised. I had never heard of that before. I know that if that's the case the prognosis isn't very good but at least it would be treatable to some degree.

A friend brought over a hand dynamometer yesterday and tested my grip pressure. They were both in the normal range, although my left hand was about 10kg weaker than my right. That concerns me some because the left hand is where I first felt clumsy, and my left arm appears to be smaller than my right.

Oh also, my CPK was normal when tested.
 

harmonyboy74

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It seems I've been moderated on my last post. I thought I would add my test results as well in case anyone sees anything interesting.

Tests: (1) CBC (2043210)
WBC 6.1 k/mcL 4.8-10.8
RBC 4.74 Mil/mcL 4.70-6.10
Hgb 15.0 gm/dL 14.0-18.0
Hct 43.7 % 42.0-52.0
MCV 92.3 fL 80.0-100.0
MCH 31.6 pg 27.0-32.0
MCHC 34.3 gm/dL 33.0-37.0
RDW 12.9 % 11.5-15.0
Platelet Count 194 k/mcL 150-450
MPV 10.0 fL 7.4-10.4

Tests: (2) Auto Diff (2043210)
Neuts auto 56.2 Rel % 41.3-69.5
Lymphs auto 29.0 Rel % 18.5-49.9
Monos auto 8.9 Rel % 4.2-12.4
Eos auto [H] 5.6 Rel % 0.1-4.5
Basos auto 0.3 Rel % 0.0-2.3
Neuts auto Abs 3.4 k/mcL 1.7-8.5
Lymphs auto Abs 1.8 k/mcL 1.1-4.4
Monos auto Abs 0.5 k/mcL 0.0-0.9
Eos auto Abs 0.3 k/mcL 0.2-0.6
! Basos auto Abs 0.0 k/mcL 0.0-0.1

3/30/2012 11:00:00 AM CMP, Lipid Pnl, TSH, eGFR, eGFR
ID: RMG Shared Laboratory 130690099001
Note: All result statuses are Final unless otherwise noted.

Tests: (1) CMP (1043262)
Sodium Level 138 mmol/L 135-148
Potassium Level 4.5 mmol/L 3.5-5.5
Chloride 104 mmol/L 100-110
CO2 29 mmol/L 22-32
Anion Gap [L] 05 mmol/L 06-16
BUN 12 mg/dL 5-23
Creatinine 1.10 mg/dL 0.61-1.24
BUN/Creat ratio [L] 10.9 12.0-20.0
Glucose 93 mg/dL 70-120
Calcium 9.3 mg/dL 8.4-10.2
Protein Total 6.8 gm/dL 6.4-8.3
Albumin 4.3 gm/dL 3.4-4.8
Globulin 2.5 gm/dL 2.5-4.5
Alb/Glob ratio 1.7 0.8-1.7
Alkaline Phos 69 U/L 32-91
AST 22 IU/L 0-37
ALT 25 IU/L 0-41
Bili Total 0.8 mg/dL 0.1-1.5

Tests: (2) Lipid Pnl (1011050)
Cholesterol 157 mg/dL 0-200
Triglycerides 173 mg/dL 0-200
HDL [L] 35 mg/dL 40-60
According to the national cholesterol education program guideline related
to ATP III recommendations:
<40 mg/dL is a low HDL-cholesterol with a major risk factor for coronary
heart disease
>= 60 mg/dL is a high HDL-cholesterol with negative risk factor for
coronary heart disease
LDL calculation 87 mg/dL
Optimal <100 mg/dL
Above optimal 100 - 129 mg/dL
Borderline High 130 - 159 mg/dL
High 160 - 189 mg/dL
Very High >= 190 mg/dL
Chol/HDL ratio 4.5 Ratio 0.0-4.5

Tests: (3) TSH (1001204)
TSH 1.77 uIU/mL 0.34-4.70

Tests: (4) eGFR (9613896)
eGFR AA >60 mL/min/1.73 m(2) >=60
Estimated glomerular filtration rate to be used for African American
patients.

Tests: (5) eGFR (9613896)
eGFR >60 mL/min/1.73 m(2) >=60
Estimated glomerular filtration rate to be used for non-African American
patients.
eGFR AA >60 mL/min/1.73 m(2) >=60
Estimated glomerular filtration rate to be used for African American
patients.
 
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