Old 12-09-2017, 01:36 PM #1 (permalink)
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Default Concerned this may be ALS

Hello,

This is my first posting concerning the possibility I may have ALS. I'm 44 years old and until recently I have been relatively healthy. I work from home and my occupation requires me at a computer for long periods of time and my lifestyle has become more sedentary the past couple of years. I'm not in messed up shape (not overweight, no high BP, low cholesterol) and do keep a balanced diet but I admit, I havent been as active as I once was. Anyway, this spring I started noticing pain in my calf. At first it did not alarm me too much- just was more annoying (feelings of RLS, minor muscle twitching) than anything. Then a pain started flaring up, felt like an electric shock and it would start in my foot and shoot up to my knee. Then some evenings it would move to my left forearm and I'd ice it. I figured maybe carpral tunnel? I used to be a guitarist and worked alot with my hands and forearms, I just didnt know if these two twitches or muscle spasms were related. After weeks of Google searches and anxiety ridden self diagnosis' I went to the hospital. Here they ran a set of blood work to rule out issues like diabetes, deep vein thrombosis, heart disease etc,. They did an xray where they found a mass on my gastrocnemius muscle that prompted an ultra sound. In short, they only found a mass of fatty tissue and brought up an old 'traumatic injury' on my calf that I never had- I was perplexed. After this I went to my PCP where he referred me to orthopedics. The orthopedic noticed some slight atrophy on my left calf, some hyperflexia yet my strength was still good (could support my weight on my left foot, resistance tests were good). An EMG was done and the neurologist didn't find anything out of the ordinary except for a slight leak in my L4-L5. A series of MRI's were ordered and the results from these were more of the same, fatty atrophy on my gastrocnemius muscle and a small Bakers cyst behind my left knee. My follow up appointment again was fruitless, the doctor said they 'hit a wall' and need to run further tests to rule out ...ALS.

This was my introduction to ALS. I realise he said 'rule out' this disease but it has been planted in my head and for the past month I have been in an extreme fight or fight mode. I am currently waiting for my next EMG visit. In the mean time, I see a chiropractor weekly (I started going to him back in 2010 when I was diagnosed with Chronic Pelvic Pain Syndrome, or CPPS for short)- he keeps me functioning and the pain from the Bakers cyst at bay. I have also started sessions with a deep tissue massage therapist. If anyone has done deep tissue massage therapy then you'd know- it can be painful. After one visit I felt wonderful. I came home and my energy seemed to return instantly. The best part was I noticed (or hoped I saw) improvement in my left calf muscle- the curvature seemed to be coming back. Before when I looked down at the inside of my leg- it looked straight, now after my first appointment a little curve seemed to be forming, I still had the dent on the base of the muscle but I felt some relief. Yet in the past week it seemed to shrink back up some. I just don't know if this is ALS or some other neurological disorder. I have noticed a decrease In size in my left arm, forearm and especially in the triceps and a little wasting in my left shoulder and lat area. I have my yearly physical on Monday, Tuesday I go back to see my deep tissue massage therapist while I wait for the next EMG appointment. I try and relax but it is very hard. A roller coaster of hope then pessimism then confusion. I guess I am curious if anyone has any suggestions, I am very new to this and I hope so much it is not ALS but if not that, then what could be going on. Lately my nerves fire like crazy (as I write this, one is twitching in my left arm) but that can definitely be chalked up to anxiety. Some days it's hard to breathe but nights seem better for me, like I can kind of relax and let the anxiety take a break. I've been working out with light weights and wonder if I could be doing more harm than good.

Anyway, thank you in advance for any suggestions or guidance.

Chris
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Old 12-09-2017, 01:47 PM #2 (permalink)
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Default Re: Concerned this may be ALS

My only suggestion is to keep your appointment and get your anxiety treated. I don't see anything that resembles ALS in your post.

When someone is filled with anxiety, if they search for something, they will find it. Let the doctors determine what is medically wrong with you and treat it.
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Old 12-09-2017, 02:07 PM #3 (permalink)
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Default Re: Concerned this may be ALS

Kim,

Thank you for your reply. I really didn't think of ALS until the orthopedic brought up ruling it out. I know that there are many neurological disorders that can mimic ALS. My biggest worry is the atrophy but I also know that once you lose that muscle it won't come back, once the nerves are dead then it's just a slow progression. It has been frustrating and the orthopedic that I was referred to is not very forthcoming and doesn't seem like he listens when I describe my symptoms. Yes, I intend on making my next appointment to get to the bottom of what is going on.

My anxiety lately is pretty bad. I've been waking up with headaches and my jaw and muscles feels very tight and rigid. My chiropractor has suggested meditation and yoga as good ways to relieve the anxiety.

Chris

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Old 12-09-2017, 02:50 PM #4 (permalink)
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Default Re: Concerned this may be ALS

Orthopedists, good as they are for bone problems, arenít the best docs to turn to for neuromuscular problems. ALS does not cause numbness or pain except in more advanced stages of the disease. You havenít described muscle failure, which is what happens in ALS. Regarding twitching, dents and atrophy .... these symptoms are common and nonspecific. So I would followup with the doctor as planned, get ALS out of your mind, and work on managing anxiety.
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Old 12-09-2017, 03:49 PM #5 (permalink)
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Default Re: Concerned this may be ALS

Mod note- moved to DIHALS section. Please continue posting here.
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Old 12-09-2017, 06:22 PM #6 (permalink)
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Default Re: Concerned this may be ALS

Karen,

Thank you for the reply. When my orthopedic mentioned ALS it was during a follow up for a MRI I had back in October. Looking back it feels odd that an ortho would bring this up. ALS is definitely a neurologists territory. Either way it was definitely a curve ball- the follow up was a month after my MRI so I just assumed it's nothing too serious. I feel more encouraged that it's not ALS and now I just wait for the next EMG.
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