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Rounder78

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May 30, 2015
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Lost a loved one
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NV
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Reno
Good Morning

I had two previous threads on the forum which have closed, 1 regarding my Mom and dealing with her ALS diagnosis and 1 regarding the symptoms I was experiencing after meeting Dr. Google and living with a loved one with ALS. A lot has happened since my last post and I wish I wasn't here, but I am.

Since learning about my Mom's diagnosis with ALS in May 2015, life has been hell. My previous posts spoke about dealing with the reality of the diagnosis and living in fear for my Mom and myself some 14 hours away. I just turned 38 last month and have a wonderful wife and 3 year old daughter.

My Mom's journey ended in August of this year. She fought so hard, wanting to hold on to her life, husband, children and grandchildren. My Dad, he retired, they built a house that would keep her safe on the land she grew up on and she fortunately now is in a better place. I can't say enough about my Dad and how he handled the situation until the very end. I did what I thought was right and got up to see her every 6-8 weeks or so. Towards the end, she was reluctant to see people and I had peace knowing she knew how I felt about her.

As I wrote before, I became obsessed with researching the disease and started twitching within weeks of her diagnosis. I went to my PCP about things, many times. Much like others have stated on here, there wasn't much discussion and he sort of dismissed it to anxiety. I would love for it to be anxiety. Obviously the stress of the events with my Mom and other life events (new house, new job, raising a 3 year old) has kept me on edge.

I did really well to stay off this forum and researching for a good 7-9 months, until I started questioning what was physically happening to me (or what I was manifesting). Long story short, 18 months later after my first twitch, I still have not tripped or fallen. I can do all the fun strength tests (tippy toe, toe to heel walk, calf raises, walk on heels, etc). I would say that I experience a wide range of symptoms, depending on the day. I do have a RX for my anxiety and that seems to help. My right leg at times will burn, tingle, vibrate or have an overall dull/numb feeling. It is harder to curl my toes up. I feel like my gait has changed (like I work to pick up the foot) but of course that's all I think about and I've never tripped or anything. I've even taped myself walking and it appears fine.

Over this period of time, there has been some atrophy develop in the affected leg. Measurements are off a bit (in middle of thigh and just above ankle/calf area - right side smaller) and you can feel the muscle mass difference in the quad/thigh area. This is only on my right side. The thigh/quad I've been monitoring for almost a year. The ankle atrophy is more the last 1-2 months. I find it strange to have atrophy start in the thigh/quad area and then skip the calf down into the ankle/foot area. I'm not sure when they popped up but the inside of my knees have sunken in when squatting (both knees identical). The inside of my right foot/ankle has thinned out. All these physical/visible issues while feeling everything. To be honest I've dismissed twitching, as they can instantly pop up in a stressful meeting and jump around (always primary to right calf though). I've read a lot about perceived vs clinical weakness, I have some pain when I walk but I've yet to be truly limited in daily activity. All this, progressing over the past 18 months.

So I am here, scared and afraid that maybe this actually is ALS. I shouldn't say scared/afraid, but terrified that yes, 18 months has passed and I'm still here, but things I can't dismiss have developed (atrophy). I feel like I am a bit more educated than most posting questions in here, having lived thru seeing the disease running its course. That doesn't make me better or their fears any different, but having first hand experience makes it real. I've really held onto the fact that I've always "felt" things. I feel the thumping twitches, I feel the fine vibrating ones. I feel the pain/tingling into my toes. Some days, my leg burns so bad I want to cut it off. Feeling = no ALS. But why the atrophy, why the weakness? Is this just the slow onset/progression of the disease?

So I go to the argument of atrophy without true weakness or would a neuro say I do have clinical weakness? I have tried to take the recommendations of those who replied (notably Mike) in seeing two different doctors to address my concerns. Lots of time talking about things and such. Twitching, yes. Atrophy, yes. Some form of weakness, yes. I've hit most of the stickies.

So give it to me straight, thoughts? A lot of you say don't chase a diagnosis, what good would it do you? Don't go until something "fails". I've taken that advice, but I love my family and would love to have another child. My Mom is the only person we know of in our family, so it can't be FALS, right? There isn't a single test to say yes or no, but the thought of my daughter potentially inheriting? Heart breaking. I'm terrified to have another child who could inherit.

Life needs to continue and it starts with me. This has affected all aspects of my life and I need to fix it. I know something is wrong with my body and I have to man up to find out. I have to be responsible for my family. I'm here for thoughts, guidance and insight. I know many of you have dismissed my concerns from 15-18 months ago. Things have changed a bit and I appreciate a 2nd look. I know there have been many like me, back after a year or more. Being that my Mom had the disease, it's a little bit scary being back here because that means things haven't improved for me.

It's nearly impossible to get straight pictures that don't distort things, but I've attached a couple to look at. Note there is small measurement differences which have developed over this time.
 

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I am sorry about your mom.

I see nothing in the photos that looks worrisome What does your doctor say now? You were told originally that if anything physiological your symptoms sounded more like a local issue or peripheral neuropathy. Your pcp originally said nothing physiological I believe?

I still see nothing in your story that points to ALS. Please let your doctor assess you. You have just been through terrible trauma I am sure it is still affecting you. How could it not?
 
You still don't have ALS, not even a little bit.

You also don't have atrophy and for all your googling and obsessing you don't understand anything about weakness or atrophy.

You poor mother was dead within 15 months and you have spent that time and since obsessing over yourself. We cannot help you mate, no matter how hard this is for you, this is not where you should be.
 
Hi Nikki

Thank you for your response. Thank you for the kind words about my Mom. I miss her every day.

It took a lot to repost in here because I know those replying have limitations. I truly appreciate the time and insight.

My PCP never provided much. As time went on and I took advice to go back, I leveled with him about my concerns and such. He did probably as an extensive neuro exam that a PCP will complete. He essentially told me it was anxiety. But now, over a year later, it's the atrophy that has me concerned. I could send other pictures but as of know, a small angle could grossly distort things. That's why I posted as general one as I could (note there is measurable difference, not great but a change).

I think I mentioned the peripheral neuropathy, wondering if it could be that. I've ate enough candy and sweets in my life for 100 people, so I was questioning a possible link. So at this point I'm thinking my PCP won't offer much, so do I solicit a neuro appt?
 
Hi
Small measurement differences can occur over time, if exercise changes, if the way we are walking changes because of injury or pain or just sheer fatigue. It's not something to worry about.

If there is significant atrophy there would be a marked difference that your doctor would have noticed.

I honestly don't think you need to worry about having ALS, you need to work on dealing with your grief and anxiety and avoid over examining symptoms. please don't let obsession with this spoil the life you should be enjoying with your family.

Good luck
Wendy x
 
Tillie

I spent as much time with my Mom as I could. If you are implying I didn't worry about her or care for her because I was worried about myself, you are completely out of line. Like I said to Nikki, there is measurable difference over time (I've read the stickies). I stayed away for a long time until things started to change. I apologize if you are insulted by my post and use of your time.
 
Hi Wendy

Thanks to the response. In all my visits to my PCP, I don't think he really took stock of muscle size. His exam was more strength based. I'm pretty certain if today he were to feel my left thigh vs right thigh, he would notice a difference. I tried to follow the stickies and have monitored against a "measurable change over time". Yes it's not 3-4 inches but it's changed. Trust me, I don't want to be here either. Prayers to you and your family.
 
Hi Rounder
It does sound as if it would be a good idea for you to go back to your pcp and discuss with him the muscle difference you have measured. He can examine you and tell you whether or not it's significant. It would be worth the visit to set your mind at rest.

I have costumed dancers for many years this involved taking detailed measurements of their bodies. It is amazing the effect pain and tension can have, our bodies adjust to feelings of weakness and pain in ways we are not aware of. There are unnoticeable differences in the way we move and walk. This can lead to changes in muscle size definition and tone. Sometimes this can be by quite a measurable amount. I am trying to explain that smaller changes that occur without clinical weakness can be caused by other things. The only person that can truly judge if you have atrophy is your doctor.

My personal experience is that the atrophy that I have has followed clinical weakness every time, I have not lost the muscle till after I lost the movement.

I hope this helps

Wendy
 
Wendy

Thanks for your follow up message. Your statement about your experience is what baffles me. I am not a doctor but to this point, nothing has failed. Even with what I perceive as weakness and atrophy, I can still pass the simple tests that others fail. I just don't get the progressive path and now atrophy. Your comment about how the body responds, I hold onto that as well. The flight/fight mentality. It took a long time to diagnosis my Mom and from what I remember, it started with leg pain. She did have an underlying back issue but at the end of the day, it was ALS.

I really appreciate you taking the time to respond.
 
Rounder, no I'm sorry I did not mean it to sound like I implied that at all, so I apologise it came across that way.

When we talk measurable atrophy what you need to do is stop squinting, measuring and photographing and simply think concentration camps. That's what PALS atrophy looks like. Your little dents are not atrophy and as Wendy says no one is symmetrical and our muscles change all the time due to many factors.

I wish you well but you really don't have ALS.
 
Tillie

I don't want to be here, trust me. i appreciate the candor but I know even with my Mom, the atrophy you describe didn't happen overnight. I could send pictures that show more but then someone would say it's the way I took the picture. Bottom line for me is things changed over time and I'm scared. I get it, bodies change. But I check a couple boxes here and it scares me to death. I wouldn't be here if things didn't change. That's all I'm saying. What makes you so certain it's a definite "no"? That's all I'm asking.
 
You haven't said that there is any failing - what is it that you can no longer do? I'm not asking what feels harder, or makes you tremble or tired, but what can you simply no longer do?

ALS is a disease that starts in the brain and prevents the nerve sending the signal to the muscle to 'go'. You don't feel a thing. My husband would look at his hands in total disbelief as they would refuse to 'go'. They felt perfectly normal, he felt perfectly normal, but his muscles refused to go because the nerves from his brain down were killed off.

You have not described ALS at all, but of course there is something going on. I don't see anything in your post that suggests 'progressive' symptoms. When we talk progressive we mean something quite different.
 
Rounder it is my opinion that the best thing for you to do is forget about this site and go enjoy life. life is too short this I know, in the future come back to this site if you feel the need but I strongly believe that won't be necessary. Good luck and God Bless.
 
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