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pvg0195

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Apr 19, 2011
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Learn about ALS
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US
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az
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tucson
Hey everyone. I've been having symptoms for about 8 months that seem to have progressed and fall in the realm of the symptoms of ALS (or so I believe). First of all, I think it would be important to disclose my change in lifestyle during the time these symptoms began to show up.

I was a fairly athletic guy who was training for the Air Force. I was working out almost every day and eating as balanced as I could (or so I thought). So for the most part, I was fairly strong, lean, and active. I gained athletic performance and strength farily quickly between Dec 2009 through July 2010.

After a groin injury that kept me from being able to work [diagnosed with epididymitis], I then became unemployed in early July 2010. During this time, I was in a lot of pain, couldn't get out of bed much, and so I didn't make a lot of effort to leave the bed or couch, even for food. To summarize my new eating habits, also enforced by my extreme lack of money, I was barely lucky to eat a meal a day. I didn't have much support as far as family or from roommates when it came to this issue, and so I would eat whatever I could find around the house (which wasn't much). These eating problems continue, on and off to this day.

In just about 6 days of barely eating, I began to experience extreme fatigue after bigger meals and I still tend to have this problem today. Now, this is where everything else started to come in. I figured it was the lack of food.

I don't remember if it was a 7 days, few weeks, or a month after July, but I began to feel very weak and wobbly in the legs. Over a few months, this began to spread upward to my chest area. Possibly a few months after that, I woke up to extreme pin and needle sensations in my left arm, arm pit, feet, and a little in my right arm and leg. This was followed by numbness.

As of now, I'm very weak, especially in the legs but I noticed that the weakness is amplifying everywhere including the : fingers, hands, arms, lets, feet, toungue, abdomen, shoulders, back, etc (everywhere). I have trouble keeping hydrated as my eyes and mouth are always dry, even though I'm drinking lots of fluids. Anyway, here's the list of symptoms overall, and thanks for taking the time to read this.

- Very weak, shaky, and twitching muscles (spasms and twitching in limbs and between the thumbs and palm) . I don't think a single muscle in my body is currently exempt from this problem (that I can think of)

- I have trouble lifting objects that aren't even heavy, and sometimes my arms just feel very weak and tired physically. This also goes for everywhere else on my body

-Sometimes I feel as though I have to work harder at holding a glass of water than I did before. Although I don't know if I'm just thinking about it too much.

- I noticed that my biggest problem with my legs is when I try to walk up and down stairs. The wobblyness seems to not be as bad but I feel a lot heavier, and weaker and I really have to make sure I don't collapse and fall. Some days I tend to feel 'better' than others.

Anyway, regardless of my condition, I'm glad that communities like this exist for those who are in need. Thank you for taking the time to go over this with me. These symptoms have been consistant for some time now and I have not been able to improve much. I even try to eat better, although I admit I'm not consistant with my habits yet (limited to income as unemployed), I still have not felt any improvements. I have also gained weight. My body has become very squishy and fat feeling, even on all the areas that used to be solid and muscle.
 
Just wanted to add that I'm not insisting that my eating habits are a cause of my symptoms, but I thought it would be usefull information.
 
If you're not leaving the house and not eating--you're malnourished. You're also likely very low on things like Vitamin D, etc. Starving yourself isn't a sign of ALS, hon.

If you can't work due to illness--get food assistance. There is no reason to be starving yourself in the US today. With no job, I'm guessing no insurance. Every state has some form of free medical checks. Find a free clinic and get some bloodwork done. Honestly it sounds like you're also dealing with some major depression. You need help--but I seriously doubt they'd even test for ALS based on your medical history of starving yourself and laying in bed all day for nearly a year.

I hope you can get some help
 
As someone who is diving into malnutrition (due to a 50% paralyzed stomach), you sound like a classic malnutrition case. The word calorie is a shortened form of the term "kilocalorie", it literally measures energy in chemical reactions. If you deprive your body of calories, you have to feel fatigued, won't be able to do anything for long, because you haven't given it any fuel. Your muscles are gone because one of the most common starvation responses is to turn their protein into energy.

If you aren't supplementing, you're probably also perilously low on a number of vitamins. That will cause neurological symptoms all on it's own - you're denying your neurological system it's basic building blocks.
 
As said above, seems like malnutrition at its best. Now malnuitrition just isn't about getting enough food, but it is also about getting the right amount of correct foods and vitamins in your diet. Get a blood test for your vitamin levels (B in pariticualr, and also your potassium). Low of either of these and you have the exact same symptoms you mentioned above. Hopefully you just have a simple vitamin deficiency. Best of luck to you and try to get ALS out of your head!
 
Have you gone to the doctor? Or is that not possible being unemployed?
 
What do people in the States do when you have no insurance for things like this?
 
Normally people starving go to a food bank or get food stamps to eat. When they are sick and can't afford a doctor, they either find a clinic or they go to an emergency room
 
NUTRITIONAL. DEFICIENCY.
perhaps an intolerance of some sort?
 
Thanks for all the replies. I wanted to show that I have been acting out on all of this and taking all of the advice before I posted again. I finally got approved for state healthcare and had an appointment with my PCP. I'm currently awaiting my status for nutrition assistance.

During my appointment, one of the problems he noticed was my developed bowel problems. I mentioned the weakness and after some questions and an exam, he gave me an order for 'complete metabolic' blood work. I have yet to do this however, for the stomach issues, he prescribed me flagyl which has helped me with bowel movement but has caused major side effects and allergies.

I developed troubles with breathing and shrugged it off as anxiety until it got more severe after 4 days of the medication. After calling the doctors office I was instructed to go to the ER for evaluation. They released me after 4 hours of waiting on blood work and the nurses told me I was really low on potassium.

Currently, my weakness is getting intolerable in my legs and arms and I'm having coordination problems when walking. I'm thinking it could be related to my reaction to the medicine. I stopped taking the generic flagyl on the 22nd.

I don't want to sound like I'm not doing anything to progress but it seems like a fall after the other. I was mentally doing well with the whole ALS scare until my problems got really bad after my reaction to flagyl. After reading about people's reactions to flagyl, I'm wondering why he even prescribed it to me so openly.

Meanwhile, I started supplements, eating healthier when I do eat, and have become more active but it's difficult again since the terrible medicine.
 
NOTHING IS FAILING. IT'S NOT ALS.
Weakness doesn't just "get intolerable", atrophy is generally accompanied with it, and is the cause of the weakness. As for what you appear to be experiencing, you may feel weak, but that is more likely due to some metabolic imbalance.
Also, if sudden weakness were an ALS patient's early signs, the diagnosis period would take nowhere near as long.
A potassium deficiency isn't that surprising.
Have you checked your B12 levels?
 
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