If you go to the ALS website there is a Functional Rating Test that you can use to score yourself on how weak you have become. Part of the problem is that weakess atrophy and twitching are hard to measure with a medical test. But if you have 100% atrophy you might get some definative results from a functonal rating test. good luck and let us know how it goes. Cindy
Everything you read on twitching, states, that, it is not worrysome, unless in the context of weakness or muscle wasting. If you have muscle wasting, you need to get to an MDA / ALS clinic. It can still be alot of other things, such as MFN, MG and about 20 other things.
I'm glad it was a mis-type! I feared you had waited far too long to get a DX. Anyway, if you type in ALS in your search engine (Google, Yahoo, any one will do) lots of official sites will come up. This is the place where I found found lots of good info. http://als.org there are others as well, some with really technical information if you are interested. Try to get your information from an organization such as this and not some individual's private website that is trying to sell a particular product. There is no cure for ALS, (right now) and beware of any site out there that trys to tell you different. regards, Cindy
The Functional Rating Scale described above does not really seem to measure weakness, does it? Most of the questions relate to other functions. Is there a scale that directly measures arm, leg, strength, etc?
I also have another question that I need help with. I am feeling very desperate about my condition. It seems that everyday a new change takes place and I am becoming weaker in various parts of my body. My right arm feels as though it isn't there, it has become difficult for me to do things with that arm and hand. Both fatigue very quickly and I am having some coordination problems in the right hand. I am a teacher and I am finding it challenging to stand in front of students for long periods of time. I don't even know if I am going to be able to make it through the end of the semester with the type of overall weakness I am experiencing. I am now having difficulty walking. All of this has happened within the last month! One month ago, I was living life and planning for the future. Now, the future looks very bleak. Since I am alone, I cannot discuss this with anyone.
Considering the specificity of the Escorial criteria, I don't see how I can have anything other than ALS, if I apply the criteria listed on that protocol. 1) Lower motor neuron signs in two or more limbs (I have experienced fasciculations in arms, legs, chest). 2) Upper motor neuron signs in at least one region (weakness in right arm, wrist, hand and also stiffness in right hand). 3) Progression of the disease defined as increasing symptomatic impairment by history (for me the progression has been fast!).
One more thing, and I hope you don't think I am strange. I believe in God and consider the following event His letting me know what the future holds. I was discussing the period of old age with my class and a student raised her hands about a relative of hers who had planned for retirement, but became unexpectedly very sick. As she was talking I thought to myself that if she says that her relative has ALS, then it is a sign for me as to what I have. Sure enough, she said Lou Gehrig's disease. I guess it doesn't become clearer than that, does it.
If any of you would like to send private messages, please do so. A couple of you have been kind enough to do this already.
Hello vmd. Hope your day went a little better than it has of late. You've got lots of reasons to feel anxious but if you go back and read some of the former posts from folks waiting DX you will see there are many diseases that mimic ALS and many are treatable. Seems like your best bet is to arrange a visit with a neurologist that either knows about the disease or can refer you to someone who has an understanding.
The second issue sounds easier to solve immediately. How would your principal handle it if you broke a leg? Do you supposee you'd be allowed to sit in class or otherwise amend your teaching style?
The most important thing that you need to do is stay calm. This is also the hardest thing, we all know it! But worry will make your symptoms worse and give you less abiity to cope. I know you have a lot on your plate right now so this advice probably sounds impossible but you've got to try or ask your Doc for something to help you over the hump! regards, Cindy
Thank you for the advice. I try to remain calm, but as you say, this is very difficult. Since my students do not know what is happening, I feel even more isolated. It's as if anything else is minor compared to a life and death issue. I also understand that I am in the shock phase of this process and that later I will be able to accept the situation as best I can. These are difficult times.
Hey vmd, I know what you mean. It is a common dilemma. folks experience it going through divorce, being newly pregnant but not ready to tell the world, recently diagnosed with any major illness, and so on. Any big thing you have hanging over your head that you are not ready to explain leaves me, at least, feeling alone and somewhat like a fraud. My daughter helped me practice light-hearted comments for awkward moments. Now, for example, if I try to lift some little thing and find myself suddenly weak I make a face and say, "Who put weights in this thing?"
Yesterday I almost tripped on a clear floor and after I caught myself I said, "Hey! How come I can never do that kind of a save on the ball field?" :-D Cindy
Thank you. This message board is the only place I can discuss my feelings. I also have my faith, which is of supreme importance to me. You guys will have to guide me in terms of how a person with ALS, who is also alone, manages. By the way, I have started to notice the "denting" effect that has been mentioned before. I noticed this on my pectoral muscles. Before, I could not differentiate the sub-muscles. Now, I can see them and feel the ondulations as I run my hand across the muscles. Every few days now, some new limitation pops up. It is usually subtle or inconsequential, such as not being able to simultaneously tear as many envelopes as I could in the past.
Like Cindy, I feel stigmatized. I feel different from other people, even though no one knows what I am struggling with.
Another issue that I have yet to resolve is how to tell my 11 year-old daughter. As I wrote before in my introduction, her mother, my ex-wife, is being treated for breast cancer with a poor prognosis. My daughter may lose both her parents in the next couple of years. The news is really great for us, eh?
Thank you Al. By the way, do you happen to know what options for health insurance my daughter will have after she is no longer covered by my insurance? I called the local Medicaid office and there is a yearly limit that she and her mom may exceed. I don't know where else to turn. I fear she will be left without medical insurance. Since my ex is sick, she has been depending on me for financial support and so I can't guarantee that her mom will be able to go back to work and possibly cover her with her insurance.
Hey there! Are you in the states? Most states have medical coverage for uninsured kids. I bet the answer is right at your fingertips. Ask the guidance office at your school. They might know, and you can say it is for a kid who you know in another town or something, rather than scare them with scenarios that may never come to pass.
(BTW) I am one who needs to plan for every contingency so I won't tell you not to worry until you know for sure you need this information. Others will tell you not to waste precious energy until you know for sure what your DX is. You'll have to decide what is the best course for you! regards, Cindy
Thanks. I called the Medicaid office here in Idaho. The problem is that there is a monthly limit. My daughter lives with my ex, and once they start receiving my combined incomes from Social Security and my work, they will certainly be over the limit. The problem is that they will need all the monies they receive from me just to survive, never mind the cost of buying a medical insurance policy with their high premiums.
I believe in miracles and there is always hope, but I feel like the woman whose story appears in one of the national ALS sites who diagnosed herself. In some sense, the diagnosis becomes apparent with time. Also, the Escorial criteria is fairly specific. I fit that criteria to a tee, unfortunately.