Could I possibly have something other then ALS?

[lhagsjr]

Im twitching unrelentlessly and I 100% have muscle atrophy. I understand twitches themselves could have 1000's of causes, but what about twitches in accordance with Atrophy?

[CindyM]

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

[lhagsjr]

Thanks for your response. I miswrote what I was meant. I without a doubt have atrophy in some of my muscles. I havent lost 100% of my muscles. What is the website you mention?

[Jamiet]

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.

Good luck

[CindyM]

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 (http://alsa.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

[vmd]

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.

[CindyM]

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

[vmd]

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.

[Al]

We'll try to help you through this vmd.
AL.

[CindyM]

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

[vmd]

Al and 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?

[Al]

Hi vmd. I know this is really crappy but we'll try to help if we can. Here are some sites dealing with children and ALS. Give them a read and it may help with what I know will be a difficult task.
AL.
http://www.alsindependence.com/Telling_Children_About_ALS_MND.htm

[vmd]

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.

[CindyM]

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

[vmd]

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.

[Al]

Hi vmd. Cindy is the one in the US and may have more information for you. I am up here in Canada and while I have some knowledge of US status I usually depend on members from down there for help. Fortunately we have some people here that have" been there done that" as they say.
AL.

[vmd]

Al:

Yes, thanks. I will probably aso have to talk with a lawyer regarding the best way to handle money transfers to my daughter in case the worst happens. Lawyers are so expensive!

[CindyM]

I'm a big believer in social workers at the clinics and hospital, if you ever end up in one. They are a wealth of information and very resourceful.

[vmd]

Yes, I plan to do this as well.

[ltr]

VMD - What have the doctors told you? I haven't been on the forum lately, due to final exams, but I can't see that a doctor has found the problems you are talking about. Do you think, since you say this is happening very fast, that you may be acutely ill with something. You may be suffering from something viral or autoimmune. Fasics alone do not make a positive diagnosis for lower motor neuron problems like you said above in the criteria. I know how you feel, thinking that you are going to succumb to illness before you even get diagnosed because I have been there too. But, you really shouldn't convince yourself you have a terminal illness such as als without an als clinic supporting that. Please try to pinpoint something else that could be making you ill. I know that it is difficult to try and do this, but once you start looking you will see that your symptoms fit other illnesses as well. Good luck.

[vmd]

ltr:

Thanks.

I'm trying to stay positive , but each day I encounter another reminder that my symptoms fit the criteria for ALS. I know some of the physical changes I am experiencing can be due to anxiety, but other changes, such as objective weakness, fasciculations all over, measured atrophy, "denting" of the muscle, muscle fatigue, stiffnes, etc., all point to ALS. In addition, when I read about the characteristics of each of these symptoms with respect to a differential diagnosis, the ALS diagnosis is the most likely. The loss of strength and muscle fatigue is particularly troubling because it is now affecting some daily activities. Pulling or pushing any objects is becoming difficult. My right arm feels "dead." It is always tired now and it takes effort to use it. It's almost as if it doesn't belong to me. I am having problems walking up and down stairs as well. My left arm is now fatiguing after some minor activity...and on and on. I certainly feel very ill, but I can't point to anything other than a neuromuscular problem.

In two weeks I see a neurologist. Unfortunately he is not an ALS expert. The referring physician suggested it could be ALS based on a preliminary examination he conducted on my reflexes and strength. The fasciculations have become more common in the last two weeks and during that time I have noticed the atrophy and "denting" changes.

Nevertheless, tonight I am planning to watch a movie with a friend and hope that the symptoms do not intrude.

[BLAIRHANNER]

Hi,

I am not sure where to start? But I guess at the beginning is a good place. First off, My name is Blair Hanner and I now reside in Atlanta,Georgia for the past 6 months. Before that I lived in Sarasota, Florida. for 15 years. I am now a 36 year old male and my symptoms presented about 3 years ago I have taken Lopressor & Xanax for my High blood Pressure for the past 15 Years, I am NO LONGER ON ANY MEDICATION. My symptoms began with Muscle Twitching / Fasciculations in my Calf's, Muscle Soreness in my thighs- like a HOT Knife, Joint Pain with lower back pain, Exercise Intolerance & Fatigue, Problems Swallowing- Are really just a funny feeling in my throat " Like I need to clear my throat",

My Blood Pressure has always been high 155/90 and I have been on medication for it since I was 21, " Lopressor" and Xanax. When the above mentioned symptoms began my BP dropped into normal range and has stayed there @110/ 60 not sure why? I am no longer on medication. I had and still have an elevated CPK- 422 - and it has ranged from as low as 189 to 489. I also get Shortness of Breath- and feel the need sometimes to take deep breaths. Oh and when I take ANY medication I get a sinus headache, with Joint Pain and Shortness of breath, and the Twitching becomes very BAD!

I have had a FULL WORK UP including a Muscle Biopsy - ( It was Neg. for everything!) It was sent to Dr. Lee at Virginia University, My Aldolase was 5.0 and Normal, I also have had two (2) Needle EMG- (By the way they REALLY HURT!) The first one was at 4 mos. and the second one was at 14 mos. they were both Neg, EEG was neg, ECHO was Clear, ALL MRI's were Clear & Neg., EKG was also Neg., All other blood work has been Neg., My MYOGLOBIN was a little high at (55).

I have been to MANY, MANY DOCTOR'S, Neurologist, and Rheumatologists they have ruled out A.L.S. But one of my Doctors, told me that is almost sounds like I am being poisoned ??? The only thing I can think about is that I have had Silicone Injections many years ago in my face.

Thank you so much for you time and I will look forward to hearing from you soon. Please let me know what you think ????? I am REALLY WORRIED !!!!!

Warmest Regards,

Blair Hanner

[vmd]

Blair:

I would agree with your doctors insofar as it does not sound like ALS. Usually symptoms, such as fasciculations are considered normal in the absence of weakness.