Is this ALS?

[charlottecorday]

I really need an opinion.
Someone told me this A.M. that I could not have any terminal(what? I thought we were all terminal),progressive disease because:

I could not walk on my toes without my left heel dropping constantly in December. I realized my left calf had atrophied, and I had no left ankle reflex. (which I know in ALS the reflexes get hyper, normally). I started doing 100 heel raises daily for three months,and now am able to walk 70 steps without my left heel dropping. I believe I have accomplished this by compensation of some sort, such as putting more weight on my right side. He looks at this as progression, and says in degenerative diseases(such as ALS)).. there is absolutely no progression, it is all downhill.
How can I tell if this is compensation or progression.

My quads are now getting stiff.

I still am unable to lift my left heel while my right leg is lifted(no hands). It is almost as if my left heel is partially paralyzed.Please give me some insight.

 

[seanoc1]

No one here can diagnose you. You need to see a Doctor. From personal experience, this is a process and it is frustrating. I am waiting to get a second opinion on my own symptoms. I am in month 4 of this process. Symptoms that can be attributed to ALS can be attributed to other diseases and or causes.

Please go see a Doctor. Doctor Google is not very accurate.

Peace

Sean

 

[Twinsmom]

My understanding from all the research and doctors appts we've been to this past year, is that with ALS, you don't "improve" with exercise, therapy etc...and, once a function has been lost, you can't regain it. I'm having a hard time visualizing the "lifting the left heel while your right leg is lifted?...

 

[charlottecorday]

I am having my third EMG in 6 months in two weeks....seen 10 docs.......The original diagnosed was herniated disc.....wrong.I have had two differing diagnosed and two very differing EMGs. I am really getting frustrated with Obamacare,no offense to those who like it.This has been the longest 6 months of my life.

 

[ktmj]

Your not sick of Obamacare yet - wait until your taxes go up and quality of care overall goes down.

Two things - you would not have improved with ALS. It COULD be something neuromuscular but there are other things it could be.

Second - the diagnostic journey for these things are sometimes a long process.

Well, three things. The last is that no one here can diagnose you, and not being a smartazz but if you are frustrated with the diagnostic journey get in line with a lot of us. We're good company, and you will adjust to not knowing. There are many people on this forum that wish they could trade their diagnosis for yours too.

Really wish you the best and hope you find answers. And the absolute best answer would be no answer.

 

[johnnyliverpool]

hi..i was frustrated at not having a diagnosed, after 6 yrs. after being around these boards the past month i no longer am. i do have the upper motor neuron syndrome...and the spasticity is a pig.....but i do find the clonus hilarious...chucking my beer over my mate was the high point..i can get my arms and legs jerking in tandem, with my head nodding along too ......so funny..yep, i think now i realise am still one of the lucky one...cheers john...

 

[charlottecorday]

OK, I just got back to this thread,remember only been here a month.Still trying to get around.I am sorry I miscommunicated to everyone. The neurologist saw my ability to walk on my toes as improvement, I see it as compensation. You are absolutely right,Melody,with ALS there is no improvement. I seem to be compensating with my right side, I was told today by a yoga instructer(40 years), that she has never seen such profound weakness in anyone's left side(and atrophy, not bad but according to last EMG, lowerleg, still denervating) with the exception of one woman who had post polio syndrome.I am totally relying on the right side of my body.I just cannot figure out why three neurologists would miss this, and only EMG one limb.KTMJ, I have no insurance because of preexisting conditions(cancer 18 years ago for one)and if I looked at life like you do,I ,personally, would be not only sick, but personally poor too.God bless all the indigents.I agree with you on Obamacare. I am not in any category to be able to be treated by a public general hospital and never will be, too young to receive medicare,too much money to receive Medicaid, Risk pool still able to turn people down and doesn't cover preexisting for a year(docs have told me they do not pay anyway.)Obamacare is making it so the docs are overcharging the uninsured because they have no protection(limits) like you get when insured.I understand quality of care issues. That is already being compromised by the simple fact Medicare is not paying as much to the docs as they did.The docs are being fined for treating the uninsured, the uninsured are being fined for not having insurance, in a time when you are still turned down for preexisting conditions and definitely no coverage for a year. That particular part of Obamacare does not go into effect until 2014. I do not believe no answer is the best answer I want to face whatever it is that is my problem, deal with it directly,if it happens to have a treatment,get on with it. If however God has chosen it's time for me to face the final curtain, well, let's just say I've had regrets.......but too few to mention.I am not asking this forum for a diagnosis,but I know that here, I am in the company of others that have wisdom,insight, experience. patience,and understanding.The information I have received here is invaluable, as are the friends that I have made. I already miss some of them, for I feel I might grieve them one day.Any and all insights are welcome.

 

[hopingforcure]

Anything Obama does is not good for me.. His prexsisting condition clause was one both sides agreed on, and will not take affect for at least 3 years I believe. I am so tired of rewarding those who do not try.. Okay off my soap box.. Just fed up with the morals or lack of in so many cases. I am sorry just had a tough day..

 

[trfogey]

I could not walk on my toes without my left heel dropping constantly in December. I realized my left calf had atrophied, and I had no left ankle reflex. (which I know in ALS the reflexes get hyper, normally).

Not necessarily true. Brisk reflexes are a symptom of possible upper motor neuron involvement. Diminished reflexes are a symptom of possible lower motor neuron involvement.

I started doing 100 heel raises daily for three months,and now am able to walk 70 steps without my left heel dropping. I believe I have accomplished this by compensation of some sort, such as putting more weight on my right side. He looks at this as progression, and says in degenerative diseases(such as ALS)).. there is absolutely no progression, it is all downhill.
How can I tell if this is compensation or progression.

One problem I see here is your usage of terms. When you say "progression" here, I assume you mean "improvement"; otherwise, the rest of your statement doesn't make sense. If my assumption about what you meant is true, then the statement that "he" made is correct. Once control/function of a muscle is lost due to motor neuron death, it never comes back. Compensation is possible using other nearby muscles in some cases, but there have to be nearby muscles to take on the load. That is a major reason that most of the earliest visible manifestations of ALS take place in the far end of the limbs -- fingers and hands, feet and ankles, etc. -- because there are fewer muscles to compensate for lost muscles in those body parts.

I still am unable to lift my left heel while my right leg is lifted(no hands). It is almost as if my left heel is partially paralyzed.Please give me some insight.

Once again, your choice of description is imprecise enough to cause some confusion as to what the problem is. If you mean that you can't raise yourself up on tiptoe while standing on one foot, that may be a symptom of muscle weakness, but it isn't necessarily a sign of a neurological problem. If the muscles in your lower leg were affected by ALS, you wouldn't be able to point your toes on that side at in any position, whether the leg was bearing weight or not. If you can push your foot up on tiptoe while seated, then the muscles are still working -- they may be weak, but they still work.

I seem to be compensating with my right side, I was told today by a yoga instructer(40 years), that she has never seen such profound weakness in anyone's left side(and atrophy, not bad but according to last EMG, lowerleg, still denervating) with the exception of one woman who had post polio syndrome.I am totally relying on the right side of my body.I just cannot figure out why three neurologists would miss this, and only EMG one limb.

Given the choice of evaluation by three neurologists (and seven other doctors) or one yoga instructor, I know who I'd be more prone to believe, but to each his own. As to why the neuros would only EMG one limb, I would imagine that they got what information they needed from the single limb that they did the EMG on. Given today's litigious climate, they would be utterly insane to ignore any signs that could be clarified by doing EMGs in other limbs.

Just curious -- have you been evaluated for possible cardiovascular causes of your problems? Weakness in the entire left side sounds more like a stroke or a brain injury than it does ALS.

 

[charlottecorday]

I am shocked.this is the first decent post I have ever read of yours, and if you look at where I slammed you today because of your abusive comments to a vulnerable individual, I still hope you read and believe I am trying to help you. I have already corrected my progression,improvement error online, I caught it already. Thanks. I really hope you can be more objective about your future posts.....preview them and make a conscious decision,to put yourself in their positions. I just get so upset when I read your posts.
I was ruled out for stroke a long time ago. My brain looks perfect,no atrophy( In the brain). Of course, a stroke can never be completely ruled out. But with two dirty EMGS I have more going on than that.

 

[trfogey]

I am shocked.this is the first decent post I have ever read of yours, and if you look at where I slammed you today because of your abusive comments to a vulnerable individual, I still hope you read and believe I am trying to help you. I have already corrected my progression,improvement error online, I caught it already. Thanks. I really hope you can be more objective about your future posts.....preview them and make a conscious decision,to put yourself in their positions. I just get so upset when I read your posts.

Yes, I saw your, um, vigorous response to me on the other thread before Joel deleted it. It's a shame he deleted it because I would have preferred to respond to it rather than see your self-expression limited in that manner. But, I'm not the one who decides those things, so I have to live with their decisions just like everyone else here.

As to my objectivity when I post, I approached my response to you in this thread no differently than I do any other thread in this forum. I call it like I see it and let the chips fall where they fall. I'll stand behind every post I've ever made here because they were what I believed to be the right thing to say at the time.

I don't expect everyone to agree with me and I hold no grudges against anyone who does disagree. It's a public message board and, as long as the moderators find it acceptable, anyone has the right to say whatever they want on whatever topics come up. If I disagree with something said here, it's my responsibility to provide an alternative point of view and a proper defense for that alternative, and not attempt to stifle or dictate what other people think.

I was ruled out for stroke a long time ago. My brain looks perfect,no atrophy( In the brain). Of course, a stroke can never be completely ruled out. But with two dirty EMGS I have more going on than that.

That's good to hear -- no stroke, that is, not the dirty EMGs. Earlier in this thread was the first time I recall you talking about weakness in your entire left side, and that immediately tripped "stroke" in my mind (lots of cardiovascular disease in my extended family). As is my usual practice here, if I have a question about something, I ask it rather than assume the answer.

That having been said, I can understand your frustration at how long it is taking you to get a diagnosis. Neuromuscular disorder diagnosis seems to be nearly as much art form as science sometimes, and where you are and who you see appears to play too large a role in how quickly firm diagnoses are made.

One other thing you might want to consider -- if you are uninsured, your doctors might be hesitant to order additional tests (a multiple limb EMG, for example) out of a concern for your finances, and because your physical condition is not giving them a compelling reason to do extra tests. Their reasoning might be to wait until they see more physical progression before going further with the expensive tests. It would be unfortunate if that is what they are doing, and you might want to find a way to discuss it with them so that you have a clear understanding with them about how your finances are factored into their decisions.

Good luck. And I truly hope that you do not have ALS/MND.

 

[charlottecorday]

Thank you, trfogey......but joelc did the absolute right thing by deleting that message. I feel he has been a guardian angel to me on this forum, understanding when he needs to shut me up. It limited my self expression in no way, because I wrote what I needed to say and it was very cathartic. I was regreting it and went back and Joelc ,as he always does rectified what could have been an abominable situation. I only hope now that he spends more blessed time with us, he will keep other people from being humiliated. It would even be a good idea for him to moderate your replies, sometimes. He is a very wise man and as I understand him, always looks at both sides. I get angry at him sometimes, I'm sure he knows that. In the end, I see his viewpoint. He is an excellent damage controller, with traits of objectivity and foresight, and will try and bring some(of which we all know is not a characteristic of life) fairness to this forum.
I am glad you saw it though, and understand, that I believe the most valuable human attribute to be KINDNESS. I told Rose the other day how much I admired her posting because of it. She inspires me, and maybe one day I can be more like her. Right now, I get recklessly defensive of myself, but more often than not, which is a characteristic I am proud(not ever good) of,defensive for others that are not protected and could be offended. This is not football we are playing,but life, where"the best defense is a good offense", should not idealistically be applied. I understand that, but at the same time, can offend one by defending another,or others. My greatest(8 generations ago)aunt was guillotined in the French Revolution for personality and character traits I believe are genetically passed down.She killed one man to save hundeds of lives.She was very politically involved, as I am, in my party.I would never break any laws, especially not any of God's laws.
My financial situation is fine, one of the hospitals I have gone to is named after my aunt and uncle, and my (deceased) mother contributed a lot to it's construction. I own mineral rights in North Dakota, production estimate 20 years. Money is not a concern to me. We all know how catastrophic illness is.The fact that the docs charge all the uninsured more to me is disturbing. They really have no other options with Obamacare.I also find it highly unsatisfying to spend my money on medical tests that draw no conclusions, nor withdraw conclusions. I would rather spend money in an effective manner, than be a blank check for something that is not even the least bit fun, counterproductive, repetitive. Flatly said, I want to see the light at the end of the tunnel, or at least the tunnel's end.
And thank you most Trfogey( quote )for what I hope to be precise,"if the muscles in your lower leg were affected by ALS, you wouldn't be able to point your toes on that side in any position, whether the leg was bearing weight or not". That statement, if precise, definitely rules out ALS.
By the way, J.Liverpool, glad you are here and happy, wish you had found us sooner. It is a learning experience everyday. I asked a 91 year old patient one day what her secret was. She said,"learn something new everyday".Being here will prolong your life because you learn so many things. Welcome.
Almost forgot Trfogey, I wish you comfort always.

 

[charlottecorday]

I will call my neurologist this next week, to be sure the pointed toe theory is a clinical, and diagnostic fact. If any of the the three neurologists had told me this in the beginning, it would have saved me a lot of confusion and worry. I will report back my findings.I'm sure that would be the case when denervation is complete, but somehow
am reticent to accept that as conclusive unless one is in later stages.Thanks again, Trfogey

 

[charlottecorday]

I called last my neurologist around 6pm last evening. I was too excited about the possibilities that Trfogey posed regarding his quote about the toes being unable to point any direction if your lower leg were affected by ALS. He said that statement was so inaccurate regarding AlS and immedeiately asked me what doc was feeding me this misinformation,. When I told him where I got it, he replied that Trfogey was attempting to practice medicine by the act of communicating false information to the public and could therefore be in a lot of legal trouble for damages caused by giving people a false sense of security. He said he wished that could be true, but Forums were Forums and they would let certain people say things they are not in the least bit qualified to say.
Trfogey you were dead wrong. Please, in the future, since you are not an M.D., limit your medical expoundings and factual information to(quotes) medical textbooks,journals and articles. It cost people a lot of money, and emotional turmoil to be put on rollercoasters consistently,especially when they are usually over 40.

 

[trfogey]

I'm very happy that you could get such a definitive answer to your question so quickly, charlottecorday.

I'm not an MD and never claimed to be one. I'm only passing along information from my own experience with this disease , information that has been given to me by my own fully licensed caregivers, and reliable information found on the Internet. If I'm wrong, it is certainly my fault for poorly communicating the information, rather than error by the source from which I got it.


All the best to you.