Possible ALS

[Innersound]

Felt fine in June of 2006. Then I felt a general weakness the next month. I'm a bicycle rider, that takes rides over 120 miles. My legs (the left being weaker that my right) became stiff, and progressively weaker. I could not ride my bike anymore. About three months later, I started to have fasciculations in my back and legs. Lost over 30 pounds in the last year, and food does not taste as good as it did before this started. I tried to regain my strength by riding a stationary bike, push ups, and lifting weights. But it did not make me stronger, just weaker. Now walking is very difficult, and I have fell two times. I notice that it is harder to breath, and I have a nasal voice. I sometimes choke on food, and pills. Now my arms are getting weaker, as well as my hands. I have trouble with back pain, because my back is so weak. Having trouble sleeping, even with sleeping pills. I'm losing about 300 hairs a day, and can't drive my car anymore. Was tested for MG, Stiffman syndrome, and all the standard blood tests. My doctor is going to test me for Wilson's disease, and give me a NVC/EMG test. I've gone downhill the last three months, and I never have a day where I feel stronger, all ways weaker. I'm real afraid I have ALS.  

[Cleveland Clinic, MD]

I am happy to address the questions that you pose, although it is important that you recognize that my impression is based entirely on the information you have provided in your posting and is by no means a replacement for an office visit with a neurologist.  Diagnosis is contingent on detailed history and physical exam and as such, the following information should be considered solely for educational purposes.

Your symptoms include the followinh:
. Progressive muscle weakness (both upper and lower extremities) that resulted in difficulty performing simple tasks like walking, using hands, and that resulted in falls
. Muscle fasciculations
. Difficulty swallowing, breathing
. Change in voice and taste
. Significant weight loss

These symptoms represent involvement of peripheral muscles as well as bulbar muscles and possibly respiratory muscles. Based only on your symptoms, you have features of lower motor neuron (LMN) involvement that means process involving peripheral nervous system. But you might also have features of upper motor neuron disease (UMN), on your examination (like increase muscle tone and brisk muscle reflexes). the only way to identify that is through thorough neurological examination.

Your symptoms are concerning for motor neuron disease, a spectrum of conditions that include ALS, and other less common diseases. At the same time you had lost 30 pounds, sometimes weight loss is a result of muscle atrophy, but it might caused by another underlying condition (like paraneoplastic syndrome in which there is an underlying malignancy causing the weight loss and neurological symptoms).

I strongly suggest seeing a neuromuscular specialist who can do a targeted evaluation to identify the underlying condition. workup will likely inculde some blood tests, and most importantly an electrodiagnostic testing (EMG) done with a special protocol to look for evidence of motor neuron disease.

Thanks for using the forum. Good luck

[johnflox]

When a young person, athletic and fit, without any health problem starts a neurological decline or a neurological crisis, first of all, he should check what drugs he has taken before the onset of the symptoms. Some very common antibiotics, like cipro and levaquin, and floxin, do cause all the symptoms that you list, and many more, for many months and years after discontinuation of the therapy. It is also very common that the symptoms start some weeks or months AFTER being treated with those antibiotics.It is a delayed onset neuropathy, very typical of many intoxications. Other medicines have similar side effects too (antimalarials, and statins, for instance), so it is worthwhile to check what drugs (and leisure or job-related toxics) you have been exposed to. Another paradoxical fact is that symptoms typically do worsen for months after discontinuation of the drug, before an improvement is felt.

Many people that get very concerned with ALS are in fact suffering from delayed onset of neurological intoxications caused by drugs. Cipro and levaquin for instance cause in a vast number of people, fasculations, muscle weakness, atrophy, neurological pains, etc. Two years ago, all the package inserts of this class of antibiotics have a warning of IRREVERSIBLE NEUROLOGICAL CONDITIONS caused by them. They are not rare at all, and they tend to be irreversible and permanent in some cases, but the majority of persons heal slowly over the years, provided that they do get re-exposed.
Once the drug factor is discarded, the search can be centered in more common ethiologies (causes).

[Fionajnz]

My other thought is for you to have your adrenal function checked out thoroughly - google it, you will find it can really affect your body function, also make sure they have checked your thyroid and your ferritin levels, not just a std anemia check.

Sounds like it would be worth seeing a neurologist to clarify if they see any muscle wasting or sensory deficits and have an EMG test, presumably they have done a brain scan etc?

Did anyone look for a myositis?  Thats an inflammation of the muscles, there are some muscle enzyme markers that are commonly elevated when you become acutely unwell - one of mine was 7 times normal as I recall and an internist diagnosed me with inclusion body myositis, however it is really hard to be sure, my adrenals were knocked out by the steroids (also a treatment for myositis) I was given to treat serious shortness of breath and I had a concurrent cardiomyopathy and National Jewish diagnosed me in retrospect with a pulmonary embolism (I was 6 wks post partum when I got sick), so I am not totally convinced of the IBM diagnosis.  I am still having days when its hard to lift my arms above my head to wash my hair, but they do correlate with low levels of cortisol.  I am still taking steroids.

My hospitalist was convinced I had myasthenia gravis and I was as sure I did not have MG or MS (her other bet).  The neurologist is still puzzled, 18mths on.  They did find a brain tumor which they believe to be benign in my pineal gland.  I also had trouble with fatigue of my muscles while I was eating/chewing food for a few mths.

I hope you get some answers soon.  Don't hold your breath for a reply here from the neuro, s/he is not responding to Q's right now due to lack of time.  At least that is what the forum administrators told me when I emailed them last wk to ask what was happening with the board.

Fiona  

[mike1105]

In my humble opinion, you hould head straight to the Rochester Minnesota Mayo Clinic, or the Cleveland Clinic in Cleveland Ohio. All testing done under one roof--- some of the best MDs in the world. If it is possible to find out what is wrong, they will.

[sageje05]

I'm a 32 year old female in fairly good condition.  Back in Decemeber I started to have weird pain at the tip of my fingers and toes on both sides.  The pain would come and go for about 2 weeks and disappered suddenly.  It then returned at the end of March, but this time I had horrible shooting pain in my forearms and pain in my buttocks and calf area.  That lasted for 2 weeks or so and subsided once again.  It is now June and the pain is back and worse than ever!  In addition to the pain in my fingertips, toes, and buttocks.... I now have some muscle weakness in my legs and terrible muscle cramps  at night on various parts of my body.  It feels like muscle cramps or spasms!  Sometimes the pain brings me to tears.  If it were ALS would the pain come and go?   I am really worried that it could be ALS.... I know I shouldn't jump the gun, but I can't get it out of my mind...especially with the horrible pain.  I am scheduled to have a MRI of the brain and spine sometime next week.  Doctor wants to check for degenerative nerve damage.... or something like that.  I wish this would all just go away. Do my symptom sound like early ALS?  Would it progress this quickly?  6 months ago the pain came and went.  Sometimes it would not return for 2 months or so.  Any info or advice would be greatly appreciated!  

[NanaS]

I don't know if this will help. I hope so. My mother succombed to ALS in July, 2005. the first poster's description above, the bike rider, sounds VERY much like what my mother experienced. If I were you, I would contact your closest ALSA, university hospital, and/or ALS clinic, ASAP.

To, maybe, encourage, the other person who is concerned about ALS, I do know that it's not supposed to hurt.

[seekmedhelp]

You recommend the Mayo Clinic as if it were a visit to a local mall.

A workup there costs upward of $50,000 which sadly less than 5% of Americans can afford without bankrupting themselves.

The clinic doesn't even allow you to walk in their door without first dropping down $5000 as a deposit. After each medical test and or doctor evaluation they deduct from your deposit, which after a couple neuros, and MRIs later will be depleted. If you can't keep adding funds to your account, into the tens of thousands, security will promptly throw you out.

I know you are just giving advice but at least be realistic.

[Jenny51]

To the person concerned about ALS having the painful spasms- I have ALS and have never had a bit of pain from the onset.  What I am told is that with ALS it is not uncommon to have no pain at all.  I have muscles spasms, but it is more like a charlie horse, not really painful. I believe that progressive muscle weakness is more the common sign of ALS.

[4t1074]

Get to an ALS clinic, look on the MDA website, they are listed there.


As stated, ALS generally has no pain, but there are so many exceptions and so many different onsets, that you would not believe the stories on ALS from A to Z.

You have weakness....that's the hallmark sign of ALS.

Sometimes, i think ALS is so different on the radar, that it's really about 10 different diseases, that cause the nerve death as an end result.