als

[laney55]

my husband was recently told by a neurologist he had ALS and that he is going to die in 2-6 years.  We are currently waiting to see another doctor for a 2nd opinion.   Does anyone have any info they can share on this.  He is in shock.  I have  been reading of a number of different causes for numbess and tingling in legs and arms.   I just need to know if anyone else is going or has gone through this.  Thanks

[Momzilla]

Hey, guys~

I just heard from Laney!  I hope she'll post to all of us.  The new doc has given her husband relief from the ALS diagnosis!  She's not sure what the other doc was thinking when he told them ALS....

Thank Goodness, Laney!  Tell us!

Zilla*

[Quixotic1]

Well first, I want to welcome you also to our home.  I hope we can help support and share what info we might have about ALS.  A couple weeks ago I did some reading on ALS and learned that some of the hard and fast rules I had learned before were a little bit too rigid.  ALS can be quite difficult to nail down.

The primary thing that makes me think other things than ALS in your husband is that the primary thing you told us was that he has numbness and tingling, and electrical sensations mostly in his left leg and arm.  This just doesn't sound like any descritpion of ALS I have read.  Bio is completely right!  ALS is a disease of the motor (muscles, movement) neurons and not the sensory (sensations).  I have read that some ALS patients have some mild sensory disturbances, but this is NOT the norm!

Also it seems that you are saying that his weakness sort of "comes and goes."  ALS "comes and stays" for the most part.  Yes, the ALS sites do say that "some" people may have periods of improvement and that rare people have recovered (though that makes me think the diagnosis was wrong).  So that, if I understood you correctly, points away from ALS, I would think.

Another feature that makes me think ALS is not the answer is that your husband's problems are mostly just on one side of the body.  Again, I am of the impression that ALS affects the body pretty symmetrically from side to side.

So, you have only mentioned a few things about what your husband is going through and ALL of them seem to be different than the way I understand ALS to progress.

ALS can present in different ways.  It can present in the limbs with the worst weakness appearing in the hands and feet.  It may show up just in one hand or foot initially, but fairly "quickly" (months to years) generally it will involve all four exemities.  The weakness starts usually farthest away from the trunk and progresses to involve the muscles higher up and closer to the trunk. It can also present with difficulty in the eating/swallowing functions.  

So, even though no one online cause make any kind of diagnosis, we can certainly see that you have told us a number of things that would make ALS very unusual, or even unlikely.  I am soooo glad you are already set up for a second opinion.  I think the way the neurologist treated you is inhuman!  I would recommend a complaint to the Board of Medical Examiners in your state, especially if ALS is not the answer.

Also, there are Rate Your MD  (ratemds dit com) sites where you can tell your story and make others aware of what a jack*ss this guy is  (and you can use his name and address!  My heart breaks for both of you to have been given this information (correct or not) in this way.

I hope you stay with us through this.

Quix

[Momzilla]

Hi, Laney!

How's it going?  Any news?  How is your husband doing?  You hanging in there?

Peace,

Zilla*

[Momzilla]

Hi, and welcome to our forum~

I am so very sorry for the torturous place you and your husband have found yourselves in right now.  Not only are you in the limbo of diagnosis (in your opinion), but have the terrible disease ALS hanging over your heads.  I'm sorry.

I have had very strange symptoms and very normal test results for a very long time, so Quix (our resident unofficial physician here) has helped me research all sorts of neuro-muscular diseases.

I have to say, I am with Bio, in that  ALS appears to me to be a purely MOTOR disease without sensory symptoms like numbness or tingling.  We had a dear friend with ALS and I do know a tiny bit about it from their experience, too.  From what little I know, it tends NOT to start in the lower extremities.  The first signs would be weakness in the neck or upper limbs, although I am sure there are exceptions.

What would be of concern to me is your husband's EMG.  It must have been abnormal.  What did the doc say about it?  Was a Nerve Conduction Velocity done, as well?  What did that show?  If not, WHY not?

When you see this next doctor, please be sure to let her know what your grave worries are, so that if it is possible, she can reassure you.  Did you bring the first EMG results to her?  Have the first doc fax over the results of the first one for her, so she has one study to compare the next one to.  This may be very helpful.  

I wish there was more to say to allay your fears.  I think perhaps the first doc may have thought he was doing you a favor by giving you the grim news to prepare you, or to make any other news that much more joyful.  Or it could be he's just a cold-hearted jerk.  I'm sorry he did not show you the compassion you deserved.

Please keep us posted on any further news, and feel free to rant or vent whenever you need to.  We're here.

Peace,

Momzilla*  

[sllowe]

Hi Laney!

Welcome.  I'm so glad to see you've received so much information from our members also that this 2nd Dr. is treating you and your husband the way you should be treated, always.

I hope this is not the Dx for your husband.  I'd be terrified to.

Your strength and love for him shines through Laney as you reach to find out more information. All the best to you and your husband and I hope you get some positive infomation soon.

be well,
Shell

[PlateletGal]

Hi ! We just recently had a discussion with Garth Nicolson, Ph.D. in the fibro / CFS forum. Dr. Nicolson briefly mentions ALS in one of his replies to bdm92. I thought you might be interested. If you are also interested in the review that Dr. Nicolson wrote, “Chronic infections in neurodegenerative and neurobehavioral diseases” published in Laboratory Medicine, vol. 39, pp. 201-299, 2008... be sure to let me know via PM (private message). I will just need your e-mail address and then I can e-mail it to you. Unfortunately, this document cannot be posted...at least at this time. The review discusses ALS and the role of infections in many ALS patients.

http://www.medhelp.org/posts/show/655603

Warmest Regards,

PlateletGal

[biowham]

I was under the impression that ALS is a MOTOR DISEASE, not a SENSORY DISEASE. In other words, the symptoms should be motor weakness, fasciculations, etc., not paresthesias like numbness and tingling. Does anyone recall having learned that? If I remember correctly, there pretty much have to be fasciulations.

Is there any motor weakness, muscle atrophy in your husband's exam? What were the original EMG results?

Bio

[Fluffysmom]

I'm glad you came here to see us.  You will have many people praying for the best possible outcoume, and get really good advice like from slightlybroken and Sunnytoday.  

I get copies of all my medical records, even chart notes from doctor's visits.  The chart notes give me a clearer picture of what the doctor is thinking and how well they listen and understand what I have told them.  Having my records organized has been very helpful as I see different specialists.

I want you to know that I share your outrage at the first neurologist, the one devoid of compassion.  It may not help much to hear this, but many of us here have run into similar experiences; neurologist that make snap judgements on too little information, or neuros that are dismissive, focus on one thing and look no further, gigantic egos,  and other things that have left us in tears and despair.

This is a great place to learn how to navigate the medical system, to become more proactive, to ask questions and insist on clear communication, and to persist until you get clear answers and a correct diagnosis.

You may want to read some of our Health Pages if you haven't already; they're in the upper right hand corner of this page.  They are focused on MS, but there all sorts of great information.

This is also a great bunch of caring and compassionate people.  I don't have a diagnosis, and have been propped up by this wonderful forum as I have worked my way up to my third neurologist.  I was able to vent about the horrible single appt. with #1, discuss my hopes and disappointments and dismissal with #2, and share some progress, slow as it may be, with #3.  I have made some good friends and come to care about so many people.

I find that I came here for support, and found myself wanting to help others.  I find it easier to deal with my own issues when I also am busy caring about these wonderful people here.  I pray a whole lot more than I used to!  :o)

You and your husband will be in my thoughts and prayers.

Kathy

[slightlybroken]

Hi again

Sorry to bug you. I would find out if your husband had a Western Blot Lyme Test. There isn't different types of lyme diseases but all lyme test are not created equal. The Western Blot is more acurate.

Take Care

[Sunnytoday]

Hi there again,
I hope that you have had time to read this above post and soak it in.

Basically it sounds like ALS is a diagnosis of exclusion, and it needs ot be made over a period of several months, after observation of the patient to see if the patient is worsening, after all other dieases have been excluded. I'm sorry to say, but it does NOT sound like that has been done. Please hang in there, I do truly hope that you are able to find a doctor who does all the correct tests to elimnate all other possible disease proccesses that could be happening.

Do not give up hope to easily, and try to stay informed of things that are happening. Try to get copies of all the tests that have been run, and that will be run from all your doctors to create an medical record at home. Be pro-active, and keep this record updated, it will help you if he switched doctors, has additional specialists, or is hospitlized. In many cases, it keeps tests from being double run, and the best part about a personal health record is that if helps you stay in the loop, and keeps you in control, so to speak.

It sounds like this is happening very fast for you, so hang it there, ok? I hope that this second doctor is very thorough, if not be sure to ask questions and not just take a simple answer, there is nothing wrong with getting more opinions when dealing with such a tough diagnosis, ok?

~Sunnytoday~

[laney55]

Thank you so much for taking your time to send this to me.  It is most helpful and thoughtful.  He has been tested for Lyme disease and it has been ruled out.  I did not know there were different types of Lyme disease.  He has also had a thyroid test and been tested for syphillis.  
His symptoms are not getting worse.   Actually, he has stated he feels a lillte better.   He has no problem breathing or swallowing, which is something the doctors keep asking him.  
His father and brother have similar electrical nerve movements in their left leg also.   I think that is telling but the doctor said it is of no consequence.
I beginning to not trust doctors and I do not want to feel like that.   At least the 2nd doctor has some compassion and treats us with respect.

Once again,  thank you for so much information.  All I have been able to find is dooms day information.   Much appreciated.

[slightlybroken]

This is what I found on DX ALS:

"No test can provide a definite diagnosis of ALS, although the presence of upper and lower motor neuron signs in a single limb is strongly suggestive. Instead, the diagnosis of ALS is primarily based on the symptoms and signs the physician observes in the patient and a series of tests to rule out other diseases. Physicians obtain the patient's full medical history and usually conduct a neurologic examination at regular intervals to assess whether symptoms such as muscle weakness, atrophy of muscles, hyperreflexia, and spasticity are getting progressively worse.

Because symptoms of ALS can be similar to those of a wide variety of other, more treatable diseases or disorders, appropriate tests must be conducted to exclude the possibility of other conditions. One of these tests is electromyography (EMG), a special recording technique that detects electrical activity in muscles. Certain EMG findings can support the diagnosis of ALS. Another common test measures nerve conduction velocity (NCV). Specific abnormalities in the NCV results may suggest, for example, that the patient has a form of peripheral neuropathy (damage to peripheral nerves) or myopathy (muscle disease) rather than ALS. The physician may order magnetic resonance imaging (MRI), a noninvasive procedure that uses a magnetic field and radio waves to take detailed images of the brain and spinal cord. Although these MRI scans are often normal in patients with ALS, they can reveal evidence of other problems that may be causing the symptoms, such as a spinal cord tumor, multiple sclerosis, a herniated disk in the neck, syringomyelia, or cervical spondylosis.

Based on the patient's symptoms and findings from the examination and from these tests, the physician may order tests on blood and urine samples to eliminate the possibility of other diseases as well as routine laboratory tests. In some cases, for example, if a physician suspects that the patient may have a myopathy rather than ALS, a muscle biopsy may be performed.

Infectious diseases such as human immunodeficiency virus (HIV), human T-cell leukaemia virus (HTLV), Lyme disease, syphilis and tick-borne encephalitis viruses can in some cases cause ALS-like symptoms. Neurological disorders such as multiple sclerosis, post-polio syndrome, multifocal motor neuropathy, and spinal muscular atrophy also can mimic certain facets of the disease and should be considered by physicians attempting to make a diagnosis. There have been documented cases of a patient presenting with ALS-like symptoms, having a positive Lyme titer, and responding to antibiotics. Lyme disease is particularly difficult to diagnose.

Because of the prognosis carried by this diagnosis and the variety of diseases or disorders that can resemble ALS in the early stages of the disease, patients should always obtain a second neurological opinion.

A study by researchers from Mount Sinai School of Medicine identified three proteins that are found in significantly lower concentration in the cerebral spinal fluid of patients with ALS than in healthy individuals. This finding was published in the February 2006 issue of Neurology. Evaluating the levels of these three proteins proved 95% accurate for diagnosing ALS. The three protein markers are TTR, cystatin C, and the carboxyl-terminal fragment of neuroendocrine protein 7B2). These are the first biomarkers for this disease and may be first tools for confirming diagnosis of ALS. With current methods, the average time from onset of symptoms to diagnosis is around 12 months. Improved diagnostic markers may provide a means of early diagnosis, allowing patients to receive relief from symptoms years earlier."

I'm glad you are getting a second opinion. It sounds to me that ALS does have a lot of mimics and I hope that your new neurologist does look at all of these mimics. Please keep in mind there is no single test to say for sure that your husband has ALS. It is a clinically dx disease, meaning..once they have officially ruled out all other causes and if he fits the criteria (usually a positive EMG,  muscle weakness, atrophy of muscles, hyperreflexia, and spasticity are getting worse with each exam), then they can give the dx of ALS.

What test have they done so far? Do you know if they have done a Lyme test and what type? Is his symptoms getting progressively worse?

I hope this helps

[laney55]

Thanks for your response.   He is experiencing numbness and tingling in his left leg and arm.   Somedays his leg feels weak.   He first noticed his foot not responding correctly when he was trying to run playing softball.  He has a very high arch in his left foot.  He has had multiple blood tests, urine tests, MRI and and EMG.   The doctor who gave his "opinion" is a neurologist.  One devoid of compassion I might add.  All of the blood and urine tests came back negative.  
We did go to see another specialist in the same field.  She took preliminary tests but said she cannot make a diagnosis without an EMG.   This will take place on 10/22.  We are just devastated to say the least and praying for a good outcome.  
I guess the real reason I am writing is my anger at the first doctor who just blurted out what he thought he has without a definitive diagnosis.   Even if he is correct he took a month out of our lives, a month of crying, that we will never get back.  My hope is that doctors will treat their patients as people and not as case studies.  Well, thanks for letting me rant.  It felt good.
Thanks for this web site also.   I think this may be the first positive interaction I have felt for quite some time.  Keep up the good work.

laney55

[Sunnytoday]

Hi Laney!
I have a few quick questions that may help us to answer your questions better...
What symptoms does your husband have? How do these symptoms present on his nuero exam? What tests have been run and what results has he had (MRIs, blood work, spinal taps, anything else)? Last but not least what type of doctor examine and diagnosed him, and have you went for a second opinion?

I truly hope that this is not the diagnosis that he will end up with, although a right diagnosis is important.

We here on the MS forum will try to reach out and help you as best as possible. Many of us here to experience tingling in many places on our bodies, and for me, that was one fo the first symptoms that made me go to a neurologist. I have yet to be diagnosed, but many here have, and I'm sure they will stop by to help support and answer your questions.

~sunnytoday~

[OperaMBA]

I wish I knew something about the subject that would be helpful.

Your husband and your family are in my prayers.

Richard