Possible ALs. New Member Becky
 

I am also new, I am young 28 year old female. I have absolutely no symptoms. None. I am perfectly healthy, however, I went in to discuss a recent MRI I had gotten for some Migraines I have been experiencing. He did a thorough exam and said I was perfectly normal. However, on MRI I had findings consistent with those of ALS, not MS, not stroke, not tumor, nothing. THe only thing he could think it to be was ALS, but after examining me, he said that I have absolutely no neurologic signs.

My question is, what the heck does that mean? Am I going to get it? Do I have it and the signs havent showed up yet? Is it something else? I am so upset adn confused right now. He wants to "observe" this. But in the meantime I am thinking of how to plan for my two little babies for the day I will be gone, or think about my husband having to care for me. I mean, I know Im freaking out, but how do you handle news that it may or may not be somethign like this?

Any words of advice, comfort, experience in this would greatly calm my senses.

Hi Becky...it would be hard not to freak out while being "observed" by this dr. Please try not to think of the worst possible case. :hug:

I have no experience with Als but someone will come along who does and give you support and advice.

Becky
 

Becky try posting at another forum here..a busier one. Maybe Womans Health. :grouphug:

Here is a link to it.

http://neurotalk.psychcentral.com/forum41.html

I'd get a second opinion since you have none of the symptoms.

Becky,
I may be out of line here ---but for lack of better words this doctor was a complete jerk !!!
MRI's in people diagnosed with ALS look normal --so it was more than a weird thing for him to say --
I am not a doctor nor even a nurse -- my husband has had ALS for 8 years -
But , I will say this -- this doctor was giving opinions in something he did not specialize in ---
So his opinion with you being asymptomatic of ALS -- is absolutely worthless and uncredible --as you can not diagnos ALS on an MRi -
MRI 's are used to rule other things out when neurological damage is observed in a physical exam or when other conditions are suspected-- but it is not a diiagnostic test to identify ALS itself --
Migranes are also not a symptom of ALS--
Sorry - but I 'm quite upset at what this man -- physician or not-- said to you -- totally unprofessional --as he is totally out of his league and is not a specialist in ALS--
Lisa

Becky,
Sorry for the double posts , but after calming down myself abit about the way that doctor suggested possible ALS based solely only an MRI with no symptoms present .
I went to find some material you might wish to see, on the diagnosis process of ALS.
The source is wilklepedia , and I found it highly accurate in my husbands diagnostic experience - he has ALS -- but his MRI was normal -as this article stated is typical in ALS - as the MRI is used to rule other conditions out as an explanation of symptoms --which in your case you had none as migranes are not a symptom of ALS -- so I would not worry too much about having ALS --if you are concerned I would ask for the immediate referral to an ALS specialist --as that would be the only person qualified to make such a diagnosis -
I am posting the link -- but copied the relevant part--Lisa


Diagnosis
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 leukemia virus (HTLV), Lyme disease, syphilis[14] and tick-borne encephalitis [15]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. [16]. 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. [17] http://en.wikipedia.org/wiki/Amyotro...eral_sclerosis

Wow! Thank you so much. First off let me say, you are a very amazing woman to have a husband that deals with this and stay so positive. I appreciate all your advice, and frankly I was feeling quite upset and confused as well after he stated that I may have ALS. So I am with you on that. You, more than most, have calmed my senses and put me at ease.

Again, thank you. I will read what you have suggested.

Becky,
I am glad you are feeling calmer.

ALS is a very serious diagnosis and a physician should not just suggest it as a possibilty without substantial evidence and numerous tests .

I feel kind of embarrassed that I lost my composure earlier

But all I could think is what ? --a MRI for a migrane led a doctor to suggest ALS, with a normal physical exam. How is this possible ?
As an MRI is just used to rule out other conditions -- in ALS MRi's are normal.
Migranes have nothing to do with ALS and are certainly not a symptom.

Still , even if this physician saw abnormal findings in a physical exam , he should be refering you to an ALS specialist for futher testing.As many things can mimic the early stages of the disease.
.
I have to tow a thin line ,as I am not a physician or even a nurse.So ,I certainly can not make diagnosis over the internet.

But ,I do feel quite confident in telling you , if what he has said has upset you , ask him for a referral to an ALS specialist. As only they are qualified to make a diagnosis of ALS.

If you have absolutely no physical symptoms whatsoever of this disease , try not to worry in the meantime . Lisa

you-
 

I really hope that everyone is right and this neurologist is whacky BUT you CAN have findings consistent with ALS on MRI. Those things can also be caused by other things like TBE viruses- tick borne encephalitis viruses.
The herb Ledum Palustre inactivates TBE viruses. Can't hurt- and could help if you were having that sort of process happening. USA neurologists never even think of TBE viruses but they can cause the same things and can be treated.

This is the ALS/Lyme Page
http://www.angelfire.com/planet/lyme...7/ALSLYME.html

MRI can show in ALS: Corticospinal tract hyperintensity.

MRI and SPECT findings in amyotrophic lateral sclerosis
Journal Neuroradiology
Publisher Springer Berlin / Heidelberg
ISSN 0028-3940 (Print) 1432-1920 (Online)
Issue Volume 34, Number 5 / September, 1992
Category Diagnostic Neuroradiology

Diagnostic Neuroradiology
MRI and SPECT findings in amyotrophic lateral sclerosis

Demonstration of upper motor neurone involvement by clinical neuroimaging

F. Udaka1, H. Sawada1, N. Seriu1, K. Shindou1, N. Nishitani1 and M. Kameyama1

(1) Department of Neurology, Sumitomo Hospital, Osaka, Japan


EXCERPT: MRI was performed in 21 patients and single photon emission computed tomography (SPECT) withN-isopropyl-p-123I iodoamphetamine in 16 patients, to visualize upper motor neurone lesions in amyotrophic lateral sclerosis. T2-weighted MRI revealed high signal along the course of the pyramidal tract in the internal capsule and cerebral peduncle in 4 of 21 patients. SPECT images were normal in 4 patients, but uptake was reduced in the cerebral cortex that includes the motor area in 11.

Key words Amyotrophic lateral sclerosis - Upper motor neurone involvement - Magnetic resonance imaging - Single photon emission computed tomography

http://www.springerlink.com/content/w778u3973563hx22/

It CAN show things consistent with ALS but MOST ALS patients have normal MRIs. But some things on MRI *do* red flag ALS.

If you have ever been bitten by a tick, have ever been in ticky country, you should know that TBE viruses can cause ALS, it has been documented, and
there are TBE viruses in the USA. You can't cure them, but you can potentially INACTIVATE them.

We have had 4 ALS patients come to our local group- 3 are alive.
All had extended treatment for Babesiosis and 2 had longterm IV Rocephin.

I hope you DON'T HAVE ALS, but if you DO end up getting diagnosed ALS, please give TBD treatment a chance because sometimes it works. Like I said, I hope everyone is right and this guy is an idiot, but if he was right and you become symptomatic, don't despair. ALS is NOT a death sentence for sure, some people- I know them- have lived and gone back to normal or closer than they ever thought they would.
Sincerely,
Sarah Olson
Aptos, CA

p.s.
 

I agree 100% with LIsaG that he CANNOT have ___diagnosed___ you with ALS based on that, but he certainly could have found findings consistent with an ALS diagnosis.

Migraines are a symptom of Babesiosis which often occurs with TBE viruses. Babesiosis causes acidosis and TBE viiruses are ph mediated by acidity. I would make sure you are tested for all strains of Babesiosis, and HGE and HME Ehrlichiosis, and TBE viruses- Powassan and the "Deer Tick Virus" are US strains. The progressive form of TBE viruses can cause ALS and can be inactivated.

Sarah,
I have never in my life , heard of anyone told they "may" have ALS with a "normal" physical exam and told that an MRI could suggest the possibilty of it.
I'll take that back , this poor guy once was told by a GP that because his tongue was scalloped , he may have ALS.It took him years of ALS specialists telling him he did not have it to believe it.
Even if this physician was a neurologist , which I am not certain of ?
He was not an ALS specialist ,as no way , would I believe an ALS specialist would even suggest the possibilty without extensive testing including EMG's.
ALS is a diagnosis of exclusion. A MRI can not diagnos ALS .
My husband was diagnosed with bulbar ALS - his MRI was normal. The MRI was used to rule out MS, Stroke etc.
If Becky has no symptoms , I would not worry. And I would again see an ALS specialist, if I was concerned immediately .
Migranes certainly are not a symptom of ALS
Lisa

Double posting again on this topic but here is the diagnostic criteria for ALS. Lisa

http://www.wfnals.org/guidelines/199...#neuroevidence


Clinically Possible ALS

is defined when clinical signs of UMN and LMN dysfunction are found together in only one region or UMN signs are found alone in two or more regions; or LMN signs are found rostral to UMN signs and the diagnosis of Clinically Probable - Laboratory-supported ALS cannot be proven by evidence on clinical grounds in conjunction with electrodiagnostic, neurophysiologic, neuroimaging or clinical laboratory studies. Other diagnoses must have been excluded to accept a diagnosis of Clinically possible ALS.

I am going to discuss the MRI findings with the top ALS clinic at the University of Utah, where I live. Im sure he will let me know what I can expect from the MRI finding.

As far as my migraines go, I usually would get them 4-6 times a month. I have not had one for nearly 4-5 weeks. I think that is a clear indication that the headaches are actually getting better and that it has nothing to do with what might have been seen on MRI.

There are other possiblities that the radiologist and my neurologist mentioned. (and no this was not a "learning hospital"). I am more inclined to beleive it is more x-linked or a genetic abnormality with my myelin.

I beleive he is just ruling out the worst case in the beginning and going from there. He did not want to do any tests of any kind at this point which makes me beleive that if he truly thought this could be ALS, he would have done an EMG or gotten another MRI. Just the mention of it in my report and when he said it to me, well, freaked me out.

I will continue to seek further advise and opinions as well as read more information about it.

Lets try to be positive. Thank you all for your concern.

Becky ,
I am glad you are going to see an ALS specialist.As this would be the most qualified person to rule ALS out or diagnos the disease..

What confuses me and absolutely biogles my mind is if most ALS Mri's are normal in ALS - what does consistent findings for ALS on a Mri mean ? What significance in diagnosing the disease itself could they have.
To me that just does not make sense - as if most Mri's of people with ALS are normal , how could it be a indication of ALS in someone who was completely asymptomatic of the disease ?
My husband was told his Mri was normal --it was only ordered to rule out other possibilities Ms , brain tumor -- --that may have caused his slurred speech , clonus hyper reflexes , exaggerated gag reflex that were seen in the clinical exam-

If you have a completely normal physical exam as you have posted - with absolutely no hyper reflexes , clonus , exaggerated gag reflex , atrophy , etc, -- I 'm puzzled why your physician would even mention ALS --


I understand the Mri - was done for migranes to rule out other causes for headaches -- but both migranes and headaches are not a symptom of ALS at all -

If the doctor did find abnormal findings on a physical exam consistent with ALS , that he neglected to mention -- I too wonder why an EMG was not ordered or an immediate referral was not made by him to an ALS clinic for further evaluation--

ALS is a disease if exclusion when no other explanation can be found to explain upper and motor neuron damage seen in a physical exam - it unfortunately can not be ruled out nor diagnosed first - as other diseases and conditions must be ruled out to explain physical symptoms and abnormal physical findings in a clinical exam-- this is true in saying the disease is even "clinically possible" as I posted on the accepted clinical diagnostic criteria on the link above.

I lost my compusure , in my first post , and should not have called the physician a jerk, but when you posted all he could think of was ALS after seeing your Mrii , for a migrane no less --I just did not and do not understand how that is possible --as ALS can mimic a wide variety of more treatable conditions -- migranes are not a symptom of the disease --and Mri's in most people with ALS are normal -- coupled with the fact you posted ie said your physical exam as well was normal --it just does not make sense to me of why he would even mention ALS.
Why scare you by even mentioning something like ALS --with no evidence to support the clinical possibilty of it --
Lisa

Sarah is correct.

Very few people with ALS do have abnormal MRI, however these changes only occur in "late" stages of the disease.

Thanks, Lisa, for easing Becky's mind...her Dr isn't very professional :eek:

people who can ruin your day
 

The tech who started my NCV/EMG started talking 'ALS' half way through the procedure and i told him to shut-up as he was no ALS specialist...i am waiting for my neuro to do ALL the tests before i want to hear those words....

Thanks Jeannie so much for clarifying that -- :)

always good to see you posting and to see you are still hanging in there ---


Daisy Mae ,
Nice to meet you--good to hear you are waiting for an ALS specialists opinion -- before worrying too much -as he will insure all apppropriate tests are conducted --and the EMG is read properly --Lisa