Could this be ALS/MND

[woody20]

Hi there,

          I have been having really strange symptoms for the past 9 months which after extensive tests has lead me to believe I could well have ALS.  It started with chest pain on the left side which eventually went to all over body pain.  After 6 and half months of this i started experiencing perceived weakness in my left leg.  Then i noticed a tremor in my left hand and perceived weakness in left arm.  This worried me about ALS because of the typical nature in which Als starts in one place then spreads.  In my left leg the weakness feels associated with the calf.  Within the last two weeks i have had fasciculations in my calf and quad on the left side and last night it started in my right foot a little.  I have had a brain mri, chest ct, thoracic, lumber and cervical mri and a ridiculous amount of bloods all of which were normal.  i have also seen the same neurologist three times who believes nothing is wrong neurologically due to neurological examination.  he says there is no weakness, however my left side feels weak to me and uncomfortable all the time.  These symptoms in particular the weakness are persistent and are really worrying me.  I am due to have an emg soon but of my own accord.  the neurologist said i'm ok.  If this is not ALS what on earth could it be?

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

It must be emphasized that in most cases muscle twitches are benign meaning that they are of no consequence and are not resulting from a serious cause. In such cases, the twitches may be related to anxiety/stress, caffeine, and often occur after recent strenuous activity or muscle over-use. It is important in such cases to reduce stress/anxiety levels and to reduce caffeine intake. Tremors of the hands can be physiological that is exacerbated by stress/anxiety and caffeine.

Benign fasciculation syndrome, aka BFS, is a condition in which there are involuntary twitches of various muscle groups, most commonly the legs but also the face, arms, eyes, and tongue. If the diagnosis is confirmed and other causes are excluded, it can be safely said that the likelihood of progression or occurrence of a serious neurologic condition is low.

When BFS is present but not particularly bothersome or disabling, treatment is not necessary. If severe and it requires treatment, there are a few medication options though this condition is not very common, and the research that has been done on its treatment is limited. Minimizing caffeine and stress, and treating anxiety if it is present, will improve your symptoms.

However in general (and please understand I am not trying to imply I feel this is the case in you), when fasciculations occur in the setting of associated symptoms such as progressive loss of sensation, tingling or numbness, weakness, trouble swallowing and other symptoms, the cause may be due to a peripheral nervous system problem at an area called the anterior horn cells which is the area where the nerves that supply motor innervation to our body arises. These are the cells that give off the nerves that allow us to voluntarily contract our muscles. The diseases that might affect the anterior horn cells include ALS (also called Lou Gherig's disease), a condition called spinal muscular atrophy, polio-like viruses, west nile virus, and other infections.

Another nervous system problem, neuropathy, may also lead to fasciculations. There would likely be associated with weakness or sensory changes. If symptoms migrate, it could be a seizure or migraine or metabolic problem such as with calcium.

Often these symptoms may reflect emotional/psychiatric problems related to stress (what is called somatization disorder). The latter is a true medical condition whereby instead of a patient experiencing depression or anxiety, they experience physical symptoms, and once the stress is addressed, the symptoms resolve.

As you can tell, the differential is broad. I suggest that you follow up with your primary doctor and your neurologist as your primary doctor feels fit. It is important that you discuss your concerns with him/her. You may need basic lab work to ensure your blood chemistry, particularly your potassium, sodium, and calcium, is normal. Further workup such as EEG, EMG/NCS may be beneficial if your history and examination suggest an underlying neurological problem.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[Caryopteris]

Unfortunately, neurological problems like ALS and MS can take time to diagnose.  I think doctors listen to patients sometimes and think they are just worrying too much, but the fact is, some of us do get "rare" diseases.  It is hard to be a patient patient.  

One thing I have noticed with my Celiac disease is that food allergies cause a lot of problems. Celiac disease, particularly, causes a lot of other autoimmune problems.  To avoid developing more autoimmune problems, we have to stop eating gluten.    For instance, my erythema nodosum, Raynaud's, migraines, and DH (a skin condition), all go away when I stay off gluten.  I believe MS can be related to gluten for some people, but I'm not sure.

So while you wait for your symptoms to declare what's going on, you could get tested for food allergies, and especially gluten.  It seems that our immune systems need us to pay attention to our allergies.  Maybe if you have a food allergy or two and you change your diet, whatever you have will go away.  

Good luck.  

[woody20]

Hi.  Thanks for the response. i gave up gluten for a long time and saw no improvement in symptoms.  If you look at the tests i already have had done ALS looks like a likely cause.  is it possible for the neurologist not to detect any weaknesses or abnormalities in a neurological examination even though you have ALS?  And will an EMG definitely rule ALS out and if so what else could it be?

Many thanks

[woody20]

Thanks for the detailed response Christopher.  I understand that weakness and fasciculations together are usually due to ALS.  However when the neurologist doeas a neurological examination he can't find weakness even though i have the feeling of weakness on the left side of the body  It almost feels like my left leg is full of led and my left arm is and that the left limbs feel tight and are not contracting/ functioning properly.  My neurologist believes nothing is wrong neurologically and he is a top consultant so that must mean i can't have ALS.

However to me I feel weak and have fasciculations and cramps.  I find it so difficult how the doctor can be sure i don't have ALS/MND.  

What are your beliefs on this?

Many thanks
James

[woody20]

Thanks for the detailed response Christopher.  I understand that weakness and fasciculations together are usually due to ALS.  However when the neurologist doeas a neurological examination he can't find weakness even though i have the feeling of weakness on the left side of the body  It almost feels like my left leg is full of led and my left arm is and that the left limbs feel tight and are not contracting/ functioning properly.  My neurologist believes nothing is wrong neurologically and he is a top consultant so that must mean i can't have ALS.

However to me I feel weak and have fasciculations and cramps.  I find it so difficult how the doctor can be sure i don't have ALS/MND.  

What are your beliefs on this?

Many thanks
James