Abnormal reflexes, weakness, twitching - ALS concern

[hbgmom]

Symptoms started in Feb. Weakness in left arm and leg and extreme fatigue. Has grown progressively worse. Saw neuro at teaching facility. Positive Babinski on left side and hypertendon reflex on left side. Muscle atrophy in left hand - left calf muscles measures 2 inches smaller than right (done by neuro). Loss of muscle mass in left arm as well. 2 weeks ago weakness spread to right side as well. This week severe cramping in hands and feet - fingers get "tired" typing, but still functioning. All along have had twitching all over body - this week for the first time is in my face too. Just recently started feeling like I am hoarse and some difficulty swallowing. Normal MRI of brain and cervical spine in March. Had EMG in Feb, normal and EMG by teaching facility 2 weeks ago on entire left side and he said normal. Said "you don't have ALS now, I can't say you won't have it in 2 years, but you don't have it now". Negative test for Lyme, bloodwork normal, at low range of B-12, started injections 6 wks ago, no change in symptoms. Now has ordered an MRI of thoracic spine. He said not to worry, but the symptoms are progressing. I am a 32-year old female and was very active up until this January when I was overcome with fatigue and then symptoms developed. Does the EMG rule out ALS? What else could cause these symptoms? What other tests should be ordered? Next step? Any advice appreciated. I am very scared.

[CCF-Neuro-M.D.-SH]

First of all keep in mind that I am unable to diagnose you since I am unable to examine you, and this forum is for strictly educational means. Many of the symptoms that you describe are often experienced by patients that are eventually diagnosed with ALS. It generally starts with weakness and atrophy that is asymmetric.  These patients often have mixed Upper and Lower moter neuron signs, for example: positive babinski (up going toe) and decreased reflexes.  hoarse voice and problems swallowing can also occur in a varient called bulbar ALS.  These patients do not typically have numbness or sensory complaints. However, the symptoms can occur in many different disease processes and do not always mean ALS is the cause.  Typically neurologic workups are very complete to evaluate for any other cause of symptoms due to the relatively few treatmnent options for ALS.  The EMG is the best test to evaluate for suspected ALS.  Affected muscles that have atrophy and weakness should show pathologic changes if the process is ALS (fibrillations and axon loss). One possibility is that the problem is above the level of the spinal cord (in the brain) and for this I would suggest a more complete MRI with GAD contrast, Diffusion weighted imaging, saggital flair and MRA.  The EMG test is also subjective and care should be taken to have it done by a neurologist with expertise in ALS (perhaps you need a second opinion).  Additional studies that would likely be helpful for you would be a SSEP (somatosensory evoked potential) to test the "nerve-wiring" from your leg to your brain.  I would also suggest a spinal tap to examine your spinal fluid for abnormal cells and/or signs of inflammation.  I hope this has been helpful.

[KrisKraft]

Could you post your Lyme results?
Which lab conducted the test?
Which tests? The ELISA and IgG, IgM Western Blots?
Was the ELISA negative or equivocol?
Which bands were positive and equivocol on your Western Blots?

The reason I ask, is that almost everyone I've met with disseminated Lyme has the random muscle twitches, and which tests you take really matter with Lyme.

[hbgmom]

I don't know what Lyme test my doctor ordered - I guess I should find out. Thanks.

[WorriedinAZ]

I have similar symptoms and am the same age with 2 little kids. I'm very scared 2. If you find out anything please let me know and i'll do the same. my email is:***@**** I am praying for you. Christine