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Avatar universal

ALS, been scared to death for 4 months now

I am 31 year old Male with some symptoms that have been ignored so far by Keiser Permenente. Symptoms started with vertigo, swullen feeling with left eye and ear, fatigue, nausea, lack of appetite, heart beat slowed and beat very hard, night sweats, super stiff neck which i could not move, buring in my left arm and shoulder. The worst was a burning attack that went across the elft side of my head down my left neck which lasted for about 2 1/2 hours in the middle of the night.
Was started on Doxycycline due to the location of where i have lived most of my life East Lyme, CT, they thought maybe lyme. Took abx and some symptoms went away right away such as stiff neck and burning feeling my my left arm and shoulder. Now I have new symptoms which scream ALS. Left Sternomastoid muscle has become smaller then the right (attachment to collar bone has become much thinner and smaller), possible wasting, left neck weakness, left shoulder weakness and loosness, left jaw weakness, left side swallowing difficulty hyoid clicks now(although swallow study showed normal) twitches all over my body (everywhere) started shortly after starting Doxy.
Had Two MRI's done (with contrast) one done at Columbian Pres in NYC, CT scan, EMG, NVS, 4 neuro clinical exams, CK levels checked, ANA, T3, T4, TSH, MG Panel, all normal. Only test so far came back with anythign was testosterone was low.
1)Whats the likelihood of ALS?
2)EMG was done by Chief of Neuro at Keiser on Feb 1st, should i get another one, neuro says no?
3)What else could this be?
4)Is weakness always a first sign of ALS or wasting?
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Avatar universal
I am a 36 y/o male with hx of erythema nodosum and High Cholesterol. Meds include 100mg daily thalidomide and 10mg lipitor which was recently d/c'd due to increased CK of 600. I have experienced voluntary muscle cramps globally and stiffness throughout my body.However, feeling some better off the Lipitor. I will be re-tested in another week to see if going off lipitor decreased CK. I have had sinus surgery late last week, and recently have experienced muscle twinges throughout my body at rest. Anesthesia reaction? Can't say I feel weakness or see any atrophy, but extremely scared I may have ALS. Having two young children I would not want them to see this. Does this sound concerning, and what other test should be conducted (thyroid, etc..)
Thanks
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Avatar universal
I have gone through almost the exact same thing for months now also. So far all tests have come back normal. Family doctor has prescribed paxil for anxiety although I have not decided whether or not to take it as I have a hard time believing that a happy healthy 30yr old could get so stressed out for no reason.  Let us know what you find out.  I have also had strange skin lumps and swollen lymph nodes. Good luck!
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Avatar universal
1) very low

isolated sternomastoid wasting would be very uncommon, the most common cause of an asyymetry would be increase in size of the opposite size such as in cervical dystonia. Fascicaulations that are more widespread in onset are more likely to be not ALS. They can also be caused by an overactive throid gland, exrecise, cold, certain meds, and as a benign syndrome with or without cramps. To diagnose ALS, objective signs of muscle or spinal cord dysfunction must be domenstrated by the neurological examination or EMG in 3 limbs. ALS does not cause sensory symptoms. The neck stiffness and left sided pain perhaps sounds like a meningoradiculitis that usually are infectious in nature ie Lyme.

2) Depending on the quality of the EMG and how many limbs/muscles were sampled. If EMG of the affected area is normal it is unlikely that an asymptomatic area will be abnormal if tested.

3) I cannot give you a clinical diagnosis over the internet, as this site is purely eductional, but as I mentioned there are other causes of twitching, and other symptoms that are not suggestive of ALS. A spinal fluid analysis would have been helpful perhaps to look for infection or inflammation but may not be helpful at this point, check with your doctors.

4) both come together, but weakness may be more sensitive to clinical testing than visually detecting a change in the appearance of the muscle. THe muscle can lose up to 80% of its 'motor units' before clinical weakness is apparent, on the other hand.
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Avatar universal
My EMG was done two months ago, on my left thigh, calf muscle, bicep, forarm, hand, shoulder, paraspinal muscle, mastoid and a couple other back muscles that felt like jello at the time.

This swallowing thing is the worst right now, plus my tongue gets pretty tired. Could this be a brainstem lesion causing this?
How do you test for brainstem lesions?
What would  muscle biopsy do to rule in or out ALS?
What else could cause swallowing problems on the left side?

Any ideas would be very helpful, thanks.
Helpful - 0
Avatar universal
Out of curiousity, have you, in the past year, been treated with a fluoroquinolone-based antibiotic (levaquin, tequin, cipro, floxin, etc)? If so, you may be suffering from an adverse reaction to that drug. These reactions can come on long after you are treated, and cause long-lasting symptoms like you are experiencing. Very often those hurt think they have MS, or ALS, or fibromyalgia, or a host of other maladies. They spend thousands of dollars getting MRI, blood and other tests done. Doctors just don't know how to handle this affliction, or just refuse to believe it exists.

If you are suffering these weird symptoms, I suggest you check out the following sites:
www.medicationsense.com
www.fqvictims.org
http://health.groups.yahoo.com/group/quinolones
Helpful - 0
Avatar universal
I am not a doctor but I am sure that the neuro you saw should have dx ALS if you had it. I had simular symptoms as you, caused by anxiety and depression. Try not to worry, take a holiday from your thoughts about ALS, start with one day tomorrow!
Helpful - 0

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