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Arthritis (Expert Forum)
Scared this is ALS, or is the Autoimmune, What else could it be?
Answered by
Kevin Pho, MD - Internal Medicine
Kevin Pho, MD
Boston - MA
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Scared this is ALS, or is the Autoimmune, What else could it be?
by Luke 339, Feb 23, 2006 12:00AM
Started with some vertigo and me getting sick Nov 29th 2005. I just landed the day before from Hawaii (Kauai to be exact). Was up for at least 3 hours with this condition. Went to docs next day, they did a balance test on me said i was ok. A week later experienced an internal shaking, like muslce twitching on the left side of my chest (was not my heart). Went to ER in the morning, chest x-ray was done and doc said its prob pneumonia, gave me 7 days of biaxin sent me on my way. Felt better after bought of asthma.
Saturday 24th of december woke up with clogged left ear. Got on airplane back east to visit fam and had to pressurize my left ear like crazy. Finally heat started radiating from my ear which quickly spread to my left eye. left eye felt swullen and was radiating heat but if you look into mirror eye was not swullen. Landed with the same feeling and also started to feel dizzy and fatigued. The next day (Christmas) felt even more fatigued with the swullen eye and ear clgged went to ER. CT scan was clear had horizontal nastagmus. Doc said i needed MRI with contrast if symptoms got worse. Said it could wait till i got back to LA unless it got worse.
Kept on with my week feeling very tired, dizzy, eye swullen feeling at least, nothing changed. Tuesday night around 2:30 AM had some sort of buring in the left side of my head and neck, super pain, like buring and electricity at the same time. Lasted for a couple of hours. At that point i did not know what happened, maybe stroke who knows went to another ER where got MRI with contrast done. Neurologist said it might be artery in back left neck torn or ocluded. Sent me to Columbia by ambulance, stroke ward.
There I got another MRI, MRA, Heart Doplers, Neck Doplers and a lumbar punture. They used blood thinners early on but stopped then about 6 hours before lumbar punture. At the end of all this testing they said they had no idea what caused my problem, no signs of MS or any other other bad times disease.
Went back to doc they ran me for hyperthryroid, all infectious diseases (Aids, Hep B and c, Syphilius), Mystinius Gravis, Rhematoid factor, CPK, Magnesium all negative. Did MRI of neck and spine with contrast all normal, no injuries, impingements, no swelling spine and neck look normal and healthy (nerves and muscles). Neuro did EMG and NCS about 3 weeks ago, completely normal.
Pain burning and neck stiffness changed to weakness in my left shoulder,neck and leg (not physical weakness the feeling of weakness). Strange buzzing like feeling under skin and electricity feeling flowing down my left leg. Right now my left shoulder is weak, left leg weak, fatigue is high, lower back pain, pain on the left side of abdomen. the weakness in my neck went away and now its just weakness in my leg and shoulder. Trouble swallowing (feels like something is in my throat).
What could this be, Neurologist says no to ALS, MS ruled out, what causes one sided weakness like this? Could it be Lyme I am from CT.
Saturday 24th of december woke up with clogged left ear. Got on airplane back east to visit fam and had to pressurize my left ear like crazy. Finally heat started radiating from my ear which quickly spread to my left eye. left eye felt swullen and was radiating heat but if you look into mirror eye was not swullen. Landed with the same feeling and also started to feel dizzy and fatigued. The next day (Christmas) felt even more fatigued with the swullen eye and ear clgged went to ER. CT scan was clear had horizontal nastagmus. Doc said i needed MRI with contrast if symptoms got worse. Said it could wait till i got back to LA unless it got worse.
Kept on with my week feeling very tired, dizzy, eye swullen feeling at least, nothing changed. Tuesday night around 2:30 AM had some sort of buring in the left side of my head and neck, super pain, like buring and electricity at the same time. Lasted for a couple of hours. At that point i did not know what happened, maybe stroke who knows went to another ER where got MRI with contrast done. Neurologist said it might be artery in back left neck torn or ocluded. Sent me to Columbia by ambulance, stroke ward.
There I got another MRI, MRA, Heart Doplers, Neck Doplers and a lumbar punture. They used blood thinners early on but stopped then about 6 hours before lumbar punture. At the end of all this testing they said they had no idea what caused my problem, no signs of MS or any other other bad times disease.
Went back to doc they ran me for hyperthryroid, all infectious diseases (Aids, Hep B and c, Syphilius), Mystinius Gravis, Rhematoid factor, CPK, Magnesium all negative. Did MRI of neck and spine with contrast all normal, no injuries, impingements, no swelling spine and neck look normal and healthy (nerves and muscles). Neuro did EMG and NCS about 3 weeks ago, completely normal.
Pain burning and neck stiffness changed to weakness in my left shoulder,neck and leg (not physical weakness the feeling of weakness). Strange buzzing like feeling under skin and electricity feeling flowing down my left leg. Right now my left shoulder is weak, left leg weak, fatigue is high, lower back pain, pain on the left side of abdomen. the weakness in my neck went away and now its just weakness in my leg and shoulder. Trouble swallowing (feels like something is in my throat).
What could this be, Neurologist says no to ALS, MS ruled out, what causes one sided weakness like this? Could it be Lyme I am from CT.
Doctor's Answer
by Kevin Pho, MD, Feb 24, 2006 12:00AM
, Feb 24, 2006 12:00AM
You have had a very comprehensive evaluation that would rule out most of the major diseases.
Further evaluation can be done with magnetic resonance spectroscopy (MRS). If this tests continue to be negative, I would say that ALS is very unlikely.
You can look at various types of muscle disorders - such as myositis - muscle enzymes as well as an aldolase level can be considered. Admittedly your symptoms would be an unlikely presentation of any type of specific muscle disorder.
Regarding rheumatological diseases, blood tests looking at the ANA and rheumatoid factor would be reasonable initial tests looking at this.
A referral to a rheumatologist or another neurological opinion (preferably at a major academic medical center) can be considered.
Regarding the trouble swallowing, a barium swallow and/or an upper endoscopy can be considered.
These options can be discussed with your personal physician.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Kevin, M.D.
kevinmd_b
Further evaluation can be done with magnetic resonance spectroscopy (MRS). If this tests continue to be negative, I would say that ALS is very unlikely.
You can look at various types of muscle disorders - such as myositis - muscle enzymes as well as an aldolase level can be considered. Admittedly your symptoms would be an unlikely presentation of any type of specific muscle disorder.
Regarding rheumatological diseases, blood tests looking at the ANA and rheumatoid factor would be reasonable initial tests looking at this.
A referral to a rheumatologist or another neurological opinion (preferably at a major academic medical center) can be considered.
Regarding the trouble swallowing, a barium swallow and/or an upper endoscopy can be considered.
These options can be discussed with your personal physician.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Kevin, M.D.
kevinmd_b
I have had my rheumatoid factor done and it was negative for anything like that. What is ANA? I have also had genetic testing done to see if i had the defective gene that causes these muscle disorders and that was negative also. There is no visible muscle wasting, is there pain with ALS at all?