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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


If someone could just read this and comment and just give me their feedback I would be grateful as I'm going out my mind (which I know the anxiety is not helping any symptom I have).

After I had a C-Section in 2003 I started getting vibrations, tingling, NO numbness, tight skin sensation on my face (like using soap on skin or a sunburn sensation) and on my arms or legs and muscle twitches here there and everywhere (mainly as rest in bed or sitting down). I was sent for a brain scan and neuro appt as they didn't know if it was the spinal anesthetic or MS? Everything came back normal and the Neuro saw me for a year and discharged me. Basically I just learnt to live with it and have had these same ongoing symptoms since 2003.

The past 3 years have been a living hell, dizziness bordering on full blown vertigo, the muscle twitches all over even my face sometimes and now NO weakness but aching and mild cramping of my forearms and legs (back of thighs and calves). My neck and throat area feel heavy and sometimes my face aches like someone is strangling me. Occasionaly I do have difficulty swallowing in the fact that I'll swallow something and I can still feel a tiny piece of it lodged in the back of my throat. NO problems with speech. I don't appear to have any weakness as I am still carrying on my day to day activities (albeit with severe tiredness that is still there when I wake up in the morning after 12 hours sleep!!!) I can lift things, walk and ride my horse but it's painful, it hurts and the slightest activity leaves my muscles feeling sore. Then when I'm lying in bed at night the muscle twitches start and the cramps start. Also, I can't keep warm, my hands go white and I feel so sick once I get cold.

My Dr laughed out loud when I told him my fear that it was ALS and told me to put it right to the back of my mind. I said it was progressing as the twitches were more frequent and he said in ALS the twitches come much later after muscle wastage? IS this true? He also said that it wouldn't be ALS if the pain was so widespread eg in all four limbs, neck, lower back??? What does muscle wastage look like? I can feel my muscles and have good resistence (my poor husband I keep doing strength tests on him lol)

Have had a whole range of blood work done (including thyroid) and nothing is apparent. He has suggested Fibromyalgia/Chronic Fatigue Syndrome as I have good days and bad days. I can also feel like a internal buzzing in my limbs? What on earth is it and should my Dr refer me back to Neuro? He's not given me a concrete diagnosis and without answers my mind is racing to what I think it could be! I am 38, a mother of 3 and I want some answers as to what this could be, I am convinced it is ALS! and I'm scared :(





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