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Old 11-26-2010, 03:40 AM   #1
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Do my symtpoms suggest ALS? I'm near my wits end!!!!

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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Old 11-26-2010, 12:07 PM   #2
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Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

Based on what I've read, your doctors comments are accurate. My experience with ALS is from my mom. Her twitches came long after symptoms showed up and only in the affected limb (initially not widespread, late in her disease it was widespread and constant plus she couldn't feel them just see them, like crawling bugs under her skin). She had extreme weight loss, fast (25lbs). She lost muscle weight in her arms. Muscle atrophy leaves the bones very exposed particularly in the hands. Her disease was not painful until late in the disease when her joints were bone on bone. We thought it was arthritis but she had no pain. Another early symptom was hyper reflexes. When the doctors saw this it led them to suspect ALS (when considered with the other symptoms). ALS symptoms are pretty specific. I would not worry about ALS.

I would go back to a neurologist. A new set of brain and spinal MRI's (with contrast) would be helpful. I have MS (dx at 36yrs with 2 kids). MS lesions can take awhile to show up on an MRI. Remember there are MANY different diagnoses. ALS is rare. Be your own advocate, you know something is wrong....However, beware of anxiety and web searching. I also have anxiety/panic attacks; it can do very crazy things to you. Good Luck.

 
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Old 11-29-2010, 08:08 AM   #3
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Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

Thank you for taking time to read my post and to comment on it.

I have had a particular bad time the past few days, our weather has turned very cold and my symptoms seems worse. I feel stiff, get extremely cold very easily, still got the cold/white hands and feet. Was eating a meal on Sunday eve and felt like I had incompletely swallowed it sat at the back of my throat until I could swallow some water down (again that caused me anxiety, which is a vicious circle!)

The twitching/buzzing/vibration is still there, someone suggested a magnesium+calcium supplement to try???

I also spoke openly with a friend of mine who is a Dr and he said in ALS the fasiculations definitely DO NOT appear months/years before any weakness shows up(I still don't have any weakness just aching when I do stuff) the fasiculations occur after the weakness and damage occur?

I know something is wrong but I'm not going to dwell on ALS, I'm going to focus on getting my Dr to actively find out the cause (blood testing for autoimmune stuff etc and a neuro referral) instead of keep passing off the symptoms.

 
Old 12-06-2010, 08:47 AM   #4
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Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

Quote:
Originally Posted by Belle72 View Post
Thank you for taking time to read my post and to comment on it.

I have had a particular bad time the past few days, our weather has turned very cold and my symptoms seems worse. I feel stiff, get extremely cold very easily, still got the cold/white hands and feet. Was eating a meal on Sunday eve and felt like I had incompletely swallowed it sat at the back of my throat until I could swallow some water down (again that caused me anxiety, which is a vicious circle!)

The twitching/buzzing/vibration is still there, someone suggested a magnesium+calcium supplement to try???

I also spoke openly with a friend of mine who is a Dr and he said in ALS the fasiculations definitely DO NOT appear months/years before any weakness shows up(I still don't have any weakness just aching when I do stuff) the fasiculations occur after the weakness and damage occur?

I know something is wrong but I'm not going to dwell on ALS, I'm going to focus on getting my Dr to actively find out the cause (blood testing for autoimmune stuff etc and a neuro referral) instead of keep passing off the symptoms.
Hi Belle....
I had a c-section 15 months ago. I started having irregular heart beats (PAC's & PVC's), plus an average pulse between 98 - 104, I had hot flashes, etc... All dr's told me was due to lack of sleep and my post pregnancy hormones trying to get back to normal. So I went with that and dealt with it.

A few months later, out of no where, my heart issues stopped, pulse went to pre-pregnancy normal range, no more hot flashes. By the way, my Thyroid tests were normal then as well. Shortly after that I started getting clod easily, having muscle aches, cramps, and occasionally spasms in my thighs and face. I started having joint pain, feeling tired, had mood swings, etc... I went in for more lab tests and found I am Hypothyroid.

There's a thing called post pregnancy hypothyroidism and subclinical hythyroidism. Many people have the symptoms of Hypo but are still within normal range of the labs test values though they feel the symptoms. The backs of my claves & thighs are killing me right now as if I worked out really hard or am covered in bruises in that area. And the face thing you spoke of about the odd sensations you get in your face, I also get on my forehead and top of scalp.

What spooks me is that I have 2 uncles and a cousin who have ALS -BUT my symptoms are more specific to Hypothyroidism. My last 2 labs confirmed it. Your thyroid hormone levels are more accurate between 10:00 AM & Noon. I'm in my mid 30's and a fairly new mom of one. I'm seeing an Endocrinologist soon and starting thyroid meds as well. It will take up to 6 weeks before my thyroid levels will change for better or worse and can take 2 to 6 months or more to find the correct dose for me. I'm starting low and working my way up. Anyway, if I have any change in these symptoms, I'll post it here to let you know.
Good luck & don't worry.... I know... easier said than done. I get freaked out easily too.

 
Old 12-08-2010, 09:46 AM   #5
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Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

I am glad that i read this.....I too have been having the same fears. My dad was just diagnosed with ALS and now I have the fear that I am going to have it as well. Last week, after reading up on ALS, I started feeling as I was having muscle twitches (that were not constant) and my tongue started feeling heavy (which I assume could be from all of the tension in my face). I automatically freaked out and chalked it up to ALS. I knew that it was most likely my anxiety playing with me. I have got to learn to relax more and put the ALS theory to rest and move on.

 
Old 12-08-2010, 11:30 AM   #6
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Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

Quote:
Originally Posted by bwalden30 View Post
I am glad that i read this.....I too have been having the same fears. My dad was just diagnosed with ALS and now I have the fear that I am going to have it as well. Last week, after reading up on ALS, I started feeling as I was having muscle twitches (that were not constant) and my tongue started feeling heavy (which I assume could be from all of the tension in my face). I automatically freaked out and chalked it up to ALS. I knew that it was most likely my anxiety playing with me. I have got to learn to relax more and put the ALS theory to rest and move on.
Have you ever tried CBT (cognitive behavioral therapy)?
First make sure they are a "certified" "cognitive behavioral therapist". I had one therapist that was pretty much a talk therapist who claimed to also do CBT and it was 100% crap. Anyway, since going to CBT I was able to get 95% of my anxiety out of my life, I don't feel it anymore and was able to get 100% of my panic attacks out of my life.

It's been a couple years now and the results are staying with me. One book to read is called "Neural Path Therapy". It tells you how you got to having anxiety in the first place, the actual "physical & chemical" aspect of it and how to undo it. It all comes down to "neural paths". The 2nd one is called "S.O.S. for the emotions", in CBT, my therapist gave it to me to go along with my therapy and it REALLY solved my issues with anxiety and everything. CBT + those 2 books.

Before this, I tried anti anxiety meds, antidepressants, talk therapy, hypnotherapy, avoiding my triggers, meditation, yoga, you name it. None of those worked. Since CBT, aside from not having anxiety (except for that small 5% of the time which I can manage and is few and far between) and not having panic at all, I have been so much better able to handle stress, people, relationships, MYSELF, etc., soooooooooooo much better and things don't stress me out like they used to.

CBT really teaches you how to let it all roll off you and not be bothered by big and small things. I paid for extra visits because I wanted to rush my therapy so I did 2x a week for 2 months. If you're a cash payer, you have the money up front for all your visits, you can negotiate a much smalled per-session fee from them. If you want to do extra visits and have insurance, you can use insurance for as many as they will pay for in a month and pay they rest yourself and still negotiate the cash price.

Even if someone is not having anxiety or panic, and are just having trouble with relationships, family, etc... or have anger, stress, or are hurt easily... Pretty much any emotional reaction you have to anything, you can change and be a better person and best of all FEEL better in any situation. I'm not a therapist, so I'm not trying to sell anyone on anything but CBT is a great thing to try if you have any issues. It's one of the only things that works for PTSD as well... I think the success rate from what I read on the cbt site was about 75% for that.

 
Old 12-08-2010, 11:46 AM   #7
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Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

Quote:
Originally Posted by t_411 View Post
Have you ever tried CBT (cognitive behavioral therapy)?
First make sure they are a "certified" "cognitive behavioral therapist". I had one therapist that was pretty much a talk therapist who claimed to also do CBT and it was 100% crap. Anyway, since going to CBT I was able to get 95% of my anxiety out of my life, I don't feel it anymore and was able to get 100% of my panic attacks out of my life.

It's been a couple years now and the results are staying with me. One book to read is called "Neural Path Therapy". It tells you how you got to having anxiety in the first place, the actual "physical & chemical" aspect of it and how to undo it. It all comes down to "neural paths". The 2nd one is called "S.O.S. for the emotions", in CBT, my therapist gave it to me to go along with my therapy and it REALLY solved my issues with anxiety and everything. CBT + those 2 books.

Before this, I tried anti anxiety meds, antidepressants, talk therapy, hypnotherapy, avoiding my triggers, meditation, yoga, you name it. None of those worked. Since CBT, aside from not having anxiety (except for that small 5% of the time which I can manage and is few and far between) and not having panic at all, I have been so much better able to handle stress, people, relationships, MYSELF, etc., soooooooooooo much better and things don't stress me out like they used to.

CBT really teaches you how to let it all roll off you and not be bothered by big and small things. I paid for extra visits because I wanted to rush my therapy so I did 2x a week for 2 months. If you're a cash payer, you have the money up front for all your visits, you can negotiate a much smalled per-session fee from them. If you want to do extra visits and have insurance, you can use insurance for as many as they will pay for in a month and pay they rest yourself and still negotiate the cash price.

Even if someone is not having anxiety or panic, and are just having trouble with relationships, family, etc... or have anger, stress, or are hurt easily... Pretty much any emotional reaction you have to anything, you can change and be a better person and best of all FEEL better in any situation. I'm not a therapist, so I'm not trying to sell anyone on anything but CBT is a great thing to try if you have any issues. It's one of the only things that works for PTSD as well... I think the success rate from what I read on the cbt site was about 75% for that.

t_411

Thanks for the reply....No, I have never tried CBT. I have always had anxiety problems, although don't really have panic attacks per se, but it has gotten much worse lately. But this is something that I will definitely look into. I don't want to live the rest of my life battling this.

 
Old 12-09-2010, 12:15 AM   #8
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Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

Quote:
Originally Posted by bwalden30 View Post
t_411

Thanks for the reply....No, I have never tried CBT. I have always had anxiety problems, although don't really have panic attacks per se, but it has gotten much worse lately. But this is something that I will definitely look into. I don't want to live the rest of my life battling this.
You're welcome.. :-)
I thought it was something I was going to have to live the rest of my life with too before CBT cause I tried so many things so I know what you go through with it. You can get your life back to what it was before anxiety... It just takes some time and effort to follow through with the CBT.
I made my user name here years ago back when I was having panic attacks and I hate it now. I wrote to admin just this week to see if I can change it to get the word panic out of it.

Take care.....

 
Old 12-11-2010, 09:04 PM   #9
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Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

It does not sound like ALS to me. I just had muscle weakness that would come with more use of the muscle. First in my hand (could not press finger nail clippers) , then ,my legs. I was diagnosed with ALS by a nuerologist doing an EMG test. I got muscle twitching in my legs and arms after the first sign of hand weakness. Muscle cramping happens sometimes. I drink a lot of water, it seems to reduce cramping. I have no pain. Other ALS people have their troat and neck muscles get weak first.

There are many other neromuscular problems, but you don't sound like ALS to me.

 
Old 01-07-2011, 08:11 AM   #10
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happilymarried HB User
Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

hi, I thought I was going to lose my mind with fear. I have come to the conclusion that this is a new thing doctors do not know. Maybe the new cell phones are causing something? my brother also has the leg vibrations. mine began with a cell phone vibrating on my chest, then in my pocket. I did not have a cell on me! then the fears began. I would wake up at night and have cramps and feel my muscles doing something odd. i have this site that eliminated the fears of als! I wish all of us could know about it. read all the parts of of for comfort. I am now on buspirone and ativan to sleep and now that i am sleeping 7 hours, i feel better. almost all the symptoms are gone. I feel them when i let my mind start obsessing again. I am almost convinced it is physical reaction due to the stress. here is the site. I know it will help you cuz it convinced me i do not have ALS.

Muscle Twitching: Is it ALS or Anxiety or BFS? Best Information for Terrified People


More: Als Muscle Twitching Twitching Muscles Reassurance Muscle Soreness

< edited >

Last edited by hb-mod; 01-11-2011 at 06:09 AM. Reason: Please do not post unapproved websites, per Posting Policy. Thanks!

 
Old 01-12-2011, 08:54 AM   #11
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Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

I have cfs. I would get muscle twitches at night when I would lay in bed. I started using a sinus flush 2 hours before I went to bed and a nasal strip. I still get muscle twitches but they slowly have subside. Magnesium has helped me with my cfs. I take 500mg daily. I believe 420mg is the recommended daily dose for a man. I'm not sure what it is for a woman. The problem is this may cause diherea. I also Bath in Epsom salt every day and soak my feet in it at night. Bathing helps with the morning fatigue.

 
Old 01-14-2011, 06:27 PM   #12
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Re: Do my symtpoms suggest ALS? I'm near my wits end!!!!

even though what u r describing is not typical for als...it seems like something that should be taken seriously and not ignored by ur dr. i think u need to find a dr. that is willing to get to the bottom of ur symptoms. so u can have some peace of mind. good luck and God bless!

 
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