SCARED OF MND/ ALS/ MS

[[Lu...]]

Okay so I posted a few weeks ago but just wanted to update symptoms and see if anyone else has ever had any of these particular symptoms or if I truly have to fear ALS. I am truly in a full health anxiety spiral but with good reason I am having some incredibly bizarre symptoms. I have withdrawn from Klonopin in the past and Attivan in the past and the withdrawals were health but almost 100% mental with maybe a couple uncomfortable physical symptoms but nothing to write home about. This time I am withdrawing cold turkey from a few weeks of daily Xanax (between 0.5 and .75 a day) maybe one or two of the days 1mlg. February 9th was my last dose and this time before I even started withdrawing (maybe day 10 of being on Xanax) I began having tongue twitching, almost like a worm was in my tongue. Which then progressed to my cheeks/ tongue/ eye brows. And then the intense joint/bone muscle pain began one I cold turkeyed. The most uncomfortable symptoms seem to have settled in my right arm and right leg. Incredibly dull ache that lasted about a week Now I’m having insane stiffness in my thumb muscles mostly in my right thumb and stiffness in forearms. Whole limb feels heavy and wrong. Fingers feel stiff and don’t seem to be working right almost fumbling things I reach for and motor function feels decreased. Also I’ve noticed it has been falling asleep a lot easier especially when sleeping. I am absolutely freaking out because it seems pretty identical to ALS onset and can’t stop reading MND forums and finding a lot of similarities to my symptoms. Would appreciate ANY input from anyone that has maybe had a similar manifestation of WD. On my previous post a knowledgeable member of this site explained to me what kindling is. Is that why this time is so different?? It makes me scared that I never had any of these symptoms with previous benzo withdrawals.  Thank you in advance to all of you who may reply. I am a business owner and father of a beautiful young daughter and husband to a beautiful amazing wife. So scared I will be leaving them if I have ALS or something. I have found this website a safe haven through this hellish experience. Prayers to all. ❤️❤️

[[Lu...]]

Also forgot to mention the twitching has been occurring throughout my whole body now. In all 4 limbs, in both thumbs. My back, my neck, my pecs and shoulders. 

[[ns...]]

37 minutes ago, [[L...] said:

Okay so I posted a few weeks ago but just wanted to update symptoms and see if anyone else has ever had any of these particular symptoms or if I truly have to fear ALS. I am truly in a full health anxiety spiral but with good reason I am having some incredibly bizarre symptoms. I have withdrawn from Klonopin in the past and Attivan in the past and the withdrawals were health but almost 100% mental with maybe a couple uncomfortable physical symptoms but nothing to write home about. This time I am withdrawing cold turkey from a few weeks of daily Xanax (between 0.5 and .75 a day) maybe one or two of the days 1mlg. February 9th was my last dose and this time before I even started withdrawing (maybe day 10 of being on Xanax) I began having tongue twitching, almost like a worm was in my tongue. Which then progressed to my cheeks/ tongue/ eye brows. And then the intense joint/bone muscle pain began one I cold turkeyed. The most uncomfortable symptoms seem to have settled in my right arm and right leg. Incredibly dull ache that lasted about a week Now I’m having insane stiffness in my thumb muscles mostly in my right thumb and stiffness in forearms. Whole limb feels heavy and wrong. Fingers feel stiff and don’t seem to be working right almost fumbling things I reach for and motor function feels decreased. Also I’ve noticed it has been falling asleep a lot easier especially when sleeping. I am absolutely freaking out because it seems pretty identical to ALS onset and can’t stop reading MND forums and finding a lot of similarities to my symptoms. Would appreciate ANY input from anyone that has maybe had a similar manifestation of WD. On my previous post a knowledgeable member of this site explained to me what kindling is. Is that why this time is so different?? It makes me scared that I never had any of these symptoms with previous benzo withdrawals.  Thank you in advance to all of you who may reply. I am a business owner and father of a beautiful young daughter and husband to a beautiful amazing wife. So scared I will be leaving them if I have ALS or something. I have found this website a safe haven through this hellish experience. Prayers to all. ❤️❤️

Lucas, hi, I'm sorry your having these symptoms. 

These sound very familiar and like withdrawal symptoms from a fast taper/ct. 

Did u have these symptoms prior to benzos, prior to ct?

I think if u ask yourself this you'll have your answer.

Have you ever heard of trey Jones anxiety on YouTube?

I watch him sometimes. He's recovered from health anxiety, gad, ptsd, depression and I think if you could watch him you might really benefit from his videos. 

Now the withdrawal is something else all together and I hope someone here will swing by and assist. Im

 Not the person to assist with tapering or cold turkey so I'm sure you'll hear from someone soon. 

I hope you'll give trey a look ok

Take care

M

Ns

[[Br...]]

Hello @[Lu...]  I'm so sorry you're suffering with these miserable symptoms.  Everything you described is common in withdrawal.  In my opinion it is very likely that you're having a more difficult time now than with previous times quitting benzos because of kindling.  I understand someone explained this to you but again, in layman's terms the theory of kindling is the nervous system has a memory of the past withdrawals. The memory of past withdrawals leaves an imprint on your nervous system and this memory imprint makes your central nervous system more sensitized to subsequent withdrawals.  Here's a link to a good information page on Kindling. Kindling doesn't mean you won't heal from your current withdrawal - it just means your symptoms may be a bit more challenging.

The health anxiety you're experiencing is a special kind of torment and it's a hallmark of benzo withdrawal along with anxiety of every kind.  I'm one of many here who have been through excruciating fear and anxiety along with the sense of doom and gloom that are also typical of benzo withdrawal - these combine to make us interpret every weird symptom as a sign of something catastrophic.  It's horrible to go through.  The health fears the healing brain produces are among the many lies benzos torture us with.  Here are a few links you might find helpful.

What is happening in your brain?

Benzo Lies that have been busted

Ashton Manual Ch. III Benzo Withdrawal Symptoms

Distraction and good self care will be your best friends while you heal from benzos.  Moderate exercise, relaxation/breathing exercises and pouring yourself into distracting activities will help shield you from the onslaught of negative messages your brain may be sending out as it heals.  Wishing you much healing.

[[Lu...]]

@[Br...]. @[ns...] thank you both for the incredibly kind and intelligent responses. I don’t know where I would be without this group of people on here, truly! I think I know somewhere deep in my brain it is most likely benzo related but my mind begins to play tricks on me and I’m not sure what to believe! Thoughts like “my arm has been feeling kind of week before this I think”  or “I did drop my sciccors at work last month before this all started” ( I run a barbershop) so I immediately start second guessing logic and my own memory and timeline of events. This is by far the hardest thing I’ve ever gone through in my life. I just find it very strange it has manifested in one arm/hand so predominantly. I haven’t been able to find many people on here who have had that which worrries me. You are absolutely right about distraction I have been truly trying my hardest to keep my mind busy, but with my right hand being my dominant it seems every time I lift it to even change the channel or roll my daughters toy car back to her it immediately brings me right back into the tornado. It’s incredibly exhausting. I have neuro appointment on Wednesday which will hopefully put my mind at ease with some of the more serious worries but I keep replaying how the appointment will go and keep imagining him saying “yep it’s als” which I know somewhere in my messed up head the chances of that are astronomically slim. Still I’m convinced. It’s messed up lol but thank you both for the input truly it means more than you know. You all have been a light through a very dark path and if I make it through this I will always be thankful for this group

[[ns...]]

16 minutes ago, [[L...] said:

@[Br...]. @[ns...] thank you both for the incredibly kind and intelligent responses. I don’t know where I would be without this group of people on here, truly! I think I know somewhere deep in my brain it is most likely benzo related but my mind begins to play tricks on me and I’m not sure what to believe! Thoughts like “my arm has been feeling kind of week before this I think”  or “I did drop my sciccors at work last month before this all started” ( I run a barbershop) so I immediately start second guessing logic and my own memory and timeline of events. This is by far the hardest thing I’ve ever gone through in my life. I just find it very strange it has manifested in one arm/hand so predominantly. I haven’t been able to find many people on here who have had that which worrries me. You are absolutely right about distraction I have been truly trying my hardest to keep my mind busy, but with my right hand being my dominant it seems every time I lift it to even change the channel or roll my daughters toy car back to her it immediately brings me right back into the tornado. It’s incredibly exhausting. I have neuro appointment on Wednesday which will hopefully put my mind at ease with some of the more serious worries but I keep replaying how the appointment will go and keep imagining him saying “yep it’s als” which I know somewhere in my messed up head the chances of that are astronomically slim. Still I’m convinced. It’s messed up lol but thank you both for the input truly it means more than you know. You all have been a light through a very dark path and if I make it through this I will always be thankful for this group

Lucas, I guess I should have mentioned that I have these symptoms as yours.  My arms feel like they're being squeezed, stinging, tingling feels like electricity running thru me. I guess with the squeezing muscles it squeezing my nerves causing a feeling of electrical neurological pain running down to my hands and fingers. This causes spasms in my upper arms, abdomen and legs.  Also in my neck. This didn't start until I tapered down pretty low in my dose of lorazepam so I know I had none of this prior to benzo or tapering. 

I have tremors in my abdomen that make it difficult to stand or walk but I push myself and do it anyway. 

We, I believe, are experiencing an imbalance of chemicals in our brain from withdrawal of these pills. 

I get thru it by changing my focus from my symptoms to something else, belly breathing and telling myself I'm safe, I'm ok, I'm uncomfortable but I'm ok. 

I do exposure therapy, I go shopping when I can and push myself no matter how difficult. 

I've had panic attacks in the store and gone into freeze and tunnel vision. That's when I breath, look around, tell myself I'm safe and so on. I have severe tinnitus so it makes it difficult to be around noise but I have learned to tune it out!

Alot if this is distraction but also teaching my brain new things. I get hundreds of symptoms I would say and they pile up! 

Lately I'm realizing I'm healing!

I can feel a difference and I have a more positive attitude, I feel light and happy, I'm laughing, smiling more, I'm eating alot! 😄 

I'm still going thru it but I know that this medication is slowly leaving my brain and body and I'm on my way to Restoration, thank God! 😊 

So I wanted to share this with you so you don't feel like the lone stranger here, we're all going thru this at some level but there is a light at the end if this tunnel!

Be well

Take care, your time is coming!

Ns

[[Th...]]

@[Lu...] as im typing this my calf muscles are twitching off the charts. My right calf has been locked up and hurting for 2 days. My left bicep is twitching and in pain. I also have tremor and internal vibration. Some days I feel like I can barely put a drink to my mouth or feel uncoordinated. As we talked in your other thread I too suffer from health anxiety. I still believe it’s benzo withdrawal and I think yours is too. I hope your dr appointment will give you some peace of mind. 

[[Ta...]]

I tried taking Xanax a couple of times (1 or 2 pills ONLY) and it sedated me beautifully, but after a while there was this weird electric zap or shock. I went back to my doctor and said "HELL NO!"

All of this is to say, Xanax is an especially dark and insidious little drug! I once walked into an electric fence while I was trying to feed a carrot to a horse! It's a strange feeling, and even stranger when you look down at your bosom and see little curls of smoke arising. And as strange as that was, it was nothing like getting zapped from Xanax.

I'm extremely sensitive to almost everything, but that's okay by me if it saved me from a full blown Xanax addiction. So, all of these symptoms you're having seem to make sense  considering what a treacherous little monster Xanax is. This is only my experience, but I feel a great empathy for what you are going thru, and maybe you, like me are just extraordinarily sensitive to this uniquely sinister little substance.

Hang in there, Buddy! Saying prayers for you and hoping for relief!

 

 

 

 

[[ns...]]

19 minutes ago, [[n...] said:

Lucas, I guess I should have mentioned that I have these symptoms as yours.  My arms feel like they're being squeezed, stinging, tingling feels like electricity running thru me. I guess with the squeezing muscles it squeezing my nerves causing a feeling of electrical neurological pain running down to my hands and fingers. This causes spasms in my upper arms, abdomen and legs.  Also in my neck. This didn't start until I tapered down pretty low in my dose of lorazepam so I know I had none of this prior to benzo or tapering. 

I have tremors in my abdomen that make it difficult to stand or walk but I push myself and do it anyway. 

We, I believe, are experiencing an imbalance of chemicals in our brain from withdrawal of these pills. 

I get thru it by changing my focus from my symptoms to something else, belly breathing and telling myself I'm safe, I'm ok, I'm uncomfortable but I'm ok. 

I do exposure therapy, I go shopping when I can and push myself no matter how difficult. 

I've had panic attacks in the store and gone into freeze and tunnel vision. That's when I breath, look around, tell myself I'm safe and so on. I have severe tinnitus so it makes it difficult to be around noise but I have learned to tune it out!

Alot if this is distraction but also teaching my brain new things. I get hundreds of symptoms I would say and they pile up! 

Lately I'm realizing I'm healing!

I can feel a difference and I have a more positive attitude, I feel light and happy, I'm laughing, smiling more, I'm eating alot! 😄 

I'm still going thru it but I know that this medication is slowly leaving my brain and body and I'm on my way to Restoration, thank God! 😊 

So I wanted to share this with you so you don't feel like the lone stranger here, we're all going thru this at some level but there is a light at the end if this tunnel!

Be well

Take care, your time is coming!

Ns

Hi again Lucas, I re read your post. Wanted to mention that I drop things also. 

My first signs of all if this was on my right side. My right hip and was numb 3 yrs ago after a forced fast taper and I'm still numb.

But I went back on lorazapam last April and began taper in August/September. 

I am numb from my upper waste down but it's dissipating. As I mentioned all of my symptoms are getting less intense but some still  come on pretty strong. 

I think our attitude plays a huge role in how we heal as well as our diet and weather or not we move enough or stay down. We need to be as active as possible even though it seems impossible sometimes. 

Just wanted to add these symptoms so u can see that withdrawal symptoms do for some feel like ms or als or some other neurological disease. 

Trust me I've thought many times that I had ms buy realized it was withdrawal. 

You will heal, it may or may not take time but you will get thru it!.

Always remember there are people here to talk to and you find many answers to questions you wont  find anywhere else I can assure you!

Take care Lucas,  I'll keep you in my prayers!

Ns

[[Lu...]]

@[ns...]thank you so so much for sharing you’re experience and helping to put my mind at ease. You are very brave and I am so proud of you for the progress you have made! I am hoping I start to feel the dissipation at some point soon. It seems at almost 4 weeks things are still ramping up. The dizziness has made work for very difficult and the muscle twitching has become almost constant and is effecting every muscle group 

[[Be...]]

On 07/03/2024 at 11:40, [[L...] said:

@[ns...]thank you so so much for sharing you’re experience and helping to put my mind at ease. You are very brave and I am so proud of you for the progress you have made! I am hoping I start to feel the dissipation at some point soon. It seems at almost 4 weeks things are still ramping up. The dizziness has made work for very difficult and the muscle twitching has become almost constant and is effecting every muscle group 

@[Lu...] Hi! I too have felt the exact same symptoms after being on a low dose of xanax for years. Have you gotten any relief mentally or physically since the original post? The symptoms seem to come one and not be there the next...it's strange

[[Br...]]

Hello @[Be...] - Welcome to BenzoBuddies! We're glad you found us!

Please let us know how we can help you.  Feel free to explore the site.  You'll find a lot of good information and support here.

Brighterday

[[Rh...]]

Hi, I wanted to comment really quickly on your post.  I too have developed intense health anxiety since coming off my antidepressant almost 9 months ago.  (I previously tapered off valium 4 years ago so I know the hells of that withdrawal as well.)

although my symptoms are different than yours, I too often worry that I have undiagnosed MS/ALS/Lyme or some other scary disease.   I think this intense anxiety is also a withdrawal symptom as I never had it so badly since coming off of everything.  These feelings will pass as we continue to heal.

If you feel worried and having things ruled out will help dissipate that constant worry, then see a doctor and do some tests.  I know I’ve had MRI’s, CT’s, ultrasounds, 2 sleep studies, and tons of labs all of which were normal, so I have to believe this is all WD.

I hope you can find some answers and get the relief in at least knowing this is all WD and you will heal with time! 

Edited April 3 by [Rh...]
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