advertisement
Reply
 
Thread Tools Display Modes
Old 07-03-2011, 08:21 PM #1
Tulips Tulips is offline
Member
 
Join Date: Oct 2010
Posts: 148
10 yr Member
Tulips Tulips is offline
Member
 
Join Date: Oct 2010
Posts: 148
10 yr Member
Default Feel so bad and no answers

Hi

It's me again! I am so upset and confused.
My symptoms don't make any sense. Yes they fit neuropathy but 8 Emg/ncv clean. Skin biopsy clean. Muscle biopsy clean.

What baffles me is how I have this all over. I understand the tingling sharp stabbing pins and needles.

I mean the cramping/ spasms (tight pulling)
My muscles from head to toe face to feet are in constant state of tightness. It dose t feel like a regular tight. It's a pulsating pull pull pull.
Similar to what tmj or teigeminal neuralgia patients describe.
In this tightness I get constant barrages of smll twinge cramps all over and in multiple places at the same time.
Literally is so painfull as if the muscle is pulling of the bone.
It squeezes super tight and spasms tigt let's go and then on.
Or like in face tight all day long!!!
I carried bags of grocery and when I put them down my finger and arm goes nuts twitching as I made it work thru the tightness

As I walk and arms fling back and forth makes the tightness pull worse.
Same in legs and face. More I talk worse it gets.

So in neuropathy if my nerves done to show signs of damage the is it neuropathy after 13 yrs. No loss of sensation.

Doctor said possible peripheral nerve hyperexcitability syndrom
But Emg is clean.

I know it's my nerve as I can feel the nerve activity and that causes this

Is it all muscle putting pressure on the nerves and on turn causing all neuropathy sx and twitching and stiffness.

Been take cal and mag and Epsom salt baths daily.

I have researched and seen people with similar neuropathy but not this severe muscle spasms and tightness all over.
I have seen people say it's in their face not all body.
I go to open the fridge and breast muscle almost crps! It's little movement too

I don't know what's wrong with my body. I am so depressed with this.
And feel so alone.
My throat gets so tight that when I swallow the front bones click so hard.
It's like all muscle are being rung!
When I cry or anxious the tight pulses get worse.

I don't get this.
Neuromuscular disease I don't know

I have seen people with stiff person syndrome describe like this and in face but I have had five times anti gads checks and Emg is so quite!!



I dont know any more
Tulips is offline   Reply With QuoteReply With Quote

advertisement
Old 07-03-2011, 08:41 PM #2
Tulips Tulips is offline
Member
 
Join Date: Oct 2010
Posts: 148
10 yr Member
Tulips Tulips is offline
Member
 
Join Date: Oct 2010
Posts: 148
10 yr Member
Default

One more thing. When I am standing up and arms down it gets so tight like when the blood pressure cuff is on the arm. That's how the whole body feels.
And it will feel like blood cut off and rush into fingers.

So his in back and front and stomach too.
Spasms sstarts in arm goes into breast and chest.
But there is no end to the nerve activity motor wise all day!

Last year I had so much constang pulling in face and neck that suddenly my breast muscle went into Charlie horse cramp.
Very scary!

All this activity I have no control it has mind of its own

Is this tetany?? Maybe.
I don't have it like dystonia thankgod
Tulips is offline   Reply With QuoteReply With Quote
Old 07-03-2011, 09:06 PM #3
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Default

Did anything happen to set this all off?
Like an accident or injury?
or just started happening out of the blue?
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 07-03-2011, 09:31 PM #4
Tulips Tulips is offline
Member
 
Join Date: Oct 2010
Posts: 148
10 yr Member
Tulips Tulips is offline
Member
 
Join Date: Oct 2010
Posts: 148
10 yr Member
Default

Well it started in 98 innmy neck then throat and then in 2003 went crazy after flu shot. And agin last year it got bad after I started working out a lot.

Like right now my entire body is spasming. Not twitching but tight cramp spasms
Tulips is offline   Reply With QuoteReply With Quote
Old 07-03-2011, 10:33 PM #5
drwk drwk is offline
Junior Member
 
Join Date: Jul 2011
Posts: 59
10 yr Member
drwk drwk is offline
Junior Member
 
Join Date: Jul 2011
Posts: 59
10 yr Member
Default

Quote:
Originally Posted by Tulips View Post
Well it started in 98 innmy neck then throat and then in 2003 went crazy after flu shot. And agin last year it got bad after I started working out a lot.

Like right now my entire body is spasming. Not twitching but tight cramp spasms
Have you experienced any of the burning or tingling sensations? This has to be very frustrating for you. Danielle
drwk is offline   Reply With QuoteReply With Quote
Old 07-03-2011, 11:40 PM #6
Tulips Tulips is offline
Member
 
Join Date: Oct 2010
Posts: 148
10 yr Member
Tulips Tulips is offline
Member
 
Join Date: Oct 2010
Posts: 148
10 yr Member
Default

Yes : from head to toe: burning, fire like, tingling pins and needles, bee stings.
Stabbing, twitching. Allodyna
Sensory and motor
Tulips is offline   Reply With QuoteReply With Quote
Old 07-04-2011, 12:50 AM #7
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
Default

I had severe tightness in my calves where I felt I could not propel my legs because of it. I don't know if that makes sense? I still do get tight feelings and flares of that. The pain doctor I saw said that it was all from the PN or RSD for me and that when finding the right treatment for this should feel better. I was rx klonopin by my neuro to see if it helps that but I don't think it does. I also take magnesium.
I think some important is to keep moving the limb. Now of course it is so hard and is like a catch 22 but otherwise I get more stiff and I feel maybe the circulation is not good.
Are you under the care of a pain doctor?
I understand the feeling of unknown and being scared. Plus feeling alone. These are 3 words that describe me. The why of what is happening to my body with the extensive testing I have is still unknown after 4 plus years. I am working on staying in the day though and focusing on each one and the best I can to get through. It is easier said then done because I am extremly anxious person. Have you thought of seeing someone for the mental impact this has? If not I would encourage it too. It is not going to take away the condition but can help in coping with it. If you want an email buddy I am here too. Hang in there.
daniella is offline   Reply With QuoteReply With Quote
Old 07-04-2011, 07:29 AM #8
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Are you using a magnesium supplement? I seem to recall suggesting this to you before.

Do you know what your Vit D levels are?

An imbalance in magnesium to calcium can lead to muscle contractions. Also low potassium may do this too.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 07-04-2011, 07:40 AM #9
drwk drwk is offline
Junior Member
 
Join Date: Jul 2011
Posts: 59
10 yr Member
drwk drwk is offline
Junior Member
 
Join Date: Jul 2011
Posts: 59
10 yr Member
Default

Quote:
Originally Posted by daniella View Post
I had severe tightness in my calves where I felt I could not propel my legs because of it. I don't know if that makes sense? I still do get tight feelings and flares of that. The pain doctor I saw said that it was all from the PN or RSD for me and that when finding the right treatment for this should feel better. I was rx klonopin by my neuro to see if it helps that but I don't think it does. I also take magnesium.
I think some important is to keep moving the limb. Now of course it is so hard and is like a catch 22 but otherwise I get more stiff and I feel maybe the circulation is not good.
Are you under the care of a pain doctor?
I understand the feeling of unknown and being scared. Plus feeling alone. These are 3 words that describe me. The why of what is happening to my body with the extensive testing I have is still unknown after 4 plus years. I am working on staying in the day though and focusing on each one and the best I can to get through. It is easier said then done because I am extremly anxious person. Have you thought of seeing someone for the mental impact this has? If not I would encourage it too. It is not going to take away the condition but can help in coping with it. If you want an email buddy I am here too. Hang in there.
I can totally relate to both of your feelings of being alone, unknown, and scared Danielle and Tulip. My family seems to be in denial that this is happening to me. I am not my normal happy self anymore. I sit and worry about my future and how it is going to affect my family and kids. I don't have any answers like you guys and I feel like my emotions are all over the place. I don't like thinking of my family having to help take care of me. How have you guys handled these types of concerns? I am so frustrated and sad. You guys aren't alone.by the way, Daniela, I love your name. Danielle
drwk is offline   Reply With QuoteReply With Quote
Old 07-04-2011, 08:07 AM #10
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
Default

Quote:
Originally Posted by drwk View Post
I can totally relate to both of your feelings of being alone, unknown, and scared Danielle and Tulip. My family seems to be in denial that this is happening to me. I am not my normal happy self anymore. I sit and worry about my future and how it is going to affect my family and kids. I don't have any answers like you guys and I feel like my emotions are all over the place. I don't like thinking of my family having to help take care of me. How have you guys handled these types of concerns? I am so frustrated and sad. You guys aren't alone.by the way, Daniela, I love your name. Danielle
I am sorry you are struggling too. Can you see a therapist and also do family therapy together? Or maybe a support group? Can your close family member read about your condition or go with you to a doctors apt? I think that has helped my mom.
Over the years how I cope along with how my family does has changed. It is a learning process of what works and does not. I think both the person who has the health problem and the loved one need to communicate on how they feel. Also to find a new way of doing things. I live alone but do ask for help when I need it. In life most people have times where they do. You never know what will change for the better where you won't need as much help in the future.
Also finding things you can do together that is not focused on the condition. My mom and I will play a board game or watch a comedy show. It is not a huge thing but any lift in spirits on both sides can help the battle.
Hang in there
daniella is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Was it really PCS? Keep looking for answers!!! jmoran Traumatic Brain Injury and Post Concussion Syndrome 3 09-22-2010 10:05 AM
Someone Please have some answers? mamaof6 Epilepsy 9 10-02-2008 06:55 PM
To Feel or Not to Feel-That is the Question! Friend2U Multiple Sclerosis 26 02-19-2008 05:25 PM
we need ANSWERS !!!!!!!!! happy face Spinal Disorders & Back Pain 3 09-18-2007 12:16 AM
New here - looking for answers... AnnCA New Member Introductions 5 02-15-2007 10:10 PM


All times are GMT -5. The time now is 04:44 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.