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

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

Did anything happen to set this all off?
Like an accident or injury?
or just started happening out of the blue?

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

Yes : from head to toe: burning, fire like, tingling pins and needles, bee stings.
Stabbing, twitching. Allodyna
Sensory and motor

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.

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.

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

@tulip
The long diagnostic procedures, that some tests that are repeated over and the wait will drain anyone. I am trying to stay in the day but I know chronic pain and immobility without relief can just make coping and adjusting more difficult for the best of us. It is a frightening thing when your body does what it wants to do inspite of our best efforts. Have you been placed on any muscle relaxers? Have you been tested for connective tissue disorders and autoimmune diseases? Neuromuscular disease effects the EMG/NVC. Try to take some positive feelings from the fact that the test is normal.

A very good friend of mine has RSD and suffers horribly at times. I am no expert nor doctor, but her symptoms are similiar to yours. She was initially worked up for everything from MS to PN. She has good days and bad and recently went through a 3 month period where she was just about chair bound.

I am sorry you are struggling. Venting here can help a bit.

Thanks Daniella, my husband has gone to all of my appointments which has been very helpful. My last appointment were the nerve tests and I passed. So he is thinking that I am going to get better. I know my symptoms and I know this is just the beginning. I will talk to him more. He really is a great husband and father. It has been a huge transition these past few months. My parents will also come around too. I think they are in denial of my condition right now. Thanks again! Danielle

Just a quick question about the EMG's. How extensive was your testing? Mine was 2 1/2 hours just to do one leg. My husband saw another neuro doc for his arm and got a 20 min test. Technique varies.

Mine was 20 or 30 minutes long.

When my hands were so bad...when I was 5mos pregnant... I went to a physiatrist rehab MD on referral from the OB/GYN.

After examining me carefully and listening...she had the equipment right there on her table. She knew just where to place the electrode needles and it only took 3 sticks on each arm to confirm how badly my arms really were. That was a very fast EMG and I wasn't even prepared for it. She evaluated it right there. This was 30 yrs ago, and things may have changed.
I showed 80% loss of function in both arms and hands. And she gave me the option for steroid injections in the wrists and I had the right one done, so I could function, but was worried about it all for the baby and didn't do the left. The steroid helped the terrible pain I had while sleeping (like boiling oil going down my arms), and she had me do the wrist splints 24/7 and they helped too. About 90% resolved by the 3 day after delivery, which she said may happen.

I don't recall it being painful, just strange. And since my arms were so bad the needles were nothing really in comparison.

I think it probably varies depending on how thorough they need to be, etc and who does the test. For me I got to see the results right on the window of the machine with her. I got the feeling she was sure about me, just needed confirmation as to degree of the problem.

Mine does how carpel tunnel
In both hands. But that's it.

Yes I have been to rhumatology and endocrinology
Extensive testing done.
My recent test done by immunologist showed elevated Ige iga( not that much)
And igg

So the docs says there could be related to this or not. The specific autoimmune testing are normal.

I haven't had the expensive blood for neuropathy with Athena.
No insurance

I am taking cal mag and d3.
My blood has never been low or high on calcium.
Magnesi recently was normal.
D3 goes up and down.
My 25 Hr urine was low calcium but doc just said Dosent mean anything!!
Pth levels are normal and so is ionized calcium

I have started acupuncture. Second treatment tomorrow.
Some one suggested try pedialyte?

Neuro said if this is an ion channelopathy like Isaac syndrome then mag and cal Dosent help.
But I don't know...

I can't get comfortable. Nerves gone wild!!
T

My whole body is super stiff and trying to make any movements thru that causes more twitching and stuff.

Coping with this is hard. Especially thisnis since I was 19!
And now 32. Can't believe how time passed.
I take comfort in fact I can walk talk eat swallow smell
Touch and live my kids.

My parents have moved in and
My mom cooks and listens to my crying without any issues and prays for me All day. I pray her prayers get answered.
My husband is supportive but
It's still sad.

I did everything regardless of this until last year.
I cried I went to the docs and didn't use to tell any one much about this.
I volunteered at my kids school. I remember playing with the kids and getting stabbed and smiling thru it.

But it got the best of me last year. I think it brings us down more emotionally.
Yes it' hurts but my god the not knowing is hell

Plus I can deal with this. I even use to this okay whatever this is how my nerves are. I won't let it get to me.
But when it hits my throat and face and front chest and ribs just spirals Me down in depression and being so scared.



So that's that.
I try meds but thy all on low dose right now

Mrs. D, since you had neuropathy when you had your children, how did you manage children with this condition? I have a 5 and 8 year old and it scares me to death. Do you have any advice or experiences to share to help me. I have had symptoms for about 2 months now. Thanks a lot! -also on the topic of emg's, I also had a tuning fork test on both feet. It only took a few minutes.

The 3rd day after delivery, most of my severe carpal tunnel resolved. For a LONG time I wore the splints 24/7, then only at night or when gardening. I found some supports for weight lifters to hold the wrist firm when I did alot of digging with trowels or planting bulbs.

What happened to me after my son was born, also was that both of my knees swelled up horrifically and I could not carry my infant son up the stairs. So in the morning my hubby brought him down here and I had everything set up in our little study for him...and I never went back up there all day until hubby came home. My wrists were not nearly so bad as my knees.
The endo tested me for Cushing's and that was negative and he released me, and my internist gave me the "new Motrin" which had just come out. It was thought that my knees were a induced lupus...from the hydralazine I had to take for my blood pressure during the pregnancy. I had had a C section, and was very weak and tired too, after my son came. He was preemie and not too heavy until about 8mos when he hit the normal growth curves finally. By then my knees were better. I stopped the hydralazine after delivery--I couldn't take it anymore. (hydralazine headache also is horrible). I was put on the "new" Tenormin then and that worked well with no side effects.

My son was born with a severe vision defect and hated going in the car (he'd scream the whole time because he heard sounds and couldn't see) until I finally had glasses fitted for him at 8 mons with a specialist ophtamologist. So I only went out with him alone, to the pediatrican. Not much of a strain on the knees or wrists. I remember the first time I took him to the Meijer's here (a family run all in one shopping/grocery like a Super WalMart etc back then). He had just received his glasses and was so excited about everything. I let him choose a summer toy, in the toy aisle...and he picked a little red fire truck. He hugged that truck to his chest the whole trip, and people came up to us...ohhhhh, ahhhh how cute. That vision thing is a whole other story...and still moves me to tears! sniff sniff

But you know, I never lifted him much if I could help it. Not like I see other Moms do. I've seen friends lift 4 yrs olds out of the car if they fell asleep. Not me. I'd wake him up gently and let him get out himself. Even at 2yrs, I was having him do most of the getting around. Lifting only into high chair etc. If hubby were home, He'd lift. I only have the one child, and I managed. I was 34 back then.

Over the years my carpal tunnel has become better. The P5P I took for many years seemed to help it (activated B6). I still occasionally wear a splint to bed, but not every day or even many days a year. The thyroid hormone really helped both wrists, and the fluid ganglia I had on the tops of my wrists both went away, I can barely see where they used to be.
The splints really helped.

have you tried elevating your legs or even just you feet i.e. face down with your legs bent back or vice versa ?

Perhaps even an inversion table might be a good idea , just if anything to see how it influences things in the meantime.

What about using ice, does temperature help it ?

I can relate to some of what you say but its so hard to be sure just through words, the main thingright now is to try to find something that helps calm you down a bit or relax.

m

Throat grinding sounds to me like it would be something more related to the jaw ,like TMJ just an idea to consider.

Hope you feel better.

m

Hi
Yes exactly the face and throat is just like severe tmj. And throat clicking.
But that exactly same all over body. Spasms tightness and sensory stuff
So I use to go to doc t first and say my jaw hurts
My throat hurts my teeth hurt (no cavaties)
My back hurts and on and on. Until the doc and I realize this is same thing happening all over.
He called it fibromayalgia but the neurologist disagrees
Especially when I woke up a day after flu shot and it fired up my nerves like never before! Went to er three nights in the row and they send me back home.

I wonder how structural this can be. I do have
Mild to moderate disc bulging in neck but doc said no nerve trapped.
Reason I say structural is because my whole body is severe stiff like a stick.
Then any turn of neck just induces or worsens all involve symptoms . Even goes in legs.
Massage therapist said " well ofcourse all is connected"
and I am so stiff and site my whole back that even bending my neck ripples all
I bend my neck and like guitar strings pull in different spot on back inducing Twitcing and all way down my legs
So that's what's strange. Have had lumbar and thoracic MRI done years ago any it was normal.

At he same time million tiny spots will spasms on their own and twitch. This is where neuro says it's a nerve issue with signals going haywire for some reason

Simple things like washing a plate is a task as the action of arm Mobic that way my back stiffens an worsens the already tight. Like all
Muscles are on lockdown.

I took a rubberband last time to the neuro to explain how I feel. I stretched t out to the max and said this is how I feel and now try to move the band how hard it is. Don't know if that's good enough way but that's how I feel

Just took 30mg baclofen so hoping it kicks in.

Thanks to all that listen.
Tulips

Mrs D
 

What do you think about trigger point injections.
I was offered botox by one neuro and told by another to avoid it like a plague!

Thankyou

I dont really know enough botox but " neural therapy " in the tmj might be something worth looking into.

When your talking pain over the whole body , your really talking about something that sound more myofascial related to me , esp if its causing pulling on muscles etc.

Its hard to say whats causing what , as rule ( ive had range of things since 16 and im now 36 ) nerve pain ,as far as i know , doesnt usually cause tightness to happen in the muscles ( at least not the neuralgia sort ) so thats why im wondering if its more secondary .

Im not an expert though ( Mrs D would know a lot better than I ) but if I were you id try and rule out the possibility of things such as tmj by seeing if neural or even prolotherapist if the tmj joint is weak .

It might be you grind your teeth in your sleep or have strained the ligament there for all I know , but if you werent aware of it then you wouldnt know , as these things ( Proprioception ) is not something the average person can detect until it usually becomes a big problem and then triggers others .

Im not trying to scare you, just suggesting that things like tmj might have more brearing than you think given the skull / neck / spine are all connected.

Trigger point like neural is more of short term fix but at least it might give you an idea of whether a certain area like the jaw is being a catalyst in the sensations your experincing elsewhere.

m

Tulips, I am thinking of you tonight. Praying for you to have some relief. The rubberband analogy is so good and can totally picture how you feel.

Drwk,
Thankyou so much for all your kind words. Means a lot.
I will pray for you too.

Melon,
I will look into the neural treatment.
I am lookin into myofascial. Seems so fitting.
And I always wonder the severe tightness puts pressure compressing nerves.

Tomorrow I am going to acupuncture and will ask er too.

I went to pulmonilogist in 2007 and chest and back spasms so bad and tight and even now. But it causes hard to breathe. As it's like Chostochondritis.
So I had high resolution ct scan an that was normal.

Well I can't even cry too much as that over exaggerated movements mess me up even worse.

I remember one day riding back in the train from newyork to Connecticut. I put my head in my husbands shoulder. (1998)
I fell asleep. My neck was over stretched. Well when te train stopped and I woke up, my neck was a big mess. Pretty much I think that was something that triggered an event. I don't know.

I always clench my teeth and woke up many times with tight lock jaw.

Then as young days and even now just laughing too much I use tonhave to rub the area behind ears as they would hurt so bad from over laughing. So always had tense muscles.
Even a sneeze is enough once to throw my neck out.
Changing diapers and giving baths invade thrown my back out.

But let's see.
We are almost same age. Do you have any kids?
Hope you are having a good night.
Thanks for listening and helping
Tulips

I have not heard positive things about botox and would never do it myself for pain relief. There are too many posibilities of a reaction or getting worse.
For myself I am very sensitive so even like a massage would make me worse and stir up the nerves rather then settle them down. Everyone is different but I think in general one has to be very careful of what types of treatment they do. I think working with a pain management doctor who deals a lot with this type of condition is key.
My NC test I can't recall how long it was. I also had an SSEP with the NC/EMG. It was stated that when the NC/EMG does not show etc that SSEP is done. I had both legs done though I do know that even though at that time it was only in 1 leg but then it spread to the other leg as well which my neuro said is common. Like I said though I have RSD as well.

I don't know anything about trigger point injections. I think Botox is a last resort. There can be serious reactions to Botox.

I think you should try the magnesium lotion some of us are using...it is very very relaxing... At CVS.. My local CVS carries it in the store.

http://www.cvs.com/CVSApp/catalog/sh...new_crumb=true

Do not apply near the eyes. You can do your chest, arms and back of the neck. I think it is very nice, and I apply it before bed to relax me and it helps me sleep without waking up. If you apply over large areas, you can drop the magnesium oral version.

@ Tulip,
Could be a start. There are options for treatment, but its big bucks. Insurance issues are the dictators of our treatment it seems. I have more bloodwork ordered, some I think I've had already. Now I am getting all those rare antibody studies for Paraneoplastic Cerebellar Degeneration (which I know I don't have cause they said cancer and myeloma was ruled out) and are being tested because they are on the blood work list of things to do. If I had no insurance, they would not even be considered. It not that they want to make money, it just that it's a big teaching hospital and tests are a teaching tool.

I have a similar problem with cramping. It is much better than a year ago when I couldn't do much of anything without cramping up, no burning though. Now when I lift my right leg, I get the charley horse in my abdomen. My pain is intermitant electrical shocks down my right hip and leg, shocks and pain down the back of my legs. I have herniations in the neck and thorasic spine (waiting on the reports to be sent to me) which the neuro thinks has some mild pressure on my cord causing mild brisk reflexes. The twitching is all over from the shoulders down which my doc says is from spinal irritation of any kind, be testing, mechanical, whatever.

I too have a dreadful fear of having anything start up in my face and throat. I can understand how distressing this must be. I thought I saw something about a Bruxism neuropathy on the the list of what else can go wrong with PN, but I do not have the link saved. Really scarry. My prayers for you.