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

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

@ 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.

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.