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

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.

@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.