1. < Neuropathy

Lumbar puncture - my next step in my journey

Posted by mayoscout @mayoscout, Oct 3 3:43am

Has anyone had any success with lumbar punctures in regards to figuring out the cause of your neuropathy and other neurological symptoms?

I just had one yesterday and am laying in bed awaiting to heal and hopefully get results soon. The doc who did the procedure said they usually have results that day and will forward on to my neuro then it's up to them when they will call me.

My neurologist thought that was the next best step after four never studies over the past couple of years showing quick progression of my neuropathy and other symptoms. He sent me for a genetic test which showed one mutation in a gene related to neuropathy but he says that is not the cause so he ordered the lumbar puncture.

I am hoping that we can an answer. Not knowing the cause of my symptoms for the past handful of years is not helping me mentally and I already have severe mental health problems from other things.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Oct 10 2:26pm
In reply to @mayoscout "I've never tried hypnosis. I'm glad that worked for you. I went from doing years of..." + (show)
@mayoscout

I've never tried hypnosis. I'm glad that worked for you. I went from doing years of CBT to doing CBT once a week and EMDR one to two times a week to now I am at EMDR or CBT one time a week.

I came in contact with a guy on my team a few years ago that said "dude, do EMDR." His wife works in therapy and she made him do it right after combat. He said it was life changing so I decided to give it a go. He said it took him four years before he finally started feeling really good. I'm a couple of years in and I can already feel some things relax in my brain. Nightmares, flashbacks, etc still get pretty intense specifically about 6 months out of the year from combat trauma but I am hoping this year will be better. My wife says "you say that every year but that never happens" lol. The body keeps the score (great read) and it is extremely difficult to overcome the natural reactions my body switches into during those months.

The VA program is called Recreation and Creative Arts Therapy. Also, the Whole Health Department in my area works to pair up with local music shops to see if they will give free lessons to veterans. Unfortunately I am located to far away from those partnerships so I cannot join in on the fun.

Jump to this post

You might enjoy some of the videos from Music Therapy Retreats. There are a lot more on their You Tube Page. I sent your message of thanks to Mack.



What can you do when you get a flashback? Would listening to music that you love at that time help you? Do you have a pet that helps? Would it help to start writing things down in a journal? That helped me when I was overcoming my fears, and I saw a pattern in all of it from my past, and in writing it down it was recorded so my mind didn't need to keep reminding me. Do you draw pictures? That helped me. I didn't want to be afraid of my spine surgeon, so drew pictures of him so I could connect him to a creative part of my brain.

I believe that you have the power within you to get better. You will find a way to design your future.

REPLY
mayoscout | @mayoscout | Oct 11 5:00am

Thanks for the videos. I will watch them and check out their YT page too.

Most of the time for the flashbacks it takes my wife to pull me out because I am zoned out and not responding. We had offices beside each other at the same job for a long time and she could always sense when something was wrong in my office and she would come check and pull me out when it was happening there.

My therapist has been teaching me to go to my place in my head that I created when I am having one in hopes of that calming me down and bringing me back to this world. It has taken a lot of practice but I am able to do that some now and that has been the best thing outside of the wife that works.

I do journal now when I can. I can only write about a page worth in a composition notebook before my hand starts to cripple up and the pain gets pretty severe so I stop. So I do not write as much as I would like to. With that hands issue I do not draw, paint, or anything like that. It's not worth the issues I have with the hands after.

Appreciate your responses and all of the recommendations. The drawing thing is a cool idea and I am glad that it helped you. But my drawings may be pretty rough to look at with the images in my head so it may be best to not put that on paper lol.

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Oct 11 6:59pm
In reply to @mayoscout "Thanks for the videos. I will watch them and check out their YT page too. Most..." + (show)
@mayoscout

Thanks for the videos. I will watch them and check out their YT page too.

Most of the time for the flashbacks it takes my wife to pull me out because I am zoned out and not responding. We had offices beside each other at the same job for a long time and she could always sense when something was wrong in my office and she would come check and pull me out when it was happening there.

My therapist has been teaching me to go to my place in my head that I created when I am having one in hopes of that calming me down and bringing me back to this world. It has taken a lot of practice but I am able to do that some now and that has been the best thing outside of the wife that works.

I do journal now when I can. I can only write about a page worth in a composition notebook before my hand starts to cripple up and the pain gets pretty severe so I stop. So I do not write as much as I would like to. With that hands issue I do not draw, paint, or anything like that. It's not worth the issues I have with the hands after.

Appreciate your responses and all of the recommendations. The drawing thing is a cool idea and I am glad that it helped you. But my drawings may be pretty rough to look at with the images in my head so it may be best to not put that on paper lol.

Jump to this post

@mayoscout I'm glad you have a safe place in your mind. That worked for me too. Is it a place you can describe? My safe place was a geodesic dome frame out in a mountain meadow. Inside it had a chair carved from a tree stump and a wooden carving of a swimming whale. It actually is a real place that I have a picture of somewhere. I'd like to hear about your safe place.

I can guess that if you did drawings, they could be hard to look at, but that might be therapeutic to do that and they can be very simple or even cartoon like. You don't need to show anyone else, but your therapist might be interested. One idea I might suggest is that if you did a drawing of a stressful experience, you could do a second drawing, and give it a different ending that helps you feel better about the scene. That could help create connections that are more positive. What do you think?

I know for myself, I sometimes do a painting to help me feel better. I have a difficult family situation that makes me sad, so I decided to do a painting about love and it was a portrait of a mother and daughter in a touching moment who are friends of mine. This way, I can kind of re-invent my reality when I am feeling down with some effort over several days. If you start sketching and doodling, don't worry about trying to make "art"; just use it as a tool to get your feelings out similar to your journal writings.

I also just adopted a cat who is very loving and she likes to cuddle. At the shelter she jumped in my lap and curled up asking to come home with me so how could I resist? She's my 4th, and it helps to have a pet who wants to hang out with me all day long. The other 3 cats are not too thrilled yet, but they are starting to soften to the idea of a new friend.

There's also voice recognition software that could help with your journal writing. I have a program called Dragon Naturally Speaking. Honestly, I haven't tried it yet, but it would help because looking at the keyboard and typing isn't so good for my neck and shoulders. I do get tight neck muscles and do a lot of stretching. I do myofascial release that I learned from my PT. It's like massage, but you hold a stretch until the tissue releases. It does sometimes help some people improve their neuropathy if there is a physical issue of tightness that contributes to pain. It helps with fluid exchange within muscle tissues and can get stuck tissue moving again. I recommend this a lot on Connect. I was repeating myself so much that I started this discussion to collect the information.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Do you think this may help with your hand cramping and pain?

REPLY
View MoreView Less
Please sign in or register to post a reply.