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lynn0929 01-22-2016 09:35 AM
new member needing some support and help
 
The last 5 weeks have been an emotional roller coaster. I changed jobs about 2 months and what was supposed to be an easier job ended up being long hours of nonstop being on my feet with no breaks and left me feeling totally exhausted. Exhaustion was my first symptom, progressing to tinnitus and an icy hot feeling. Then I Started with lower right sided back pain and then odd numbness/tingling in extremities which has evolved into feeling like insets crawling in my legs and at times it felt like a cell phone was taped to the side of my foot constantly vibrating. Symptoms got gradually worse for a few days to the point that I did not know if I went to bed at night if I would be able to walk when I got up in the morning. I have followed up with my GP and have had MRI's, EMG's and bloodwork which has all been relatively normal. They keep telling just normal degenerative disc disease. OVer the last few weeks things have started to improve slightly but Needless to say, this has created some anxiety so went to talk to a therapist who recommended some neurofeedback. I went through one session and my symptoms have returned as well as compounding the anxiety. I finally was able to get in to see a neurologist this past week, he is considering the possiblility of a transverse myelitis and running more labs. Is anyone going through anything similar? Right now I feel very alone and am so angry with myself for even exploring neurofeedback. Any support or feedback would be so greatly appreciated. Thanks so much.

zkrp01 01-22-2016 12:39 PM
My wife
 
Quote:
Originally Posted by lynn0929 (Post 1194910)
The last 5 weeks have been an emotional roller coaster. I changed jobs about 2 months and what was supposed to be an easier job ended up being long hours of nonstop being on my feet with no breaks and left me feeling totally exhausted. Exhaustion was my first symptom, progressing to tinnitus and an icy hot feeling. Then I Started with lower right sided back pain and then odd numbness/tingling in extremities which has evolved into feeling like insets crawling in my legs and at times it felt like a cell phone was taped to the side of my foot constantly vibrating. Symptoms got gradually worse for a few days to the point that I did not know if I went to bed at night if I would be able to walk when I got up in the morning. I have followed up with my GP and have had MRI's, EMG's and bloodwork which has all been relatively normal. They keep telling just normal degenerative disc disease. OVer the last few weeks things have started to improve slightly but Needless to say, this has created some anxiety so went to talk to a therapist who recommended some neurofeedback. I went through one session and my symptoms have returned as well as compounding the anxiety. I finally was able to get in to see a neurologist this past week, he is considering the possiblility of a transverse myelitis and running more labs. Is anyone going through anything similar? Right now I feel very alone and am so angry with myself for even exploring neurofeedback. Any support or feedback would be so greatly appreciated. Thanks so much.
had L5 and L6 fused together and has lasted 15 yrs. But now the vertebrae above those is needing attention and the same Dr. said that now they have a putty that they shoot in and it sets up like plaster. I wonder, did the EMG rule out Periferal Neuropathy? Good Luck, Ken in Texas.

lynn0929 01-22-2016 03:17 PM
Quote:
Originally Posted by zkrp01 (Post 1194960)
had L5 and L6 fused together and has lasted 15 yrs. But now the vertebrae above those is needing attention and the same Dr. said that now they have a putty that they shoot in and it sets up like plaster. I wonder, did the EMG rule out Periferal Neuropathy? Good Luck, Ken in Texas.
Thank you for getting back to me. My emg to the left leg showed a possible radiculopathy at L5-S1. But GP and my neruo are all blowing it off saying I just have degenerative disc disease. In the meantime, new symptoms are showing up. I now can can not fall asleep at all. Every time I get close to falling asleep, either my arm, leg or whole body will jump. This isn't just occasionally, this is now happening every single time I try and fall asleep. Just got up from trying to take a nap and can't take it anymore. Heading to the ER.

zkrp01 01-23-2016 09:23 AM
my sleep story
 
Quote:
Originally Posted by lynn0929 (Post 1194996)
Thank you for getting back to me. My emg to the left leg showed a possible radiculopathy at L5-S1. But GP and my neruo are all blowing it off saying I just have degenerative disc disease. In the meantime, new symptoms are showing up. I now can can not fall asleep at all. Every time I get close to falling asleep, either my arm, leg or whole body will jump. This isn't just occasionally, this is now happening every single time I try and fall asleep. Just got up from trying to take a nap and can't take it anymore. Heading to the ER.
I could not sleep due to pain,your Dr. needs to know you are not sleeping. My Dr. RX'd Ambien and it was a good friend for over 2 yrs. There is a consensus here that sleep is necessary for healing and you need to get at least 5 hrs whether interrupted or not. I had the jumping also but pain was what kept the eyelids open. Ambien hit me pretty hard, be ready for bed if you take it. Don't take it and then start a shower. Good Luck, Ken in Texas.

lynn0929 01-23-2016 08:53 PM
Quote:
Originally Posted by zkrp01 (Post 1195099)
I could not sleep due to pain,your Dr. needs to know you are not sleeping. My Dr. RX'd Ambien and it was a good friend for over 2 yrs. There is a consensus here that sleep is necessary for healing and you need to get at least 5 hrs whether interrupted or not. I had the jumping also but pain was what kept the eyelids open. Ambien hit me pretty hard, be ready for bed if you take it. Don't take it and then start a shower. Good Luck, Ken in Texas.
My trip to the ER paid off. The ER doc, was so concerned over my condition that he called the attending Neuro that was on staff who came to the ER to see me. He gave me a prescription for Clonazepam as well as gabapentin to get some relief and to be taken at bedtime to help with the "sleep jerks" as well as the peripheral neuropathy. Finally I was able to get some sleep last night for the first time in 3 days. He also wants me to call the office on Monday morning and discuss having a spinal tap done later this week but wants to wait till additional lab results come back. I just wish I had some answers to what is going on. It is so frustrating. I have lost my job and struggling through the whole unemployment issues as well. Not a good way to start the new year. Thank you for getting back to me.

Lara 01-23-2016 11:41 PM
Hi Lynn,

Welcome to NeuroTalk.

I'm glad you went to the ER and were able to finally get some sleep.
I wanted to just let you know that there are a few older posts/threads regarding transverse myelitis in the

Spinal Disorders & Back Pain Forum

I only looked there quickly just now, though you could try a full forum search for any posts that may be elsewhere.

Forum Search Feature

Same with "neurofeedback". There are posts on a number of the forums here talking about the pros and cons.
Just my feeling about it, but it might be best not to think about something like that until you know exactly what condition you have.

take care of yourself. I hope you're able to get some answers when you have more test results.

Darlene 01-24-2016 12:10 AM
Nice to meet you!!
 


:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

lynn0929 01-24-2016 10:12 AM
Lara,

Thank you for the links. I will definitely check them out. Unfortunately, I made the mistake of having only 1 session of neurofeedback and the side effects have been horrible. My therapist thought that it would help with the health anxiety that I was having due to what ever is going on. It is after the 1st session when the so called "sleep jerks" started. Instead of feeling relaxed, I felt very overstimulated. Prior to this I was handling the symptoms while wading through the murky waters of being diagnosed. At least now thanks to the clonazepam I am getting some sleep. Talked to my therapist and said she has never had anyone react like this before. All I know is that I will never do this again. I so wish I had found you guys before I had the 1 session.

lynn0929 01-24-2016 10:13 AM
Darlene,

Thank you so much for the welcome and the prayers. I so greatly appreciate it. You guys have already been so supportive and I can't thank you enough.

Moonspell67 01-26-2016 03:12 PM
Hi, I am by no means a doctor, so my advice to you is simply based on my own experience. I have a genetic nerve disease (ataxia). I never go to doctors anymore. I go to Naturopaths, holistic healers and a good chiropractor (you cannot fully heal unless your spine is aligned and healthy). I have changed my diet. I focus on healthy, natural foods. I try to stay in physical shape (this is a challenge; sometimes I just do what I can (30min on treadmill)). I no longer eat processed "food". I am finding relief from some of my symptoms- but the main thing from the benefits of eating good is that I have slowed my disease.

Quote:
Originally Posted by lynn0929 (Post 1194910)
The last 5 weeks have been an emotional roller

coaster. I changed jobs about 2 months and what was supposed to be an easier job ended up being long hours of nonstop being on my feet with no breaks and left me feeling totally exhausted. Exhaustion was my first symptom, progressing to tinnitus and an icy hot feeling. Then I Started with lower right sided back pain and then odd numbness/tingling in extremities which has evolved into feeling like insets crawling in my legs and at times it felt like a cell phone was taped to the side of my foot constantly vibrating. Symptoms got gradually worse for a few days to the point that I did not know if I went to bed at night if I would be able to walk when I got up in the morning. I have followed up with my GP and have had MRI's, EMG's and bloodwork which has all been relatively normal. They keep telling just normal degenerative disc disease. OVer the last few weeks things have started to improve slightly but Needless to say, this has created some anxiety so went to talk to a therapist who recommended some neurofeedback. I went through one session and my symptoms have returned as well as compounding the anxiety. I finally was able to get in to see a neurologist this past week, he is considering the possiblility of a transverse myelitis and running more labs. Is anyone going through anything similar? Right now I feel very alone and am so angry with myself for even exploring neurofeedback. Any support or feedback would be so greatly appreciated. Thanks so much.


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