[EmilySH]

Hi all,

My name is Emily. Nice to know there is a forum of this kind to help all of us suffering. I have been reading several post on here and wanted to share my story as well. First, I commend all of you for pushing through your illnesses and trying to discover a new "normal". I am only 26 and have the rest of my life ahead of me so some feedback and support would be awesome. I def. have no friends my age that are dealing with this hardship. I hope to gain insight and become better educated through talking with you all!

My neurological symptoms started almost a year ago, and at first I only experienced burning feet at night that was more of an annoyance than anything. I was losing sleep a couple times a month, but my work schedule allows much flexibility so my way of life was not gravely impacted. However, the past two months have been a nightmare. On Jan. 25 I started again experiencing the burning feet but it did not go away, lingering all day and night for three days. On the third day of this "flare up" I laid down in the bed due to the impeding fatigue and a painful spasms or lightening shock ran through my right arm and my arms have not been the same since. They immediately felt odd and numb.

Since they have become weak and my hands very clumsy. I am dropping things and legs feel like jello at times. Symptoms vary from day to day but for the past eight weeks I have experienced a combo of lightheadedness, heavy limbs, legs have become weak with exertion, strong heartbeat, muscle fatigue,muscle twitches all over (randomly), some neck and facial muscle fatigue (especially after talking a lot). Within the past couple weeks my hands have started to burn as well.

I have been to my primary doctor 6 times. Tested for many things and ruled out a lot.. Had a brain MRI that was clear, so no MS. B12 okay (450), high alpha gobulins, cortisol spike (looking more into this in 24 hour urine analysis- JUST RECEIVED WORD THAT THIS TEST IS NORMAL), high Mch in total blood count. Other than that all is normal, no lyme (so I think, but I know this is controversial), no rhum art, lupus. I was put on Lyrica, low dose and slowly increased. Didn't see much of improvement for a while. Upped the dose, it helped the burning feet but I felt immense brain fog. I couldn't focus and was not myself. Lowered the dose as of now because I do not want to become immune and dependent on the med until I KNOW what is wrong! I am not one to be highly medicated or cover up symptoms without knowing the cause. I am being referred to a neurologist, but who knows when that appointment will come through. Hoping to get a call sometime this week. Any ideas, suggestions, thoughts, words of encouragement would be great appreciated

[Kitt]

Welcome EmilySH.

[Lara]

Hello Emily,

Welcome to the NeuroTalk Support Groups!

I'm very sorry that you're dealing with this type of pain at such a young age and I hope you can find information and support to help you.

I am curious if you were checked for Diabetes or if have any other health issues such as PCOS or if you are insulin resistant?

You could check out the

Peripheral Neuropathy Forum

At the top of that forum there are what we call the "Sticky" threads. They contain helpful resources and information.

PN Tips, Resources, Supplements & Other Treatments

Chronic Pain Forum

take care there.

[mrsD]

Well.... Emily, I don't think 450 is a good result for B12. The new low is 400pg/ml, and not the old lab ranges still being used.

You might find some improvement with methylcobalamin 5mg a day on an empty stomach, for 3 months... see how that goes.

I see Lara gave you our PN forum, so I hope to see you there.
There is a very long B12 thread in the stickies there with medical links provided.

[Darlene]

Emily,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see 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.

Darlene