First, I am so happy to have found this forum of other people that are suffering with this horrible affliction called PN.

On January 2, 1994 on a flight home to southern California, my legs felt very cold. I remember going home and running them under warm water, then driving to the beach to put them in warm sand. The pain did not abate, so I was referred to neurology. The first neurologist said that I was stressed, and that he would "not subject his own son to the invasive tests that would be required". I sought a second opinion, and this doctor believed me. He drew seemingly half the blood out of my body and did a spinal tap. I remember the nurse coming in and I was crying. She asked if I was afraid of the spinal tap. I told her I was not, but was crying out of fear of what the spinal tap might find. What it did find was elevated spinal fluid protein and one oligoclonal band (which I don't know to this day is of any significance). I have since been confirmed with SFN via punch biopsy.

Eight months after onset, I enrolled in an elite business school and somehow made it through. But it took its toll. Few friendships and erratic behavior - gambling, excessive drinking, etc. After graduation, the girl I thought I would marry left me one day because of the way I was treating her and acting. I was 24 when I was diagnosed - a kid still in some respects. And I didn't know how to accept or understand my new reality or what was happening to my body. Suicidal thoughts were a daily part of my life. I remember going to a gun store and holding a 357 Magnum in my hand and considering buying it to end my mental and physical pain.

Since then, I pulled myself together and married a wonderful woman who loves me and supports me unconditionally. We have three beautiful teenage sons. But three weeks after I got the second Pfizer dose early in 2021, my legs starting burning and fasciculating unlike ever before. And it has continued essentially unabated for 11 months now. I cannot be certain, of course, that it was the vaccine, but I believe that it was. And FYI, I am not an anti-vaxxer. My entire family is vaccinated. I'm seeking the truth.

Too make matters worse, recently my 17-year-old son got the same fasciculations that were the very first symptom I noticed even before the burning started on that flight. He has headaches, GI problems, and his leg feel asleep recently for no reason. For a week I just couldn't stop crying. One day during lunch I got in the back seat of my car and just wailed for him to not have this disease - this thief that robs people of careers, a carefree life, relationships, dreams and more. I can somehow get through this, but if my son has it too, I'm just not sure how I will make it. As it stands, my pain has flared up of late worse that ever before. I'm just not sure how I can keep working and be productive given the pain that I am in. It is mentally exhausting and the trauma from long ago never goes away. It lies there just below the surface waiting for something like I am going through now so that it can resurface again. It's so visceral that sometimes I feel like I'm back there again.

I am trying my best to keep a positive attitude, but I'll be honest: there is a part of me that is outraged that the first-line medication (i.e. gabapentin) is the same medication being prescribed since 1993, nearly 30 years ago. Pardon my French, but how the hell can that be??? This group of people of which we are a part are suffering immensely in silence, and there are so very many of us, with so little funding on a relative basis going to research. I personally find that offensive and outrageous. They created a COVID vaccine in 9 months, yet we don't have a single new drug to give us hope, to hang our hat on, in 30 years? Honestly, what advances can be pointed to that would give me reasonable reason to have hope?

I very much appreciate you reading my (long) story and I sincerely wish each of you my best on your journey.

JayB