[nochance]

My last post had a lot of details. I can't link it due to post count. 42 year old Male (Now) If this post is too long for you to read, please just read the last two paragraphs.

6 Months later, I have rapidly worsened.

Symptoms are now bilateral, moving from my left side Face, Arm, Leg, Groin to my right cheek (Severe) and my right leg and arm (Minor). Terrible Dysesthesia at Night and sometimes even in the day. Pain in Sciatic Nerve down to feet. MRI's have been read by Neuroradiologist (SP?), Neurosurgeon and my Neurologist. Surgery has been ruled out. Positive ID for SFN on lower calf from Skin Biopsy. Neuro feels it's NLD SFN due to the path of progression.

In the last 2 months, I've had multiple cases of barely staying conscience when going from a crouched position to full standing or when bending at the waist and swinging back to a standing position. I've had spells of this most my life. I saw doctors when I was younger and it was attributed to growing pains. It's put me in the ER once 8 years ago and it was ruled anxiety. Oddly enough, it was just after I woke up. Looking back, I feel I got out of bed too fast and had this same blood rush spell. Even then, the light headedness has been mild compared to how bad it is now. I have to make sure to rise very slowly or I start to black out.

In the last 1 month, I've started having severe stomach bloating when eating very little. I've had terrible heart burn and lower abdomen bloating. I also have constipation when eating solid food. I've dealt with a Hiatal hernia and GERD for the last 30 years. I know what these type of symptoms feel like. However, I am already taking a 2 medicine combination that correct this and I've read was also suggested for Autonomic Neuropathy impact on the abdominal area and this is still getting worse.

All my life, I've had a tendency to not sweat. It's caused a few overheating problems when I was younger and wasn't smart enough to come inside and cool off when outside in the heat. As an adult, I've just managed it. I never gave it much thought until now.

I'm married to an RN and I've very aware how easy it is to see symptoms in everything, but I also know my body and this is not going well. I've had several very extensive Blood work ups, 2 Brain MRI's, 1 Lower Spinal MRI, an EMG, Nerve Conduction Study (all Normal) and a SFN bioposy. The only thing to come back positive for Nerve Issues was the biopsy on my calf. Density slightly decreased. Morphology Normal and Red Stains Normal. Neuro pointed out significant thinning of skin in calf biopsy.

My Neuro wants to do a Lumbar Puncture to test for Viral, Bacterial and to absolutely rule out MS. I'm not sure if this is the right direction. Looking back, I'm really starting to feel like I've been living with elements of this my whole life that I just ignored. I also know I have extremely severe allergy issues, including a lot of foods.

I'm starting to work through the LizaJane spreadsheet to record all of my results. Do I keep going through my Neurologist, who I really believe is a smart person, but is just slowly working through the check boxes or do I switch to someplace else? I've researched local facilities and UT Southwestern (Dallas) has several specialty areas for PN and Autoimmune based Neuropathies, but they are not listed as a Neuropathy Association Center of Excellence. Is it worth trying to get in there? My most direct travel route to a Neuropathy Center of Excellence would be Banner Good Samaritan Neuropathy Center. This may be a lot more difficult to do.

The last 8-9 months have been non-stop progression of newer symptoms and issues. I know something is really wrong and I'm really scared. Has anyone here gone through PN and AN in such a rapid progression? Where do I need to go to try to seriously get help?