[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?

[en bloc]

Just based upon what your state here, it seems like autonomic neuropathy is a very real possibility. The rushes you experience when standing or bending, then standing are typical with postural orthostatic hypotension. It would be very easy to confirm this by taking orthostatic BP's (laying, sitting, then standing). If there is a significant drop in systolic pressure when standing (greater then 20 mm/hg) then you obviously have some autonomic dysfunction. Your heart rate likely increases significantly as well in compensation for the drop in BP.

I would suggest you inquire about full autonomic testing (tilt table, SQART, 24 hour BP, holter monitor, to start with). UT Southwestern in Dallas I believe has these basic autonomic testing (as I was initially tested there many years ago).

As for the cause...it can be many things. I'll assume you've ruled out the basic tests for diabetes. I would therefore, start with autoimmune testing (full work up). This sounds more likely since it obviously was rapid onset. Do you have any other symptoms that many not seem significant (but are new) that might help narrow down an autoimmune disease? Anything odd...like joint pain, profound fatigue, dry mouth, eyes, rashes, swellings, redness, etc?

Have you had B12 checked?

[nochance]

Hello,

Thank you for the quick reply. I have a fairly comprehensive Blood Work up of 8 pages. I know there is even more that can be checked, but my Neuro felt this was enough. Going to use LizaJanes spreadsheet to push further.

B12 was 430. (Just reread Mrs D's post and ordered supplements to hopefully increase)

Vitaman D was 17. Taking 5k UI D3 daily.

A1C was 5.6. This was after a 1 year of diet modification significantly lowering Carbs and Sugars. I lowered my Triglycerides from 400 to 200 during this time. Previously, they were 770. I had A1C rechecked 3 months later and it was at 5.0.

Sjorgens, Lyme, Celiac all negative. Other Autoimmune tests were negative. Not sure which based on wording in Results.

Metabolic and Liver blood work was normal.

Quick Background on progression. Currently take Gabapentin 300Mg 1/day. Higher doses not tolerated, Lyrica doubled vision, and one other I cannot remember, also had side effects.

Aug 2012, Left Cheek Burning/Electrical Shocks - Dr DX TN.
Aug 2013, Left Groin to Leg, then to Foot. Whole Body Paresthesia
Feb 2014, Right Cheek Shocks (Felt through Gabapentin), Right Arm and Leg have similar issues to Left, but not as bad. Right Foot now mirrors left as pins and needles.
Mar 2014, Started having major issues going from low position to standing, nearly blacking out multiple times.
April 2014, Abdominal Bloating, Stomach Bloating, Heartburn after eating even the smallest amounts.

Currently taking Achipex and Domperidone (Reglan compound alternative), still having major issues. Very familiar with Motility and Acid Reducers impact on food/supplement absorption issues. Bloodwork making sure this was not an issue was normal.

Other symptoms.

2 instances of full body rashes in the last 3 years. Unexplained, written down as unknown allergic reaction.

Shingles 1 year prior to first PN symptoms. Small area under right side of chest. PN symptoms mostly on left side until recently.

I've read about the cases of Shingles causing PN, but I've never seen whole body instances. Is that even possible?

Lot's of vision issues during this time. Shocks around eye sockets leads me to believe this was muscle strain or medication side effects.

You mentioned going to UTSW yourself. Are you familiar with the Dallas area and providers?

I'm trying to find others who have had similar symptoms, but NLD SFN seems to be rarer, with AN issues even rarer. It would help to know what others did to deal with these issues.

Thank You.

[mrsD]

You might want to try to correct any Candida or bad bacteria in the GI tract. Kefir is excellent for this.

8oz a day usually fixes things starting in 1-3 weeks.

http://lifeway.net/#countryUS

There are 12 different probiotic strains in this product. It is not expensive and is very delicious too. Makes a good snack or dessert. Bloating etc responds well to this food. Costco now carries it in my area.

Keep in mind that the Aciphex or any other acid reducing drug will impair protein digestion...and this leads to gas and bloating too, from the fermentation of protein in the GI tract by bacteria.

You do need to start methylcobalamin ASAP..you are right on the borderline of being low. Get some metafolin too... which is methylfolate...800mcg a day. If you have the MTHFR mutation you could be failing to methylate both of these vitamins.

Some attention to magnesium is also a good idea. Either the Morton Epsom lotion, or SlowMag twice a day.

[en bloc]

Sounds like you've had a fairly good start in regards to lab work up and getting proper supplementation and diet change going.

I'd still think you'd benefit from autonomic testing...at the least tilt table, holter, QSART, and gastric empty test (to confirm what sounds like gastroparesis). There are many medication options to help your symptoms once your conditions are confirmed. You'd have to stop the Domperidone before doing the gastric empty test.

There are many, many people with idiopathic PN...with accompanied autonomic neuropathy. but that doesn't mean you can't treat your symptoms and improve your quality of life. There are BP medications to help with orthostatic hypotension...like Midodrine or Florinef. Some get help with just a high sodium diet to help retain fluids to keep BP up. I use all the above. But again, you need to be tested before starting any treatments like this. Gastric motility problems can be improved with Domperidone, but some basic diet changes can also be helpful. Eating small meals and avoiding nuts, raw fruits and veggies (steamed/cooked veggies are fine) can make it easier to digest when motility issues hinder breaking down food. Also walk after eating (gravity really does help) and avoid eating in the evening to avert night time symptoms. I use a wedge pillow, as the slight elevation again uses gravity to help keep the stomach empty and reduce reflux. I good probiotic is a must as many with gastroparesis develop small intestine bacterial overgrowth (SIBO). This will increase all symptoms. The kefir as MrsD suggested is perfect.

When I first became ill and disabled (1996), I lived in the Dallas area (until moving back to VA in 2006), so I am familiar with UTSW and a few other facilities in Dallas. UTSW does have a sizable neurology dept, but some of my autonomic testing (tilt table and gastric empty study) was done even at Medical City.

You don't mention Lupus testing or basic ANA lab? Was this done?

[nochance]

Hi MrsD,

Thank you for your response and all of your other wonderful posts.

I tried Keifer on New Years and did not like it at all. I take Phillips Probiotic and eat Full Fat Greek Yogurt 3 times a week. I thought I was doing well with these two options, but after reading the differences, I will try to come up with a better Keifer option. I definitely see benefits of Keifer and I'm a firm believer in the benefits of Probiotics.

I looked at my labs and Metabolic and Liver tests showed a Protein level of 7.2. I do my best to try to keep myself normalized. I just ordered Alpha Lipoic Acid and Benfotiamine. I will add the two you suggested. Any brand suggestions? I use Amazon due to my Prime Membership.

Does SlowMag cause constipation issues? I have to be very careful with this.

Hi en bloc,

Thank you for taking the time to talk to me. It means a lot just having someone to talk to.

I have an appointment with my GI doctor Friday. He's really good and I believe he has a decent understanding of Nerve related GI issues. After years of fighting my Hiatal Hernia, GERD and Many Food Allergies, the Diverticulosis finally pushed me to change my diet. I basically eat 5-6 small meals/protein shake/snacks per day. It's helped me tremendously. This is partially why the recent Gastro problems are surprising. I've been managing these issues nearly perfectly the last 3 years.

I see an ANA with Reflex Titer listed as Negative. My Mothers' Sister does have Lupus, so I try to keep that in mind.

I'm curious if you see a holistic doctor?