Hi en bloc:

I didn't know my falling, inability to ride my new bike, falling backwards out of the shower onto my BACK twice at the gym, dizziness, any of it was PN.

I just thought it was 'getting old' or whatever! My health was deteriorating badly and it was a very confusing time for me.

I saw a neurologist in 2009 about chronic headaches, and he had me walk. That was that. The EMG results from January 2010 were exactly the same on Wednesday of last week:

Findings: i. Markedly decreased amplitude of the right and left peroneal and tibial nerves.
2. Decreased conduction velocity of the right and left peroneal and tibial nerves.
3. Increased motor latency of the right and left peroneal and tibial nerves.
4. Increased sensory potentials of the right and left sural nerves.
5. Absent latency of the left peroneal and left tibial F-waves.
6. Delayed Iatency of the right tibial F-waves.
7. Delayed latency of the right and left H-reflex.
INTERPRETATION:
1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.

I cannot walk any distance, it is too much work. I cannot stand for any time. I stagger from side to side. If someone is behind me it upsets me.

The reason for this is that my perception as relayed to my brain is scrambled. If I step on an acorn, my legs send that message, but the message is scrambled and my automatic reaction is that I'm falling into hole.

But if I see something I have to step over, my brain tells my legs, but the message is scrambled, and I don't raise my foot the right amount.

I have extreme right foot drop, and some left foot drop. So my toe doesn't clear the ground when I walk, and I stumble.

I cannot back up, step side ways, or weave among people.

I have a cane, but don't use it because I don't really walk much. I use the shopping cart at the store for balance, and exercise in the water and on the equipment that I can sit on at the gym.

My toes are dusky purple because the nerves to the blood vessels don't work properly. My feet are usually icy cold, as well. In fact the only thing I really noticed was how cold my feet were, and I asked my cardiologist for a peripheral vascular test in 2007 because I thought I had circulation problem due to cholesterol deposits. My circulation is better than normal!

I have to be careful with my feet because I don't feel damage. And yet I still have nerves that feel like I have a shard of glass in my heel! I even tried to find the glass 5 years ago! I was so sure there was something in my heel. Now I know that it is nerve pain.

I take Cymbalta specifically because it is on label for nerve pain.

My reaction to Hizentra20% was profound fatigue, pain, depression and itching and burning skin, tingling lips, itching eyes, and this got stronger and lasted longer each week. The site of the infusions was NO PROBLEM. The problem was systemic and developed a couple of days after the infusion.

However by the 9th infusion it didn't stop and I had the 10th infusion while in that state, after the Benadryl wore off at 2 pm I woke up in true developing shock, itching burning swelling, tingling all over. But didn't need the epi pen.
Just toughed it out. It went away about 4 days later, but I discontinued the Hizentra.

I started Gammagard 10% on Thursday this last week. Again, no reaction at the site of the infusions, but fatigue, headache, finger pain, and then itching and burning set in Saturday. I feel very weak and shaky but Benadryl is stopping the worst of the itching and burning for now.

I've never had IVIG. My body just doesn't play nicely with medications, I guess.

I was so hoping the Gammagard 10% would be the magic answer.

What do you infuse? I have CVID.

my numbers are:

G 388 range 588-1573 4/22/13
A 106 range 46-287 4/22/13
M 18 range 57-237 4/22/13
IGE 5 range 4- 269
G Subclass total 402 range 767-1590
G Subclass 1 198 range 341-894
Subclass 2 124 range 171-632
Subclass 3 18.1 range 18.4-106
Subclass 4 – 5.6 range 2.4-121

I had only one immunity from the Pneumovax 21.

Hugs, ElaineD