I am so jealous. You get to go before me. I am waiting on them to make the appointment for me. Please let me know how it went and what they did.
What type of PN do you have? Do you know what your's was caused by?

Where in Florida are you from? I live in Tallahassee, so it won't be too far of a drive. I go see a pain management specialist next thursday. I need something done with this pain. I could scream sometimes... but usually I end up crying because of the pain.

Take care..........by the way we are having some rain and I am lovin it.

He did a nerve test before the punch biopsy was done and that was it. I have a new appointment with a new neuro and I sure hope he can do a better job then this one. LOL I will keep you all informed of my progress. Thanks.... Michele

Hi Michele,

In one of your messages you say: "I could scream sometimes... but usually I end up crying because of the pain".

Can you describe the pain? Is it extra, extra bad burning, tingling, prickling or something else altogether? I hear about neuropathic pain and don't quite know what it is or how bad it can get.

I don't want to highjack this thread but Michele and others with neuro pain how would you describe neuropathic pain?

I just know what discomfort that I have and although very annoying and it wears me down, I haven't started to take any Lyrica or other PN targetted pain meds. Just quite a bit more paracetamol (general analgesia) the past few months.

Apart from 24/7 burning/buzzing/fasciculations, two examples - it is summertime here and everytime I go into an airconditioned building or turn our AC on, it's like my lower legs have the sensation of being wrapped in an ice blanket and it is not at all pleasant. Way different to what I have ever experienced AC to be ever before. (This is my first summer with it). Conversely when having a shower the water on the lower legs feels way hotter than on eg. the shoulders which is ridiculous as the water cools, if anything, as it falls. All the feelings are confused and definitely weird!

Look forward to hearing how you go at the specialist neuropathic centre.


Megan

Megan,

My pain consists of a sharp burning pain that hits my feet, usually my toes or the tops of my feet. If it wasn't for the medicine that I take, I probably would be in pain 24/7, but for the times when it somehow misses and doesn't work, that's the kind of pain I feel. By the way, I take 6x 300mg of Neurontin, 3x 200mg of tegratol & 1x 60mg of Cymbalta. Too me, the cymbalta is for my depression, they say that it also helps pain.

As far as pain in other parts of my body....... I just have a sharp, kind of like lightening hitting my body, pain from the top of my back to the end of my butt feeling. I have never been hit by lightning, but I can just imagine that it could feel that way.

When I take a shower, the water falling on my feet don't feel good, it really is a strange sensation. Just like when I wash my hands, that feels wierd too. I still have feeling in my feet, so I can still feel hot or cold. The only symptom I have is just the pain. From what I have read, which has been a lot in the last few months is if your pn is from diabetes, this is one of the most common complaint that pn'rs have is the pain. I told my mom the other day, that I can't wait for my nerves to die so I wouldn't have to feel this pain. I know that seems harsh, but at times that's how I feel.

I will certainly keep everyone informed when I go to the neuropathy center. Do you have anything in Australia to go to?

Michele

I appreciate your reply Michele!

I'm not sure whether we have any Neuropathy-only diagnostic/treatment centres where all stops are pulled out and extensive testing is done to elicit the cause of PN and other neurological diseases. If there is, I'd love to know about them.

That lightning type pain must be what they call lancinating pain and sounds horrible. I have only had that a couple of times since the onset of PN but they didn't last long although they was quite excruciating for the few seconds that they lasted.

Well, just want to let everyone know that my referal came through to go to the Neuropathy Center in Jacksonville Florida on March 25th. I will keep everyone posted.

Thanks,
Michele

Good news for you! I truly, with all my heart hope that you can and do FIND ANSWERS! That is often all we want....aside from any relief that can be gotten. [Well, maybe the other way around at times?]
It's often tho, and I have to warn you here, a long-drawn-out and tedious process. Takes test after test, MRI after CT scan and then Blood work out the wazoo! Often for a 'DUH? Don't know' in the end from docs. I'm going to cross my fingers when I can and my legs...don't/can't do eyes or toes well at all anymore and I will THINK hard that you get ANSWERS AND TREATMENTS that work!
End of the month huh? Well that isn't so far away really, and I for one will be waiting to hear all.
I have to warn you tho? The worst, truly worst part? Is the waiting for the tests results AFTER? Some take 3 weeks to come back for bloodwork and it IS an agonizing wait! I've been thru it 3 times for 3 different big issues and it's the worst-don't be surprised if you find yourself bouncing off the walls ceiling floors and all mentally if not physically...it comes with this territory.
Hang in there and keep up that HOPE! - j 's