Hi Dave!!!! Thank you for writing. I understand the pins and needles feeling at the nose and that is the only, thankfully, annoying thing about this disease so far. There are other areas that hurt but only if I press on them. Do you have the facial pain or annoying feelings on one side or both of your face? The Gabapetin I am taking has worked some but not so much around my nose where the nerve ending is. I have to look up Paresthesia to see what that is. Does your nose really burn when you are in a really air conditioned room or out in the cold wind? The hotter days we have had also gets the pin and needle feeling going.

Just came home from my 3 month follow-up for my Multiple Myeloma and had a good report and go back in 3 more months.

Hope you are having a good day Dave and thanks again for writing.

Hi NoseHurts,

First of all, that is great news about your Myeloma. I am now 21 months clear of Colorectal Cancer, dxed in '13. I now have checks every 4 months.

It is nice to meet someone else with a screwed-up nose, Neurologically speaking. My problems are left-sided due to an arterial knot around my Trigeminal Nerve. Yes the cold air aggravates it terribly, makes the pins and needles more extreme. I want to grab it and writhe it around, maybe rub a sander over it. Particularly cold temps also set off my TN.

I also get affected by high temperatures. I have Neurological Hypersensitivity, so this starts burning more over about 70℉, and my nose follows suit.

Unfortunately, people look at you as if you are crazy when you complain about your nose. But tickle a sleeper there with a feather, or even a hair, and see the reaction.

I have Lidocaine Infusions for my Neurological Pain and take Topiramate for Cluster Headaches. Combined, these do reduce the intensity somewhat, but not enough.

Dave.

Hi NoseHurts,
I'm sorry for the reason you have joined us here, but I'm glad you found us. In my opinion, a diagnosis of idiopathic facial pain really sucks! It's so vague. Over time you will hopefully get a better, more specific diagnosis which will lead to more treatment options. Keep following this with your doctor and try to be patient.

I was originally diagnosed with atypical facial pain and it took over two years to be diagnosed with trigeminal neuralgia. I have an atypical presentation with constant pain on both sides that moves around. I don't know what caused it. One day it was just there.

I get a lot of pain down the right side of my nose. When I cough, sneeze, laugh or raise my voice it feels like a ball of fire flares up inside my nose and slowly dies down. I guess you, me and Dave have something in common--our noses hurt!

If you're like me, you've probably been doing a lot of internet searching. A lot of what I read about atypical or idiopathic facial pain says it's a psychological problem. I would say that facial pain GAVE me psychological problems. There's no way I could have imagined having something that I didn't even know existed. If you run into a doctor who seems to think your pain is all in your head, run! Make sure whoever is treating you takes you seriously. One of the hardest parts of having an "invisible" illness is not knowing whether or not you are being taken seriously.

This is a good place to get your questions answered and talk to others who understand what you're going through. If there's anything I can do to help, let me know. Good luck! Cheryl

--has no one suggested the possibility that the smoldering myeloma may have something to do with the facial pain?

Myeloma, and the other blood conditions associated with M-proteins or monoclonal antibodies, are known for producing neuropathy due to cross reactivity with nerve epitopes:

http://neuromuscular.wustl.edu/antibody/mprotein.htm

Almost done with the book that Tom Brokaw wrote about his dealing with MM.

Referring to the site you provided, the M spike is what they call it and they want to get that under control and back to zero. Two more rounds of chemotherapy. I have the last chapter of the book to read and see how it turns out.

[QUOTE=glenntaj;1160747]--has no one suggested the possibility that the smoldering myeloma may have something to do with the facial pain?

Myeloma, and the other blood conditions associated with M-proteins or monoclonal antibodies, are known for producing neuropathy due to cross reactivity with nerve epitopes:



No one has connected the smoldering myeloma to the facial pain. They have said the neuropathy I get occasionally in my feet is from the smoldering myeloma. I will check the link you have sent plus ask the doctor. You would think, since he knows I have the MM that he would say something if he new of any link to the facial pain.

Thank you for writing.