I'm going to try the brand Neil-med you recommended. I'm g.o.i.n.g to try...lol

I've seen commercials on the balloon sinus surgery but not sure I would be a candidate. She, the "horrible" doctor, said there was tissue in there that needed to be taken out (?)

I think I've had the tests to detect immune deficiency but not positive.
Can you give me the name of the blood test/tests and I'll look at the blood work I've had done ?

I've also been dx'd (by my dentist and then confirmed with CT scan) that I have Eagle Syndrome on both sides. Worse in my right which is where all my ear problems seem to be.
I'm going to start a new thread on Eagle Syndrome to see if others have experience with this dx.

Thanks en bloc....always a wealth of info from you my friend

Debi

The basic labs to check for immune deficiency would include IgG total and sublcasses (1 through 4), IgM, IgE, and IgA. Once these results are evaluated, then further testing can be done, if necessary. But these couple labs will tell you whether there is a deficiency in any part of the immune system.

Sorry I've been away a few days....really wanted to answer everyone and will do so as soon as I can.

Had my 2nd massage (1st one in Oct 2016).....Wednesday and it knocked me to my knees ! Ouch !! and Ouch again !!
But I woke up this morning thinking I might live so here I am
Last time (after the pain from massage stopped) I had a really good two months with my neck and shoulder muscles before they started knotting up again.

Ok.....don't think I've had the IgG and subclasses done unless it was when this was first dx'd 4 years ago.

Here's what my Doctor said on the lab report:

Autoimmune labs are normal. No signs of autoimmune disease

CRP (inflammatory marker) is improving

No protein in the urine

No signs of parathyroid disease

The tests she ran for this were:

PTH-Intact
C-Reactive Protein .......(5.7 high....normal range 0.0 - 4.9)
Ur Creatinine
Ur Microalbumin
Ur Nicroalbumin Creatinine Ratio
ANA.......................... (Negative)
Rheum Fact Interp ......(9.0 normal......normal range 0.0 - 13.9)

Didn't give the PTH or UR results here...all were normal.
Should I ask for the IgG tests to be done in your opinion ?

I'd sure like to know if I have anything else going on.

Thanks and I won't make this one any longer than it already is !

Debi

I cannot tell you how happy all these replies make me !

Coming on here and seeing a new post just warms my heart.

Thank y'all so much and keep posting !

Debi

You are so very sweet! And yes, I did pick surgery as the best possibility of getting relief from at least some of my SFN symptoms.

I really relate to part of Healthgirl's quest. I, like so many of you am frustrated with the medical establishment throughout this experience. These past 3 years I saw doctors, did my own research, set up appointments with doctors I felt I needed to see based on information I gathered (much of which I got from members and posts on this forum) and went for different opinions even when that required paying out of pocket, as I was already pigeonholed as idiopathetic. Seeing a doctor who's "last name was Surgeon" was the absolute last stone I looked under. Btw, surgery wasn't that bad. It's the not knowing if it's going to work for me that's the bad part.

Thanks for your advice on getting off the opioid. Any suggestions about constipation? If you do please PM me as I don't want to bother members with such talk It all makes me think of that Amy Winehouse song "Rehab" Who know, maybe I'll need to stay on them. I take 3/4 of one now and can function pretty well so we'll see..... There's worse things in life and that is no life. Here's a nice soft hug for you

Hi Debi,

Thanks for your sweet reply. You are always so gifted at saying nice things and making all of us feel good.

I firmly believe the ketamine made a difference for me. It wasn't like flipping a switch but built over a period of ongoing treatment. The pain relief and improvements in swelling and temperature change allowed me to tolerate exercise better (which is known to help CRPS)and tolerate injections to my surgical area to reduce the amount of painful scar tissue I had. It's all really dovetailed to get me where I am now. I feel the ongoing pain reduction from getting boosters has helped my entire system calm down from being pain "ON" all the time. Sometimes I wonder if I still need them but stinging that starts to creep up when I near booster time improves after treatment so I guess I have my answer.

Ketamine is used in various forms for all kinds of neuropathic pain. There are even lozenges and nasal spray. If you're interested in trying low dose outpatient infusions there are some clinics in GA that give it.

Atlanta
Dr. Erik Shaw, Dr. Tobias Mussier
Shepard Pain Institute
Outpatient Ketamine Infusions
Shepherd Center | Spinal Cord & Brain Injury Rehabilitation
(404) 352-2020

Dr. Rollins, Dr. Sheahan
Southeastern Interventional Pain Associates
Ketamine infusions, Blocks, Injections

There is also a ketamine for depression clinic in Gainesville. Sometimes they do infusions for pain too.

I'm really glad I got the allergy testing done and am definitely more well than before. It wasn't pleasant, but considering what our idea of unpleasant is, it's pretty much nothing. The worst part is the intense itching that sets in after the scratch on a substance you're allergic to! Going for injections was time consuming in the beginning when it's building up but now I just go once a month. Some people can get the drops and take them at home but I was allergic to too many things for that to work for me.

Thanks for keeping in touch. I'm happy you started this thread. It's good to see everyone.

Have a beautiful weekend and keep laughing with that grandson. That's priceless.