Health Organization for Pudendal Education

I have applied for SSA disability and been denied twice. The next step is to get an attorney and get a court hearing. My case does not look good because I am only 30 and there is no proof of my condition. Those of you who are on disability how did your attorney code the condition to get it approved. There are only specific diagnosis codes that are approved for disability (from what I understand) and of course PN is not one of them. My attorney mentioned trying to go the route of neuropathy even though I also have Sacroiliac Joint Dysfunction and central nervous system sensitization. PN is a form of peripheral neuropathy so I think this might be the best approach as well, but I have no proof that I have PN really. Would appreciate any advice. My case does not look good and we really need the financial help.

Thank you for your input Don and Ezer. I plan to get the Potter MRI in May so I hope this gives the attorney some "proof". I also slowly quit working from 12 hr shifts to 8 hr to 4hr. So although I am young I hope that will help.

Interesting you mentioned the Lyrica, Don. I am trying to appeal insurance for lyrica right now. Even though I've taken gabapentin for 1 1/2 yrs and tried every other non narcotic med for chronic pain insurance is still denying it. The effects of the gabapentin have lessened greatly, but when I try to increase higher than 2400mg the side effects are so bad and the pain relief is very minimal. I thought I might give lyrica a try, but I get so tired of fighting for things I need.

Hi Faith,
You've probably already been here, but I did a search for SSDI in your state and found these criteria codes:
http://www.ssa.gov/disability/professio ... stings.htm

Faith wrote:There are only specific diagnosis codes that are approved for disability (from what I understand) and of course PN is not one of them.

True. But there is a neuropathy code. It would make sense to me "they" would reject your claim of PN, where you haven't been officially diagnosed. Besides that, I would think you'd have good medical evidence with falling under the Musculoskeletal catagory. Do you have a doctor helping you with this??? What have you been basing your case on?
It's so not right to have to fight, claw and scratch for everything!!!!
Best,
Karyn

Thanks Karyn for your input,

Yeah, I've been looking over the code criteria and my big issue is that I don't have motor deficiets. Even in the musculoskeletal section it says, "Major dsyfunction of a joint(s) due to any cause" but it goes on to say

"1.02 Major dysfunction of a joint(s) (due to any cause): Characterized by gross anatomical deformity (e.g., subluxation, contracture, bony or fibrous ankylosis, instability) and chronic joint pain and stiffness with signs of limitation of motion or other abnormal motion of the affected joint(s), and findings on appropriate medically acceptable imaging of joint space narrowing, bony destruction, or ankylosis of the affected joint(s). With:

A. Involvement of one major peripheral weight-bearing joint (i.e., hip, knee, or ankle), resulting in inability to ambulate effectively, as defined in 1.00B2b;

OR

B. Involvement of one major peripheral joint in each upper extremity (i.e., shoulder, elbow, or wrist-hand), resulting in inability to perform fine and gross movements effectively, as defined in 1.00B2c."


My biggest issues are sitting and standing in one place (which causes increased burning in my feet and clamping down of muscles in my legs). I can ambulate decently, just not for long. Also SIJD is not imagable which hurts my case.

One of the issues I have too is that my primary doctor is a urogyno, but she doesn't understand SIJD so other than a PT I don't have a good representative for my musculoskeletal issues (and I'm not currently going to PT right now because I can't afford to keep doing something that doesn't work!). I am going to talk to another attorney this week hopefully who deals only with disability and am hopeful that he can be of more help than my current attorney (who has admitted my case is out of his normal scope of practice). My current attorney thought I should base my case on the peripheral neuropathy, but I don't think there is as good of evidence of that as there is the musculoskeletal joint dysfunction.

ezer wrote:Donstore is right. I had both a MRI from Kaiser and the MRN from Dr.FIller that matched closely. Also I had a history of having a stable comfortable job, to quitting to be a part time freelance consultant, to stopping altogether. So I think the work history was an additional proof.

Ezer how do you think the MRI helped your case exactly? I can't find peripheral nerve compression under the acceptable list of impairments. There is nerve root compression, but of course that is different from PNE or any other pelvic neuralgia.

The other thing that does not help my case is that apparently a PT is not considered an acceptable medical source. Few physcians understand and treat SIJD so if you only look at what medical doctors have written about me my case looks like a big mess. Maybe I need to find a good DO who treats SIJD to get the appropriate medical evidence necessary. I don't think PN is going to qualify under peripheral neuropathy because PN shouldn't cause leg/feet pain or pain with walking.

Faith wrote:Few physcians understand and treat SIJD so if you only look at what medical doctors have written about me my case looks like a big mess

I can relate to that, Faith. As I've mentioned previously, my PN symptoms have significantly improved. However, that wasn't my only issue. I've got so many issues going on for myself, I can't get ANYTHING treated. Nor can I get "diagnosed" with anything. I've recently been rejected from a pain clinic, for crying out loud!
Who did your nerve blocks? Was that Hibner, too?

Faith wrote:The other thing that does not help my case is that apparently a PT is not considered an acceptable medical source.

I have a huge problem with this. Why do MDs send us there, if the people who are actually working hands on with our bodies; (mostly) accurately identifying our issues ...
only to have it ignored?!?!? Not just by disability; although they'll want to know if you've persued that avenue, but by the majority of "health care providers".
Haven't you been diagnosed with Fibro?

Faith wrote: I don't think PN is going to qualify under peripheral neuropathy because PN shouldn't cause leg/feet pain or pain with walking.

I wanted to comment on this, too. Yes, you're right. PN wouldn't cause leg/foot pain. However, where does the PN come from? Yes! The sacrum! S2, S3. Well, is that the ONLY nerve that comes from that area? No. Please notice what else, does:
http://www.backpain-guide.com/Chapter_F ... pathy.html
And no, the PN is not shown on this map because the PN is no where near the surface of the skin. I would think that if you can have issues with a nerve so deeply embedded under other structures, that it's possible other more superficial nerves could be injured, as well. Even having your sacrum and/or pelvis out of alignment will disrupt those nerve roots.

Faith wrote: Ezer how do you think the MRI helped your case exactly? I can't find peripheral nerve compression under the acceptable list of impairments. There is nerve root compression, but of course that is different from PNE or any other pelvic neuralgia.

I am not sure really. It is just speculation on my part. Both the MRI and the MRN were very specific and matched 100% and completely independently. I am not even sure I listed any diagnostic codes. They called me and said I was approved.
I do know when I first contacted them that they do an investigation and get information from the doctors you list.

Karyn,

So sorry you are having trouble getting proper treatment! I can't believe a pain clinic won't take you, but it's probably no loss (in my opinion). I'm sick of pain docs. All they want to do is inject here and inject there or do a radiofrequency ablation. I don't want anymore injections; all they do it make me worse it seems!

Hibner did a "trigger point" injection into the ST ligmaent per his Pt's exam and request. Then he did an unguided PN block post botox (to help prevent central sensitization). That was the most accurate PN block though I think I had! I was really sore from the ST injection so it was hard for me to tell if the PN block completely took away my pain, but it lasted like 12 hrs. Then my pain doc did the rest of my injections (2 PN and 1 sacroiliac join) and a physiatrist did an epidural on me that irritated S1 and caused numbness/tingling down my leg for a while.

I've never been diagnosed with fibro. I saw a rheumatologist who suggested it because she didn't know what else was causing my widespread pain, but I know I don't have fibro. I thinkI have some central nervous system overload and nerve cross talk causing the burning in my feet. Plus I think it is very likely the SI ligaments that are hypermobile cause some irritation around L5/S1/S2 which then send pain signals in a non dermatonal pattern. I think my widespread muscle pain is quite likely due to malalignment syndrome, http://tinyurl.com/83boeqc

I really don't know what my next step is, but I'm not giving up!

Faith wrote:I've never been diagnosed with fibro. I saw a rheumatologist who suggested it because she didn't know what else was causing my widespread pain, but I know I don't have fibro.

OK - thanks for clarifying. Same thing happened to me and I don't think I have fibro, either.
About the nerve blocks you received: Aren't those supposed to be diagnostic for PN? Do you have your records from Dr. Hibner? No diagnosis from him or the PM doc you saw???

Faith wrote:I thinkI have some central nervous system overload and nerve cross talk causing the burning in my feet.

Well, it's possible. Possible for me, too.

Faith wrote:I really don't know what my next step is, but I'm not giving up!

I'm not giving up, either. I admire your determination and courage, Faith!