Valentine's Wish ....To Be Pain Free!

Friday, February 10, 2012 

Valentine's Wish ....To Be Pain Free!

Here are some updates since my last posting:

• Despite my insistence that an MRI would not be an effective means to portray these painful lumps, my insurance provider's Radiologist insisted to my Primary that I was wrong and told her they would only do bi lateral MRI's vs. Ultrasound (despite the expert's suggestion on this). Of course none of the 45 masses on my legs or back showed anything, as I suspected they would not.  But once again, since nothing showed up, they are convinced at that point it's just all in my head! Au Contraire Mon Frair!!!
  
• Following my MRI, I went to see an Endocrinologist at my medical group who I was told I need to see to try to help push through the referral to the "well known outside Endocrinologist specializing in painful fat". I was told he also knew of her which gave me some confidence in securing a referral. He was pleasant, patient, thorough and was willing to look through my previous history (pathologies) and take some time to feel the masses I had complained of. He indicated to me that there is a lot of red tape at my medical group and in order to try to assist me with the outside referral, he would need a few other doctors to get on board with my diagnosis to ensure that he is not alone in his findings (since a previous General Surgeon at this same group insisted I did not only NOT have Lipomas, but that FAT WAS NOT PAINFUL)!!!  He referred me to the internal Dermatologist, Geneticist, and Pain Clinic for further review.
  
• Previous to this appointment I again reached out to the outside Endocrinologist specialist and asked about the pain and if there was anything in the interim that might help. I got some Lidocaine patches as well as some NSAID's which I was advised was more effective than taking Advil or Motrin (told to avoid those).  Of course I am anti-pain meds (as I feel they just mask the true problem) but at this point I'd try anything other than Vicodin or the sorts to help.
  
• After this appointment, I visited with Dermatology. He was a nice man who had some experience in dealing with lipomas and knew that painful ones existed but I was not convinced he had vast experience with Dercums. He indicated that it is VERY rare and that I probably did not have it. Based upon my documentation of my previous history of angiolipomas (painful Lipomas) in conjunction with my paternal history of lipomas, his clinical synopsis of my visit was  "Benign Familial Lipomatosis". I don't deny that I most likely (at a minimum have that) but I inquired about how he could determine that they were benign if no current biopsy had yet been done on the ones I currently had. His response was by his looking at them and by my history and that if they were malignant I'd be dead by now!!! His suggestion was to once again refer me to someone he knew in General Surgery. I was again not comfortable with everyone being so quick to slice and dice me up vs. sending me to the outside specialist to get a better understanding on what's going on and determine the best course of action before any surgeries are done. He called me later that afternoon and indicated that he had spoken to top medical regional reps of my medical group and that he insisted I would not get the referral and that now general surgery or plastic surgery doesn't want to get near these as cutting into me may cause other problems leading to more pain. HELLO... My father has had well over 500 of these removed by a COMPETENT PLASTIC SURGEON all of which were covered by medical insurance... where is the disconnect here!  He claimed that since there is no viable option of treatment for this nor any remedy and since he is the "low man on the pole" that there isn't much he can do for me. He at least acknowledged that I have angiolipomas based upon my history and that they probably are painful. I asked him what the plan should be for me then. He said I was in a tough boat and he doesn't know what to suggest that there isn't a solution to my condition and that he understands my frustration and pain. I asked him to document what he read from my history and what he saw.
  
• Next visit was to the Geneticist. Going into this I really didn't have much understanding as to why I needed to go there other than to further document my family history but I was open to being further enlightened. Of course each time I appear at these specialists, they don't understand what they can do for me. I just explain that I am seeking to get an outside referral to a specialist and I need your assistance documenting my condition and history. This man and his assistant were very pleasant. He looked at my history, family history and interestingly informed me that there may be an even further connection to my lipoma condition. He is with great certainty sure I have Multiple Familial Lipomatosis and Dercum's (AD) but he also considers another condition which is where a geneticist brings about a new paradigm into this equation. He noted my family history of Colon Cancer (paternal grandmother and great-grandmother), a family history of colon polyps, along with my development of cherry angiomas (little red dots all over my body over the past few years) that there may be a link to something different. The doctor asked for me to get a hold of my father's colonoscopy reports and any I may have had to review. Here is what he concluded at this visit:
  
  
  (This is important, interesting information and will be interested in seeing if the outside Endocrinologist agrees with this diagnosis if I get a chance to see her)
• Familial lipomatosis is an AUTOSOMAL DOMINANT condition, usually benign and of little medical consequence. Individuals with painful lipomas (litterally  "adiposa dolorsa" or "Dercum disease") are a subset of familial lipomatosis. The gene for neither condition is known, the distinction semantic. Specific chromosome rearrangements have been described in the lipoma of individuals with familial lipomatosis; this is mainly of academic interest but would confirm "lipomatosis" vs. "angiolipomatosis". Angiolipomatosis is an AUTOSOMAL RECESSIVE condition, and with my reported family history, which is consistent with autosomal dominant inheritence (assuming it is accurate), does not support familial angiolipomatosis. Angiolipoma can be seen as a component of PTEN gene related syndromes and Birt-Hogg-Dube Syndrome. There is no evidence based on my examination for a PTEN gene related disorder , however Birt-Hogg-Dube appears to be a remote possibility!

The Geneticist deferred me back to Dermatology for pain management (why I have no idea) related to familial lipomatosis  and suggested that oral stabilizers (cromolyn) could be empirically tried. He indicated that recurrence risk for familial lipomatosis is 50% with each conception.  He also indicated that any family history related to Colon Cancer, Pneumothorax (collapsed lung), endometrial/uterine, or breast cancer can tie a relation between lipomatosis and Birt-Hogg-Dube. More to follow on this once I get him all of the information he requested.

What I find interesting about this diagnosis is that the outside Endocrinologist (www.lipomadoc.org) indicates (if I understand it correctly) that patients with painful lipomas who have pain may not have Dercums' and can still have familial lipomatosis (MFL) but can later go on to have pain which resembles AD without it being AD (Dercum's). This is another reason why I want to confer with her. I will be most interested in her expertise in his conclusions of what his impression is.

Now the constant theme I keep getting from these doctors is a feeling of why do I care so much about the diagnosis. Actually I don't. I don't care what the name is that I have, I just want the pain to go away so I can resume my normal life. I have been SOOOOOOOO tired lately that I cannot sit or stand for more than 3 hours at a time without being in agony. I am now taking Meloxicam (MOBIC)  and Lidocaine patches which I don't notice much difference yet. MOBIC you must take with food and you cannot mix it with any other anti-inflammatory. The lidocaine patches you can only wear 12 hours at a time then 12 hours off. These doctors I have been referred to just need to document what they see so that hopefully I will get to see this outside specialist so that she can give me some real feedback on how to proceed surgically or non-surgically with the ones I have causing me so much pain.

Next stop is Pain Management department where I have to go for an  "orientation" of what they expect from you before a doctor will see you... hmmmm more red tape? OK... just go... we know what the goal is.....

How are all of you out there? Please post your comments, join my blog and share your thoughts! This forum is to educate, share and encourage!!!

Happy early Valentine's Day.....xoxox

To Your Health,
SDLipomaGirl