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Aladdin Alswaifi
Aladdin Alswaifi, Board Certified MD
Category: Neurology
Satisfied Customers: 7
Experience:  Internal Medicine Physician at Saudi German Hospital Asir
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I have morphea profunda tumors that are pressing on pelvic

Customer Question

I have morphea profunda tumors that are pressing on pelvic nerves (or entrapping the nerves). Despite methadone and other schedule2 narcotics I can't be upright for more than an hour or so before incurring excruciating pain. I have been repeatedly hospitalized
for the pain. I learned that I am allergic to steroids when I had a Kenalog injection last year. I have done more than a year of UVA1 full body radiation, which treatment eradicated most of the tumors. Nothing is getting the deep pelvic tumors. Is there some
form of surgery, radiation,cyberknife, "OR" that will eradicate the localized lesions in the near-term? My morphea is the kind where it manifests as scar tissue, not superficial plaques. The morphea is not painful of itself, it is what it does to surrounding
tissue, nerves and/or organs that disables me. Please don't jump on this question if you don't have first-hand knowledge of morphea. I spent nearly a quarter million dollars in pursuit of diagnosis in 2014. I just need someone to give me an intelligent reply
based on their understanding of this specific disease(morphe profunda).. Any ideas other than methotrexate and steroids are sought. Thanks! Thank you.
Submitted: 1 year ago.
Category: Neurology
Expert:  Dr. Rick, MD replied 1 year ago.

Hi. My name is***** and I am online and available to help you today. Thank you for your patience.

Question and answer is just one of the services I offer. I can also provide you with additional services, such as live telephone or skype consultation, at a small additional cost. Let me know if you are interested.

How long has this been going on?

Do you have any other medical problems or take any medications?

This is not an answer, but an Information Request. I need this information to answer your question. Please reply, so I can answer your question. I look forward to helping you.

Customer: replied 1 year ago.
As stated in my original question, I take methadone and other schedule 2 narcotics and spent nearly a quarter million dollars seeking diagnosis in 2014. That covers the time and med questions upfront. I have no other issues.
I also stated that I only wanted responses from individuals familiar with my rare disease, morphea profunda. If you are not familiar with this rare disease, please remove yourself from this question in order that I receive appropriate replies.
Thanks!
Expert:  Dr. Rick, MD replied 1 year ago.

Unfortunately, as you already know, you have a very rare form of morphea and -- on top of that -- a rare secondary complication and set of symptoms from this already rare disease.

There is, other than the things you have already tried. Oral calcitol or Mycophenolate mofetil and in some cases the anticancer drug cyclosporin have helped a small number of patients who MTx didn't help.

In your case, you have already formed scar tissues and I very much doubt that these agents will be helpful to you.

As far as surgery? If it could have been done, your doctors would have already done it......

Cyberknife is just surgery with an expensive blade.....and you have already had radiation.

So. What is the take home message?

You could go to a large University hospital like the Mayo Clinic....but it seems you have already been under the care of some excellent Professors.....

At this point?

I feel you have reached the limit of what modern medicine has to offer you.

I wish that was not true, but from where I sit that seems to be the case given the information you have provided.

I realize that this was not the answer you were hoping to hear but it would be unfair to you and unprofessional of me were I provide you with anything less than truthful and honest information.

Surely, you prefer that I tell the truth rather than what you wish to hear. Because it reflects very poorly on me unless you press one of the top three feedback choices, keep this in mind when rating my answer and please do not punish me for being honest. I understand that this may not be easy to hear, and I empathize.

Even though my answer was not quite what you were hoping for, please understand that my priority was to provide you with the most honest information. With that in consideration, I hope that you found my answer useful. Please click the excellent feedback button so that I can receive credit for my efforts.

Dr. Rick MD FACS

Customer: replied 1 year ago.
Mycophenolate mofetil was a failed oral med that I forgot to mention. Inasmuch as the specific manifestation of my disease creates scar tissue, I'm not sure why you think it's secondary. Finally, surgery was not a reasonable option when I had 14 wide-spread tumors and tumors kept appearing, yet now that I'm down to 2 localized tumors it's a viable option. I'm looking for options based on my current condition, which condition is localized benign pelvic tumors. Why did you take my case? I was very clear about not wanting random replies. Please remove yourself so someone else can reply. Thank you.
Expert:  Dr. Rick, MD replied 1 year ago.

best of luck to you.

Expert:  Aladdin Alswaifi replied 1 year ago.

Hello,

My name is*****

I am an internist but I still can help by passing your question to a neurology specialist in my hospital and get you the answer back today if you allow me

Regards

Dr. Alswaifi