Going to give it another try.

David,

I regularly follow a column in the NYTimes by Dr Lisa Sanders, who invites readers to solve perplexing medical mysteries. The most recent was about a case of excessive weight loss, and reading it made me think of you. Here's the link.....

well.blogs.nytimes.com/2014/08/07/think-like-a-doctor-losing-it/

Post Edited (Tim G) : 8/10/2014 12:02:04 AM (GMT-6)

well.blogs.nytimes.com/2014/08/08/think-like-a-doctor-losing-it-solved/?ref=health

David,

The solution to the patient's rapid weight loss--in his case caused by copper deficiency due to untreated celiac disease--was posted yesterday. I'm sorry that I provided only the link to the article that posed the medical mystery for readers to solve.

I always think of the person behind a medical case, and you have been often on my mind these past six years. I am sorry to read that solutions for you have not been forthcoming, despite the many doctors and tests and painful procedures you have been subjected to. It is hard for me to read of your continued unresolved medical issues, and continuing poor quality of life. But you continue to inspire many here and your presence allows us to support you in whatever small ways we can along this difficult journey you have endured with patience, hope and courage.

Take care.

Post Edited (Tim G) : 8/10/2014 12:13:42 AM (GMT-6)

Tim, thank you for your follow up on the story. Checking into some of the aspects that were bought up. My wife (a very experienced nurse) and I are convinced that one or more, or even all of my doctors are not connecting the dots correctly. Each specialist may be right in their findings, or lack of findings at their level of expertise, but however, there is something going on that they are all missing - while the problem continues to pick up speed and worsen. I do not believe I have been tested specifically for mineral deficiencies, and I know my marrow has never been checked, and I have since learned, that despite having many regular MRI's and even a conventional PET scan, things can be missed.

We are trying hard to put a new game plan in place, with the resources we have available, hoping it will happen sooner rather than later. Appreciate your kind words and input concerning me.
------------------------

Dear Aimzee,

You always have the right and kind words to say. All I will say, is your Ron is one lucky husband to have you at his side. Seems so long ago, that I did those televised and filmed spots. I recently ran across them buried in my computer. If you saw me now, you would be shocked to see the physical difference. Truly beginning to look like I am being wasted away, a little bit at the time. More surprised that I still have the remaining energy and strength that I do have, but I realize that I am on borrowed time at the rate of the ongoing decline I am experiencing.

On the Prostate Cancer stamps, I intend to offer my 3rd or 4th group soon, so that the many new people that have joined HW PC since the last one can get the chance to have one or more. I will order another sheet this week and put them out on HW. Thanks for the reminder to do so.

As always, give my best to Ron. Would sure love to meet you two one day in real life, I think my wife and I would enjoy your company. I have often told my wife (Peggy) about you and Ron, so she kind of knows your story and situation.

Bless you, my friend.
--------------------------------

Sunday evening update.

No improvement this weekend, despite some attempts by me at eating more. It honestly only makes things worse. I only have 2 more of those horrible anti-depressants my PCP put me on, then I am dropping the drug. To be fair to him, I agreed to try it for one month, and I will keep my word. But they leave me feeling nauseated every single morning, and it has done zero for any hunger or appetite feelings, so its pointless to me to continue on it. Will report this to my doctor of course.

From Friday morning till nearly midnight tonight (Sunday) have lost 4 1/2 more pounds, including over 1 1/2 pounds in the past 24 hours -this after an evening of heavier eating, and forcing some snack food calories into myself. After what I ingested last evening, I honestly thought I may have picked up at least a few ounces, or stop the decline, but instead, lost even at a faster pace.

This evening was disappointing as well. After eating nothing the entire day (and never feeling any hunger), I took the easy way out. A pack of instant grits (no butter, spices, etc.), 2 fried eggs cooked in PAM only, and 3 Turkey Breakfast Sausage Links (the 3 were low fat and contained 100 calories). This dinner was very plain and easy to eat, and had a total of 380 calories.

Within 30 minutes, thought I was in the clear, and then got slammed with violent stomach cramps, despite the mildness of the meal, and was soon in excruciating back pains. So once again, it proved nothing.

Once the morning nausea abated from the other meds, I felt fine all day (stomach wise) by simply not eating. Had a decent day all things considered, until I decided that I should eat something. Now that I did, got the expected reaction, my stomach now feels like I ate broken glass, and my back is still hurting moderately to severely, despite the amount of pain meds I am on.

I feel like the pace is picking up on the weight loss, and even now with the blandest of foods, I can't keep anything in me long enough for my body to glean the nutrients out of the food I am eating.

Just relaying the story, so don't get angry or frustrated at the story teller. Trust me, I have enough frustration at this point for all of us to share. I expect to easily slip under the 140 mark within the next 24-48 hour period, which isn't good.

Post Edited (Purgatory) : 8/10/2014 10:02:10 PM (GMT-6)

I hope and pray you find the answer David.
I imagine this is so very scary for you and Peggy.

An

Clock, just want to say "thanks" for saying what many of us have been thinking as this is indeed a very, very serious situation. I hope that David reads your post and takes it in the spirit in which it is intended. Thanks again for speaking so honestly and succinctly. The human body can only take so much and then it starts to shut down in order to conserve fuel.

David, please do not spend any more time here but rather spend your time and energy getting help. Clock, Mel and others have mentioned going to Mayo or a similar place and you should strongly consider their suggestion. Your medical team, while good, is obviously not equipped to handle your situation nor do any of them appear concerned. Please don't wait until your situation becomes terminal.

David:

As you so aptly point out, sometimes the charts are misleading. Look, you know something is TERRIBLY wrong.

You can nit pick what Sephie said, but her point is for you to get going and get the kind of help you need before it is too late. Keep "multitasking," but the VA and even Duke are not Mayo.

HW provides a lot in so many areas in terms of support/sympathy/praise/etc. and I am impressed with all the ideas folks have put out. We have many here whose knowledge rivals the medicos. But we are not doctors.

David, I know my posts seem repetitious (maybe because they are!). But it is hard to witness what you are going through. Help will not happen on HW nor in your neighborhood. I would hope your doctor could refer you to Mayo.

Mel

compiler said...
 I would hope your doctor could refer you to Mayo.

Physician referrals are not necessary in all cases at Mayo Clinic. 

Self-referals (LINK) are commonly accepted by people who are frustrated that their regular, community-based physicians are not making appropriate progress.  A participative doctor referal helps, however, to say the least.

Mayo Clinic has a facility in Jacksonville, FL in addition to the main office in Rochester, MN and another satellite in Phoenix, AX.

Post Edited (NKinney) : 8/11/2014 11:16:44 AM (GMT-6)

davidg,

she may be a great cook, but Indian food would be the worse possible cuisine I could possibly eat at this juncture. my only hope is sticking to the most bland, spiceless types of food possible ,and even then, no guarantee it won't cause cramping and the rest.

tonight had some simple bland soup, and it cramped me up. later, made some fat free, sugar free chocolate instant pudding made with 100% almond milk, and it cramped me up bad, still feeling the results of that.

only time I feel "normal", is 100% don't eat at all, and simply sip on water. Of course, that's no way to stay alive, but that's what it takes for me to have no discomfort. I was ok today, until I began to try to eat a little bit.

then, the nutrition folks called and cancelled my appointment this week at the hospital, been put off an entire week. so far, no one I have worked with, with this problem, sense or acts like there is any urgency, which I find a bit amazing.

Losing over 80 lbs. since Jan 2 without trying is already serious. Over 92 since September. And working on finding additional and/or better doctors, but can't make that happen out of my hat. There are resource, insurance, and logisitical issues with all of that. And most people can't just make instant appointments happen.

Even e-mailed my oncologist, as I am still a good month or so away from seeing him again, and updated him on how this problem is accelerating in scope.

Some here (not saying you, Ms.), insinuate that nothing or little is being done. They couldn't be any more wrong, as they are not seeing all the facts or knowing all the circumstances involved. But again, you can't always snap your finger and just make things happen. Well, perhaps if I were a millionaire with unlimited resources.

More amazed, that with the sheer number of MRI's I have had this year alone, plus PET scans, CAT scans, scoping, endless blood work, all that neurological testing, etc., and having seen at least 6 different specialist, they all come up empty handed and claim they can't find anything out of the norm, other than the actual symptoms that they are facing.

They ruled out dozens of potential disorders that could make some sense out of this, but can't actually dx. any of my current problems, except the convenient answer "Oh, I guess its just additional radiation damage showing up". Nice answer, but doesn't solve anything.

Hope you get some answers soon.

It seems like regardless of what the underlying cause is, correctable or not, your digestive system simply is not working now. Aside from still inquiring about possible causes, maybe it is time to step up the discussion with the doc about moving to alternate nutritional delivery systems, if available, like I think we mentioned in this thread or another. Need to get some calories into you.
I agree with you (I think!) that seeing a nutritionist is a waste of time. Your issue is not that you are eating the wrong foods....its that your digestive system, at the moment, cannot process food. If it is in fact because of rad damage, then maybe that makes it even more important to find alternate delivery.
I'm sure your docs have ruled out Pancreas issues, whipple disease, giardia, etc., any disease linked to malnutrition, etc.
Keep up the fight!

Post Edited (gibson00) : 8/12/2014 10:05:28 AM (GMT-6)

Gibson,

Will be seeing my private PCP for a followup Thursday morning. At our last meeting, he suggested that at some point, about using some kind of portable nutrician feeding device, that I could wear, that would slowly pump in some kind of nutrients through out the day.

He will be disappointed that the antidepressant he had me try for 30 days did nothing, absolutely nothing, for the appetite part of the problem. If anything, the fact that it gave me 30 days of mild nausea all day long was counterproductive to the problem.

The gastro doctor simply has missed something, don't know what.

See what the next step will be, that's all I can do.

Thanks, Tim.

Common sense and logic tells me that there has to be a real medical answer for this mystery. Just because it hasn't been found or diagnosed, doesn't change the facts of my case.

I was fortunate at the beginning of this ordeal, that I had plenty of extra weight to lose, but I am quickly well depleted of the excess. Not use to seeing my entire rib cage and bones I hadn't seen in years, very think looking from the hips down.

Shirt size, since January, have gone from XL to Small. Pants size 44 to 30 (and now the 30's are getting loose on me). Dress shirts from 17 1/2 to 14 1/2. These are sizes I haven't seen since I was 16-17 years old. Just weird getting use to this new body, after living in the oversized one for over 30 something years.

The tux I bought for my Knights of Columbus activities back in December, had to go get altered a month ago. They took in the pants as much as they could. Went to wear it last Sunday for the first time since, and it hung on me like a circus tent. Guess I am going to have to buy a new one.

It's no so much the actual weight I have lost that astounds me, as much as the speed that the weight has fallen off of me, and continues to do so.

Thanks for your concern and care

Insurance is not an issue. Have full Medicare, plus Blue Cross Medicare supplements, plus 100% VA.

The teeth is a separate issue from the weight which is separate from my PC which is separate from my neuro issues. I keep all my issues in separate boxes.

When the VA says its time for the major teeth/mouth/jaw surgery, I have to take it, already been waiting since January to get started, and they still haven't yet. So when that letter arrives with the start date for the oxygen treatments, you better believe I will follow it to the letter. The amount of money this dental work would have cost me (if the VA wasn't picking up the entire tab) is staggering.

No fear of flying, but I don't do long road trips well, even the 200+ mile trip to Charleston a few times a year to see my daughter is an ordeal for me each time.

-----------------------------------

Been researching this copper issue that was brought to my attention. We read some medical articles this evening, that made it sound like some kind of zinc/copper abundance or deficiency absolutely could be causing the total lack of appetite and weight loss. It was uncanny how much the symptoms matched up to what has been going on with me.

When I see my PCP Thursday morning, going to bring up the subject to him. Perhaps there is some kind of "metals" imbalance going on with me. If they weren't looking specifically for it, it could have easily have been missed. Could be something that simple that has gotten completely out of hand. I hope so.

I have had so many blood tests/panels done this year by different doctors, and can't find any evidence where they were looking for copper and/or zinc levels.

I may be hoping for too much, because usually, I always have to have the strange and unusual going on, never the simple answers, but I can hope upon hope.

Will see what the good doctor thinks about that.