PLEASE help me scare the CRAP out of a DSer who is not taking her vites!!

To: <[email protected]>
From: "micheller" <micheller@...>
Date: Sat, 11 Oct 2003 01:54:17 -0700
Subject: [duodenalswitch] Seriously ill- 5.5 years later after having the DS surgery.

Hi everyone,

First, let me re-introduce myself. I had the Duodenal Switch surgery over 5 years ago.
I was 342 pounds and I now weigh 118 pounds. I'm 5ft7 and a recent law school graduate.
It is truly a miracle that I graduated law school considering what I went through over 
the past 3 years.  I want to tell you I am a big advocate of the DS surgery. In fact, 
I started this list over 5 years ago. But, I can't stress enough the importance of post 
follow-up. I will try and tell my story without dragging it out or boring you all to death.

For the first year after surgery, life was great. I was losing weight so quickly and so 
happy with the results. I didn't always take my vitamins. In fact, I would go weeks 
without popping even one multivitamin. I didn't care.

I was thin and I was happy.

Year number two and three- I was having "mental" problems. I became agitated easily.
I was full of anxiety. I was very depressed. I was diagnosed as severely depressed and 
went on Wellbutrin. My psych doc summed up my depression as an inability to handle 
life since I previously used food as a tool for coping. Some clues that something 
was seriously wrong with me...

Orthostatic Hypotension- Basically, when I would quickly stand up my heart rate 
would go up and my blood pressure would severely drop.

Fatigue- I still felt like I was 342 pounds. I had trouble lifting my body up.

Joint pain- My knees hurt! And later on, everything would hurt.

Dry nose

Dry mouth

Plugged ears

Dry skin

Grain like feeling in my eyes- ulcers on the inside flap of my eyelids sensitivity 
to light (some of you probably already clued in on one part of my future diagnosis 
but just wait)

Here is the 1st big symptom- rash. In fact, my first full body rash came during 
Dr. Rabkins fashion show. I had a horrible rash from neck to my ankles. It finally 
went away with prednisone treatment.

2nd big symptom- I had a false positive on a HIV test. I took an HIV test (ERISA)
and it came up positive. I literally had a mental breakdown. I thought my life 
was over. Then (thank god) I had the Western Blot test. It came up negative.
(On a side note, I've had three followup Western Blot tests-all negative).

If you doubt me, go back in the archives, you'll see numerous email posts regarding 
the above symptoms and my general concern.

But the real kicker is my blood tests were coming up ok. Not great but ok. 
I was always close to the minimum needed to be acceptable. Every so often my B12 
would come out slightly low and my doc would encourage me to take more B12.

I would go to my doc or call Dr. Rabkin or talk to my pdoc about my symptoms.
I would tell about whatever symptom was bothering me the most at the time, but 
in general I wouldn't put all the symptoms together. None of my doctors asked about 
whether I was having other symptoms.

Don't let me forget another biggie here- I had a revision in the year 2000.
I was losing too much weight. After the surgery, I had lots of blood loss and 
in fact, I had to be put on an iron drip. Important point for later.

Congrats if you're still reading. Sorry if I'm boring you.

Now we are coming to year four and five. I'm diagnosed as Bipolar rapid 
cycling mixed state. Boy that is a mouth full. So, I'm actually happy. I'm 
relieved I have an "excuse" for my declining mental condition. I'm struggling 
like crazy with my short term memory. I actually get psychotic and start 
hitting myself (usually with brushes or other stick like objects- now when 
I think about it, I'm embarressed). I can't retrieve simple words even though I 
can "see" them in my brain. My intelligence is still excellent (no I'm 
not patting myself on the back) but I can't remember how to spell 
anything. So, here I am a girl with bipolar disorder (so I think). Wrong 
diagnosis- I would find out later.

I should mention that after year three I am religious about taking my vitamins. 
I take fat soluable multivitamins plus supplemental B12, potassium, calcium citrate, 
B100, fish oils, trace minerals and folic acid.

My joint pain is getting worse. In fact, I became addicted to Norco (Vicodin but 
twice the strength). The Norco not only helped the joint pain but it calmed my mental 
imbalance. By the way, excuse the misspellings. I still have a horrible time 
with spelling words. Luckily, I went to my sister and admitted my addiction. 
I flew to Florida where she lived on an Air Force Base (she's a Captain) and 
I spent one week going cold turkey and thru horrible withdrawals.

My fatigue was getting worse. I was missing classes and I couldn't concentrate worth 
anything. Luckily, I had an incredible Dean at my law school *****ally recognized 
that there was something wrong with me. I had gone from a 4.0 undergrad to a 
barely passing law student.

I was getting night sweats. My face was always feeling hot but I had no tempurture 
(see I know that word is spelled wrong but I for the life of me, can't remember how to 
spell it correctly). I was getting muscle spasms so bad at night (also known as 
charlie horses) in my calf muscles, I would wake up screaming in pain. I 
was experiencing dental and gum problems as well.

Finally, the fatigue became so bad, I was unable to get out of bed. I would get up and 
go to the bathroom and be so exhausted, I would fall back in bed.

The last straw came when I tried to get out of bed and fainted. I hit my head on the 
corner of my desk and it resulted in a huge gash on my head. My mom found me 
unconscious on the floor hours later and I was rushed to the hospital.

Thank god I found a wonderful doctor while in the hospital. She spent an hour going 
over six years of medical records and asking me about symptoms that went back from 
the beginning of my surgery.

I was diagnosed as having systemic lupus erthematosus, secondary sjogren's disease 
syndrome, peripheral neurophathy, hypoglycemia and pernicious anemia. I think 
that is everything but the diseases are a blur at this point since it just doesn't 
really make a difference what the disease is called as long as you get the right treatment.

I found out alot about blood work at that point. For example, pernicious anemia 
(B12 deficiency) is often misdiagnosed because a B12 level might show up as "normal" 
on bloodwork (at the lower limits) but when combined with a folate and zinc 
deficiency can cause what is called "megaloblastic madness".

In other words, the pernicious anemia was causing dementia that was almost 
neuropsychiatrically irreversible. So, I was truly losing my mind.

I'm not going to go disease by disease and tell you what causes what symptom since 
that would mean this email would be even longer (god help us if this thing got any longer).

I want to tell you what the end result is- I am still suffering from extreme fatigue. 
I barely can get out of bed and my memory is shot, my spelling sucks, and my cognitive 
skills are horrible. Everytime I blow my nose it bleeds. My ears always feel like I 
just walked off a plane. I sweat like I just ran a marathon and I have no life. I'm down 
to my last $400. I couldn't go to my own law school graduation because I was so fatigued. 
I've been in the doctor's office 6 times in the past couple months for dehydration. 
I've been trying very hard to get up and move about and I've been paying the price. 
I need to get well soon so I can get a job. Let alone work as an attorney.

Even though I'm still very ill, I am hopeful. After numerous tests (and I mean gross tests 
as well as numerous blood tests), the docs have determined that I malabsorb at such 
a rate that vitamins don't even get a chance to do their job in my body. I've been told 
over and over by the specialists that my disorders/diseases are definately an indirect 
result of my surgery by way of severe malabsorption and nutriutional deficiency.

I don't blame Dr. Rabkin. I don't blame any of my doctors. I blame myself. I am (or was) 
a smart person and should have realized earlier on that the accumulation of my 
symptoms was something more serious.

And if you would ask me if I would have had the DS surgery again. I would say no. 
The pain of being fat both physically and mentally doesn't compare to the joint pain 
and the muscle pain I have now and watching myself mentally fall apart.

Please don't attack me or tell me my medical terminology is wrong, etc. I don't have the 
energy. I just hope I may have helped one person be more diligent about their follow up. 
Whether it is one year after surgery or 10 years later!

Hugs to you all,

Michelle R.