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LUpus Patients Understanding and Support

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I am new here


I am not sure if one post goes on all communities I follow, newbie not sure how this all works yet, sorry if you see same post over and over....

Hi all. I am new here. I stumbled across this site last night, after I took a sleeping pill that, of course, did not work. My name is Linda R. and I live in Hillsborough, NJ. Oh my, where do I start? I have had abdominal issues for 10 years and only when someone mentioned auto-immune could be the cause did I even consider it. I was so naive and thought that if something was wrong, the doctors would have found it long ago. Silly me! It was only within the last 30 days when a nurse mentioned in passing that an auto immune, like Lupus, could be my problem did I even consider it. I am about 80% sure I have Lupus, but blood work shows nothing.

I had a gastric bypass in January 2007 at a weight of 317 pounds. That’s when all the problems started. I had multiple ulcers: 3 H-Pylori ulcers, one perforated, infections, 4 laparoscopic exploratory surgeries, gastric bypass revision (to cut out ulcer), I have GERD, an ulcer in my esophagus that will not heal. In November 2016, I had surgery to remove the T9 & T10 nerves which were strangulated within my abdominal wall. After the surgery, I was still having difficulty swallowing and I was exhausted all the time and had such inflammation that I had to go on Celebrix. I went to a podiatrist for SEVERE bone spurs on both feet. After 9 months of treatment, they are 70% better. Esophagus motility study showed a problem, but more extensive testing then said it was fine. I have difficulty swallowing, I am nauseous all the time, food gets stuck no matter what I eat. I cannot swallow any uncoated pill. In June 2016, I insisted on blood work which showed a low Hemoglobin (11.0), VERY low Ferritin Serum: 12; low MCH: 25.5, low MCHC: 29.6, high RDW: 15.5, VERY low D3; 25-Hydroxy: 5.7; B12, still within the normal range, but very low for me: 329 & B6, close to the bottom end of the range: 6.9. That was in June 2016. I had an iron infusion in August, but will need another one in 3 months (according to the latest labs).

My D3 is up to 10.3 (if you can call it that) and that is with taking 2,000 IU drops every day.

My fingernails are horrible. They have been peeling for months. On EVERY finger, I have a large white band with a dark pink small band below and above. They all have pits and ridges. I only have a lunula on my thumbs, all others are gone. My toenails constantly turn blue. In September 2016, the big toenail on my right foot split and half of it literally feel off.

I wake up with a migraine EVERY day. My bad cholesterol was never an issue, it is higher than my husband's and I eat very healthy, he eats anything and everything that is fried. My blood pressure is constantly going up and down. It is either 110/70 or 170/100. My heart constantly feels like it is going to jump out if my chest.

I am always dizzy and my vision gets really blurry by the end of the day. I work 55 miles from home and by the time I get home from work, all I have the energy for is to crawl into bed, but when I do, I cannot fall asleep. On those lucky nights when I do, I wake up after 2-3 hours and am up the rest of the night.

I had a bone density scan last week and diagnosed with osteopenia. Before my surgery, I had one compression fracture in my spine. Now I have 2.

I have thrush in my mouth which will not clear up, despite 3 rounds of Clotrimazole. I have at least 6 mouth ulcers any given day and my mouth and lips burn so bad I literally cry.

Slowly, over the past few weeks, my symptoms began improving. PCP ran auto immune testing, but got a call yesterday that everything was normal. I am thinking that since my symptoms were going away, without explanation, is why labs came back ok, but do not know for sure yet what was even tested. I will probably have to wait until April 7th to get a copy of the labs. NO rheumatologist will even set up an appointment without a doctor saying I need to see one, but since labs came back ok, the doctor refuses to do anything.

I always have a red nose and cheeks and constantly break out in an awful rash that is so itchy that I would rather die than deal with it. I have awful psoriasis on both elbows, but my right is worse than my left. I should buy oatmeal creme by the case. I use neosporin ointment 3 times a day to avoid infection from scratching.

I see a psychologist for severe depression, but I can't take it anymore. I want to live more than anything, but I no longer want to live like this.


Pretty please. I need to know it is not all in my mind and that I am not a hypochondriac. I feel so alone.

Linda R.

2 Replies

I am very sorry for the delay in replying to you, but I was at the hospital most of the day.

It does not matter where you post or how many times. What's more important is that you do not feel alone. Before I begin I must point out that I am not a medical doctor. I cannot diagnose you; even if I were a doctor, you cannot be diagnosed without seeing a doctor who performs a clinical examination.

SLE is notoriously hard to diagnose. It cannot be diagnosed via blood tests. There is no single blood test for SLE. There is a blood test called the "lupus anticoagulant" which people believe is a test for lupus. It is not. It is a complicated clotting test and thus confuses patients and doctors!

Many patients with lupus have "normal" or "unremarkable" blood tests. However, blood tests change over time and therefore, regular blood tests are needed. What is more important are your symptoms and these you should write down and record everything from childhood,no matter how irrelevant.

If I have understood you, your medical problems began as a result of your gastric bypass? What you have endured sounds very unpleasant and distressing. May I ask when did your depression begin? Was this related to your weight problem?

Have you seen a specialist doctor for the migraines because if you are waking up with a migraine daily, there is a problem which needs investigation. In lupus, mouth ulcers are usually painless.

Usually, a rheumatologist is required if you have joint problems which does not seem to be the case. The spinal problems may be unrelated. I don't know your age, but you have the stage before osteoporosis which means you require treatment to ensure there is no further loss of bone density. At the very least, you should require calcium and Vitamin D, but if you have not received any treatment, there are very effective treatments which not only stem the bone less, but can improve it. This you must discuss with your doctor.

It sounds as if you should consider seeing a dermatologist. Presumably, your PCP is dealing with your hypertension.

You say you are seeing a psychologist for depression and I suggest you continue to see him/her because you have really been through such a lot of trauma. I don't know whether there are other issues beside your medical treatment, but this can be very, very helpful because it does sound as if you need to talk to someone on a regular basis.

I am sorry I am not much help. However, just because you don't have a diagnosis does not mean you cannot talk here.

I see you have already joined the LuPUS Message Board.

With good wishes,


Hi, Just sending a big hug, hope you are feeling better.


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