My tearful prayers led me here

[Lindachees99]

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. and I live in *********, 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.

HELP!!!!

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.

[johare]

Hi Linda pleased you have come to the site.( Please be careful putting so much info about where you live on the web, theres weirdos every where). I am so sorry for what you have been and are going through. As you say it seemed to start in you digestive tract, but its not to say that there wasnt an underlying problem and that this was the first organ hit. However, digestive disorders can also mess up all sorts of chemicals and lab results due to mal absorption, as you probably know, you live with it. It become a chicken and egg situation.

Unfortunately, whether in the States or good old UK, doctors like their blood tests and they have their guidelines for referral. If you don't meet the blood criteria and then have some of the list of symptoms your not in the club! Many of us here had a major or many minor symptoms for years before the bloods changed and ANAs were positive. Some of us paid privately to see rheumys to be listened too. Does the gastro doc give an underlying reason for your ongoing digestive problems and lack of healing?

[Lindachees99 in reply to johare]

I brought up the confirmed inflammation to the Gastro and he said if it was the cause of my swallowing difficulties it would have shown up on the manometry. He has no explanation other than to wait it out and see if it gets worse! Not sure how much worse it can get, but I will say I am terrified that I'm going to find out. I told the doctors that my husband will be able to determine what's wrong when they do my autopsy. They get angry when I say that and then I am not only a hypochondriac, but a potential malpractice risk and no longer have any openings in their schedule.

Linda

[Paul_Howard Partner LUPUS UK]

Hi Lindachees99 ,

Welcome to the community. I hope that you'll find this site a useful source of information and support. I'm sorry to hear that you have been so unwell and that you are struggling to get a diagnosis. It is very disappointing that your GP will not refer you to a rheumatologist for further investigations. Are they able to suggest a possible diagnosis for the cause of your symptoms?

Could you benefit from trying to change to a different doctor?

If you would like more information about lupus and how it is diagnosed, you can download one of our free packs at lupusuk.org.uk/request-info...

[Lindachees99 in reply to Paul_Howard]

All my doctors didn't even believe I was in pain until AFTER my nerve surgery. I'm gonna pick up the lab results today or tomorrow, see what was done and how it came back and then make a decision. I thought that maybe I can try a dermatologist first for the elbows and face rashes.

[Barnclown]

Hello linda

Johare & paul have given really helpful replies

I'm so sorry everything is especially hard for you.

I think you live in the USA?

Have you contacted the Lupus Foundation of America? They have chapters all over the country & may be able to help:

lupus.org

Wishing you every best wish

🍀🍀🍀🍀 coco

[Lindachees99 in reply to Barnclown]

Thanks so much & yes I live in the U.S. I am just starting this path, but I got more hope from this group since yesterday than in 3 years. I am so grateful!!

[Barnclown in reply to Lindachees99]

YAY!!!! Glad you found us 🍀😘

[johare]

We moan about the service here but I know that its a battle in the US. I hope that the results shine some light tomorrow. Maybe the dermatologist will see something in the rash the others have overlooked. Keep us posted.

[MissFG]

Oh bless you Linda! At least you found this forum and the many kind ppl also suffering with Lupus who can sympathise and give you the support you need right now!

Can I ask have you had an antibody panel done? My TPO tested positive for Hashimotos and also my ANA plus along with my symptoms gave me a diagnosis of Lupus so I'm finally getting the help and treatment I need.

It does feel like a break thru when you realise what your suffering from. Now push to get the treatment you need. It's such a shame so many of us have to self diagnose to get this x

[Lindachees99 in reply to MissFG]

My doctor ran the standard lupus panel which tested negative. The dermatologist diagnosed with 100% certainty that I had plaque psoriasis on my elbows, with the right one being infected. She also said I had psoriasis on my scalp and fingernails. I went to my doctor armed with the diagnosis from the dermatologist, who is now finally is starting to go down the auto-immune path and has also stated me on a blood pressure medication as my BP keeps going up and down. Seeing an immunologist this Friday, my Gastro next Monday and cardiologist on 4/27 and wrapping up with a follow up with my doctor on 4/28. Wish me luck!

[Ronswife]

Lindachees99

You sound quite ill and autoimmune diseases cannot be firmed up with blood tests. You must see a rheumatologist any way possible. A diagnosis is needed so get to anyone who will refer you. You also sound like the job needs to be stopped. Perhaps a major teaching hospital will take you. All those symptoms are screaming at you to get help. There is no way any of us can say and legally can't. Doctors in the US are limited to what they know after school. They only know from the experience of seeing an example of a person and treating it. You must see the RA. Don't let this get on without finding out because it is so unlikely it will pass without help and you need to rebuild your body.

[Lindachees99]

Just finished a 2 weeks allergy test diet. Allergist says it's not allergies, the one item that gave me a reaction, shrimp, came up negative on the prick test. Have an echo and stress test Monday. I still believe I have lupus and thought maybe food allergies were the trigger. I am beyond frustrated!!!