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Discussion Starter · #1 ·
uhm.

hello :unsure:

i am 34 and live in the us. i have been having a lot of problems for the past two years. i have been diagnosed with celiac and arthritis in the past year. it is very frustrating and i am so tired. i was tested for lupus over a year ago by a very unsympathetic rheumatologist (and the test was negative despite any other symptoms i was showing). i had a rash on my face two months previous (to the appt.) which disappeared, i had pneumonia three times in a row and i was exhausted and achy all the time.

since that time i was diagnosed with celiac and i also had seizures and have developed arthritis in my hands. i have raynauds, neuralgia (including glossopharyngeal neuralgia and sciatica) and have lost over 40 pounds this past 7 months.

it seems that i just keep developing new things. i had to drop out of university because i was so sick last fall--but now i am supposed to go back and i am having more problems. i have developed a rash over my neck, chest, and legs that my dr said is "just" a heat rash without really paying too much attention to it (and despite the fact that my house is cool, i don't spend a lot of time outside, i don't wear tight clothes, and i certainly maintain good personal hygiene) and i continually have costochondritis and nausea.

i guess i am just so tired of continually getting sicker and pretty frightened by everything that is going on. i don't know what to do. i found this site a while ago and felt too shy to post because i am just.... whining. i feel like a hypochondriac... there's everything wrong, but nothing at all... :sad:

but, thanks for listening to this. it feels so much better to just talk about it.

Sheer
 

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Dear Sheer,
Many of us, (myself included) initially tested negative on bloods for Lupus, a small percentage never show much in their bloods. Mine eventually changed, but a good Rheumatologist should be treating your symptoms. That is an enormous weight loss too!
Please do not feel that you are well, just because the Docs. are not getting to the bottom of your symptoms.

I am glad you posted here, no need to feel like a hypochondriac, many here have even had their sanity questioned and all of us have had to toughen up and fight somewhere along the way. Especially as you are probably a nice person it can feel all wrong to have to keep demanding help but I am afraid you may well have to do this. I am sure others can advise you on a good Rheumy.
x Lola
 

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Hello Sheer and welcome,

I agree with Lola that your symptoms definitely need further investigation and you need to see another rheumy. Not many rheumatologists actually specialise in auto-immune diseases but by posting here in the "find a doctor" section you should get some good pointers as to where to go for one of them.

Please don't feel like a hypochondriac, I know we all have (and sometimes still do) at some stage but you know yourself well enough to know that something is definitely going on here and needs looking into.

Make sure that if you get any rashes, you take a photo of them. Often, by the time we see the doc, they have magically disappeared which is most annoying.

Please don't give up and do get all this looked at. If you do have some kind of auto-immune disease going on then you need to try and get treatment started which should make a big difference to your quality of life and also hopefully control the disease better.

hugs to you
:hug:
Katharine
 

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Hi Sheer and welcome.

What was the 'lupus test' that was negative?
Are you on any treatments at all..........whatever you are on is clearly not enough.

Doctors who know little of lupus or other connective tissue diseases can make us feel like hypochondriacs since our symptoms are so many and varied.
When my lupus took a turn for the worse my then GP kept fobbing me off. I made the mistake of crying in the surgery (not recommended) at which point he prescribed antedepressants:eek:
I told him in no uncertain terms that I was not depressed and was only anxious because I was afraid of what was going to hit me next.
I refused to see him again and changed to another in the surgery.
She ordered a full lupus screen and chest xray and re referred me to a rheumy asap.
By the time I saw him I was severely anaemic, low white count constant fevers and had pleurisy.My inflammatory markers were off the scale.The pain and fatique were dreadful.I needed 6 months off work to recover.

The moral of this story is we know how disease effects us and we know when we are sick. We do have to keep pushing for diagnosis and treatment unfortunately.

Remember the person you were when you were well and fight for her.

Very best of luck
 

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Hi Sheer :)

Everyone has given you good advice and I hope that you will take it on board and move forward with renewed strength to seek better health care.

Can I ask a few questions? Have you seen a Neurologist for the seizures and are you on medication for these? Also glossopharyngeal neuralgia can be extremely painful and is often itself treated with anti seizure medication. There are also surgical options which can be considered but you should talk about these with your specialist. Many people with glossopharyngeal neuralgia lose weight because they develop a fear of eating in case the chewing action starts the pain up again. I wonder if this might be the case with you?

Celiac disease is also an autoimmune disease and there are some members here diagnosed with both celiac and Lupus. Likewise with Raynauds.

I would very strongly suggest that you seek a referral to another Rheumatologist - preferably one who specialises in autoimmune diseases. There is a Find a Doctor Forum here and you can post and ask for any information on doctors in your general area. Alternatively you can contact the Lupus Foundation of America and they could put you in touch with their local chapter who may be able to help you out with referral advice.

Just remember Sheer, something is most definitely not right with your body. Dont be put off by doctors 'dismissing' your concerns. Keep on fighting and we will help you all we can.

In the meantime if you dont already keep a diary of your symptoms, start one today. Write everything down in it. Often things happen that we think are unrelated and we dont want to mention them in case people think we are mad. If you do have a systemic autoimmune disease, then this can cause problems anywhere in your body. Also the advice to take photos of any rashes for future reference is a good one.

Take care for now
Joan:rose:
 

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Hi Sheer, glad to have you here with us. There isn't much more to say, except
any obvious changes (rash, swelling ) have someone take a picture of it and take it to the dr. next time. But if possible, have a copy and then tell him that he can put his into your chart, and you still have yours for proof. Now, get a referral to be
seen by a different Rheumatologist a.s.a.p. stay in touch with us so we can all help.
 

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Discussion Starter · #7 ·
ehh.

Thank you everyone :blush: I didn't expect any replies.

Things here aren't good. My rash has calmed a little but is still present and spreading very slowly. My right hand and arm are very swollen and painful. My Dr suggested I see the hand specialist but I think I'm just going to see my Doc tomorrow since I want him to see and document this.

I feel pretty upset right now. Sometimes it feels like I'll have to be almost dead for anyone to do anything. I'm losing the use of my right arm and it just seems like No Big Deal.

:sad:

I'm sorry. I'm tired and upset. I really just wanted to come and say thank you very much for the replies.

:blush:
 

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Hi Sheer

Dont worry. Pop back anytime you are feeling up to it :hugbetter: Thats a good idea to go to your doctor and get things recorded. I hope you get some answers soon.

Luv n stuff
Joan:rose:
 
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