Any advice?!?

[bonnie88]

Hi I am 20 years old and have many odd and persistent symptoms. I have been having night sweats, hot flashes, nausea, loss of appetite, weight loss, headaches, fatigue, unpleasant bowel movements, bloating, gas, and sharp pains in my lower abdomin in the front and my back. These symptoms have been going on for a year. I have had 3 different gp's, gone to my obgyn, gone to a rhumatologist, gone to endocronology. I test positive for the ANA blood work test. I am getting tossed around doctors and I am frustrated and feel like doctors aren't interested in helping. Anyone have any advice or ideas or similar stories?

[jacqueline121]

Hi there, I'm really sorry your going through this. Your symptoms sound just like mine when I first became ill.

It took ten years for me to get a diagnosis. I was 22 when I fist got ill, Do you get fatigue? That is a big part of Lupus. Also another sign of lupus is bad reactions to insect bites, joint pains and hair loss.

Unfortunately lupus and other auto Immune conditions can take years to diagnose and it doesn't always show in blood tests, sometimes for years.

The best thing you could do is try to see a gastroenterologist or rheumatologist. I was first sent to a gastroentrologist because of my stomach problems and weight loss and the tests they did showed I had some kind of auto immune condition, then I was sent to a rheumatologist.

I feel your pain. It's terrible being ill and not getting any answers. I hope you manage to find out soon what is causing your problems and get the right treatment.

Best wishes. Don't give up!!

[EOLHPC]

Hello bonnie

I agree with Jacqueline: hang in there & take heart: you will benefit from this process...in time, diagnostic clarity & treatment effectiveness will evolve and meanwhile you'll become an increasingly empowered patient. Having multisystem autoimmune conditions means we ourselves usually have coordinate input from several different specialist clinics. Gp's try to be helpful, but often have never encountered patients with complex conditions like ours

In my experience, it helps to request attention from the member of the clinic team having the most experience of immune dysfunction patients...and this is as true for rheumatology clinic as it is for gastroenterology, gyn, opthalmology, dermatology, whatever.

hope you'll let us know how you get on

🍀🌻

[littleeffie in reply to EOLHPC]

Morning Grr afternoon ,don't know where today has gone!

Just thought as you have Ehlers Danlos and Lupus plus ,same as I have,and thinking of my youngest wondered what you think.His latest bloods came back low white cell 2.7 and vit d 22 and ecg shiwed up unusual but not worrying rythm so have echocardiogram and tilt table as he feints weekly so obviously not exactly fluffy bunny results.He is now on D,3 high dose and repeating fbc blood tests .So ,what do you think,Eds complications ,early Lupus signs or weird immunology? I know you have a mix of things and I know my thinking just wondered what your always helpful thoughts might be as trying to make up a list of must have answer questions for when I see his consultant next.

Any ideas gratefully received.

Have a good Afternoon

Effie

------------+++--++++----+--++++---++---+++---+++---++++---++++-++(++

Sorry Bonnie for jumping in on your post but if nothing else it will show we are all having to search for ourselves and others aswell as asking friends on here for help .

[EOLHPC in reply to littleeffie]

Hmmm...this pattern of fainting is no fun. Glad the medics are looking at him carefully. You'll be hanging in there too...& on & on....figuring this stuff out one step @a time etc etc😜😤😴

yes, my inclinations are to consider each of us as a 'pie chart', and to remember I'm no expert: just becoming familiar with the significance of my own test results....& how they relate to my various diagnoses + symptoms

For what it's worth, my ECG (24 hr, or was it 48 hr, ambulatory) also came up with unusual but not sinister rhythm., and my infant onset heart murmur is v slight, the Drs say. I do have low but normal BP, and a tendency to feeling faint. My BP plummets during an anaesthetic or sedation which makes them keep me in Hosp overnight even for day-procedures. That WBC is low, but I'd want to know how that breaks down: lymphocytes & neutrophil count etc. if persistent complex infections are part of his pattern I'd be especially curious about immunology blood results: complements, immunoglobulins and full WBC profiling. And, of course, there are any inflammatory marker results.

Sorry effie: not helping you much...but am v interested & hoping you'll keep us posted...+ hoping someone else can give you a better reply

XO🍀🌻

[littleeffie in reply to EOLHPC]

Thanks.

Had just got back from physio with a long, long plan and his feedback from CRPS clinic and blam gp on phone with youngest results.Caught me off guard so fudge brain and trying to get the few results figures they wanted to give me forgot to ask for the more technical stuff so needed your input to focus.

Sooo glad you were on here as felt a wee bit flappy the bat!

Sorry to seem I was expecting diagnostic or trying to ask too much of you but think I left my funnybone and solitary brain cell under physio chair ,good job they don't have a dog or that could be it!

Thanks again for the "you are not alone in your mad world" reminder.

[EOLHPC in reply to littleeffie]

👏👏👏👍👍👍😘🍀👋

[AutumnSun]

Hi Bonnie

So sorry you're going through this. You may be allergic to certain food groups? Dairy, wheat, gluten etc. But I appreciate this won't answer all your symptoms. Hope you get answers asap!

Take care and keep in touch.

🌷

[littleeffie]

Hi Bonnie I am sorry you're having to go through all this but most of us on here have had similar experiences so don't give up and feel free to let loose your frustration and upset.It can take a long time to get the help you need as immune probs just won't sit still and stick themselves in the tick boxes that other illnesses do.

Take care and thinking of you with hope for some answers for you soon

[Freckle1000]

Hi.

If they haven't already -

Ask your Drs to specifically test your kidney and pancreas function. (also Celiac disease)

Sorry to be a bit Gothic, (unfortunately i am a bit) but it wouldn't hurt to have these things tested just as a process of elimination in your search to find a definative answer.

Immune stuff can be nebulous and sneaky.

From a self confessed kidney obsessed person.

[Bebe76]

Unfortunately gastro-related symptoms can be a sign of many problems, so diagnosis can be a problem. The ANA may or may not be significant, as some healthy people also have a positive test. Normally the rheumatologist will do further tests and evaluate your physical symptoms, and not rely on a single ANA test.

I had similar issues as you, mostly gastro issues and some knee pain and fatigue. After seeing many doctors and 2 yrs later, I was diagnosed first with Coeliac disease, then SLE months later. You didn't mention that you have seen a gastroenterologist, perhaps that is the next step.

[loopy-lou]

Hi Bonnie, I would also suggest you ask your GP for a Coeliac blood test to see if you react to gluten before trying any elimination. The reason being is if you eat less gluten for example and then have a test you may get inaccurate results. I too have had dreadful gastro-related problems with acute cramping pains in my stomach at times to the point I almost rang for an ambulance. I have gone gluten free and I noticed a huge difference after 3 months.

For hot flashes, try a fan. I have a fan by my bed even in the winter.

As far as GP's go it is very frustrating as I feel they generally have limited hands on experience with lupus. I know that I am the only lupus patient with my current GP and my previous GP had two of us. You could always ask for a referral to a different rheumatologist for another opinion.

I hope you feel better soon. Good luck x

[Nikitaeh]

Hi. I understand your frustration. I was 17 when I went to the doctors for weight loss. (When I went to the doctors I was 5 and 1/2 stone!) I also had to constantly go to the toilet. Doctors were not very helpful I just had to be very persistent I never really had any other symptoms. It took a year of tests, blood test and finally a kidney biopsy to diagnose me.

Even now many doctors don't understands the condition. But I see a lupus specialists now and they are wonderful.

I hope things get better soon.