I could cry 😢

[Buckley123]

My friends ❤️ I’ve been for my ent ultra sound scan today of the neck and face and they found nothing and say it could be a sensory issue caused by the brain ... the lymph nodes that were up on the pet scan are now not so this in no way will help my diagnosis and to top it off my meds hydro what ever 2 week trial is up and my consultant hasn’t asked the gp to prescribe so he won’t so now I have no meds 😘 🙌🏻🙌🏻

[honeybug]

Sooo sorry dear.

😢🤗💗xxx

[Buckley123 in reply to honeybug]

😣❤️

[Lisalou19]

Who sent you for this scan? Also call the doctor or his secretary who prescribed the hydro and ask for them to do a prescription that your doctor will continue to prescribed. The fact he gave them to you he will no full well they can take weeks /months to start working. X

[Buckley123 in reply to Lisalou19]

Yes i have emailed him but it just means il have to have a break from them.

Ent sent me for the scan and he said there is nothing wrong and everyone’s face is different on each side.

Then I just feel stupid because I know that but honestly my faces swells and feels heavy.

He looked like I was wasting his time.

I’m getting worried now that it’s getting rare and what if it not autoimmune what if it’s a neurological disease a bad one that no one can fix what if this is it for me 😣 what if the reason my mum died so young is because it wasn’t ms what if it was something else what if they have been wrong all along xx

[Lisalou19 in reply to Buckley123]

Scrap those negative thoughts right now!!!! Think back to your most recent successful story at the hospital. Take yourself back to what this doctor said,

I've had loads of tests which says I'm fine, but I am not. Did you ask your gp for the referral back to him? X

[Buckley123 in reply to Lisalou19]

Thanks Lisa ❤️

Yes I have a referral to him now xx

[Lisalou19 in reply to Buckley123]

Brilliant!!!! That's your focus point now honey. I know it feels so frustrating when your tests come back normal, but you have to look at these negatives as something else that has been ruled out!

Ring the hospital tomorrow there should be a nurse you can speak too and ask for them to do your prescription that you can take to the doctors.

Xx

[Buckley123 in reply to Lisalou19]

Thanks mate I will do the doc was just looking at me like .. I was a idiot .. the gp did the same thing the other day too it gets so frustrating xx

[Frustrated2 in reply to Buckley123]

Buckley123

Is your symptoms feel like sinus pressure and on one side ?

[Buckley123 in reply to Frustrated2]

Yes but the scan says it’s clear xx

[Frustrated2 in reply to Buckley123]

Buckley123- I don’t have Lupus but my doctors are thinking Behcet’s which has lupus like symptoms.

I had a similar thing years ago where I was getting a lot of sinus pressure and pain treated for sinus infections but no relief.

But when they put me on prednisone I got better..

( I had vertigo and did physical therapy to try to get it gone, I couldn’t lay down without being sick and my balance was off also bad neuropathy.. now I think it was all Behcet’s related because I had a herpetic rash -that showed not hsv1/hsv2)

What I did find that helped me a little was using simple saline mist and nasacort and Bromelian.

Simple saline thinned the mucus lining and helped with swelling and if you have thick mucus. I went through cans of this Saline. (I like mist because it’s soft spray not like the Nettie pots or ocean spray saline)

Nasacort is an allergy medication but helps with swelling and Bromelian also helps with swelling.

I also drank hot fresh lemon water.

It didn’t take it away but gave me some relief.

I also did warm compacts on and around my sinuses.

I’ll put the items below and the dosage I followed for Bromelian.

Arm & Hammer Simply Saline Nasal Mist Giant Size: 6 Packs of 4.25 Oz amazon.com/dp/B01C6FC7VQ/re...

Nasacort Allergy 24hr Non-Drip Nasal Spray (120 sprays, 3 pk.) amazon.com/dp/B00MIVIWQI/re...

NOW Supplements, Bromelain (Natural Proteolytic Enzyme)500 mg, 120 Veg Capsules amazon.com/dp/B000I2028A/re...

draxe.com/bromelain/

Bromelain Supplements and Dosage

How much bromelain should you take each day? The most commonly prescribed dosage ranges between 200–2,000 milligrams daily (usually around 500–800 milligrams per day). (13) However, for various conditions, many physicians may recommend other dosages. Below are suggested bromelain dosages depending on the condition you’re treating:

To treat arthritis — 400 milligrams taken 1–2 times daily

To help with allergies — 1,000 milligrams daily of bromelain and quercetin

For help preventing cancer — 2,000 milligrams daily, ideally take with other proteolytic enzymes

To improve digestion — 500 milligrams taken 3 times daily with meals; some people choose to mix bromelain powder into water and drink before meals

For help with surgery recovery — 1,000 milligrams 3 times daily taken between meals

I haven’t tried it for what I’m going through now but I know it helped me some back then I hope you will get some relief

I know how I felt and I was miserable.

I think most of us on this forum and other forums know how it feels when we are in pain and they don’t find anything. Don’t feel stupid they just aren’t getting you in soon enough and you have to keep pressing on.

Take pictures and keep a log of your symptoms. I know for me this has been what’s helped me!!

Many of my labs and tests have come back normal and I too know how they can make you feel, but your body sends signals that you feel!!

Stay the course and don’t worry about what they think you know your body and remember we on here know how you feel!!

Sorry for the long post..

Take care of you!

[Buckley123 in reply to Frustrated2]

Thanks for your reply yes my neurologist mentioned Behçet to me too my skin can be very bad lately

How are you xx

[Ianrussell69]

So sorry have a good cry it’ll make you feel better

[Buckley123 in reply to Ianrussell69]

Thanks I have so frustrating xx

[eekt]

woah, autoimmunity is relapsing-remitting (mostly)...just because nothing showed today doesn't mean it's not there...might need repeating during a flare, possibly?

It's a jigsaw puzzle, but they're working on it...HUGS xxx

[Buckley123 in reply to eekt]

Thanks mate just struggling with this I just want to know so I can gain back some sort of life xxx

[eekt in reply to Buckley123]

Totally understandable, it leaves you all at sea, not knowing what's going on...a doctor that looks at you like you're an idiot (boy, I've had a few) IS AN IDIOT! Focus on your coming apt and gathering info for it...more hugs xxx

[Lupiknits in reply to eekt]

Yes, more idiotic doctors around than those of us with autoimmune conditions, and we’re supposed to be “rare”

[Lisalou19 in reply to Lupiknits]

😂😂😂 brilliant comment 👌x

[conniemcall]

I agree with lupiknits!!

Im fortunate to have good docs but i know its not the same for everyone!!

Big hug!!!!!@

[Buckley123 in reply to conniemcall]

Thanks x

[Krazykat26]

Chin up Buckley!! I agree with Lisalou that u should be on the hydroxy for a couple of months for it to have an effect..two weeks isn't long enough..if u r tolerating it well..push to get it reinstated!!

In the words of Bob Marley..get up stand up..don't give up the fight!! 🥊🥊Xx

[Buckley123 in reply to Krazykat26]

Thank you 😊 xxx

[Lisalou19 in reply to Buckley123]

Did you manage to speak to the hospital today? X

[Buckley123 in reply to Lisalou19]

No I’ve left messages but no response xx

[Lisalou19 in reply to Buckley123]

😣 that sucks. 2 weeks ago I emailed the hospital every day, the same email marked as urgent, eventually they replied x

[Buckley123 in reply to Lisalou19]

I will keep trying tomorrow xx how are you x

[Lupiknits]

I’m popping back in to offer moral support x

[Buckley123 in reply to Lupiknits]

Thanks mate much appreciated xx

[KayHimm in reply to Buckley123]

I know it is discouraging when you still don’t have a diagnosis. But it does not seem that a scan of your neck necessarily means you are not sick or diagnosable. Aren’t you seeing a neurologist who is repeating brain scans? You might want to touch base with him about the test results. I do feel for you having such a long process and still no answers.

[Hidden in reply to Buckley123]

Hey don’t give up or despair. Many here, including me lately, go through spells of negative results which throw us backwards into a spin. If you feel crap then something’s wrong - end of. It will emerge but the waiting does feel like hitting a brick wall over and over. The two ENTs I’ve seen have been a disappointment too! 🤗

[Hidden]

Hi Buckley am just so sorry to hear what your going through. It’s perfectly natural to think about what your mums gone through and feel that you could be similar. My mum had near identical symptoms to me so we are bound to think there could be a connection. We are all unique so it could be something different and both you and I will have different things. You will have your good and bad days. What about ringing whoever recommended the trial of medication as 2 weeks doesn’t seem a long time to me to see if it works. Your symptoms are very changeable as I have similar issues with my glands that can change in an instant. I know it must be pretty distressing to experience both the panic and the pain of thinking that you need to be believed when you see a specialist as some can be very dismissive so it’s no wonder it’s stressed you out. We all know what it can be like as their attitude doesn’t help us. Keep a diary of your symptoms and have you ever been tested for M.E ( chronic fatigue syndrome) as I have a similar symptoms to you with my glands. The sooner you get answers the sooner you can get the help and support you need to improve your health. These diseases cause us much anxiety and stress and being so unwell is so utterly exhausting. In the early stages of my M.E my glands were flaring up so it’s good your going for tests. Look up the symptoms of M.E and get a print out and tick any that you have go to your gp and ask them could this be an issue for you and then at least you get some advice. Are you constantly tired or have sore throats and joints that ache if so it could be a factor and if not then we can strike it off the list. At the end of the day you need answers to what’s wrong and what’s causing you to be unwell. I hope you have a great week and you clearly need more tests to get to the bottom of what’s causing the symptoms. Get a good friend or family member to go with you to all appointments as a 2 week trial and one scan is not enough tests to conclude what’s causing it. I hope you have a good week get plenty of rest and eventually you will get your answers. If you can request copies of all your medical files and a diary of symptoms that will be goods so anyone can see a pattern. Do your glands swell when your stressed. My M.E dr told me when we are tired, run down and stressed out our brains can’t cope and then it can cause our symptoms to flare up. I hope you get to the bottom of what’s wrong as you can’t go on like this. Wishing you a great week. Take care. Elena.

[Buckley123 in reply to Hidden]

Thanks so much for your reply I really appreciate it I will also ask about me xxx