New member recently diagnosed

[kaz03]

Hi, my names Kaz and I'm 30. This will be easier to start from the beginning however it may be abit long, please bare with me 

For nearly 2 years I've had various symptoms and doctors have been baffled.
The symptoms come on suddenly and last around 3 weeks. When I'm better I'm completely normal, for about 30-60 days and then I'm poorly again.

My symptoms are - hoarse voice, feeling like my chest is constricted/tight when I talk, chest pain that comes and goes, feverish, shortness of breath to the point I'm completely worn out just walking to the next room. If I try to do anything I really struggle to catch my breath. I feel exhausted and tired and abit flu like....everything is a struggle. Even just sitting up sometimes. I also get a very dry cough.

I have had numerous chest xrays all of which are clear, and ecgs too, again all clear.

I've seen a cardiologist who has said my heart is healthy, a respiratory specialist who's given me a peak flow meter to do for 3 months (until Feb when I see him again)  when I'm well my usual peak flow is 400-500 when the symptoms start its as low as 200.

I got referred to ENT as they thought it was a larynx problem, talking to them when I was ill they couldn't believe there was nothing wrong with my larynx. They checked 3 times they were convinced they missed something, which shows how hoarse my voice gets. Recently ENT ordered some blood tests,these were done when I was fine with no symptoms atall and they came back as positive for an autoimmune disease, they have said Sjogrens syndrome.

I don't think I have the usual dry eyes etc but I've been told this syndrome can target one area and they think its targeting !y bronchi tube/lungs area.

I have been referred to rheumatology but thought in the meantime I could ask others that may suffer with similar symptoms to mine.

Thankyou for reading and for any advice you can give.

Kaz

[Carolina]

WELCOME Kaz.

If you test for positive Sjogren's you most likely have Sjogren's!    Many times Sjogren's presents with other symptoms than dryness of eyes and mouth.

When you see the rheumatologist you may get the help you need.

Sometimes it takes visits to more than one doctor to find the right answers, however.

Those here can advise you when you are making your decisions.

Welcome.

Hugs,  Elaine

[Joe S.]

Welcome.

[grammad97]

Welcome kaz.

This group is the best! You will learn much, get support, and feel acceptance here.

We encourage you to read the info below our names so you can see what our issues are regarding our health and a list of what we take for our symptoms.

Each of us is different in our diagnosis and also what works for one may not work for someone else.

Sjogrens is not a one size fits all diagnosis.

[kaz03]

Thankyou for the replies and welcomes.
I had read the signatures of you guys that replied, however being new to this I'm unsure of all the abbreviations 

They haven't officially diagnosed sjograns but my blood results have shown that I have an autoimmune disease, the ent said most likely this because it can attack a specific area, in my case my bronchi/lung area.

The respiratory specialist saw me once and said it was psychological.......
Then I saw ent and he had these blood test results.

I've tried antibiotics to no avail and a small dose of prednisolone 5mg tablets. Only 4 a day for 5 days. Again this did nothing. But I guess everyone here has gone through it, pushed from pillar to post, constant illness and nothing concrete at the end of it to tell you what it is.
I've had many diagnoses, blood clots, pleurisy, acute laryngitis, Bornholm disease, a virus, pericarditis to name a few,then I have the relevant tests for these and I'm clear. 

The last gp  I saw called me a medical mystery lol

Does anyone else on here suffer with similar complaints to mine?

I don't know if its relevant but I also have polycystic ovaries and anemia.

Thankyou again for the replies 

Kaz xx

[Carolina]

Ah Kaz,

The Zebra syndrome....doctors are trained to expect horses when they hear hoofbeats. (expect common diagnoses for symptoms).  We are the unexpected Zebras. (the unexpected outcomes).

So, PCOS, that's serious and affects all of your body.  Don't worry about our 'alphabet soup'....if you don't need to understand the letters, all the better for you.

A doctor who says something is 'psychological' should be pitied and then put in the 'delete file'.

We are ONE entity.....all body.   There is NO psychological that isn't a manifestation of physical conditions.

It is clear that everything that happens to us affects for better or worse in our our entire body.  The changes in brain cells, even the changes in DNA, can be measured and can come as a result of environment, abuse, food shortages, and a host of other negative influences, and can also be improved and strengthened.

So, here were share our experience, strength and hope to help each other improve our bodies (including our minds and our spirits which seem separate from our 'bodies' but are not).

Now a few points:

Prednisolone didn't help you.   For many of us, a burst of Prednisolone is a magic experience.  It stops the inflammation (that's why it is a Steroidal Anti inflammatory). 

Those of us who have Immune Disorders most often suffer from inflammation, which is how the immune System attacks us.  So Prednisolone provide instant relief in many cases, at least from that effects of the Immune System attacks on our body.

All the many tests you have had rule out possible diagnoses.  So you know that your heart is strong, your lungs are clear, your larynx is healthy.   Those are good things to know, even tho' you are frustrated to feel terrible and not know why.

You need my mantra:  Patience, Persistence, Acceptance.   You must be patient while you pursue help.  An of course persistent.  And you must Accept that perhaps you will not find an answer.

Have you found a forum for people with PCOS?  I think you might find support and answers there as well.

Hugs,  Elaine

[kaz03]

Wow, thank you Elaine!

I did chuckle at putting drs who lable something psychological in the delete file 
Its almost like, no I'm sorry we have no idea, you must be making it up.

One Dr I saw said he thought the steroids would have helped too but he thought maybe I needed a different type/strength. He was hoping respiratory would help with this.... I know I'm a different case but when the specialist said psychological and basically I'll see you in 3 months because I have to but you need to learn to deal with it I could have sworn...its like they don't know and don't care, leave you to suffer in silence. Though I'm sure you guys have gone through similar.

My lung function was 20 percent below normal when poorly and perfect when not. The only thing that has shown on xrays is lung scarring. Would 'dry' lungs show on xrays etc?

Yet again with the pcos I had a Dr that said theyde only help if I had trouble conceiving. I don't have much luck with drs lol

I moved in June which is how comes I've seen all these people in the last few months because my new gp surgery actually seem to care. I've been put on a new contraception to see if that helps but no I haven't been on any pcos forums or anything. Maybe I should find one.

Thankyou again xx

[Carolina]

Oh dearest Kaz,

Keep hanging on. 

There are doctors who withdraw when they can't help you.  THEY can't help you and it's YOUR fault!

"It's only a virus!" is a perfect example.  Viruses can KILL you can make you suffer terribly before you die.  But because the doctor has nothing in the 'bag of tricks' "It's ONLY a virus!".

There are people who seek attention by 'faking illness'  and others with fear of illness who believe they have conditions they do not have.

We are not like these people.  For one thing we are here seeking advice and reality testing everything!

For another, we may in fact have conditions for which there ARE NO NAMES YET.  Most 'condiitons' people are diagnosed with today did not exist 150 years ago.

So relax, realize that for many doctors we are patients who soak up their time and do not walk away smiling.

What's to love about us?   They want to move on to some round peg that fits into their nice round hole of treatments and time slots.

We just put them in the delete file and keep on searching.

Do look for a PCOS group.  Here's one but I haven't any idea how good it is:

http://www.soulcysters.net/

Hugs,  Elaine

[kaz03]

Ah yes, its a virus. Heard that many a time.....

Love the analogy of us not fitting into their perfect peg board. We are unique square pegs trying to be slotted into a board with round holes. Why can't they just be honest and say "I'm sorry, I don't have a name for what is wrong with you but I'll help you get answers"

Thankyou for all your replies Elaine. I feel slightly less alone reading the messages to me on here.

I'll look into that pcos forum, thsnkyou 

Kaz
Xx

[Deb 27]

Kaz, I am afraid that early in auto immune diseases, many of us go through what you've been through. It makes me so sad and angry. It's not right and you need to find a good doctor who can find out what's wrong with you. If you are near a center of excellence, I suggest you try to get there, like a teaching hospital  to see a pulmonologist and rheumatologist. There has to be a reason you have scarring in your lungs. That doesn't happen for no reason. 

I had a   GI doctor tell me my stomach problems were depression and I later found out it was colitis. I wrote that A******* a nice letter.  And, male doctors don't do that to male patients. Sorry if I sound a little  sexist, it's true.

I wish you the best of luck in finding out what's wrong. Keep pressing on and if anyone tells you it's all in your head, find another Doctor. But, I will say at 60 years old, if another Dr. dares to treat me like that, I am gonna give him a piece of my mind and not pay the bill.

[kaz03]

Deb, thankyou for your reply and I'm sorry you've been through so much.
It is incredibly frustrating not knowing and having professionals basically say you're making it up.
I can't afford any more time off work either lol

I currently have a respiratory specialist appointment on the 17th Feb, he was the one who said psychological so it will be interesting to see what he has to say now that ENT have found this.
I also have a physio appointment at the end of march, respiratory referred me because I need to learn to control my chest pain through breathing exercises......because of course that account for all of my symptoms. I'm wondering if he will tell me to cancel it.

Still awaiting my rheumatology appointment but I'm hoping I'll receive a letter soon.

Thabkyou again for all the messages, I'll keep you all posted

[eelcifer]

Kaz,

I feel your pain when it comes to getting a diagnosis.  I am 31 and I have been searching for the last 2 years as to why I have been having strange symptoms that didn't seem connected.  I have had numerous doctors treat me like an idiot and have been told that it is all in my head and that I just need to deal with it and for awhile I actually believed them.  For about 5 months I tried to just think positive and tell myself that nothing was wrong because the doctors didn't find anything wrong but low and behold I didn't get any better I actually got worse.  Long story short is that I now don't except what I am told at first.  I research it and come prepared for each appointment and ask them a lot of questions and make them answer.  If they don't want to answer I don't get upset I just move on and look for a doctor who will listen and answer my questions.  So don't except what most doctors say, you know you better than anyone.

[kaz03]

Thankyou eelcifer. Can I ask you what your symptoms are? Do you have them all of the time?

[eelcifer]

Well I'll break this down into two sections, the symptoms that I have all the time and the ones that come and go.

Symptoms that are all the time:

Brain fog
Fatigue
General feeling of malaise
Pain
Ringing in my ears
Dry, irritated eyes
Dry mouth
Heart burn

Symptoms that come and go:

Joint pain
Anxiety
Depression
Panic attacks
Chest pain
Stiff muscles
Extreme fatigue
Bowel problems
Stomach pain
Vertigo
Nerve pain in different parts of my body

This is why it usually takes so long for a diagnosis because doctors are just looking at what is going on right then and there instead of adding up all of the symptoms.  It is a very weird thing to have these symptoms and not know what is going on but like I said you know something is messed up so you need to be the one who pushes the doctors into figuring out what is going on.  I hope this helps.

[kaz03]

Thankyou. It does.

Like you say there are so many symptoms and they could all point to so many different things, when it isn't as obvious as they like I guess they don't all like to think outside the box and think that some of us aren't text book cases.

I am still waiting for my rheumatology appointment but I'm seeing respiratory again on the 17th Feb.

I'll keep you all posted.

Kaz.

PS I don't post much but I do read lots on here. Your posts are what helps me. Thankyou