Keep getting the run around by our so called Health System!!

[Bealsie1986]

Hi,

Just joined as I am trying to get some answers as to what is going on with me. Since New Years I got back from holidays and i noticed myself getting really itchy lower legs, all lymph nodes in groin are swelled up, under arms, and now under my jaw and neck area. I noticed a couple months ago my feet and ankles getting really sore and aching when I got home from work And my veins in my feet were looking swelled up. By morning this was back to normal though started to get crazy fatigued and it does not matter whether I have a really good sleep or not I can still wake up and feel extremely tired and I start to nod off a lot. About a month and a half ago my left ankle had started to swell up and was like I sprained my ankle but I never done so nor even the slightest incident to cause it to swell, by lunch this day was a small pain in my ankle and shin and by the time I finished work at about 5:30 I was limping and could barely press the clutch on my van to drive home. Once I got home I took my boots off and sock and I saw my shin had a red patch on it and my ankle was very swollen.

I went to the hospital to get it checked out the next day and they said they were not positive but thought it may have been cellulitis and treated me with antibiotics Cephalexin, the next day surprisingly it went down about half way and I went to work and dropped into the hospital for the review the next day as they had asked and I told them it went down a bit and it feels ok.

The issue I found was that it did not improve from this point onwards and I fact after a week I started to get a pain in my right shoulder blade area, also been getting short of breath which seems to be more so at night, also getting a feeling like something dripping down inside of my leg but inside the skin, usually I found the lay after walking the swelling goes down or after I wake up, I started getting a few sharp pains in my chest around the heart area, all my arms go numb with my two pinkies and next fingers in from them and this happens a lot, my legs also going numb and I find myself feeling confused a lot lately too and started forgetting a few things, noticed myself pouring cereal in my coffee and not just once either, headaches and even migraines both which last for days at a time, I have hardly been able to go to work as I just can’t seem to function and complete any tasks while there as I just seem to be always side tracked by something or just can’t function and even appointment with things I need to be at I miss or am late as I can’t get my head together!! My toes in my right foot cramp up a lot and notice it when I am in cold areas and an example is in the cold food areas at supermarket etc. or even just cold weather. These cramps are like no other ever and it hurts!!!!

I am constantly going to the hospital and even a different hospital to get help and only to be sent home, on the lady occasion a week ago I went with the chest pain and they said my scans seemed ok but said I had a small heart murmur and asked if I have had it before? My answer was no never had before and I started to see a heart specialist which I done an echo and the specialist said that it also seemed ok but he had a few concerns which I have to go get two blood tests done and then look at getting an ultrasound thingy put down I think he said my food pipe to get a better look at the heart,

Now the last three days my left foot has been swelled up and like I said usually it goes down and comes back and a lot of times when I stand I feel it start to ache bad as it begins to swell and even the other side has a bit of swelling though nothing like the left one and both right or left lower legs and ankles are sore to the touch from the shin bone towards the calf but on the inside of the leg in the flesh part and where the swelling is. So I have a lot more going on with a few things but these are what I junk needs attention and I just don’t get anywhere ever!!

Any info would be great. Thank you

I have posted a couple pics for you to see as well.

Regards

Nathan...

Ps I just put a picture though only let me put one and this one is from a few hours ago hard to see swelling I think I have others you can really see swelling but this one here shows a really red patch which only came up like that yesterday.

Last thing I will add is before the swelling in my feet with my feet veins looking like they are going to explode,

I started to get a really sore and aching pain in behind my left knee and felt a bit hard in there with what seemed like a swelling in there too. Now I had a knee ACL reconstruction twice though about eight to ten years ago roughly which has never been all that good since then and now this is the longest I have been unwell in my life apart from broken bones etc

Thank you

[Lynora]

Where did you go on holiday?

If the picture was taken recently, it could be recurrence of cellulitis. You need antibiotics for a minimum of 14 days.

Where are you based?

[Bealsie1986 in reply to Lynora]

Hi Lynora,

No I really do not think it is that and even other health professionals have said to me that they don’t think it has anything to do with cellulitis and I actually agree. I notice that this itching seems to be over the lymph nodes more so and now my neck my head/scalp and another thing is my liver enzyme levels are all higher then they should be which is from a recent blood test after I told the doctor a few things and he looked at me stupidly and questioned me on the things I said thinking I was just making things up or something. Then finally he come back to see me and said “mmmm interesting! And I said so you see your test showed you something that points to me telling you the truth in all this have you? And he said yes I believe you now. And then tells me to follow up with my GP doctor who is of no real help either.

I went on holidays to Euston NSW and VIC Border though we stayed on the NSW side and the Murray river which we we riding jet skis in which the other side is Victoria.

I am based in Tweed Heads NSW.

Picture was taken last night and as I said in the primary post, they actually said that they could not confirm if it was actually cellulitis but it was warm to the touch and did not really hurt when they moved my foot around but when I try to move it around it hurt a bit.

So they said that they think treating it for cellulitis may be a good idea just incase and I took the full course they gave me plus the drip the night I went there about it at the hospital and then also two yellow looking tablet s I think it was one hour or maybe half hour before the drip of antibiotics, followed by the Cephalexin at dinner time a few hours later at home and then finished off the five day fours taking them four times a day as they said and also it never improved over the next week and ilafter the first week it started getting worse and started getting fevers and chills too, then started getting this shortness of breath, even in conversation and then I started to get a cough that kinda tasted a bit like blood at times and also when I would cough something up it was real bubbly looking, strange I thought and a poisonous taste in the back of my throat. I have had two culture tests done which never heard anything about so they must have been good and I fact the last one that said was clear.

And also this pain around the right shoulder blade that comes and goes but last for days then does off.

I think it is maybe a blood clot in my leg after some research online but I am so frustrated with spending so long on here searching for answers and I am feeling like they just keep sending me home with out even running any real tests that I need. And the only ones if ever they do is a blood test and

I am sooooo tired!!!

Last night I said to my girlfriend I was going for a shower and next I woke up with my head on the table and my fone in my hand and woke up not knowing what happened and saw my work clothes on and have no recollection of feeling tired or anything and I know when I get very tired as I have been getting this crazy fatigued felling happen very suddenly and going from feeling half ok to feeling my entire body feel like a dead weight and every time I wake up I can at least remember going to sleep. This time was just blank!!

[Lynora in reply to Bealsie1986]

Didn’t realise you were so far away - this site is based in a London! I’m in Scotland! Not sure we can offer much info as to where to get help.

Have they done an investigation for parasitic infection? (Rivers are nasty places for harbouring beasties)

Visit lymphoedemasupport.com - there is a branch in NSW - someone there may have info.

Also, find Professor Neil Pillar in Flinders University - he is an internationally renowned scientist in the Lymphology world.

[Bealsie1986 in reply to Lynora]

Hi Lynora,

Hope this message finds you well.

Ok so I wanted to update you on my current condition as things were getting very out of hand for me. I appreciated your earlier advice you gave me on it all now I have been told I had my asthma come on which was never an issue for me then I had that horrible pain in the back around the right shoulder blade which would shift to the left side as well. So they tell me now it is Emphysema?? Never had a problem before and the shortness of breath I was getting a lot was also a first and out of no where. So then my memory was fading out on me and in he end I could not even go to work as I just did not know how to get my head together and often found myself and still now, being side tracked by everything I come across. I have also been coughing up blood a lot too and had an aweful taste of blood in the back of the throat.

So why I am writing to you is to tell you that I have Mold all around my bedroom floor against the skirtings but on the carpet and had been there since I moved in here and I just thought it was stains though could not think what would stain a floor like that and I just managed to forget about it as time went on. The toilet also constantly runs which is just next to my room. So since I only rent a room here the owner was out the other day and I just wanted to see if it was just in my room so I opened the door to the room next to mine and the next and so on and would you believe it, it is in every single room!!!

I have done my research and I even have watched many documentaries about this and one in particular was called Moldy or mouldy one or the other way of spelling it, what is funny is it is exactly what I have been through to a TEE!! It was like as if it was my life being spoken about on t.v. and I just could not believe I think I have found it and I had no idea if he seriousness of Mold. I knew it was bad though I had no idea it was that bad.

I have a new problem now and it is this,

I tell a doctor about this and it is that they are not taking it serious and just laugh at me when I told them I think it is Mold, they say well highly unlikely and tell me I need to see a psychologist?? I do not think they are right at all and I do not know who I need to speak with about it and at least look at getting to the end of all this. Funny thing about this is I moved into the garage and been here for about four days now and already I feel a big improvement!! So this is telling me I am on the right track.

Swelling is down in my feet and ankles though it is still very tender to touch and very scaly with dry skin and now even my scalp has dried out and it was very itchy like the rest of my legs were but now the itchiness has died off mostly but the skin now is peeling off my head as if I had dandruff. My hair looks like it is thinned right out too and looks like it has been falling out or something but I have short hair about 10mm in length so I can see the scalp more then I recall being able to in the past.

Well I will leave it here and hope you can use this for others.

Regards,

Nathan

[Lynora in reply to Bealsie1986]

Nathan - can you move?

You could contact the EPA, or the Rental Tenancy Board. Doesn’t sound like your GP is sympathetic - he could also report the problem to the EPA.

Whilst emphysema is often attributed to coal mining and smoking, other contaminants can be a cause too.

A contact in Melbourne suggested this link, which you might find useful (but really, you need to move to safer, cleaner, accommodation):

health.nsw.gov.au/environme...

[lovesradio]

You are having one awful time and hope that Lynora's great advice works for you.

[Bealsie1986 in reply to lovesradio]

Gidday,

Thanks for your message, yes she certainly was very kind and extremely helpful, you could not pay money and get any better advice then the advice she gave to me.

I am definitely having an awful time!! And for a person that only turn me 32 tomorrow I think to myself where did I go wrong to get such bad stuff come my way.? Just life I guess though i am about to go find the professor which Lynora has told me about. I just woke up and it is 1:47 pm though I have been awake for a bit over an hour now but my point is I just can’t seem to get myself up in the mornings now and instead of things improving they just seem to get worse for me, well I am off and hope you are well and NEVER have to have this happen, I will go through it for us all 😜

[Chocolate-e-clare]

Goodness!! Go to your GP and demand to see a specialist - your blood work is off and your lymph nodes are swollen .... something is attacking your systems - when I got sick and swollen and my GP was clueless I booked in to see my friend’s rheumatologist (told my GP to write referral) - she diagnosed me in 10’ (rare illness). Good luck! Your symptoms are not of lymphoedema. Wishing you well.

[Bealsie1986 in reply to Chocolate-e-clare]

Hey mate,

Thanks for your message, I have done more then demand off them to see people though this country ain’t that easy to see anyone these days!! I have been into the hospital at the emergency at least 8 times and sent home every damn time!! Been to my doctors at least 20 times in the last two months and you think I am exaggerating, You are wrong!!!!! I have kicked and screamed to see people and no one listens, I never said my symptoms were of lymphoedema but maybe I am trying to look outside the box a little, so I decide to do more research and see what I could find and one part of my search has lead me to here, every thing happens for a reason and if I am here then it was for a reason.

Regards,

Nathan...

[Hidden in reply to Bealsie1986]

G'day Nathan.

It scares me to think I have more symptoms in common with you than I care to think about, but it would take too long to mention it all here - it would fill a book!

However, I noticed that you said you had seen a programme/documentory called 'Moldy' or 'mouldy'? Is there any way you could get in touch with anyone on there?

It's just a thought.....?

Good luck mate.

[Andy13]

Hi Ñathan, sounds like you're having a tough time. Reading your post it sounds like this all kicked off with pain in your lymph nodes which spread up from your goin towards your neck and chest. It's then progressed into cellulitus, fatigue, chest pains and liver issues ( though not necessarily in that sequence). Before I say anything else I should point that I'm a lapsed biologist and am not medically qualified. So accepting that "a little knowledge is a dangerous thing" here are a few thoughts. The lymphatic system serves two main functions, draining excess fluid from the tissues and it plays a role in the body's immune system. I suspect what's happened us that you got some sort of infection, either when on holiday or prior to that. Your immune system then kicked in and your lymphatic system got involved in fighting the infection. This led to the lymph nodes becoming swollen, first in your goin then higher up in your body. As your lymphatic system struggled with the infection the lymph nodes got congested which reduced the lymphatic systems ability to perform its other role, that of draining fluid from your tissues so your ankles and kegs began to swell (welcome to the club). Fortunately when you go to bed at night much of the swelling goes down (bed is like zero gravity, good for leg drainage). I'm guessing your recent cellulitus probably wouldn't have developed had your foot not already been swollen and your lymphatic system preoccupied with the other infection.

That 'just' leaves the itchy skin, liver issues, heart mummers fatigue, confusion and right shoulder blade. Well one symptom of liver problems is itchy skin so those could be connected as could the heart mummer and confusion. Lots of stuff going on doubtless lots of possibilities but I'm not a doctor.

Remember back at the start of this I said one of the functions of the lymphatic system was dealing with infections? We usually think of infections being bacteria but they can also be caused by fungi and parasites. As Lynora mentioned you might have picked up a interesting bug on your recent trip.

Regards,

Andy

PS have you ever travelled to more tropical areas outside of Australia, might want to check this out.

cdc.gov/parasites/lymphatic...