Lots of symptoms no diagnosis

Posted , 7 users are following.

I’ve been feeling so unwell for 4 years now, steadily getting worse to the point of feeling suicidal. Not sure what’s going on anymore. Hope someone can help. 

Symptoms just keep getting worse.

Numbness, burning and redness on face, worse on left side, blurring in left eye, aggravated by heat and cold, also by touching eg washing, shaving, showering etc.

I have a waxyness to my skin mostly on my face and hands, worse on the left side of face again causing difficulties shaving due to razor sticking. My hands and face/scalp go numb usually after washing or shaving.

Fatigue, dizziness and memory impaired.

Weight loss and weakness. Aching joints, muscles.

Dry sore eyes and nose.

I no longer am able to sweat, I just burn and get dizzy and nauseous when hot.

I have developed a sensitivity to light (sun), sound, heat and particularly smells (perfumed) which make me nauseous to the point of heaving and the smells last for days.

Really feeling low, basic bloods come back fine but I’m still so unwell.

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16 Replies

  • Posted

    where did it all start? you have chemical sensitivity for sure. something to check into is SSRS.
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  • Posted

    https://patient.info/doctor/sjogrens-syndrome-pro

    I am sorry you are having such a bad time Dar43.  This is only a suggestion of something to look at & if you look at the leaflet in my link, it gives you other potential diagnoses to look at too.   I recognise some of the symptoms and of course, none of them may apply to you at all but something might trigger something.

    Are you in the UK?

    Good luck

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  • Posted

    May consider Biotoxin Illness, all of the symptoms you have match. Also standard bloodwork is negative if they dont know what to check for. There is an online symptom test checklist you can take to give you a pretty good idea if you have it. I took it, it is under biotoxin journey. Some of the bloodwork they would need to check would be your Cortisol, Veg-f, Leptin, MSH, ADH, MMP9, C4a, TGF-beta1. Hope this helps. Take the online test first, it is very helpful.
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    • Posted

      The symptom checker I was highly likely but the  VCS was negative.

      We have some mold in the bathroom on the silicone.

      Nobody else is ill and nobody will take me seriously, I got more ill over the last 4 years and everything is put down to anxiety.

      It’s been hot here for a few weeks and it’s got much worse, contemplated A&E lots of times but what can I say?!

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    • Posted

      Thing with Biotoxin Illness is not everyone is genetically susceptible which is why it wouldnt necessarily effect others. My family and everyone I worked with was fine. Only around 25% of the population is susceptible and then you would need a trigger also. Which could be water damage, mold, pfisteria, lyme disease, some bacteria etc.I did not have much luck with the online Visual contrast test either but went to a doctor that specialized in it anyway because of the symptom checklist. At her office I did fail the visual contrast test. Might be worth trying.

       I feel your frustration but trust your body and yourself, my original doctor told me to suck it up lol. I was told it was many different things before I came across this. Hope this helps.

       

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    • Posted

      Thanks, I’m in the UK who don’t recognise anything accept basic explanations. Anything complex and they just turn you away with anxiety unfortunately or basic blood tests which show nothing.

      Only thing that showed was low Vit D which is 67 nmol now which is apparently normal. It was 24.

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  • Posted

    God bless your heart! Sounds so uncomfortable. Who have you been to professionally? Just the ER and then the smaller clinic? You need a Dr who gives a damn and really researches your symptoms and what the combination of them mean.

    Ladyjack51

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    • Posted

      Thank you for your message.

      It is hell and everyone thinks I’m making it up.

      I’ve been back and for to my doctor, neurologist, dermatologist with a full symptom list and they don’t look at the whole picture. If I ask for tests they say there is no need it’s anxiety.

      I’ve had therapy but had to stop because I couldn’t concentrate due to feeling so ill. 

      It all feels like a waking nightmare, I was active, running, sports etc. Now I feel sick all the time and shuffle and am tormented and it’s ignored.

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    • Posted

      I think you should call the Dr Phill show or go to his website. They do call you back but they are a huge resource for getting heard and hopefully getting help. You can also call a video Dr that Dr Phill owns called Dr on Demand. You can download that app see the Dr on your phone. They prescribe meds and it is very 1on1 which you need. Definitely wouldn't hurt and the website has so much info. Let me know...I'm praying for you!

      Ladyjack51

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  • Posted

    Hi Dar,

    I know how you feel re symptoms and no result on diagnosis. What i share with you is the red and hot face, fatigue, nausea, dizziness and muscle aches. sensitivity to light, smells, sound and heat too. My condition is cfs/me and it affects the auto immune system. My symptoms are all seen as linked to this. My sister several years ago had such a severe reaction to chemicals that she stopped breathing and went to hospital a few times. No diagnosis and no known cause. She was so ill she could barely get out of bed. She was convinced it was the vanilla candles i bought her (she had sniffed them before collapsing, boy did i feel bad for buying them!) It was Christmas time and she ended up throwing away her tree and even ornaments. Her chest would go bright red and hot as well as her face. This symptom she still gets (so do i) with certain chemicals like those scented sprays or plug ins in public bathrooms. Her anxiety is raised when this happens. I have accidentally inhaled carpet cleaner twice now and ended up with asthma like symptoms and had to go to hospital (long before cfs/me). If you have a sensitivity to a chemical, it could be this. My sister could hardly move with hers.

    I get the red and hot on my right side, my ear looks like I've been out in the sun too long and then it spreads to my cheek it will last a little while and then go. I don't always know why it happens.

    I also get a freezing cold nose and right foot-no one can tell me why this happens and I've had mri's and nerve conduction tests done. It's very strange having a freezing cold nose in summer! My cfs/me came after a car crash and so i have a definite start to my symptoms. Did you have a trigger to yours?

    I try to use only natural products to clean myself and my home. I feel this helps. If i smell strong smells, i try to avoid them or cover my nose. The bright sun has been affecting my vision so much and causing visual migraine recently and I'm waiting for my new sunglasses to arrive to help with that. My noise sensitivity i use ear plugs for, tends to be my right ear i get tinnitus too with. It's like the outside world is turned too far up? My symptoms fluctuate and thus presently i feel pretty ill in my darkened quiet room. If i went out like this, it would raise to very ill and so I'm going nowhere today!

    Be really kind to yourself. It's easy to feel miserable when you feel so unheard and so unwell. I get so spaced out and can't even formulate words sometimes or just stop half way through saying things but, i know if i don't do too much and rest then this is less likely to happen. My biggest challenge is making sure i don't do too much. Which i now have! I currently have double vision from looking at the screen so will go for now.

    Beverley

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    • Posted

      Thank you so much for the reply, I understand how difficult even doing that would have been.

      I don’t know what started it, it was gradual over a number of years of huge anxiety and stress. I had a breakdown I think.

      The scented candles resonates with me, I can’t stand those sticks you put in oil or potpourri it makes me vomit.

      I used a different shampoo tonight that was Apple and I nearly passed out because of the smell and it burnt my skin, I don’t know what’s happening to me it awful. My hair has gone incredibly dry and brittle and is falling out everywhere also.

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