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bumble
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05 Jun 2012, 2:54 pm

I have been having some health problems, and because of my social awkwardness (difficulty getting words out around people and social anxiety etc which I have always had) my drs wont take me seriously. Therefore I have to resolve these health problems by myself and after trying many things from diet to alternative therapies to medications for depression and anxiety etc I am still experiencing the symptoms and they are gradually getting worse. Therefore I wonder if anyone please has any suggestions (i know you can't diagnose).

Here is what has been going on:

I have been struggling with similar symptoms for years now. To put it in a nutshell:

Between the ages of 21 and 25 I had a slight drinking problem.
At 25 I quit and went through withdrawal.
Although I had had mild anxiety and depression symptoms prior to that, during withdrawal new symptoms appeared (other than withdrawal symptoms).

My skin would feel like it was burning (on fire pain sensation)
I would have episodes which started with the same smell of burning rubber, then a deja vu that gave me goosebumps, then a wash of extreme fear from nowhere (diagnosed as panic attacks because they freaked me out and I would hyperventilate following them...same with the burning skin pain because it hurt...)
The burning smell attacks continued up to five years ago and also would sometimes include missing time (only minutes) following them. I had stopped hyperventilating at this point as I had gotten used to them. I did see a dr about the missing time and he said I must have gotten 'distracted', but it felt vastly different to distraction as there was no awareness of anything during the missing time and it was always preceded by the burning rubber smell, then deja vu, then wash of fear. That all stopped some years back.

6 months after quitting drinking I am still getting those attacks (obviously), burning skin pain (not heat) all over torso and splitting headaches diagnosed at the time as anxiety. I was also experiencing stomach pain. Spent a night in hospital as could not eat or drink but all tests were normal except for abnormally high ketones. Also had other symptoms around this time such as my vision cutting out completely for short periods of time (a few seconds) where all I could see was a sheet of brilliant with light and nothing else. Also I would burn my leg in the bath as my leg did not tell me the water was too hot.

Headaches etc continued and was sent to psychiatrist who put me on antidepressants.

2 Years later managed to get a referral to ENT as could not breath through my nose. Sinus problem and allergy diagnosed (duck feathers). Surgery performed and that particular type of headache vanished. Bed sheets changed as I was sleeping under a duck feather duvet and burning skin paint stopped. Other symptoms continued for a while and I was kept on antidepressants. However burning rubber smell attacks became less frequent and a for a few years I felt quite well.

Then I caught a virus that knocked me for 6 and it was all down hill from there.

Migraine type headaches started. Other symptoms appeared. IBS type symptoms (diarrhoea), extreme exhaustion, stomach pain in upper abdomen, episodes of peripheral neuropathy, dizziness, blurring of vision (convergence issues caused by weakness of the eye muscle), night sweats, rubber band snapping sensations but only in certain patches of skin (not all over and always in the same patch of skin when it appeared), muscle spasms, visual disturbances (dimming of vision alternating with light sensitivity, flashing lights in peripheral vision, black spots in vision).

This came and went multiple times over the years where I would have complete remittance from the symptoms at times and then would relapse again.

Fast forward to 2 years ago and symptoms hit a major bad time. They have stopped remitting and have gone chronic and new symptoms have appeared in the last few years alongside the older ones:

Feelings of numbness down the left side (face, arm and leg) although everything still moves there is a feeling of heaviness and clumsiness on the left side compared with the right which feels fine.

Migraines move from side of head (left side) to back of head and induce sensations of on going vertigo (feeling of constant movement and accompanying nausea that comes and goes), worsening of visual disturbances (everything appearing to glow and glitchy vision), difficulty thinking and organising my thoughts, inability to understand written text (comes and goes and is only brief), word finding difficulties, memory problems (went from being someone who got A grades without needing to revise for exams to someone who sometimes cannot remember what I did 5 minutes ago), confusion (I keep getting up thinking I need to do something even though I didn't actually want to do anything at all. Alternatively I get up to do something and walk into the wrong room, forget what I got up for and go sit back down), circadian rhythm has f****d up and I can only sleep during the day. Also Ice burning sensation appears in skin on face but comes and goes and diarrhoea becomes so bad that warning is not always given (bowel just goes on very bad days).

I get the odd week or two where symptoms ease up slightly but I no longer get complete remits any more. I have fallen behind on my degree and am not well enough to get the work done most days. My house is not getting cleaned because on bad days I can't stay up right long enough with the vertigo to do anything (although I don't lose my balance I do feel awful and unsteady if I stay up right for too long) and some days I am not even able to cook for myself so just don't eat even though I am hungry and want food.

I have reported it to the drs and because the blood tests came back normal my symptoms are put down to anxiety and depression and I am sent for therapy which does not work because the symptoms are not linked or dependant on my mood (ie manipulating my mood will not magically make me feel better, relaxing has no effect on the symptoms and exercise brings the exhaustion on and makes it worse. Exhaustion is physical as well as mental but there is no muscle weakness as such although I can loose power in my arm if I use it at times but not often).

I have given up on drs as I do not feel all those symptoms are psychiatric and I know I am not going to get any help from my gp other than more antidepressants which can bring the symptoms on worse (ie I had such a bad migraine after taking an SSRI that I sound drunk and couldn't walk straight for week and I also had a bad reaction trycylics where by I had vomiting and diarrhoea simultaneously as well as a return of the burning skin pain and rash). Mirtazapine can trigger migraines if I take them also. Manipulating my mood does nothing to help so therapy is useless.

I need to resolve this myself some how. But I am stuck now.

Also since weaning off mirtazapine...intermittent return of burning skin pain this time preceded by intense extreme itching that becomes so intense its actually painful. Eliminated when I stopped eating processed foods. The only exception was a reaction to a nicotine patch last week where my whole arm broke out in a rash and itched like crazy. Return of sinus type headache also and congested nose that I can't get rid of.

Mirtazapine has antihistamine qualities so I have a ? over that lot.
-------

Any help appreciated. I know it's off topic but as I have social awkwardness I cannot get help from my drs as they don't take me seriously. They usually just talk to me like I am an idiot, give me antidepressants and send me for therapy that does not work. So I am very much on my own with this. I also do not have a lot money so cannot afford private health care. there fore I must find the problems and solution myself.

Thanks.



ChrisP
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05 Jun 2012, 3:31 pm

I wouldn't dare to try to diagnose a condition from your account, but I hope you get the help you need from somewhere. Part of the problem may be that Aspies can struggle to correctly report e.g. level or exact location of pain.
The trouble is, on one hand self-diagnosis is a very risky business. On the other hand, you clearly have a G.P who has made up his mind, and isn't going to unmake it very easily!
My G.P got it wrong with me and nearly caused my death, so I just wanted to offer you my sympathy and understanding. Keep at it!



Washi
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05 Jun 2012, 3:35 pm

I'm so sorry to hear you're going through this, I don't have all of your symptoms but I've gone through the same experience of having doctors repeatedly dismiss very real medical problems. I know what it's like to have the whole side of my body from my cheek to my knee go numb, it's scary! I had constant neck pain and my arm would go numb, I was very tired and cold all of the time, sometimes I'd get very sick ... I won't go into all my problems but I've been dealing with them for over a decade. I figured out one of my main problems was a bad wisdom tooth, do you still have yours? The oral surgeon who pulled my tooth didn't really want to help me so I still have problems he didn't address, I don't have dental so I still have 3 impacted wisdom teeth and another tooth that was affected by the one I had pulled ... the tooth I had pulled was the worst one (and I had a cyst behind it which was probably poisoning me) ... everyone told me there was no way my tooth could be causing any of my symptoms, they were wrong. My neck still hurts a little and there's still something wrong but my arms and face never go numb anymore I'm nowhere near as bad off as I was. I found probiotics, vitamins esp. vitamin D, fish oil and avoiding certain foods helped me cope. When things got real bad I even ate crushed raw garlic because it's a natural antibiotic. I also had loose stools (tmi?) for a long time, I got back to normal by no longer putting cream in my coffee (lactose), taking probiotics, and eating less citrus which I was apparently sensitive to and never realized before. I don't mean any of what I say to be medical advice and am not suggesting you do anything I did without consideration, that's just my experience so you're not alone. I hope you're able to find real help.



Washi
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05 Jun 2012, 3:37 pm

I also have a very high pain tolerance so doctors never take my complaints seriously because I don't appear to be suffering.



ChrisP
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05 Jun 2012, 3:37 pm

PS: Re-reading your description of your symptoms, it strikes me that any decent GP should have referred you for a brain scan a good while ago.



ChrisP
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05 Jun 2012, 3:42 pm

Washi - my dr thought I wasn't in 'enough' pain to be 'really ill'. In fact I had peritonitis where a tumour had eaten through the wall of my intestine then ruptured!



redrobin62
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05 Jun 2012, 3:49 pm

Withdrawal from a 'slight' drinking problem? Denial is not just a river in Egypt! :D



Washi
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05 Jun 2012, 3:55 pm

ChrisP wrote:
Washi - my dr thought I wasn't in 'enough' pain to be 'really ill'. In fact I had peritonitis where a tumour had eaten through the wall of my intestine then ruptured!


I believe it, my Mom almost lost her arm to a bone tumor because no one took her seriously until it was almost too late. In addition to what I've already posted I was born with a rare birth defect, a solid bone obstruction that completely prevented me from breathing out of one side of my nose (it still ran though :eew: ) and doctors just kept prescribing me decongestants without ever giving me a second thought, until one day when I was 16 and finally got angry and condescending towards one of the doctors it had become obvious at that point my parents were always going to take the doctors word over my own and were never going to stand up for me on that issue.



Sharkgirl
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05 Jun 2012, 4:32 pm

I think u should see a neurologist, and a immunologist if you can't explain symptoms write them down as u have and also write why - aspergers.
You need to communicate this and the best way is in written form
Good luck


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bumble
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05 Jun 2012, 5:33 pm

Washi wrote:
I also have a very high pain tolerance so doctors never take my complaints seriously because I don't appear to be suffering.


That's the thing with me in a similar way...I put a brave face on it and people cannot tell when I am in distress, either in pain, in discomfort or upset...only that I am socially awkward and that makes them think I am slow (or seems to).

Other than dark circles around my eyes despite getting adequate sleep and a naturally pale complexion I don't look ill or in pain. I shouldn't be so stoic but if I amp it up to try and show them I am in pain, then they think I'm having an anxiety attack.

Just can't get this communicating of feelings right somehow. Its like when I am happy, people think I am sad and keep telling me to cheer up or smile. ERrrr....



bumble
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05 Jun 2012, 5:45 pm

redrobin62 wrote:
Withdrawal from a 'slight' drinking problem? Denial is not just a river in Egypt! :D


lol yes well it was a long time ago (not consumed alcohol in 12 years now) and as it's never resurfaced I consider it cured. Therefore it's just a slight glitch in my history.

Cheeky sod :P



Moonpenny
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05 Jun 2012, 6:06 pm

Have a look at descriptions of M.E. This condition is sometimes, utterly ludicrously, also called 'chronic fatigue syndrome', a name most sufferers will have nothing to do with.

I'm not sure all your symptoms could be attributed to it, especially the level of pain with the burning skin – although abnormal skin sensations, and severe burning in the muscles, are common. Many of the issues you describe do chime with me, however. I've had it for over 35 years, and have suffered from most of the legion of symptoms at some stage during that time.

If you're going to read about it, I'd strongly recommend you look at the web sites of organisations and associations for sufferers. Because the cause isn't known and there is no treatment other than for specific symptoms, it attracts huge numbers of snake oil pedlars and fake 'research'. If you look at the genuine charity web sites, you shouldn't go far wrong.

I hope you manage to find some answers, and that your symptoms start to improve, whatever the cause of your severe ill-health. I went 23 years before I got my M.E. diagnosis and 50 before I got my Asperger diagnosis, so I know how extremely difficult it is to have an undiagnosed condition.



Pipilo
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05 Jun 2012, 6:23 pm

It sounds like you need a new GP, if at all possible. Another approach would be, next time the neurological symptoms and headache get really bad, go the the ER. In America, a profound headache with blurry vision and word-finding difficulty will usually get you a ticket to a CT scan. At least then, you could rule out TIA's (transient ischemic attacks, kind of like mini-strokes). I work in a hospital, and part of my job is getting doctors to order appropriate tests and procedures for my patients. Being extremely concise, sticking to the facts, and focusing on the worst symptoms will engage their attention better than longer explanations detailing every symptom, major and minor. I literally try to keep every conversation with a doctor less than 30 seconds, and if I really stick to the facts, I can usually succeed at this, even in complex situations. They usually order whatever I was suggesting.

It seems illogical that they are dismissing you based on your labwork. It really sounds like you need some scans and some way more extensive testing.


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06 Jun 2012, 1:19 pm

Pipilo, oftentimes I wonder what exactly the purpose of doctors is... what's the point if they stubbornly won't even be scientific about a diagnosis? (This especially applies to subtle ailments such as this, but if doctors will only deal with the obvious, again, what's the point?)



CuriousKitten
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06 Jun 2012, 1:32 pm

try giving the doctor everything in writing -- I often found I cannot communicate clearly when I am unwell, and this at least facilitates communication.

Make certain you have a good nutritional baseline -- take vitamins and other supplements if you have to. Even if a nutritional deficiency isn't the root cause of all the problems, they may be contributing to some of them, and clearing up any will make the others more obvious.

imho: first year medical students should be required to basic computer troubleshooting -- If they can't troubleshoot computer problems, why should I trust them to troubleshoot anything more important?