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Old 10-17-2005, 10:44 AM   #1
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polik HB User
Long term illness, opinions anyone?

Hi
I am a 21 yr old male and I have been unwell for over 1 year now and I still do not know what is wrong with me.

It started, around July last year when I began feeling quite tired a lot of the time and I began to develop a constant cough. I carried on with my life and my work thinking that I would get better sooner rather than later. More and more I found that I was coming home from work and not wanting to do anything as I was to tired and had no desire to. I was also having trouble sleeping and was waking up in the early hours and not being able to get back to sleep. First of all I started going to the doctor for the cough as it was begining to really annoy me - kind of a nasal-drip going down my throat, I was having to clear my throat a lot and my tongue was often heavily coated. I was given nose-sprays and anti-histimines but nothing worked and to this day I still have the problem, the only thing I have been able to do is control it with mouthwashes and stuff.

I began to feel more and more lethargic and anxious - I began to really not want to go to work or see my friends. I began to get nervous about everything (not really normal for me), I also started to become very tearful.

So one morning after not being able to sleep, I went into the doctor and he prescribed me an anti-depressant which I began to take. Who saw my medical problems as completely seperate - i.e. congestion & depression. I still maintain to this day that everything started at the same time - Before it started I did not have congestion, headaches, anxiety, tiredness and depression.

I continued to struggle on with my life as best I could but after months I could still feel no improvement in my health. Whether it was due to the anti-depressants or just getting used to and accepting my situation, I did resume my social life on a relatively small scale. But 4/5 nights a week when I got home from work I would have to just veg in front of the TV and do nothing.

Today, I still do not know whether I am getting any better or not. Compared to about 1/2 a year ago I feel a bit more able to cope with life and a little bit less anxious and more sociable but I still have very little energy and I feel so 'spaced out' all the time. Hard to explain, but kind of a mental slowness/restlessness - i.e conversations can be hard work, find it hard to focus on things. Also, the congestion I experience has not really let up at all, although it sounds like quite a mild symptom - its v frustrating. Could the chronic congestion/nasal-drip(every day, not just after certain foods or anything) be related to the chronic fatigue?

I suppose what I am trying to ask, does this sound like it could be chronic fatigue syndrome? I have been for all sorts of blood tests, also I have had a CT scan to rule out chronic sinisitus (although it showed minor thickening in one of the sinises whatever that means) and I have taken anti-depressants for 9 months (stoped now) which certainly didn't solve all my problems - all-though thay may have helped. Oh and I have had allergy tests which didnt really show anything apart from a dust allergy. Also, I have tried varying my diet, stopping smoking, getting exercise (all though I find I cannot do as much as I used to be able to) and none of these seemed to give any relief to my symptoms (apart from the exercise helping with the depression symptoms)

I have tried to do some research and this is the only thing that I possibly think I could have, my doctor although being a nice bloke & v understanding hasn't really given me any concrete answers.

Can anyone give me any advice? Are there any more tests which I should make sure I have had? Is there anything else which this might be? It seems to fit with a lot of the symptoms of ME/CFS - although I dont get any really severe muscle pains and other peoples descriptions of the illness don't appear to fully click with me. Although thinking back I do remember coming down with something which felt like tonsilitis around about a month before this all started and one of the blood tests which I had around about Jan came back as saying that I had had glandular fever at some point as there was traces of it.

Should I try to seek answers or just continue trying to get on with life as best I can and hope that it will pass in time? (although it has already been so long!)

Suggestions appreciated, sorry for the long post - thanks for your time.

 
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Old 10-17-2005, 04:07 PM   #2
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NatashaW HB User
Re: Long term illness, opinions anyone?

A quick reply- will write more-

I suggest you get tested for mono and epstein-barr.
Also thyroid!! Diabetes, too.

 
Old 10-18-2005, 02:56 PM   #3
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Location: Ukiah, CA
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ukiahvalleymom HB User
Re: Long term illness, opinions anyone?

polik, Welcome!
Are there doctors in your area titled Endocrinologists? They are a good choice if there are no CFS specialists in your area. If there are CFS specialists, its a good idea to interview them. Find out if they are trained in the area of endocrinology, its very important.

When you said that your tongue is coated, is it with a white film? Have you ever had a metallic taste? How is your blood pressure? Low? and your temperature? Extremely low? or low grade? These are some of the other symptoms of CFS.

I kept going to the doctors until I had a dx, then kept going and searching until I found the best treatment for me. I wouldn't settle for no dx. There is something wrong and its not in your head.

I encourage you to not accept 'is this all there is too life!' You will find a good doctor if you keep seeking.

Are you in the United Kingdom? I saw the word 'bloke' My dad would say that at times, he was from England. You may want to start a post with: Anyone getting dx and treated in 'your country'? Just a thought
hang in there, uvm

 
Old 10-21-2005, 12:03 PM   #4
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polik HB User
Re: Long term illness, opinions anyone?

Hi, thanks for your reply's. When I next see my doctor I will ask about possibly seeing an enocrinologist if it is possible. I think I have been tested already for things like diabetes as I have had lots of blood tests done.
When I was talking about my tongue, I wouldn't say that its white film - I think that its mucous I get as a result of the congestion I get in my sinuses and I get it worse if i am not extremely rigourous with my oral hygiene. But like I say, I have had a CT scan and they didn't find any signs of major sinus damage. Not sure about my blood pressure, don't remember having it taken at any point.

Like you, I haven't accepted my situation and I have continued to go to the doctor and will continue until I get somewhere.
Oh yeah, I am in the UK - forgot that this website is mainly american...must remember to stop using words like bloke!!
Thanks for your help, I feel that I have a few useful things to ask my doctor next time I see him.

 
Old 10-21-2005, 11:34 PM   #5
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ukiahvalleymom HB User
Re: Long term illness, opinions anyone?

Polik,
Please don't quit saying 'bloke,' this board is so great because we get to meet people from around the world. Seeing an English word has meaning to me, for no longer do I hear my dad's voice. I miss him very much, so little things in life like a little word, bring a happy memory and that ministers me.

Thank you, uvm

 
Old 11-10-2005, 04:51 AM   #6
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fuzzymuzzy HB User
Re: Long term illness, opinions anyone?

Hi Polik, Hope this makes sense. When you say you had a constant cough did you have a very tight band feeling around your chest and that you were coughing for no reason but felt like you had to cough? ie. not bringing up anything not a tickly cough, not congestion. Only I have previously had the same thing as you mentioned.

My case is a bit complicated.... One Neuro Doctor after many tests said he thought I had ME/CFS which I was'nt too happy about expecially with the THOUGHT so he sent me to London Hospital where they really don't know whats wrong either. Although they didnt think it was ME/CFS!! so left in Limbo Land not knowing what's wrong! I have a Neurological problem with no Name! a medical mystery!! all joking to one side....its not very funny when your life is put on hold for over a year!! and have been suffering off and on for the last 5 years.

Just was curious about this cough thing as I had it for about 2 months all the same as you but with this band of tightness round my chest. I thought it was worse when I tended to over do things or stayed up too late?

Anyway would be curious to know if it is same or similar

ttfn fuzzymuzzy

 
Old 11-12-2005, 05:26 PM   #7
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ukiahvalleymom HB User
Re: Long term illness, opinions anyone?

polik and fuzzymuzzy,

Have you heard of Neurotoxin exposure, some of those affected by it have been previously miss dx'd with FMS or CFS/ME. Have you heard of Sick Building Syndrome?

Neurotoxins can come from mold or fungi, and can also come from other things, like excessive fish toxins, EBC, CMV, HHV6, lymes disease..., too.

There is documentation regarding Sick Building Syndrome, which is becoming a world wide problem and there also is documentation of the bulid up of neurotoxins in patients who have un-treated underlying infections in their bodies. Either way, there is a way to dx and treat it.

I have tracked my illness over the last 2 years, at first, I had no idea what was wrong with me. I believe my symptoms started neurologically, with brain fog, body fatigue, concentration and cognitive thinking problems. Multi-tasking and handling stress at work became unattainable (never bothered me before!) (I have worked for 30 plus years.) Exercize became so hard, felt as if I was paddling backwards, within an hour I'd be completely fatigued and in extreme pain.

My symptoms worsened and exasperated the longer I stayed at work. Initially, I had some days that were good, with treatment and time out of the office. When I tried returning back to work my symptoms flared with in days, additional symptoms appeared within weeks and within a month, it took everything to get through one minute of the day.

My doctor was puzzled, with all the treatment I'd been on he felt I should have been stabilzed...so he asked me to take the test again for the neurotoxins...this time the test was positive a couple of months ago. (I've had it all along...I messed up on the original test. Since then I have been on treatment and on medical leave.

Now I'm feeling great again, it took 2 months this time, I'm staying off of work until Feb '06, will see if I can maintain how good I feel, so far so good!

The symptoms include fatigue, weakness, aches cramps, unusual stabbing pains, sensitivity to light, tearing, blurred vision, headaches, sinus congestion, cough, shortness of breath, abdominal cramping, rashes, skin sensitivity, chemical sensitivity, difficulty concentrating, hard to find words in conversation, transposing of words or numbers, sound magnifies 100 times when in a hypersensitivity mode, metallic taste, numbness, tingling, vertigo, and mood changes. You may not have all of them, or all at the same time, they can change day to day.

To let you know I have had all of the symptoms, it also has affected my liver and kidneys recently. Probably due to the length of time of exposure, the longer I stayed at work, the sicker I became.

Check it out with your doctor, uvm

 
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