Undiagnosed circle of hell.

TrollHammaren

Best of luck with your appointment, and hope you had a proper happy birthday!

dlofnep

Thanks! Technically it's today, but celebrations were last night. Shook today though!

dlofnep

Ok update time.

Got my test results back from infectious disease specialist. All blood tests came back clean. They weren't willing to pursue the heavy metal toxicity, even though I advised them that I had basically no other routes and that I was forced to reject a job offer on account of me not being well enough to work a 40 hour week.

They instead booked me in for a brain scan which is not for another 6 months - Not that I expect to find anything in it. Their attitude of "If your bloods are ok, nothing is wrong" attitude is terribly demeaning.

I've made an appointment with the Drummartin clinic, as they work with unexplained illnesses. It looks like it's going to set me back a few hundred in total for all my testing, if not - even more. The money isn't an issue, as my health is the most important thing to me - but I'm not financially well off, and only work 20 hours a week - so I'm going to be broke for the next few months.

I'm a little upset that the Irish healthcare system has failed me. No doctors are willing to think outside the box.

If the drummartin clinic can't identify what's wrong with me - then I'm afraid I'll be at the end of the road. I don't envisage living and feeling like crap every day for the rest of my life. It's not for me. Fingers crossed that I can get this resolved, because after 5 years of no progress - it's become too taxing for me as a person. We're only human afterall, and can only take so much.

joebucks

dlofnep wrote: »

Ok update time.

Got my test results back from infectious disease specialist. All blood tests came back clean. They weren't willing to pursue the heavy metal toxicity, even though I advised them that I had basically no other routes and that I was forced to reject a job offer on account of me not being well enough to work a 40 hour week.

They instead booked me in for a brain scan which is not for another 6 months - Not that I expect to find anything in it. Their attitude of "If your bloods are ok, nothing is wrong" attitude is terribly demeaning.

I've made an appointment with the Drummartin clinic, as they work with unexplained illnesses. It looks like it's going to set me back a few hundred in total for all my testing, if not - even more. The money isn't an issue, as my health is the most important thing to me - but I'm not financially well off, and only work 20 hours a week - so I'm going to be broke for the next few months.

I'm a little upset that the Irish healthcare system has failed me. No doctors are willing to think outside the box.

If the drummartin clinic can't identify what's wrong with me - then I'm afraid I'll be at the end of the road. I don't envisage living and feeling like crap every day for the rest of my life. It's not for me. Fingers crossed that I can get this resolved, because after 5 years of no progress - it's become too taxing for me as a person. We're only human afterall, and can only take so much.

Sorry to hear that the test you underwent are still inconclusive. It will be interesting to see what the brain scan reveals. I have not had a brain scan myself and it is something I wish to have done in the new year just to put my mind at rest that that angle is covered.

I researched the Drummartin Clinic and it does not seem like an option for me right now. Most of the tests they conduct will have already been covered by your GP so make sure you bring the results of previous tests with you in order to minimise costs and time.

I am at a stage similar to you where I have tried most ways to resolve my health problems and have almost given up on trying to find a cure and just try to manage my life the best I can within the limitations of my health. It is very hard to take especially when you see all your friends moving on, developing their careers, starting families etc but at the end of the day if you can be honest with yourself and say that you have done all you can do to make your situation better then just accept it as one of the many many mysteries of life.

Anyway take care man and I hope these current problems are resolved for you in the near future.

kangaroo

joebucks wrote: »

I am at a stage similar to you where I have tried most ways to resolve my health problems and have almost given up on trying to find a cure and just try to manage my life the best I can within the limitations of my health. It is very hard to take especially when you see all your friends moving on, developing their careers, starting families etc but at the end of the day if you can be honest with yourself and say that you have done all you can do to make your situation better then just accept it as one of the many many mysteries of life.

Sorry to hear of your problems also.

However, it is useful for people to find out what is wrong with them. I don't know all conditions but I know that how one might manage ME/CFS/Post-Viral Syndrome (which is what I have) is not necessarily the advice that would be given to somebody who doesn't have the condition (it could be the opposite in some ways) - my condition (and long-term health) was damaged by not being diagnosed quickly and following advice that wasn't suitable for somebody with ME/CFS/PVS. This may be the case with some other conditions as well.

dlofnep

I'll be sure to bring my results with me. They are going to cover many things that I have not yet covered - which they explained on the phone. The way I see it is it's worth a shot. I'm certainly not going to accept this as a lifestyle. I think the only thing that will get me through this is persistency. If I get to the point where I feel like I've done everything humanly possible, then I'm going to call it a day. I only want to live if life is worth living. Right now, it isn't. You'll have to forgive my honesty as I'm not doing it for sympathy. Just need somewhere to vent.

joebucks

kangaroo wrote: »

Sorry to hear of your problems also.

However, it is useful for people to find out what is wrong with them. I don't know all conditions but I know that how one might manage ME/CFS/Post-Viral Syndrome (which is what I have) is not necessarily the advice that would be given to somebody who doesn't have the condition (it could be the opposite in some ways) - my condition (and long-term health) was damaged by not being diagnosed quickly and following advice that wasn't suitable for somebody with ME/CFS/PVS. This may be the case with some other conditions as well.

Cheers Kangaroo. I have seen many different doctors and received a few different possible diagnoses. Some doctors reckon it is ME, others have called it PVFD, another reckons it is PTSD and others have suggested it is a genetic disposition. So an exact diagnosis has not been reached and it has been trial and error for me in what benefits me. I will continue to persevere to attain full health but I have quite low confidence in the health system. Thanks for your concern. I hope you will see some improvement in your condition in the near future.

dlofnep wrote: »

I'll be sure to bring my results with me. They are going to cover many things that I have not yet covered - which they explained on the phone. The way I see it is it's worth a shot. I'm certainly not going to accept this as a lifestyle. I think the only thing that will get me through this is persistency. If I get to the point where I feel like I've done everything humanly possible, then I'm going to call it a day. I only want to live if life is worth living. Right now, it isn't. You'll have to forgive my honesty as I'm not doing it for sympathy. Just need somewhere to vent.

I hope they can shine some light on your problems and I look forward to hearing how you go. Unfortunately the reviews of Drummartin Clinic has been mixed so far so hopefully they can help you out.
I can feel your frustration at the situation. It really is a nightmare however alternatives however the alternative to carrying on is even grimmer. If you were to receive a diagnosis of just say MS or possibly even a brain tumor would your outlook on the future be the same? Also doctors may not have the ability to diagnose your problem at present however that does not mean in 5-10 years a solution will not be available.

dlofnep

I'll let you know how I get on.

They test for heavy metal toxicity, so that's one thing I'm very keen on crossing off my list - as I became ill very shortly after getting fillings for my first time. If I'm wrong about it, as least my mind will be clear.

kangaroo

I would urge anyone considering taking their own life to get psychological support of some sort e.g. counselling - perhaps ideally a counsellor who has some experience of dealing with patients with ill-health or disability.

It is quite possible to have a meaningful and enjoyable life despite having a long-term illness. It might not be exactly the life one had planned of course and may require a change of perspective.

Also accepting one has a long-term illness doesn't not necessarily meaning one has given up hope that one's health will ever improve (which perhaps could be summarised as "accepting one has long-term health problems does not equal giving up"). And just because there may not be a cure for a health problem at a particular time does not mean one's quality of life can not improve with the right medical and other supports and management.

_Whimsical_

dlofnep wrote: »

I'll be sure to bring my results with me. They are going to cover many things that I have not yet covered - which they explained on the phone. The way I see it is it's worth a shot. I'm certainly not going to accept this as a lifestyle. I think the only thing that will get me through this is persistency. If I get to the point where I feel like I've done everything humanly possible, then I'm going to call it a day. I only want to live if life is worth living. Right now, it isn't. You'll have to forgive my honesty as I'm not doing it for sympathy. Just need somewhere to vent.

I can understand what you're saying and I think a lot of people who have faced long term illness and the endlessness of it have felt the very same. Particularly when you're waiting in limbo with no diagnosis. It's like searching for a release valve somewhere and when you can't find one ending it all can look like the only way out. But what Kangaroo has said is true. You do learn to adjust to physical limitations in time and you do find richness and value and happiness in life again. If you look around you find lots of people are adjusting everyday to all sorts of circumstances they'd never have chosen for their lives and they manage. It's a painful adjustment but it's one very much worth trying to go through and you are a more empathetic and stronger person for doing so.

In my own experience I had been ill for a long time, got well ,was ecstatic and then had a very severe relapse a few years ago. I was devastated by it and became completely fixated for a while on somehow getting better again. I was reading up about it all the time, going to every doctor under the sun & hearing the same thing from them all. I did things I'd never normally have time for. If someone had a religious aunt with a relic of some "healing" saint or other I was suddenly all "bring it on!"...a few years before I'd have rolling my eyes.

I was in a constant state of either so sick I could hardly roll over in bed or I was a little better, well enough to sit up a bit, and using that extra energy draining myself being hysterical thinking about life 6 months down the line and how I wouldn't be able to bare it.Any strength I had was used exhausting myself going to Drs who were all telling me they couldn't help. I fully believed that spending every moment trying to fight my way out was the only and best option. In the end it wore me out completely and looking back now I regret the level of intensity I devoted to it. When I finally had no more to give I realised that all I could really do to help myself was the small day to day things like try to stay as calm as possible and not be thinking 6 months or a year down the line so I didn't go mad. I also found it helped keep my body in a relaxed state where it could heal, not even nearly fully, but certainly it helped a bit.

If you tell yourself "if this doesn't improve I'll kill myself" you're putting yourself in a life or death situation. That is way too intense for someone who is well not to mention someone who is sick. It's impossible for your body to heal at all or recover at all in that place. It will make you worse even though it might sometimes feel like a comforting thought.

Go to your next appointments and if there's no answers there then try and sit back and let go a bit.Try and eradicate the activities and stresses that are making your life a struggle right now. Get your shopping delivered from online instead of going out for it etc, all the small things. Give it a little while, a few months, of going with what your body wants and not thinking about the future and just see if it helps you physically. It will help you psychologically to cope & you'll be in a stronger place to look at things then. Accepting things for a while is not giving up on getting better. Time, rest and relaxation heals things you don't expect, medical science moves on over the course of time & makes unexpected breakthroughs. There is a lot of genuine reason for you to be hopeful. Don't be the one to rob you of a future. Your answer might not be here now but you don't know that it's not only months down the line.

And you aren't alone in feeling this way. It's a dark place but others have been there and come through it and you can too. A counsellor is a very good idea. Someone you can share these thoughts with and vent to and who might have ideas you haven't considered to help you cope. You owe it to yourself not to give up.

dollyk

may seem strange , but ny husband got ill about 4 years ago
turns out he was allergic to the plug ins i was using about the house.
maybe not related to your symptoms, but who would have guessed.
He was ill for ages and someone suggested it was something in the house.
I started to eliminate all my cleaning products, and last to go was plug in air fresheners, oh and in his car too...mad or what ?:eek:

kangaroo

By the way, some people may feel that going to a counsellor is accepting one has some sort of psychological problems.

However, there is another way of looking it (which I prefer): if one has long-term health problems which are currently affecting one's quality of life, and perhaps might do so for a while (or more) into the future, it is like grieving. It would generally be considered "normal" to grieve after, for example, the death of a spouse/partner or parent (for example). Similarly one can grieve for one's losses due to ill-health. But just as one's life doesn't have to be over after a death of a loved one (one sort of loss), similarly one's life doesn't have to be over if one is not in full health (another sort of loss).

dollyk

have you had your boiler cleaned, and chimneys and gas fires, stoves checked

WildOscar

kangaroo wrote: »

By the way, some people may feel that going to a counsellor is accepting one has some sort of psychological problems.
.

There is a psychological aspect to CFS, even Dr Weir says so.Stress can make fibro and CFS worse There is a psychological aspect to all illnesses

LegacyUser

dlofnep let us know how you get on at the Drummartin Clinc in regards to your illness. I'm in two minds if i want to head up there to see what its about. 10 years now I have been suffering with ( i don't even know what to call it ) CFS/Post Viral ... it has pretty much destroyed my life, my twenties were lost. I am no better today than i was 10 years ago when i first started experiencing symptoms in fact i would say I'm worse. I've tried loads of treatments both medical and alternative and nothing has significantly helped.

dlofnep

I'm going up Thursday. I'll post a full account when I get back.

dlofnep

Also, please watch this video and tell me what you think of it: http://www.youtube.com/watch?v=ZAhu6oa_2Ss

It's a little bit long, but it gave me inspiration and hope.

tbh

dlofnep wrote: »

I'm going up Thursday. I'll post a full account when I get back.

Good luck man, really keeping my fingers Crossed for you.

LegacyUser

If you can i would really appreciate an update after your appointment, you don't have to go into great detail just whatever your comfortable with.

I haven't really tried anymore treatments in the past year as being honest I'm sick of it all at this stage. The only things i had looked at were the Drummartin Clinic or going to see Dr William Weir but after attending his talk as he said himself there is no magic bullet. Im hesitant on spending more money on an illness that is still hardly recognized nor understood. Since i became ill i have spent tens of thousands and got nowhere, no closer to feeling better or no closer to a proper answer. I really don't know what to think anymore I'm physically, mentally and emotionally numb.

The video is interesting but it doesn't fill me with hope. To me, and maybe I'm being negative, it triggered a few alarm bells that put me off. I did the whole diet, clean living vitamins etc for over a year and didn't improve. I felt the same as anyone would with cleaning up their diet but it did little to relieve any symptoms. His approach seems nice but when i google his website he sells vitamin packages etc so it just doesn't sit well with me unfortunately.I could be completely wrong but i went through something similar and i didn't
feel any significant benefits to my illness.

I wish you all the best on Thursday i really do, hopefully you may get closer to an answer and of course the dream is an improvement and a road to full recovery.

dlofnep

I'll be as descriptive as possible, although I don't think I will have much to say until I go back for results (whenever that might be)

Splendour

Hi dlofnep,

The pain in your kidneys sounds like it could be adrenal related but if you're attending the Drummartin clinic you will more than likely be asked to take an adrenal test. You'll also probably be asked to take a gut test but given the amount of similar tests you've had done before, I would be wary handing over cash for this. If I were you, I'd ask for a full thyroid panel testing to be done.
A word of caution:you may be advised that you need lots of supplements which the Drummartin clinic just happen to sell...

Keep us posted...

sam34

splendour, as has been posted before in the thread, please do not make any sort of attempt at diagnosis. this includes "it sounds like...."

Splendour

Oops, sorry.

com1

Dr John McKenna in Naas might be worth checking out.

TrollHammaren

Wishing you the very best of luck with it, man!

LegacyUser

Hi,
Just wondering if there is any update on your progress and to see how you got on?

eilo1

Would love to know how you got on OP?!?

sam34

lads give it a rest. the op intended coming back to update the thread. given that he hasnt, i 'd imagine he has deliberately chosen not to, for whatver reason. its an illness that has affected his life significantly for years so i doubt he has just overlooked posting here.

if he wants to, he will. but maybe he doesnt wwant to.

tbh

have been banned from politics for quote: "In future, if you can't post on topic, don't post."

I had responded to a post which was clearly created to bait me and was itself off-topic. Bearing in mind, it took 2 minutes for the moderator to infract my account, while a proverbial shít-storm of off-topic nonsense was allowed to continue for 5 pages in another thread, without once an interjection from a moderator - despite the fact that I had reported a post an hour beforehand.

It seems it's ok for some posters to continue to take threads off-topic and bait unmoderated, while anyone who responds are reprimanded.

My patience with boards.ie has long ended. I've decided to no longer post on here. A suitable replacement moderator will need to be found for the RaN forum. I'm sure they can decide amongst themselves who is best suited. If my account can be closed, that would be greatly appreciated.

All the best,

Dlofnep.

Dl, if you do come back and want to update this thread, just pm one of us and we'll happily re-open it, however for now, thread closed.

dlofnep

thanks tbh

Anyways a brief update. I visited drummartin. I have to say - the doctor was very good to listen to me. It felt like he actually cared, and wasn't quick to get me in and out the door. I explained my illness, and my symptoms. I'm going to be doing a number of tests - The first one is 4 stool samples. At my own request, I requested a heavy metal toxicity test, which I'm doing tonight and sending off tomorrow. I'm also doing a number of blood tests, and an adrenal test.

Just examining my symptoms on a personal level over the past 3 weeks or so I'm been trying to patch things together.

Here is my uninformed opinion.

I believe that there are toxins in my system, which I am unable to flush out. I notice that I have alot of constipation, but that if I eat real healthy food (we're talking, stone-age diet) and get good bowel movements with apple stew - my symptoms are greatly reduced. Last week, I had 5 days which almost symptom free. It's the first time in about 2 years that such a thing has lasted beyond a few hours or a day.

Pardon the graphic nature of my description - but I had a really good bowel movement, which must have been backed up for about 4 days on the day before those 5 days. I only started going downhill again when I got back to work and couldn't stick with my diet. I think dairy and caffeine, along with high-carb foods is a big no-no for me - but it's really hard when I work. I need to try and be more disciplined.

The fact that I can be symptom free leads me to believe that there is an underlying cause for my problems. I still believe it is due to mercury toxicity. I believe that when my bowel movements are good, i am flushing toxins out of my system at a good enough pace to keep them limited enough to where I'm not bogged down.

I've also been trying to define the description of my symptoms and really breaking down what I'm feeling. That has been the hardest part, as I've usually just been able to describe it as "feeling generally unwell".

The first thing is the brain fog. I had none of this over those 5 days, but when it comes - it can come hard. I have brain fog right now, and I feel really detached from reality. It's hard to explain. It's like I'm almost stoned, but without the benefits of being stoned! (IE: Happy and chill!)

Secondly, my stomach seems to get nausea when I eat specific foods. I'm not exactly sure what these foods are yet, but through diet elimination I'm working it out. I know dairy causes my stomach to be acidly, and causes stomach pains. I think cutting out dairy will resolve this.

I think caffeine might be a trigger for brain-fog, although I'm not really sure.. But it certainly doesn't help. I've tried drinking caffeine free tea in work.

I think I need to fix my bowel, so I'm getting regular movements and fix my diet to accomodate that. I'll see how the mercury levels come back, and based on that - I will decide on whether to have my fillings removed. I have already formulated a diet and supplement plan to help move the mercury out of my system after the filling removals.

The reason why I'm so set on mercury toxicity is that my health was perfect up until I got fillings. I remember my mam said to me 2 or 3 weeks after my fillings that I had been unwell ever since I had got them. It has stuck with me, so I think there is some method to the madness.

I don't believe in accepting this as normal. I believe I can conquer it. I have been having limited success, and believe that by being persistant, I can overcome it.

I will post an update when I get my test results.