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 March 26, 2011, 01:42:42 AM
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Newbie
Posts: 7
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Hi all, just came across your forum on yet another search for answers on the internet and thought I'd share my story, it may be a little long winded for which I apologise... I'm male, 38 from the UK and up until 30 months ago had a normal life, married, 3 kids and my own business, everything going well, the only notable events before this time were having a severe herniated disc in my lumber in 2004 and being bitten on both feet by what I presume were ticks in 2005 (they were small black things under 5mm across filled with blood when I saw and removed them so I guess they were ticks), the doctor gave me a weeks worth of antibiotics, looking back from this point on things slowly got worse, lack of energy, difficuly just completing my workload and generally feeling rough. In November 2008 I decided that I should give up smoking, and used Champix for a week, during this time I felt progressively worse and asked my GP if this was normal, she said it was, so I carried on, on the 7th day I ended up in hospital with cold sensations running up and down my legs and crushing chest pains, they sent me home at 3am after 14 hours without saying anything, 12 hours later I was back, feeling worse than the first time I was admitted, and stayed in for 4 days, the only outcome was that they told me I had type 2 diabetes. On my 3rd day in hospital I had just eaten a meal and stood up to walk across the ward when I felt almost drunk, and couldn't walk in a straight line, so I told the staff, and nothing more was said about it, the same on my day of release, and again nothing said. Since then I've had various symptoms come and go, had an MRI of my brain, which was clear, countless bloodtests, all saying high cholesterol, high cortisol but nothing else, my HBA1C's have been coming back at non diabetic levels, 5.3-5.8, I've also had tilt table testing (clear), seen an ENT specialist who discharged me, gastro who discharged me, an endocronologist who suggested I'd had a brain stem stroke, or maybe it was because I'm getting older  , a Lyme test, which was clear, you name it, its probably been done, the most recent of which was an upper endoscopy (thoroughly recommended for an interesting morning out... So, some of the many symptoms I've suffered over this time, I cant remember them all, my memorys bad now, but it will give you an idea; Constant lightheadedness, always there, gets worse when I eat, lack of balance/coordination, visual disturbances, from light sensitivity to flashes in my vision, a flashing thing that looked like lightening arouns one eye to very short spells of complete sight loss, lasting around 30 or so seconds at a time, severe rib pain, numbness in my fingers, numbness in left arm, distended stomach, gastric bleeding, numbness in my scalp, tongue and top lip, muscle cramps, night sweats, cold feet and hands, excessive sweating during the day when its cold, lack of energy, very pale nail beds, I'm easily startled, get very emotional (yeah, my wife laughed the first time that happened lol), grumpy as hell with everyone around me, I suffer from agoraphobia, Rreynauds syndrome, depression, anxiety, and a whole host of other things that come and go in cycles, or so it appears, I can no longer drive, so I've lost my business, even typings a pain and I have to reread everything several times as I mix my letters constantly, especially "o" and "u", I often over reach whe I go to pick something up and, I dont know, just a whole host of other stuff... So there it is, long (again I apologise) and very boring, so far I've seen 11 different GP's (my doctors appears to have problems keeping staff), 3 or 4 specialists, and my diagnosis varies between brain stem stroke, "all in my head" to "sometimes we never find whats actually wrong, or it could take several years to come to light", all I know is that I'm prety scared right now, in the main for my kids if anything happens to me, and also for my marriage which is falling apart rapidly while my wife tries to run the house, look after 3 kids (1 with Aspergers and OCD) and pay the bills, while I sit stuck in this little world that she doesn't understand and cant see... Thanks for reading 
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March 26, 2011, 06:07:07 PM
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Newbie
Posts: 6
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Andy,
It sounds like you might have Lyme Disease, especially since you found ticks on you. Lyme Disease is a very serious problem and is overlooked by most doctors because of their ignorance about it. I myself have chronic Lyme Disease, and have very similar symptoms you do. Have your doctor take a Western Blot blood test. This is a lot more accurate than the regular blood test. I try to tell as many people as I can because of how serious Lyme Disease is. It devistates many people's lives and it is becoming a bigger problem than what the general public thinks. I would go to your doctor and tell him to run the Western Blot and get all of the different bands run that they can. A lot of times if an individual has Lyme, they also will have coinfections which can be as bad or worse then the actual Lyme bacteria. Good luck.
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March 27, 2011, 12:44:34 PM
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Newbie
Posts: 7
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Hi, and thanks for your reply, I've looked into Lyme, and along with others it does fit the symptoms, especially the cycling of them, and I did manage to get the doctor to run an ELISA test, which came back negative, but it would appear that this is not uncommon, I did read somewhere that it gives 60% false results... I also asked the doctor about getting the Western Blot done and based on the results of the ELISA they wouldn't, he did try to rerun that test but the hospital lab wouldn't, stating that as I had already had a neg it wasn't worth doing on cost grounds, so I approached a couple of places that will do the test and send it over to a lab in the states, but they will only do this on a doctors referal, which the doctor wont give me The strange thing is that theres an NHS lab in Inverness that does the WB but they wont give me access to it through that route either, and from what I have read getting the test done in the UK is only half the battle as finding a doctor that can read the results and who actually knows what they mean and how to treat it is very hard also.
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April 05, 2011, 10:24:54 PM
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Newbie
Posts: 6
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Hang in there. I don't know why your doctor won't work with you. Maybe you need to change doctors. I had to do that. I finally got a doctor now that will work with me. You need to get in touch with a Lyme literate doctor. They will get you on the right track to find out if you have Lyme Disease. You may not have it, but chances are you do with the symptoms you have. Don't give up and good luck.
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April 12, 2011, 09:47:17 PM
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Newbie
Posts: 7
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Hi, I changed doctors in November and their still waiting for my notes to arrive, despite me getting the local PCT involved to get the ball rolling, so my next appointment is now May 16th... Apparently need a referal to get the Western Blot done privately, which is a bit odd as its my money, but I feel I need it to either eliminate or confirm Lyme, although I know its not that simple. The latest symptom to arise is chronic rib pain, which coupled with the daily lightheadedness and all the rest of it makes for an interesting time, its just one thing after another and its pretty relentless. As an aside I had my quarterly diabetic bloodtest done (HBA1C) and after having the high reading in hospital 2 .5 years ago with which they diagnosed me my levels have been in non diabetic territory ever since, so for the last 3 months I chucked away the metformin, ate anything and everything that should push me back over the edge (probably not the best way to do it but there comes a point lol) and the result... 5.7, well within non diabetic levels, so with the diagnosis made solely on 1 reading (infection can cause elevated blood glucose) I get the feeling I may have been misdiagnosed on this one What a shambles, still, we live and learn...
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April 13, 2011, 01:37:24 AM
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Newbie
Posts: 2
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Have you looked into Acute intermittent porphyria? It's a long shot, but causes a lot of the symptoms you are describing. It's quite rare though; I couldn't find much about it on the NHS website.
Anyways, the symptoms of porphyria are:
# Severe abdominal pain
# Nausea
# Vomiting
# Constipation
# Abdominal distention
# Paralysis of the bowel wall
# Urinary retention
# Tachycardia
# Hypertension
# Neuropathy
# Motor symptoms
# Muscle weakness
# Sensory disturbances
# Loss of pain sensation
# Loss of touch sensation
# Mental symptoms
# Anxiety
# Insomnia
# Depression
# Disorientation
# Hallucination
# Paranoia
# Violence
# Port-wine colored urine
# Back pain
# Arm pain
# Leg pain
# Low blood sodium level
# Dysuria
I looked into it because someone mentioned it to me as a possible cause, but a lot of your symptoms are listed there so it might be worth mentioning it to your new doctor.
Good luck!
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April 19, 2011, 01:52:28 PM
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Newbie
Posts: 7
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Hi, Thanks for the reply, I had a look at intermittent porphyria and some of the symptoms are there, but with there being such a broad range of things going on it fits many illnesses to the point where I'm just unsure of whats what now... My local PCT are now saying that they dont know where my notes are, so their lost between my old doctors and their main office which is great, over 2 years of tests appear to have vanished at this point so I really dont know what my next move is, apart from finding out NHS complaints procedure and following it, not that it will get me anywhere... So now I'm looking at my next appointment in May knowing that its almost a certainty going on previous form that my notes wont be there and nothing will be done, and I suppose the whole process will have to start again  The thing that gets me is how the hell can such a bunch of incompetents get away with doing nothing for so long, prior to losing my business through all this if I had treated just one of my customers in the manner that I've been treated, or with the level of contempt I would of found myself in a very big financial blackhole as they decided to take themselves elsewhere, but inside the NHS these people appear to be insulated from what happens out in the real world (I do know there are a lot of dedicated people working in the health service and this isn't aimed at them). Rant over, for now, maybe...
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May 16, 2011, 04:31:37 PM
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Newbie
Posts: 7
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Well, had my appointment with the doctor this morning, and... Nothing really We went through my notes which have finally arrived, and she's going to put my case to the PCT that I should get the Western Blot done, in her words just to put my mind at rest. She feels that my symptoms are more likely to be caused by taking the Champix (Chantix in the US), by the timeline and the way that several of the symptoms are known side effects of the drug, but she also said that proving this would be near on impossible and there was probably little they can do to cure this, not exactly what I wanted to hear, ok, so not at all what I wanted, or needed to hear and Im really not sure where I go from here, it feels like a pretty bleak place to be at the moment...
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June 07, 2011, 07:49:36 AM
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Group: Administrator
VIP Member
Gender: 
Posts: 920
I Will Be Diagnosed !
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What a buggar Andy Im sorry your lastest appointment didn't go too well, please don't give up, be strong  I was on Champix too (give up smoking) 16 months ago so after my symptoms developed and had no side effects. Perhaps take a small break and try again with someone else Samantha Well, had my appointment with the doctor this morning, and... Nothing really We went through my notes which have finally arrived, and she's going to put my case to the PCT that I should get the Western Blot done, in her words just to put my mind at rest. She feels that my symptoms are more likely to be caused by taking the Champix (Chantix in the US), by the timeline and the way that several of the symptoms are known side effects of the drug, but she also said that proving this would be near on impossible and there was probably little they can do to cure this, not exactly what I wanted to hear, ok, so not at all what I wanted, or needed to hear and Im really not sure where I go from here, it feels like a pretty bleak place to be at the moment...
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June 29, 2011, 02:24:58 PM
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Newbie
Posts: 7
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Hi Samantha, and thanks for your reply, Its been a while since I last posted, as basically I've been feeling terrible, new symptoms aplenty and I've just been hanging in there hoping something may crop up... Last week I had what can only be described as the worst week of my life, I managed to book a week away for my wife and kids as I think they needed a break from it all and on day 2 of them being away I had a bit of a weird event, the dizziness got really bad, I was confused and my legs, feet arms and hands started to go completely numb and cold, then tingling and burning This lasted for a couple of days along with visual disturbances and various other symptoms, racing heartbeat, numbness in my face, and a severe amount of presure in the left side of my head, also the small veins in my feet ankles and hands appeared swollen and spider veins developed and started to make purple marks (I'm assuming some kind of rupture of the cappileries) basically all of the symptoms and more I was originally admitted into hospital with in 2008, so looking back to 2008 the symptoms lessened after I was put on Asprin but have always been there, but my Asprin was stopped when I suffered an unexplained stomach bleed a couple of months back, so I started the Asprin again and the symptoms have eased away to normal levels, but with a new buring sensation in my shins (lucky me). Whata amazed me yet again was that twice I visited my doctors while having these severe symptoms, and I saw 2 different GP's, with nothing being done (I know I should really have visited ER but I didn't want to be admitted while nobody was here as I live very rurally and security is an issue), I was obviously not looking well, with a greyish colour and must have came across as a complete lunatic, having to keep asking them to repeat what they were saying and writing things down so I didnt forget them, so once again I guess incompetence wins for them... The only thing that has come from the whole episode is that yesterday I received a phonecall from the local practices mental health team, stating that one of the GP's was concerned as I came across as depressed and would I like to see a councillor, you couldn't make it up if you tried... 
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September 23, 2011, 10:19:37 AM
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Newbie
Posts: 7
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Hi all, Its been a while so thought I'd check in and give a quick update... Following on from my last post (was it really so long ago!) I decided to really get to the bottom of this whole thing, and start making some noise a my GP to get tests done, basically I had got to the point where I was sitting there getting used to feeling really ill and as bad as it sounds (I'm normally a really positive person) I didn't care what way it all went, I just wanted a way out, because continunig to be in that situation wasn't an option, over 2 and a half years of feeling so bad had finally started taking its toll mentally, and as it now rolls towards the 3 years mark I'm hoping that I've finally made a bit of progress, and diagnosis isn't far away... So where do I start, as someone who isn't medically trained my options were limited, so it was back to the internet, but with a clear direction of what I needed to learn, so I organised my search, and started with a list of possible causes by symptom (that was a long drawn out process I can tell you lol). Starting alphabettically I went through the list one by one forming three more lists, one for very close matches, one for overlapping symptoms and one for no matches by symptom, and this took ages, from there I went back to the close match list and started digging, again managing to cross some off that werent relevant, and at that point I went back to my GP and arranged a copy of all my old blood test results, and started digging to see how I could disgard other diseases by test result, very hit and miss, but it worked to some point. After narrowing the possibilities down to around a dozen diseases with heavily overlapping symptoms it was time to start the real work, so I found organisations for each disease and started reading, from their homepages to all forum posts I read the lot, and managed to narrow my list further, until I reached a point hwere there were less than 6 left, then I started looking at what tests could be used to dismiss any of them (I'd probably turned into a real fun person to be around at this point  ) and after phoning a couple of the disease related organisations for information went and asked my doctor for several tests, at which point he looked at me like I was a lunatic, but did give me some the tests... Since then I've been back this week for some that had to be repeated after 10 weeks (that was the longest wait of my life) and I'm now waiting the results of these repeat tests, the likelyhood is that I have APS (sticky blood) which means my blood is clotting in my veins, thickening it and literally slowing my circulation, giving me MS like symptoms and it also means my brain is slightly starved of oxygen (apparently its one of the most sensative organs to lack of bloodflow), and it appears that my "rough" spells were in fact TIA's, or mini strokes, theres also a very strong chance of autoimmune hypothyroidism (Hashimotos disease) which again is currently under investigation, so hopefully I'm getting somewhere now, and I should know the test results within the next few weeks, Andy
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