Discussions By Condition: I cannot get a diagnosis.

Am I going mad?

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Anonymous
  • February 12, 2008
  • 09:38 PM

Hi all, first of all I'd like to say thanks for taking the time to read this, any advice or suggestions will be greatly appreciated as I feel like I'm going mad!

Long story short: about 20 months ago I got a really bad case of tonsillitis - I have suffered with throat problems my whole life and I'm currently waiting to see a specialist. Anyways I got this bout of tonsillitis during my final year of uni right around exam time so I did not have time to recover - I then graduated and started working full time (more or less).

Since this episode of tonsillitis I have been feeling very lethargic, I have no energy and all I want to do is sleep. I went to see my GP about this and they did some tests and it turned out that the tonsillitis was in fact glandular fever and that as a result I had Chronic Fatigue. I took about two weeks off and went back to work, made some changes to my diet and exercised more to get some endorphins flowing.

Since then however things have just gotten worse here is a list of my symptoms:

** Alternating constipation and diarrhea/v loose stole: (for approx 18 months, ongoing)
** Feeling dizzy and sometimes fainting: (for approx 18 months, fainted maybe 4 times in that period but not fainted for at least 4 months)
** My hands get a funny rash and they swell up and become hot: (this has happened approx 8 times in the last 15 months, ongoing)
** Very swollen glands in my neck, literally poking out of my skin the size of a cherry tomato (18 months about once every 3 weeks usually lasting 4-7 days, ongoing)
** Always feel tired and lethargic and that I have no energy.

Since the end of December things have got a little worse, basically when I wake up I feel very very nauseous like someone is stirring up my tummy and the nausea last till about 3pm then starts back up around 9pm, sometimes I am sick but not often. I am eating normally but don't feel at all hungry, I have to remind myself to eat almost.

Along with this I have abdominal pain - it feels like the sort of pain you get when you hold your urine in too long, and last for between about 5 and 20 minutes. Sometimes if I move to quickly it's more of a stabbing pain. I also have a pain in my chest to the left under my breast now and again, maybe twice this month, which gets worse if I breathe in deeply.

I also have a very very weird pain in my left side of collar bone and around my rib cage both front and back and sometimes in my wrists - it feels like the actual bone is swollen and it hurts a lot! If you look at my tummy when I lie flat you can even see sometimes that the one side is more swollen than the other. Also my tummy is very bloated, swollen and very hard to touch, almost like a pregnant lady and there is a sort of "sill"(like a definite ending of the stomach?!) to my tummy about 2 inches under my breasts. But no change in gas/stool.

I have also become very pale and sometimes my hands, arms and legs start to shake this has happened about once a fortnight over the last 2 months.

I have been to the GP and he says that I have a gastroenteritis and that it's just taking a long time to clear. But I do not think this could be right? The doctor has not looked at my tummy at all, I have not had any blood/urine tests. I have had a stool test which came back normal. Also I do not know if it is relevant but my skin has also become quite spotty (usually is very clear), and last month my period was very very light. Home pregnancy test is negative and no sexual intercourse for approx 4 months.

I'm female, 24 and have a healthy diet; I think I am classed as overweight - I'm 5ft3 and weigh 11 stone. I do not feel stressed/have a stressful lifestyle, I am not depressed - I generally feel happy. There is a family history of (breast & colon) cancer, diabetes, Thalassemia, Thrombocytopenia, Hodgkins and my dad has problems absorbing B12 - I forget what it's called.

Any help is greatly appreciated as the Dr does not seem to be taking me seriously - I'm convinced he thinks I'm a hypochondriac! I feel like I'm slowly going mad and this is having an adverse effect in my day to day life!

Sorry this is so long but I thought it would be best to be accurate - thank you all for taking the time to read this, it is greatly appreciated.

Hayley.

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12 Replies:

  • Dies anyone have a suggestion? xx
    Anonymous 42789 Replies
    • February 13, 2008
    • 10:45 PM
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  • I don't think that your past tonsilitis is related to what your experiencing now. Just my opinion, as I have never heard of your symptoms coming from tonsilitis. I am not sure of most your symptoms, but that chest pain, is a panic/anxiety attack, due to stress. Probably from worrying about the other symptoms. I get them from time to time even when I dont feel stressed out.Have you been tested for diabetis? some of your symptoms sound like it, others dont, maybe your diabetic and have other problems too? Sry couldnt help more
    prone2injury 28 Replies
    • February 15, 2008
    • 05:05 PM
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  • Sounds like complications from your glandular fever. Go see an infectious disease specialist or an internist to receive treatment that your doctor won't give you. A shot of steroids may help. It could be your spleen has become compromised so you need blood work to check its status pdq..drop your doctor like a hot potato.http://www.homehealth-uk.com/medical/glandularfever.htm
    Monsterlove 2921 Replies
    • February 15, 2008
    • 08:08 PM
    • 0
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  • Might just be me, but I kinda hought of GI issues - celiac disease for instance...?
    Tranquillity 34 Replies
    • February 15, 2008
    • 08:44 PM
    • 0
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  • Insist on blood tests, including blood cells, liver, glucose, thyroid and B12. If GP won't order them, have them done privately. You need investigations.
    kentishman 19 Replies
    • February 16, 2008
    • 09:38 PM
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  • Hi all, first of all thank you so much for the great advice and suggestions!I went back to the Drs on Monday and decided that I need to be a bit more forceful with the Dr which is not very easy when you have been brought up to think of them as gods who always know best!But anyway, the Dr again said I had a virus and I asked him if it was possible for him to just have a quick feel of my belly seems as how I have been feeling horrid since Jan 1st and not one Dr had even looked at it! He proceeded to press my tummy very hard and the pain was excruciating (I actually vomited in his room!) on the left side and pain free on the right.He basically said that I am severely constipated; the left side of my tummy from just below my belly button right up to my ribs is solid whereas the right side is spongy and soft. He explained that the "diarrhea" I'd been experiencing was due to leakage around faeces that had blocked my colon.He gave me something called Movicol and told me to take 1-3 sachets a day and drink plenty of water (I drink 4 litres a day as standard). I have taken 3 sachets a day since being prescribed this medicine and I've had one bowel movement, on day one; it was the hardest thing to pass ever and was about 0.5cm by 1 cm - like a tiny tiny sheep's poo and really hard!The Dr said to go back in 4 weeks and if the left side is still hard he will send me for an ultrasound & do some blood work. Meanwhile I'm feeling more bloated and in more pain that ever! My period is also 8 days late (last month was very light as described originally) which is making my tummy even worse!I don't understand why I have to wait 4 weeks for blood work & an ultrasound :o( - does constipation take 4 weeks to clear? My diet is pretty healthy with fresh fruit and veg (I do have the odd takeaway and chocolate now and again maybe once every 3 months if that) I drink plenty of water (4 litres plus), no tea or coffee, an Actimel drink in the mornings, I do Pilate's twice a week and swim three times a week. I'm just not buying this constipation diagnosis - what do you all think?
    Anonymous 42789 Replies
    • February 20, 2008
    • 09:47 PM
    • 0
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  • I think crohn's disease should be considered."Granulomtous tonsillitis: A rare extraintestinal manifestion of crohn's disease" http://www.ncbi.nlm.nih.gov/pubmed/1618062This condition pretty much covers most of your symptoms.http://ibdcrohns.about.com/cs/faqscd/a/crohnsfaq.htmHope this helps. Regards.
    TerryG 120 Replies
    • February 21, 2008
    • 11:31 AM
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  • I'm probably not the best person to be giving insight on possibilities since I myself am having no luck with my diagnosis either. I have had similar symptoms and they have yet to explain anything (i haven't had that bad of constipation though). My family has a history of lupus- not saying that is what you have because to be honest i have no idea. BUT, many of them found out they had it because their entire body would just randomly get sick or have funny things happen to them without an explaination as to why they were happening frequently and randomly. They were ALWAYS tired making their daily activities difficult and random unexplained "infections" i.e. earaches, without the actual "infection" plagued them. If all else fails and you continue to have odd illnesses, look into the possibility of it. you'll want to go to a specialist for it though, lupus is still one of those diseases many doctor's still don't understand and you'll want a doctor who has had more expierence looking for lupus (there is not a generalized test for it, it is diagnosed more on observation). What I really wanted to tell you is hang in there. Do as so many have told me to do, trust your instincts. You know your body and if you feel there is SOMETHING or ANYTHING other than what they say is going on...stick with it...maybe it is constipation and your doctor is right...but only you will know if it is JUST constipation...if you feel that there might be SOMETHING else causing it or making it happen, keep searching. I'll be thinking of you and hoping that you have more luck than i have had. Your not going crazy, don't EVER let anyone convince you of that....You know what is right for your body.
    Rose1001 4 Replies
    • February 21, 2008
    • 02:56 PM
    • 0
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  • sorry to hear that you are having such trouble. I think your doctor is a real ***k and you should go and see another one. I don't understand why I have to wait 4 weeks for blood work & an ultrasound :o( - does constipation take 4 weeks to clear? No it doesnt take 4 weeks to clear.. meds should clear it within 24-48 hrs OR LESS (it all depends on the med) if they are really going to work. If your bowel is blocked up like that.. by 4 weeks time.. (if you can last that long with the pain etc, You could be in severe trouble by then).. its going to only get worst!!! The feceal matter will further and further impact! and be even harder to remove! The meds he gave you to clear the bowel, obviously havent worked! He should of told you to come back within the week if the meds didnt work. He also should of felt your bowel, stomach.. at an earlier time.. You shouldnt have had to "get tough" with him to get him to properly check you out. http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/10175.html has good article i suggest you read "Symptoms of fecal impaction include: Liquid stool (the stool is leaking around the impacted mass of feces and can be mistaken for diarrhea)Abdominal pain, especially after mealsA persistent urge to move the bowelsNausea and vomitingHeadachePoor appetite, weight lossMalaise (a generally sick feeling)If the problem is not treated, dehydration, rapid pulse, rapid breathing, fever, agitation, confusion and urinary incontinence"
    taniaaust1 2267 Replies
    • February 22, 2008
    • 08:28 AM
    • 0
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  • Anyways I got this bout of tonsillitis during my final year of uni right around exam time so I did not have time to recover - I then graduated and started working full time (more or less). Since this episode of tonsillitis I have been feeling very lethargic, I have no energy and all I want to do is sleep. I went to see my GP about this and they did some tests and it turned out that the tonsillitis was in fact glandular fever and that as a result I had Chronic Fatigue. I took about two weeks off and went back to work, made some changes to my diet and exercised more to get some endorphins flowing. Since then however things have just gotten worse here is a list of my symptoms: ** Alternating constipation and diarrhea/v loose stole: (for approx 18 months, ongoing)** Feeling dizzy and sometimes fainting: (for approx 18 months, fainted maybe 4 times in that period but not fainted for at least 4 months)** My hands get a funny rash and they swell up and become hot: (this has happened approx 8 times in the last 15 months, ongoing)** Very swollen glands in my neck, literally poking out of my skin the size of a cherry tomato (18 months about once every 3 weeks usually lasting 4-7 days, ongoing)** Always feel tired and lethargic and that I have no energy. Since the end of December things have got a little worse, basically when I wake up I feel very very nauseous like someone is stirring up my tummy and the nausea last till about 3pm then starts back up around 9pm, sometimes I am sick but not often. I am eating normally but don't feel at all hungry, I have to remind myself to eat almost. Along with this I have abdominal pain - it feels like the sort of pain you get when you hold your urine in too long, and last for between about 5 and 20 minutes. Sometimes if I move to quickly it's more of a stabbing pain. I also have a pain in my chest to the left under my breast now and again, maybe twice this month, which gets worse if I breathe in deeply. I also have a very very weird pain in my left side of collar bone and around my rib cage both front and back and sometimes in my wrists - it feels like the actual bone is swollen and it hurts a lot! If you look at my tummy when I lie flat you can even see sometimes that the one side is more swollen than the other. Also my tummy is very bloated, swollen and very hard to touch, almost like a pregnant lady and there is a sort of "sill"(like a definite ending of the stomach?!) to my tummy about 2 inches under my breasts. But no change in gas/stool. I have also become very pale and sometimes my hands, arms and legs start to shake this has happened about once a fortnight over the last 2 months. I have been to the GP and he says that I have a gastroenteritis and that it's just taking a long time to clear. But I do not think this could be right? The doctor has not looked at my tummy at all, I have not had any blood/urine tests. I have had a stool test which came back normal. Also I do not know if it is relevant but my skin has also become quite spotty (usually is very clear), and last month my period was very very light. Home pregnancy test is negative and no sexual intercourse for approx 4 months. I'm female, 24 and have a healthy diet; I think I am classed as overweight - I'm 5ft3 and weigh 11 stone. I do not feel stressed/have a stressful lifestyle, I am not depressed - I generally feel happy. There is a family history of (breast & colon) cancer, diabetes, Thalassemia, Thrombocytopenia, Hodgkins and my dad has problems absorbing B12 - I forget what it's called. Any help is greatly appreciated as the Dr does not seem to be taking me seriously - I'm convinced he thinks I'm a hypochondriac! I feel like I'm slowly going mad and this is having an adverse effect in my day to day life! Sorry this is so long but I thought it would be best to be accurate - thank you all for taking the time to read this, it is greatly appreciated. Hayley. Im thinking that you may have chronice fatigue syndrome (also called chronic fatigue immunity dysfunction syndrome). You have well known CFS triggering things at the start of your illness. CFS often starts out after a stressful period (eg studying for exams) is often a trigger for it. (That was my trigger.. I got CFS at exam time in my yr of college! and at an earlier time, had severe glandular fever). 10% of people who get glandular fever/mono (the worst the glandular fever is.. the more likely it is to be a trigger) end up with CFS. 50-90% of those with CFS get IBS (irrritable bowel syndrome).. IBS can cause constipation (or diaherrhea) For further look at the various CFS symptoms and the percentage of CFS people who have them .. http://wwcoco.com/cfids/bernesx.html . I myself have had 3 eposides of hand swelling with the CFS. I suggest to firstly sort out your bowel issue and see what symptoms are remaining (go and see a different doctor to have that sorted out, your current one is useless). Then if you are still lethargic, nauseus etc etc etc. I strongly suggest for you to go to someone who specialises in CFS http://www.co-cure.org/Good-Doc.htm If you do have CFS.. exercising could make you worst (chance of making yourself PERMANENTLY worst).
    taniaaust1 2267 Replies
    • February 22, 2008
    • 08:49 AM
    • 0
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  • Hi everyone just me again - I wanted to give you all a quick update!I went back to the Dr about 1 week after he told me it was constipation because the pain was worse and I also noticed some other things. I have weird pains in different parts of my body, one is sort of in my ribs at the back on the left and makes it difficult to breathe in, it comes and goes and lasts various different amount of time. Also have pain in my right wrists and sort of inside my right shoulder - very hard to explain!He basically said that his diagnosis is correct - he felt my tummy again and said the blockage was still there but that it was faeces and that it would go in 4 weeks as it was backed up. Since then I have had very strange pains in my biceps, but mainly my right side - it feels like I have been lifting very heavy weights and if you touch the muscle in my arm it's tensed like I am tensing it up to flex the muscles - but I'm not! It's very painful and aching, but like everything else comes and goes.About 5 days ago I started to get a sore throat but it didn't feel like tonsillitis - my tonsils were slightly swollen but nothing like what it's usually like when I have tonsillitis and there were no white spots on the tonsils. The pain was sort of deeper, more in my neck further down my wind pipe (if that's what's it's called) and hurt a lot to swallow more than tonsillitis hurts. My glands were also up in my neck, they are usually always up but they have been up more these last few days particularly the right side.Now this morning I wake up and my tongue is sore like I burnt it, and it was covered in white gunk. I gave my teeth and tongue and good but gentle brush and the white cleared a little, but the pain has got steadily worse. I just looked in the mirror and there are red spots on my tongue - also the right side of my tongue has a few ulcers!Have a look at this picture of my tongue and tell me what you think - is this related to the other symptoms somehow? Should I go back to the Dr? He just always makes me feel so stupid - he even said that when you feel ill you make everything into a symptom, implying that my symptoms are not real in some way, and in my notes I saw he had written "overweight"! GRRRRhttp://img127.imageshack.us/img127/5223/tongueclosety0.jpgThanks again for the words of encouragement everyone it's truly appreciated,xxx
    Anonymous 42789 Replies Flag this Response
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  • He just always makes me feel so stupid - he even said that when you feel ill you make everything into a symptom, implying that my symptoms are not real in some way, and in my notes I saw he had written "overweight"! GRRRR I'm sorry, I do not know anything about those symptoms so I can't advise, but I really think you need to find a new Dr!!!
    CarolynL1983 4 Replies Flag this Response
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