Discussions By Condition: I cannot get a diagnosis.

My dad is wasting away :(

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: gina-r
  • May 13, 2008
  • 02:46 PM

Hi All,

I found this site in desperation and I hope someone can help. My dad is 67 years old , he was very fit - an avid gardener, good diet,non-smoker and has never really been unwell with anything.

Lately he has been very ill. He started with loss of appetite and nausea in January and this has got worse and worse. After about a month of nausea he started vomitting whenever he eats or drinks anything, initally he could eat small plain cakes or plain biscuits and could drink fizzy drinks but eventually nothing at all.

He began to be sensitive to food smells and even cooking in the house or other people eating would trigger his vomiting. During this time, his doctor suspected and ulcer and prescribed medication for this, he also had many different blood tests but all came back normal.

He has got worse and worse until eventually he cannot eat or drink anything and was so weak and dehydrated we had to take him to hospital.
He has been on a drip and they have sent him for pretty much every scan they can do in the gastrointestinal areas (berrium/CT scan/ultrasound and MRI) but still nothing is apparent to be causing the sickness.

He is so weak now and has lost over 3.5 stone, he is literally wasting away, he is pale and can't walk without help or a walker and he spends 90% of the time in bed sleeping due to lack of energy and strength.
Before this all happened he mentioned that he had a strange episode where he felt a headrush and very flushed in the head and face and a searing pain, then the pain passed and he was fine. The doctors sent him for a CT scanwhen they were investing the other problems but did not really take this too seriously. The results showed that he had a very minor stroke but they said that it would have been s minor that he would not have felt it.

He has also suffered from earaches for years and lately has had headaches and earaches constantly.

Nothing adds up and the doctors are puzzled. He has been in hospital for 2 weeks now and every day when I see him he looks worse.

I don't know what to do, I can see my dad wasting away before my very eyes and I don't know what to do to help him - he looks like he is dying :(

They have sent him for another MRI today but they are not expecting to see anything as nothing showed up on the CT scan other than the minor stroke.

Does anyone know what these symptoms might be? Please help or advise if you can.

Thank you.
Kind regards,

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17 Replies:

  • Yours is a very sad story so far...you seem very worried about your dad. I don't know what sort of person he might be..I mean, is he a patient, understanding person, or is he irritable, impatient or violent (I mean when he was better). If he was a gentle and generous person, and he still has his general senses (alertness, rationality, memory) he might like to do some meditative contemplation that includes pleasant memories from the past, the good times he might have had with the family, and start to "re-live" them when-ever possible. Also let him be exposed to light entertainment like comedy shows and gardening programs, rather than violence, crime and horror etc on TV. He must also divide his time on a daily basis, for the above reflective thinking, external stimuli like pleasant experiences, giving loving kindness to those around him and similar things that would systematically boost his spirits. Also introduce him to vegetarian dishes from India and China if possible. A bit of aroma therapy will also help. I am sure there will be some change. However, it is not as easy as it sounds...You really need to work on these things. See how things are in about 2-3 weeks..Good luck and best wishes..Lasantha
    Lasantha 8 Replies Flag this Response
  • Hi Lasantha, Thank you for your kind email. Funny that you should ask but my dad has never been a very agreeable person (you have to know him to love him!). He has certainly never been one for trusting doctors or any kind of alternative therapy, I could not peruade him to see a chinese medicine practitioner and it took all our efforts to finally get him into hospital in the first place. The sad thing is he has almost given up the fight now and is happy to just sleep and has lost interest in all else. I will try to keep his spirits up, we have been around him constantly and my children - his grandchildren (2 boys age 5 and 7) are his pride and joy and his eyes light up when he sees them. By the way the MRI on his brain came back and they cannot see anything suspect, so now they have ruled out neurological problems and are looking at possibly a problem with his ears. Could this be right? How could an ear problem make him so ill? Does anyone know of anything that could be causing him to be so sick - it really is a mystery - the doctors are baffled. Thank you again for your concern. Kind regards,Gina
    gina-r 10 Replies Flag this Response
  • I can think of one illness which can cause those symptoms.. but at this point are not sure if he has enough symptoms to have it so i'll ask some questions. Have the doctors said that the weakness is directly the consequence of the weight loss?? eg caused it? or is the weakness just another symptom of whatever he has??? Did he have bouts of fatigue or weakness eg weak legs etc suddenly found himself tiring very easily.. before he lost all the weight? eg when the nausea and loss of appetite first happened did he get tiredness and weakness with it? Has he got an issue with irritable bowel syndrome? or is he having bouts of diarrhea? Any other symptoms... eg has his memory and concentration..gone downhill with this illness?
    taniaaust1 2267 Replies Flag this Response
  • Dear Tania, Re: My dad is wasting away :( Thank you for your reply. You raise interesting questions. Generally my dad has always been very fit and healthy, he never really complained of tiredness or weakness or anything like that, apart from some arthiritis he has in his hips and lower back which was diagnosed a year or so ago. I don't think the doctors can tell if his weakness is caused by lack of appetite and nutrition or if this has been caused by an underlying problem, its a chicken egg situation I guess. All I know is that he has deteriorated very quickly from a fit healthy muscular person to being bedridden and needing to use a walking frame - all in a few months. He has no problems with his bowels, just the nausea and sickness although he has been compaining about severe headaches and earaches recently. The Earache he has had for many years on and off, which is why they want to investigate this, but to me he looks like he is terminally ill and I don't know of anything to do with ears that would cause this. About the memory and concentration - thinking about it now, has had generally poor concentration for a few years now and finds it difficult to focus or remember details - such as names, places, directions although to be honest with you I have mainly put this down to aging even though he is only 67. It is very distressing, but thank you for your support. I look forward to any ideas you may have. Kind regards,Gina
    gina-r 10 Replies Flag this Response
  • Hi Gina, I am so sorry about your dad going thru this. It must be awful. I am sorry that I don't have any quick answers, but when reading through your posts, I saw you mention arthritis. Crohn's disease is known to show up in many arthritis cases. RA and IBD are definitly connected. That leads me to the tricky part. It isn't always easy to diagnose any kind of problems in the small intestine. You didn't mention anything about him having a colonscopy nor gastroscopy. If he hasn't he should have both done. Then they can at least see the upper and lower part of the small intestine. These diseases can go undiagnosed for years (I know, I have Crohns). The symptoms range from light to horrible and no 2 people are alike. They cause nausea, vomitting, abdominal pain, weightloss, dizzyness. I am guessing he had both the colonscopy and gastroscopy done, but figured I should mention it anyhow. Also, the ear might be a good place to look. There is more then one disease of the ear that can cause his symptoms. I will pray that he finds some relief. Kiera
    Anonymous 42789 Replies Flag this Response
  • Dear Kiera, Thank you for your reply. Interesting that you should mention Crohns, it was one of the first things that I found when researching. I wonder though is Crohns always associated with stomach cramping and pains? He doesn't get any pain, just the constant sickness. I'm not sure if they did a colonscopy but they did a gastroscopy a CT and an MRI of the area. At first they thought they could see something (a blockage) on the CT scan which is why they sent him for the MRI, but the MRI was clear and they could not see any problem. I sometimes wonder if they are missing something critical :( He has now been referred to the neurology team and following theMRI on his head, they have decided to send him for a full body MRI scan. I have been doing some research on this site and have found 2 very interesting articles that seem to have the right 'checklist' of symptoms and these 2 seem to match, the first one more so: BANF acoustic neurinoma (I am not sure if the earache is a red herring that is sending me off track but it does seem to list many of the symptoms my dad has) and Cyclic vomiting syndrome This also seems similar in symptoms but he doesn't have abdominal pain and this has been going on for a few months now, without respite where CVS has periods of feeling 'normal'. But how do I even go about raising my thoughts with his doctors, will they even listen to me if I mention that I 'googled' his symptoms and found this info? Thank you all so much for your thoughts and kind words, it really means a lot to me that you care to try and help us. Kind regards,Gina
    gina-r 10 Replies Flag this Response
  • But how do I even go about raising my thoughts with his doctors, will they even listen to me if I mention that I 'googled' his symptoms and found this info? Thank you all so much for your thoughts and kind words, it really means a lot to me that you care to try and help us. Kind regards,Gina If the doctors are not on an ego trip, if they cant work out themselves what is wrong, they should certainly be open to any ideas you can find (no matter where you find them). Unfortunately, too many doctors have big egos and hence dont listen to ideas even when they dont have a clue. I myself find that only about 20% of doctors.. bother with stuff i find online... but certainly give talking to them about anything you find out, a go if they are out of ideas. I don't think the doctors can tell if his weakness is caused by lack of appetite and nutrition or if this has been caused by an underlying problem, its a chicken egg situation I guess. nods..yeah you understood my question.. i was trying to work out if you knew what came first.. hard thou seeing the "egg" and "chicken" situation is there, due to that.. what im about to say cant currently be ruled out as possibly being what is wrong with your father. If his weak and beridden state wasnt caused just by the not being able to eat.. well it could be this. For over 10 yrs now, ive had a condition called chronic fatigue immunity dysfunction syndrome.. and as i spent most of my time researching this, Im only too aware of the various ways it can present. Unfortunately.. 95% of doctors know hardly anything about this illness.. or just how severe it can present. Studies have shown that 90% of patients with this illness, remain very sick but undiagnosed Most doctors have NEVER seen a severe CFIDS (also called CFS case) and arent even aware that this illness can be so severe, that on rare occassions it does actually kill! It can be that severe.. some with it have died due to not being able to eat cause of the nausea, vomiting etc (becoming sensitive to food smells is common in CFIDS.. i personally dont know of another illness that happens in.. but then i are not a doctor).. This illness can have a slow ongoing onset or can strike out of the blue (people have woken up and found themselves with it, completely bedridden, when they have seemed completely heathly the day before)... "sudden onset" CFIDS and basically hit one like a truck in severe cases. It can cause all kinds of symptoms!! 60-90% of CFIDS patients thou suffer from nausea, 20% get vomiting with it, most of us have a loss of appetite with it (i basically force myself to eat a lot of the time!). 20% of CFIDS patients get earaches with it (thou his earache by what you said, kind of sounds like a separate issue). (ive spent some time seeking out some CFIDS case histories online, which ive seen in the past which are how your father is presenting right now.. unfortunately thou i havent been able to find them again to post you the link.. people with CFIDS who due to your fathers symptoms.. were on deaths door and unknown to their doctors if they were going to survive or not. One of those people thou got down to 40 kg..but recovered) (please note that if you are in America.. they have a different CFIDS defination (or rather CFS) defination and criteria than many other parts of the world including Australia and Canada. The medical profession are still learning about this illness so it's defined differently depending on where you are. They keep changing it.. as they learn more about this illness and exactly what it is. I do think that within the next 5 yrs.. there will be new blood test for diagnoses!). I do think it's great that he's going to have a neurologist check him out. A good neuro test would be (if he's at all capable of standing for a short time).. the "Romberg's test. (It's one of the tests which sometimes abnormal findings are found in CFIDS and some other neuro dysfunction illnesses). It could point out, if his results were abnormal.. that his illness has a neuro component to it and hence point more towards something like a CFIDS diagnoses. (there are certain tests which can be often abnormal in CFIDS, the thing is most doctors dont know about them unless they specialise in this illness).
    taniaaust1 2267 Replies Flag this Response
  • i suggest to see if they will check his cortisol levels too..... (with CFIDS.. a third of patients have slightly abnormal cortisol levels esp with the morning levels)............. Cortisol issues can have symptoms of vomiting and nausea and other symptoms.
    taniaaust1 2267 Replies Flag this Response
  • Hi Gina, No, Chrons is not always assosicated with pain. I have bouts all the time with no pain at all. As a matter of fact when I was diagnosed they found ulcers throughout my whole colon (and my small intestine was supposed to be fine), but I had no cramping at all. I had bad nausea and diarreah tho. What I am trying to say is that it shows itself in many different ways. He could only have problems with the small intestine that is very hard to diagnose. MRI's and CT's show blockage very easy, but they aren't that great when it comes to inflammation. They are anyhow the best tools we have today, and a full body MRI sounds like smart move. He seems to be in good hands in any case. After I wrote my last post I was wondering if they found anything at all in his blood? Anything like an elevated white blood cell count, SED rate, CRP and so on? Anything abnormal in the blood would at least help point you in the right direction. There are so many things that could be going on that to try to diagnose from symptoms alone is almost impossible. I hope they get to the bottom of this soon and I will keep you in my prayers. Kiera
    Anonymous 42789 Replies Flag this Response
  • Hi all, Thank you so much for your kind and thoughtful replies. I have been very distracted with looking after my dad and so I apologise for my late response. No good news I'm afraid. He was sent for a PET scan a week ago, the results of which apparently showed some abnormalities in the brain and lower spine. The doctors have explained that this could be nothing as the PET scan is very sensitive and often shows areas that are not actually a problem at all. They have reviewed all his previous MRI scans off the back of this, his gastrointestinal areas and specifically the MRI on his brain but apparently they are happy with these. He is now waiting for an MRI scan on his spine. I am not reassured, he is definitley worse. His symptoms of nausea seem to have subsided, likely due to the anti-sicknes medication he has been taking. Due to the fact that he is unable to handle food, they have started feeding him using a nasal tube which he has had for about 10 days now. He is able to drink water and small amounts of tea (half a cup at a time, sipped slowly) without vomitting and a few mouthfulls of food, although he has no appetite at all. I am now extremely concerned as he is complaining of numbness andlack of feeling in his right leg and right side of his face as well as around his mouth. He is unable to stand unaided, and the worst 'new' problem is that in the last 7 days he has become incontinent. This is very distressing for him as he is relatively young, in his sixties and was strong and healthy a few months ago. I saw the neurological consultant this morning and he said he is 'happy' with him, and that we just need to get him mobile and eating. I am not comfortable with this at this stage, I really do not think these symptoms are a result of his nutrition and mobility but that these are being caused by an underliying undaiagnosed problem. He has clearly deteriorated in the last couple of days. He is very confused, a symptom they keep associating with demotivation and the fact that he his not mobile or eating properly. This just does not seem right to me. My grandmother was diagnosed with dementia in her 80's and my dad seems to be in the same or similar mental state to her early stages. Yes he can have a converstion with you and answer questions but his focus and ability to respond, particularly his response time to questions is very slow. I noticed that over the last couple of days his mouth is constantly hanging open, something that he doesn't seem to be aware of. I keep asking him if his mouth is ok and why he keeps opening it,but he seems unaware that he is doing it. He is very tired and exhausted all the time and can only stay awake or sit up for 30-60 minutes before needing to get back into bed and sleep. One last thing, that I have mentioned to the doctors that was initially of interest to them, but now seem to have dismissed is that when my dad was 11 years old, he was hospitalised for 9 months with paralysis. At the time the called this Ascending Myalitis, which is a creeping paralysis that started at his feet until he was eventually paralised from the chest down. Eventually he was in an iron lung but managed to recover and has lived a normal life with no problems apart from his constant lower back problems which he associated with his profession in later life (mechanic) and even later to arthiritis. Please can someone help me, I don't feel that the doctors fully understand the extent of his deterioration as they did not know him before. Just a few months ago he was so strong, often spending hours working on the garden, and building fences etc. now he seems to have aged physically and mentally about 20 years. I am worried that it might be something like MS or something similar, but surely they would have diagnosed this by now? Is anyone else aware of anything that this could be? About his cortosol levels, they did a few tests on this and they came back normal. How can I go about getting a second opinion? We are in the UK in an NHS hospital. I look forward to any replies. Kind regards,Gina
    gina-r 10 Replies Flag this Response
  • Dearest Gina,I feel so bad for you, because I know what its like to sit and watch and not be able to help someone you love dearly. I am not going to comment on what might or might not be at the moment, because I think he has some serious issues going on. From what you have mentioned tho, I think he is in good hands. I also think you need to sit down with someone close to you and have a good cry and let all of your worries out. This way you will be able to get yourself back on track and be strong for your dad. No matter what he is facing, he is going to need you there. I will keep you and your dad in my prayers and I hope you are able to keep your spirits up. Kiera
    Anonymous 42789 Replies Flag this Response
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  • Have the doctors looked into Hydrocephalus - Normal Pressure? It's also called NPH.Symptoms include progressive mental impairment and dementia, problems with walking, and impaired bladder control leading to urinary frequency and/or incontinence. The person also my have a general slowing of movements or may complain that his or her feet feel "stuck."Many times they are misdiagnosed with Alzheimer's, Parkinson's, or Creutzfeldt-Jacob diseases.http://www.ninds.nih.gov/disorders/normal_pressure_hydrocephalus/normal_pressure_hydrocephalus.htm
    Anonymous 42789 Replies Flag this Response
  • Dear Dxd, Thank you for your concern. My dad had a bone scan and lumbar puncture yesterday. They have not given any indication as to what they suspect but the neurologist consultant has told my mum that due to my dad's rapid deterioration they are expecting the worst. What exactly this means I really do not know but we are expecting the LP results over the next few days - apparently this takes some timeas they need to grow some cultures or something. I have taken a look at the link you sent and the symptoms match those that my dad is experiencing. I hope they can findout soon. I will keep you all informed.Thank you so much for your support. xxx Gina
    gina-r 10 Replies Flag this Response
  • Hi all, No good news I'm afraid. He was sent for a PET scan a week ago, the results of which apparently showed some abnormalities in the brain and lower spine. Kind regards,Gina PET and SPECT scans are both recommended tests in CFS, as they often show up abnormality.. eg in CFS there is often hypo-perfusion in certain parts of the brain .. most commonly in the brain stem and the focal cortical or parts of the cortex . There has been quite a few different studies of this done about the world now.. so IF the doctors come up with nothing.. maybe compare that abnormal PET with what the CFS studies show to see if your fathers symptoms are still pointing maybe to this possibility. (I myself took part of in a large CFS study (results are still to be published.. and apparently all of us had some hypoperfusion of our brains, show up in the SPECT scan.. SPECT scans are very similar to PET scans). http://www.salutemed.it/cfs/bp.htm BRAIN POSITRON EMISSION TOMOGROPHY (PET) IN CHRONIC FATIGUE SYNDROME: PRELIMINARY DATA. Umberto Tirelli* MD, Franca Chierichetti° MD, Marcello Tavio* MD, Cecilia Simonelli* MD, Gianluigi Bianchin€ MD, Pierluigi Zanco° MD and Giorgio Ferlin° MD. * Division of Medical Oncology and AIDS, Centro di Riferimento Oncologico, Aviano - Italy. ° Nuclear Medicine Department - PET Center, General Hospital - Castelfranco Veneto - Italy. € Psychiatry Department, General Hospital - Castelfranco Veneto - Italy. Corresponding author: Prof. Umberto Tirelli Division of Medical Oncology and AIDS Centro di Riferimento Oncologico Via Pedemontana Occ. 12, 33081 Aviano (PN) - Italy Tel. 434/659284 fax: 434/659531 e-mail: oma@ets.it ABSTRACT Background and objective: Chronic fatigue syndrome (CFS) has been widely studied by neuroimaging techniques in recent years with conflicting results. In particular, by single photon emission computed tomography (SPECT) and perfusion tracers it has been found hypoperfusion in several brain regions, although the findings vary across the research centres. Objective of the study was to investigate brain metabolism of patients affected by CFS, by using 18Fluorine-deoxygluxose (18FDG) positron emission tomography (PET). Methods: We performed 18FDG PET in 18 patients who fulfilled the criteria of working case definition of CFS. Twelve of the 18 patients were females; the mean age was 34 ± 50 (range 15-68) and the median time from CFS diagnosis was 16 months (range 9-138). Psychiatric diseases and anxiety neurosis were excluded in all CFS patients. CFS patients were compared with a group of 6 patients affected by depression (according to DSM IV R) and 6 age matched healthy controls. The CFS patients were not taking any medication at the time of PET, while depressed patients were drug-free for at least one week prior to the PET examination. PET images were examined considering 22 cortical and subcortical areas. Results: CFS patients showed a significant hypometabolism in right medium frontal cortex (p = 0.010) and brain stem (p = 0.013) in comparison to the healthy controls. Moreover, comparing patients affected by CFS and depression, the latter group showed a significant and severe hypometabolism of a medium and upper frontal regions bilaterally (p = ranging from 0.037 to 0.001), while the metabolism of brain stem was normal. Conclusion: Brain- 18FDG PET showed peculiar metabolism abnormalities in patients with CFS in comparison both with healthy controls and depressed patients. The most relevant result of our study is the brain stem hypometabolism which , as already reported in a perfusion SPECT study, seems to be an marker for the in vivo diagnosis of CFS.
    taniaaust1 2267 Replies Flag this Response
  • lumber puncture may be being done to check to make sure he hasnt got MS (it can also check for other things too)...
    taniaaust1 2267 Replies Flag this Response
  • Dear all, I'm sorry for not posting for some time now, as you probably imaging, things got worse with my dad more and more tests were carried out and still no diagnosis. He got weaker and weaker and hope was slowly slipping away as he was. He finally had a biopsy on his spine to take samplesof some tiny lesions that showed on one of the scans, the results of the biopsy was Diffuse B-Type Lymphoma. He passed away on July 22nd 2008. It turnsout that the Lymphoma was in his brain - in the Pineal Gland and had rapidly spread through his Central Nervous System. It was too late to treat by the time the diagnosed him. We are devastated that he was stolen away from us at just 66 but are grateful that he was in no pain at all, and he passed peacefully away in our armshaving spent the last 3 months at his bedside all day everyday. I am comforted that he is now at rest and would like to thank everyone on this forumfor your overwhelming support and kindness during the difficult months before his death. George Blum, 1941-2008, my daddywho I loved dearly - may you rest in peace. Kind regards,Gina
    gina-r 10 Replies Flag this Response
  • I am SO sorry for your loss.Thank you for taking the time to post with the answer. It means a lot to those of us still searching. Sending you e-hugs.
    dizzy lizzie 192 Replies Flag this Response
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