Discussions By Condition: I cannot get a diagnosis.

does anybody recognize this ?

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: simmah
  • April 9, 2007
  • 09:11 PM

I am female, 55. I was basically ok until 4 years ago. I had my first attack then - my whole digestive system seized up. I couldn't eat anything, it stuck in my throat. I was like that for 10 days, drinking soup and liquids, I frequently couldn't swallow, and my right eyelid had drooped down - I thought I'd had a stroke. I had blood tests, came back ok. Gradually I got back to near normal. I was very careful what I ate, but I was alright again. Six months later I was walking along and I felt my legs weren't behaving properly suddenly. I went home, forgot about it, went on normally, woke up the next morning, ate my porridge for breakfast and it stuck in my throat. I thought I was going to choke/die - lasted hours. This time the attack was much worse. Couldn't swallow, both eyelidsdown, muscles so contracted my legs were going into spasm. No help from the doctors. Another 2-3 weeks of nearly starving, literally, and again it started to ease off, then went. OK again for a few months. Then it came again. That's the story - attacks/remissions - doctors were talking about stress, but nothing more constructive, then 2 years ago in the summer it came on suddenly, and in addition my heart started thumping like mad when it did. When I had an attack, it was signalled by not being able to swallow, lots of gurgling in digestive system, and very stiff legs, arms, right hand hard to walk - muscles, basically. Eyelid/s collapsed also. Saw a neurologist who said nothing wrong with that he could tell. Last summer had biggest attack yet. Collapsed, heart pounding, both eyelids down. Had ecg they said it was ok. Had a blood test and the only thing was I noticed was my potassium was high - just above the safe level. The attacks come on after food, that's certain. I am struggling on, but it is getting more and more difficult. The attacks are sudden, and when my heart starts pounding it's very scary. I should mention that I in desperation I diagnosed myself as Addisons owing to the high potassium, and I got licorice which was an old time remedy, but when I get the attack with the pounding heart I take that, and it stops it, and the not being able to swallow. There is a thing called hypo aldosteronism which is sort of half Addisons, but it seems to be very rare, and it can lead to something else called hyperkelemia, which is not so rare - it's a shot in the dark, if only I could get some help I would be very grateful. Good luck to you all, hang in there.

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  • I think that these attacks are definitely hyperkalemia, but I wouldn't be so quick to think they're from a disease. I think you should look more into your potassium levels because if you have excess potassium built up, it can and most likely will lead to hyperkalemia which causes muscle weakness, numbness and tingling, abnormal heart rhythm, muscle paralysis, trouble breathing. And while it says nothing about digestive problems, there are many muscles involved in the digestive process so if they're paralyzed, it's going to be much harder to digest things. And I personally know the extent to which potassium can effect both your heart. Over the holiday season I had several "attacks" where my heart would race and my right arm would draw up for no real reason, or so I thought. But I finally went to the ER when my heart rate hit 170 one night and they tested my potassium and it was dangerously low, so they fed me a bunch of horsepills and gave me more supplements to take and I've been fine ever since! I'm not sure, however, what they do for people who have too much potassium, but I'm sure that's something a doctor could tell you! Be careful with it, though, because your heart is a muscle that can be paralyzed the same as any other muscle (hyperkalemia can kill you!). But here's a website that tells a little more about potassium, I hope it helps. Good luck!http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Potassium.asp?sitearea=ETO
    kmhall3 2 Replies Flag this Response
  • I am female, 55. I was basically ok until 4 years ago. I had my first attack then - my whole digestive system seized up. I couldn't eat anything, it stuck in my throat. I was like that for 10 days, drinking soup and liquids, I frequently couldn't swallow, and my right eyelid had drooped down - I thought I'd had a stroke. I had blood tests, came back ok. Gradually I got back to near normal. I was very careful what I ate, but I was alright again. Six months later I was walking along and I felt my legs weren't behaving properly suddenly. I went home, forgot about it, went on normally, woke up the next morning, ate my porridge for breakfast and it stuck in my throat. I thought I was going to choke/die - lasted hours. This time the attack was much worse. Couldn't swallow, both eyelidsdown, muscles so contracted my legs were going into spasm. No help from the doctors. Another 2-3 weeks of nearly starving, literally, and again it started to ease off, then went. OK again for a few months. Then it came again. That's the story - attacks/remissions - doctors were talking about stress, but nothing more constructive, then 2 years ago in the summer it came on suddenly, and in addition my heart started thumping like mad when it did. When I had an attack, it was signalled by not being able to swallow, lots of gurgling in digestive system, and very stiff legs, arms, right hand hard to walk - muscles, basically. Eyelid/s collapsed also. Saw a neurologist who said nothing wrong with that he could tell. Last summer had biggest attack yet. Collapsed, heart pounding, both eyelids down. Had ecg they said it was ok. Had a blood test and the only thing was I noticed was my potassium was high - just above the safe level. The attacks come on after food, that's certain. I am struggling on, but it is getting more and more difficult. The attacks are sudden, and when my heart starts pounding it's very scary. I should mention that I in desperation I diagnosed myself as Addisons owing to the high potassium, and I got licorice which was an old time remedy, but when I get the attack with the pounding heart I take that, and it stops it, and the not being able to swallow. There is a thing called hypo aldosteronism which is sort of half Addisons, but it seems to be very rare, and it can lead to something else called hyperkelemia, which is not so rare - it's a shot in the dark, if only I could get some help I would be very grateful. Good luck to you all, hang in there.Hey- been there, done that. Everytime I ate I had the same lump in throat, or food stuck in throat feeling, palpitation, and I could not swallow water or saliva. I made weird gargling noises for a moment or two. Some really clueless doctors wanted to keep me on valium and tell me that if I relax, my stress would go away. Also to look for a friend (my spouse was by my side) so I can talk about my depression. After running many tests, just a few things pop which did not mean anything to my doctors. That was the first week of December 2006- I am now 95% of the time symptom free. The big mystery: allergies as defined by Doctor Devi Nambudripad.Something inside of me went bad. I was allergic to virtually everything, including most foods. Please read about NAET if you are not familiar with the topic, which is discussed here regularly. Just run a search on this forum about NAET.The cause of your terrible symptoms can be found and most likely reversed. People choose to call these "invisible disorders" names likecricopharyngeal spasm because they have a lump- or they call it ostheo whatever tachicardia, because the blood pressure gets messed up witht motion or changing positions. Also asthma and allergies are disorders of the nervous system which can be totally cure with JMT and NAET.I made it to this website while I looked for a diagnosis- but I did not find anything here back then, just people as clueless as I was.So dysautonomia, or lump in throat, and acid reflux, and crohns, and ibs, and all that can be cured with NAET.Take Care.
    Eatafruit78 960 Replies Flag this Response
  • I am female, 55. I was basically ok until 4 years ago. I had my first attack then - my whole digestive system seized up. I couldn't eat anything, it stuck in my throat. I was like that for 10 days, drinking soup and liquids, I frequently couldn't swallow, and my right eyelid had drooped down - I thought I'd had a stroke. I had blood tests, came back ok. Gradually I got back to near normal. I was very careful what I ate, but I was alright again. Six months later I was walking along and I felt my legs weren't behaving properly suddenly. I went home, forgot about it, went on normally, woke up the next morning, ate my porridge for breakfast and it stuck in my throat. I thought I was going to choke/die - lasted hours. This time the attack was much worse. Couldn't swallow, both eyelidsdown, muscles so contracted my legs were going into spasm. No help from the doctors. Another 2-3 weeks of nearly starving, literally, and again it started to ease off, then went. OK again for a few months. Then it came again. That's the story - attacks/remissions - doctors were talking about stress, but nothing more constructive, then 2 years ago in the summer it came on suddenly, and in addition my heart started thumping like mad when it did. When I had an attack, it was signalled by not being able to swallow, lots of gurgling in digestive system, and very stiff legs, arms, right hand hard to walk - muscles, basically. Eyelid/s collapsed also. Saw a neurologist who said nothing wrong with that he could tell. Last summer had biggest attack yet. Collapsed, heart pounding, both eyelids down. Had ecg they said it was ok. Had a blood test and the only thing was I noticed was my potassium was high - just above the safe level. The attacks come on after food, that's certain. I am struggling on, but it is getting more and more difficult. The attacks are sudden, and when my heart starts pounding it's very scary. I should mention that I in desperation I diagnosed myself as Addisons owing to the high potassium, and I got licorice which was an old time remedy, but when I get the attack with the pounding heart I take that, and it stops it, and the not being able to swallow. There is a thing called hypo aldosteronism which is sort of half Addisons, but it seems to be very rare, and it can lead to something else called hyperkelemia, which is not so rare - it's a shot in the dark, if only I could get some help I would be very grateful. Good luck to you all, hang in there.have you had your thyroid checked? do a through test, I'm praying for you!
    Anonymous 42789 Replies Flag this Response
  • This happened to me, I have multiple sclerosis. See a neurologist and insist on an MRI with and without contrast. MS doesnt show up on an MRI without contrast.
    crabbycosmo 21 Replies Flag this Response
  • Hi, I am suspected by one or two Drs to have hyperkalemic periodic paralysis, I seem to react to potassium rich foods as well as stress, rest after exercise and certain pollutants. However, I haven't been diagnosed because of the crud NHS has given me a load of other tests that came up normal and haven't done the conclusive feed me potassium and monitor me test. My potassium levels are normal during and after attacks but this only means I may have the "normakalemic" varitey of PP. I have pretty much been told that I am to be refered to a psychologist and psychiatrist or something similar and am extremely angry at how this is being handled - stress not helping my condition! I started having attacks frequently in March last year. I have put up 2 posts already and had no replies, but yours is very similar in the paralysis. Attacks can vary from person to person, but it is always best to check another condition isn't causing the hyperkalemia as PP tends to start in child hood or twenties. The basis for the attacks seem like they are the same though and I have heart pounding and arrythmias occasionally but the drs never catch them - it's hard enough finding drs that stick around long enough to see the paralysis ! Worst case scenario is having a heart attack or suffocating because my chest muscles get partly paralysed too sometimes. However this is extremely rare. (but then so is HYPP!). Good Luck in your diagnosis and if you feel you are being treated unfairly, stamp your feet! SquidgeBlip
    Squidgeblip 9 Replies Flag this Response
  • Hi, I am suspected by one or two Drs to have hyperkalemic periodic paralysis, I seem to react to potassium rich foods as well as stress, rest after exercise and certain pollutants. However, I haven't been diagnosed because of the crud NHS has given me a load of other tests that came up normal and haven't done the conclusive feed me potassium and monitor me test. My potassium levels are normal during and after attacks but this only means I may have the "normakalemic" varitey of PP. I have pretty much been told that I am to be refered to a psychologist and psychiatrist or something similar and am extremely angry at how this is being handled - stress not helping my condition! I started having attacks frequently in March last year. I have put up 2 posts already and had no replies, but yours is very similar in the paralysis. Attacks can vary from person to person, but it is always best to check another condition isn't causing the hyperkalemia as PP tends to start in child hood or twenties. The basis for the attacks seem like they are the same though and I have heart pounding and arrythmias occasionally but the drs never catch them - it's hard enough finding drs that stick around long enough to see the paralysis ! Worst case scenario is having a heart attack or suffocating because my chest muscles get partly paralysed too sometimes. However this is extremely rare. (but then so is HYPP!). Good Luck in your diagnosis and if you feel you are being treated unfairly, stamp your feet! SquidgeBlipDear SquidgeBlipSorry not to have replied before, I only read yr message just now. Very good of you to reply, and maybe I have some info that could help you -by sheer chance late last summer I saw on tv a programme abt work of National Hospital for Neurology Queen Sq London. One bit made me sit up and take notice - a guy abt 35, fit looking, who was a star turn for lecture hall full of top clever docs- what was the matter with him was the q ? They showed a film of him running up and down stairs very fast and then him collapsing, paralyzed but floppy. Normally he was ok. He said this came on sometimes after a meal. Someone said/asked the word channelopathy. Got on google and it led to - the periodic paralyses. Info abt them was posted by a Prof Hanna on the uk Muscular Dystrophy website, and he tests for the pps. It's research funded, and if you can get yr gp to refer you,, you can be tested. That's the good news. The bad news is that the hospital seem incapable of receiving a letter, I kid u not. My gp referred me in Dec. they lost 3 seperate letters, and I finally heard from them - appt end June last week. I'd go for it if I were you. The pps are a nightmare without the added it's all in your head rubbish. Because the unit is centrally funded, not your own health authority, your gp will probably go for it. Also, there is a very clear website on the pps worth a look, not sure of its name, will send it when I find it - all the hypo/hyper/myotonia/whathaveyou described in detail.Hope you are feeling better - I am actually just coming out of another full on crisis - unassisted, - but still alive. hope you're doing betterbest wishes - can send you my email if you like.
    simmah 1 Replies Flag this Response
  • http://www.hkpp.org/contents.html Thanks for the reply. The above link will take you to a listserve of HKPP patients. My email is blippetyblip@hotmail.com I contacted Dr Hanna a couple of months ago after finding his details in the PP section of the Muscular Dystrophy UK site. He said he would be happy to see me with my GP's referral. My GP was under the impression it would be PCT board funded so he has to run it by his manager, but if it is centrally funded then it shouldn't be a problem, I will let my GP know this. I am currently re writing my medical history of symptoms as whilst in Oxford for supposed PP testing (which turned out to be epilepsy testing!?!) the Dr in charge of my case there completely mis quoted several times what I told her about my symptoms. Whilst I was talking to her all she did was jot notes down and not very clearly I may add! Then in the summary letter she says that my symptoms are not in line with PP (not the way she wrote it they're not!) and that I should be treated for low mood (because I had relationship problems last year that made me worse - never mind that is all sorted and I have a good relationship now but my symptoms are the same!) and I should be referred to a Psychologist/psychiatrist! So I will be sending my revised report to her and my Northampton Neuro as well as my GP. And complaining to the Patients Liason and advice service for the complete lack of real care about my problem and the quick dismissals of it being anything serious or not "in my head". Enough ranting now. :mad: Thanks for the replies I am starting to make some headway with linking up to people with the same problems. Chin up and stand your ground! Becki
    Squidgeblip 9 Replies Flag this Response
  • I spent 6 hrs in ER last week having sx of a stroke...been a nurse a long time...don't know of many illnesses with this sx until I visited www.ahummingbirdsguide.com please look...I have same sx as you and there are already hundreds letting me know they have "it" too...old, young and everyone inbetween...male/female/also...Good Luck and Godspeed...mommy cat
    mommy cat 1654 Replies Flag this Response
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