Discussions By Condition: I cannot get a diagnosis.

Left eyelid ptosis - Horner's syndrome or something else???

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: Anonymous
  • May 5, 2008
  • 02:42 PM

Hi everyone, I am writing from Bulgaria. I hope you will be able to help me with an advice about the possible cause for my problem. My neurologist has not come out with a diagnosis. Now I am not taking any pills or going to any medical tests and my problem is still there ...
I am 32. Two months ago I noticed that my left eyelid was droopy compared to the right one. The pupil of the same eye seems more constricted which is espcially noticeable in the evening.My left eyelid also looks kind of swollen and slightly red. I felt and still feel slight pain above my eye below the eyebrow, especially if I move the eye abruptly. The right eye on the opposite seems too opened with a much larger pupil, as if something is wrong with it too. I thought my eyes were tired as a result from working too much at the computer, about 8-10 hours a day for the last 4 years.
I went to an eye doctor, she said it might be Horner's syndrome but was not sure (doctors here are not used to using the cocaine drop test). I went to three more eye doctors, two of them said it was something I had before (one even mentioned congential muscle insufficient development) and that it was just an eyelid muscle problem which could be fixed with an operation. The fourth eye doctor said it might be Horner's syndrome. One drop of the sympathomimetic Visin lifts and wrinkles the eyelid, the eye seems more open compared to the other one while the other eylid seems to drop a little (without an eyedrop instilled in it).
I went to a neurologist and was sent to do various tests. my eye movement and vision is normal without diplopia. My thyroid gland hormones and ultrasound exam are normal, my brain CT and MRI with angiography ( without contrast) are normal too, except for an empty sella which they say is nothing to worry about. The dopler sonography of the neck and head showed no significant vessel stenosis. I had an x-ray and MRI of the neck with normal results, chest X-ray which showed peribronchitis. I had electromiography of two face muscles to exclude myastenia gravis, and the results showed no decrement e.g. no myastenia.
I was wondering whether I should do angiography with contrast???
My nose is stuffy all the time and I had a slight cold with herples simplex near my nose before I noticed my eyelid problem. I had a slight pain in my left ear but the doctor said it was not otitis media (I've had actute otitis media 9 years ago with transient loss of hearing). At the time of my cold I also had something like a painflul pimple in the ear. Another thing is that I always feel my neck and back stiff because of working office work but now I had inter-rib neuralgia symptoms with a very stiff neck which started four weeks ago and have almost disappeared now.
I was looking at old pictures and it turned out I have had a slightly smaller pupil and a slightly droopy eyelid before, it can be seen on pictures dating 7-8 year back but it was a very slight difference, almost unnoticeable; Now the left eye is very droopy, and the right one seems too open and agitated.
Surprisingly I found another picture of mine at five years of age and the situation seemed as it is now. My relatives do not seem to remeber about such problem. All pictures of me as a baby beforehand and as a student afterwards are normal, with perfectly symmetrical eyelids and pupils.
I was wondering whether this could have something to do with allergy or some infection in the nose, orbit and ear. (I have another painful pimple in my ear right now).
If you have any ideas please help !

Reply Flag this Discussion

18 Replies:

  • I have droopy eyelid for a few years. It started with Bells Palsy and then I got Graves Disease an autoimmune disease of the thryoid and that made it droop a bit more and then I am now in perimenopause and the hormonal fluctuations that come with that are causing it to droop and sometimes it is worse than other times. Since I am in perimenopause and getting "older" I am also having fluctuating vision...not dramatic, but I can tell. Eyes are ok by doctors tests. So for me the dooping was caused by 1. Bells Palsy (you don't have this)2. Thryoid problems ( you still MAY have this..lots of doctors don't know the new ranges for normal levels of TSH, FT4, and FT3, nor do they test for Hashimotos or Graves....3. Ovarian hormones (perimenopause, Birthcontrol Pills, other ovarian reasons. Hope this may help. Joan
    Joan5555 316 Replies Flag this Response
  • Myesthesnia gravis perhaps?
    aquila 1,263 Replies Flag this Response
  • Thank you very much for posting in my thread! I got tested for TSH, FT4, FT3, TAT and MAT and they were OK. I can't say what ranges was used for assessing the results because I am away from home for a few days but will definitely have a look when I get home. Could you please tell me where I can look up the new recomended ranges? May be I should repeat the tests in a few months and see whether anything has changed.I hope it is not myasthenia, the electromiography (an exam during which they used electrical current to see how the muscles responded) showed no decrement, which they said excluded myasthenia for now, and the MRI of the head showed that the ocular muscles were not thinned (this is what I understood) which also excluded ocular myasthenia.In my non-professional opionion the Visin drops reaction and the constricted pupil that goes with the droopy eyelid probbaly show that it is Horner's - a sympathetic problem, as if there is no sympathetic innervation to the muller eyelid muscle and the pupil dilator muscle, but the doctors here are not very used to investigating such problems I guess, because they just made me take viatmins for several weeks before ordering CT of the head and in the meanwhile I read about Horner in English in the internet where I could see that Horner's syndrome required a systematic investigation of the sympathetic pathway from the eye to the thorax and back to the eye along the carothid artery. That is why I insisted to have MRIs of the head and the neck as well as radiography of the lungs (to exclude Pancoast tumor) and paid for these tests myself. My neurologist thought I was getting crazy requesting all these tests and finally just sent me home with antidepressants which made me feel very tired and sleepy and sometimes too agitated, so I am not taking them anymore. From what I have read there is a reason for this condition, the bad thing is that in Bulgaria the healthcare system is left with little financial support right now and the good professionals are leaving abroad for better jobs. So I, as well as many other people I guess, are just left without proper treatment :( I will be very greatful for any other ideas !
    Anonymous 42,789 Replies Flag this Response
  • Generally FT4 should be in the middle of the lab ranges. The FT3 should be in the upper 1/3 or so. This is general and highly individualistic so just general. NOW for TSH we get a clearer picture though you need all FT3, FT4 and TSH to propperly assess thryoid function. Here it is: The American Association of CLinical Endocrinologists (the thyroid doctors) recommend a TSH of between 0.3 and 2.5 (sometimes 3.0) as the normal range. Anything outside this normal range BUT ALSO YOU MUST LOOK at FT4 and FT3 to get a very clear picture is suspect for thryoid problems and intervention. Joan
    Joan5555 316 Replies Flag this Response
  • Thanks Joan! I will check my results as soon as I get home.
    Anonymous 42,789 Replies Flag this Response
  • Here is a picture of my eyes when looking down. if I rub my eyelid, something like a moving bump appears above the eyelid. What could it be ? Any idea? Thankshttp://www.postimage.org/Pq1rn3ur.jpg
    Anonymous 42,789 Replies Flag this Response
  • I have the exact same thing! Except I haven't been through all of the tests yet to tell me that I don't have everything else. However, I know that is coming, I am going to have all of the tests, everything will say im normal, but my eyelid will still droop. What is your progress? Any news?
    Anonymous 42,789 Replies
    • September 10, 2008
    • 06:10 PM
    • 0
    Flag this Response
  • I have the exact same thing! The doctor's don't know what it is either. Any news on your conditions? How did you fix this?
    Anonymous 42,789 Replies
    • September 10, 2008
    • 06:13 PM
    • 0
    Flag this Response
  • Hi newatlanta! This condition seems very rare and I have stopped hoping I will hear from some one experiencing the same thing!I feel well but my eyelid is still droopy. All my tests were good and I have stopped going to doctors and doing tests. I feel very well except for the way my eylid looks but I am hoping to have it operated to correct the ptosis.I now feel happy that there is no serious underlying condition and have stopped worrying so much about it.I hope everything is well at your end too, best regards and hugs :)
    Anonymous 42,789 Replies
    • September 12, 2008
    • 07:45 PM
    • 0
    Flag this Response
  • Hi newatlanta! This condition seems very rare and I have stopped hoping I will hear from some one experiencing the same thing!I feel well but my eyelid is still droopy. All my tests were good and I have stopped going to doctors and doing tests. I feel very well except for the way my eylid looks but I am hoping to have it operated to correct the ptosis.I now feel happy that there is no serious underlying condition and have stopped worrying so much about it.I hope everything is well at your end too, best regards and hugs :)hello angiimy name is mariam and i have so many of the symptoms, as you described, i don't have any health problems and now for the past four months i have really droopy eye lids all of the sudden..one eye is worst than the other one and they are both so puffy , like i just woke up or have been crying..but more than that the past few days i noticed that the one of my eye' pupil is getting smaller and it looks like i am staring from that one eye...it is not too obvious...but i can see it ..i have gone to 4 doctors so far and just did a blood test and have an appointment for scan in two weeks..what is different from your case is, that one eye (it is my right eye) is bordering me so much...it doesn't heart..but it feels like someone is holding the corner of it and or it is (wider) ...and when i press on it it hearts ...i am so worried about this..i hope i can write to you next week with some diagnoess that would be helpful to you too..please keep writing..thanks. and best of luck to you.
    Anonymous 42,789 Replies
    • November 20, 2009
    • 05:47 AM
    • 0
    Flag this Response
  • i also have droopy left eyelid, however it comes and goes about every 1-2 hrs. there is a feeling of cramping or spasm pulling my eyelid down, after 7-10 minutes its released and eyelid returns to normal, it is painful sometimes. I have been to 7 doctors, ptosis, hemifacial spasms and brain tumors all ruled out. botox didn't help. please can anyone help?
    inyc144 2 Replies
    • February 28, 2010
    • 04:14 AM
    • 0
    Flag this Response
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  • Hi everyone, I am writing from Bulgaria. I hope you will be able to help me with an advice about the possible cause for my problem. My neurologist has not come out with a diagnosis. Now I am not taking any pills or going to any medical tests and my problem is still there ...I am 32. Two months ago I noticed that my left eyelid was droopy compared to the right one. The pupil of the same eye seems more constricted which is espcially noticeable in the evening.My left eyelid also looks kind of swollen and slightly red. I felt and still feel slight pain above my eye below the eyebrow, especially if I move the eye abruptly. The right eye on the opposite seems too opened with a much larger pupil, as if something is wrong with it too. I thought my eyes were tired as a result from working too much at the computer, about 8-10 hours a day for the last 4 years.I went to an eye doctor, she said it might be Horner's syndrome but was not sure (doctors here are not used to using the cocaine drop test). I went to three more eye doctors, two of them said it was something I had before (one even mentioned congential muscle insufficient development) and that it was just an eyelid muscle problem which could be fixed with an operation. The fourth eye doctor said it might be Horner's syndrome. One drop of the sympathomimetic Visin lifts and wrinkles the eyelid, the eye seems more open compared to the other one while the other eylid seems to drop a little (without an eyedrop instilled in it).I went to a neurologist and was sent to do various tests. my eye movement and vision is normal without diplopia. My thyroid gland hormones and ultrasound exam are normal, my brain CT and MRI with angiography ( without contrast) are normal too, except for an empty sella which they say is nothing to worry about. The dopler sonography of the neck and head showed no significant vessel stenosis. I had an x-ray and MRI of the neck with normal results, chest X-ray which showed peribronchitis. I had electromiography of two face muscles to exclude myastenia gravis, and the results showed no decrement e.g. no myastenia.I was wondering whether I should do angiography with contrast???My nose is stuffy all the time and I had a slight cold with herples simplex near my nose before I noticed my eyelid problem. I had a slight pain in my left ear but the doctor said it was not otitis media (I've had actute otitis media 9 years ago with transient loss of hearing). At the time of my cold I also had something like a painflul pimple in the ear. Another thing is that I always feel my neck and back stiff because of working office work but now I had inter-rib neuralgia symptoms with a very stiff neck which started four weeks ago and have almost disappeared now.I was looking at old pictures and it turned out I have had a slightly smaller pupil and a slightly droopy eyelid before, it can be seen on pictures dating 7-8 year back but it was a very slight difference, almost unnoticeable; Now the left eye is very droopy, and the right one seems too open and agitated. Surprisingly I found another picture of mine at five years of age and the situation seemed as it is now. My relatives do not seem to remeber about such problem. All pictures of me as a baby beforehand and as a student afterwards are normal, with perfectly symmetrical eyelids and pupils.I was wondering whether this could have something to do with allergy or some infection in the nose, orbit and ear. (I have another painful pimple in my ear right now).If you have any ideas please help ! I AM HAVING A HECK OF A TIME GETTING MY REPLIES POSTED SO i WILL TRY AGAIN! Have you been checked for RHS (Ramsay Hunt Syndrome?Also, please research your Thymus info.
    firebird56 14 Replies Flag this Response
  • www.aapsus.org/ajcm/2009/.../ajcm-summer2009-upper-eyelid-ptosis.pdfThe above is a link to a long article that will provide lots of information.However this maybe of interest as mitochondrial myopathy can cause this.Acquired isolated unilateral or bilateral blepharoptosis has many aetiologies. When the pupils are normal, a myasthenic syndrome or myopathy has to be ruled out. If the tests for myasthenia gravis are negative, the next step is to perform a muscle biopsy to establish a diagnosis. Muscle examination may show a mitochondrial disorder, non-specific abnormalities or be quite normal. We identified three patients, who had previously undergone various investigations, including a muscle biopsy, whose lid ptosis disappeared using eye drops containing naphazoline nitrate, a sympathomimetic drug, thus suggesting partial Horner’s syndrome. We emphasise the usefulness of this simple and cheap test before performing more traumatic and expensive investigations
    chrismia 159 Replies Flag this Response
  • Hi newatlanta! This condition seems very rare and I have stopped hoping I will hear from some one experiencing the same thing!I feel well but my eyelid is still droopy. All my tests were good and I have stopped going to doctors and doing tests. I feel very well except for the way my eylid looks but I am hoping to have it operated to correct the ptosis.I now feel happy that there is no serious underlying condition and have stopped worrying so much about it.I hope everything is well at your end too, best regards and hugs :)I have had the same thing since about 1985 I am now 48 and have got used to it. I always look slightly odd in photos my left eye does not react to light the same as my right. Mine started after a long run. I think it is due to a cerebellum tonsil. My ct scan back then showed a tuck into my upper spine. I sometimes get headaches but it doenot effect my day to day life. Good luck hope this helps. Jim
    Anonymous 42,789 Replies Flag this Response
  • ...so to help me understand, please, does this mean a diagnosis of Ramsay Hunt or a Bell's Palsy has been diagnostically ruled out? Thanks
    firebird56 14 Replies Flag this Response
  • This is what i have been reading about horner's syndrome and may help! You say that you have sinus problems! Horner's Syndrome has been linked to lesions (scarring tissue) that have been aqcuired from repeated inner ear infections! Also, I think you mentioned that you had "herples" around your nose! Did you mean "Herpes"? If so, this has also been linked to Horner's Syndrome whith the reintroduction, of herpes, to your system in the inner ear erea! I too have been going through almost the exact same thing as you! It is scary as ***l! Specially the neurological aspects! It has been a month and it seems that it has improved substantially! Apperantly the nerves that have been damaged can heal themselves, but you need to improve your well being with good nutrition, exercise and putting the least amount of toxins into your body. Clean Living! I hope this helpsShawn
    Anonymous 42,789 Replies Flag this Response
  • i have read about such a treatment too
    michaelgmaloy 2 Replies Flag this Response
  • hi everyone, i'm a 45yr old female with left eye ptosis for the past 2.5 yrs. the strangest thing is it only happens with I ovulate and goes away when i have my period. my doctors are baffled, has anyone heard of something like this?
    inyc144 2 Replies Flag this Response
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