Discussions By Condition: I cannot get a diagnosis.

Doctor thinks I am Crazy! Which is leading to Panic Attacks

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: jagsbabe1205
  • June 28, 2007
  • 06:43 PM

For years I was going to my Primary for headaches, dizzyness, temp loss of vision, and a numbness that would start either in my face and travel down my left side into my hand. My doctor sent me for an MRI. In which the Nuero said that I was having Focal Seizures. Ok, the headaches and stuff got worse and it does not occur every day week or month. It sporadic and I expierence this for several months at a time and then it goes away for months.

Ok about three years ago I went to the post office across the street from where I work. Now I do this every day as part of my job, I came out of the post office not recognizing where I was or not knowing where I supposed to be going? I felt like one of the poeple that you read about in the paper. (missing woman since? has disabilities). Anyhow I went back to my primary who then said my blood pressure was extremely low ( had hard time getting reading, (also I have high blood pressure since giving birth to my last child, he is now 14). He told me no work and complete bed rest for a few days stop taking my BP medicine and call him in a few days with how I feel. Now home with my kids its around Memorial day weekend, I was doing really stupid stuff and not even noticing, but the kids did. I put our phone in the freezer one day. I was making potato salad and instead of mayo put coffe grounds in it and like I said I didn't even know that I did it. I though everything was fine other than the contant fatigue and other symptoms I had for years. I did have to stop to think for a few minutes sometime when asked really simple questions to make sure I was giving the correct answer.I was out of work for 7 weeks, at the ER 3 times in this period with different docs telling me different stuff was wrong.

1. CAT SCAN_they told me I had a mini stroke but they were not sure when it occurred and I needed to be admitted to do further testing which said I was having some sort of seizures.
2. They said the mini stroke shows on the MRI with Dmylentaiton and water in a specific area and I was having ischemic attacks but not to take my BP medicine because my bp was jumping up and down when I would sit or stand, they also gave me a breathing treatment and to me to follow up with a nuero to rule out MS.
3. Same thing with the mini stroke , but they said that the ischemic attacks were sporadic and they thought I needed an MRI of the brain to rule out MS but they also thought is was focal seisures.

I went to the Neuro and he did the walk eyes check and push pull hands and legs and he said I was fine other than having focal seisures, he gave me medicine for it

two weeks after starting the med I had a real full blown seizure where I blacked out completely and loss control of my bladder, my body was violently thrashing and this occured ina restuarant. Oh I left out the part where I also was having pain in my legs (which they said is RLS) it's not, I have checked out the symptoms. And of course I stopped taking the medicine that caused the seizure.
I visited the neuro again and told him about the seizure which I never had before his medicine, he said to continue the meds and I would be fine after awhile.

Well here I am years later still undiagnosed and with more symptoms than ever. I cannot deal with heat I feel like I am being fried in a pan, I have a sun allergy, hard time breathing and heavy cough. My ankles and knees swell for no apparent reason, (had x-rays) my lymph nodes in my neck and head sweel, headaches last for days but they are not migranes, just pressure. My legs ache most of the time. the numbness is more frequent and last longer than before I get cloudy alot and feel like I am spaced out sometimes. I did have a test where they put wires on your head and do stuff, I even brought it home for a weekend they said they did not see anything on the test. I also have red palms on my hands and blotches of reddish purple on my arms, legs and beggining on my stomach. I get severe pain in my upperstomach that makes me cripple over in pain until it subsides. The Doc did blood work for this and now I have some sort of bacterial infection in my stomach. I was allergic to the med for that so I guess live with it is the answer. I don't know what else to do. I have seen 3 neuro with 3 diff answers and I think my doc just tends to ignore me now or tell me to get counciling.:confused:

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9 Replies:

  • It is hard to pick you way through all of your problems, but low blood pressure on standing is a symptom of Addison's disease. It sounds like a number of other things could be also explained by this also. Have you had a brain MRI yet? What blood tests have there been? What was the medicine that caused the seizure?
    Anonymous 42789 Replies Flag this Response
  • I don't know about a lot of your symptoms, but I do know about epilepsy. A lot of general neurologists don't do a particularly good job of treating epilepsy. You should go to a neurologist that specializes in epilepsy, an epileptologist. I don't know where you live, but if there's a major city near you or even a smaller city, there's probably an epilepsy center there were you would get the best care. The events that you describe when you were confused after coming out of the post office and when you did strange things like put the telephone in the freezer or putting coffee grounds in potato salad could definitely be due to a seizure. It sounds like you have a lot of other things going on too, but I hope this helps a bit.
    AlisonR1012 4 Replies Flag this Response
  • Many doctors think many patients are crazy. Has it occurred to them that maybe we really are sick?Check out information on chronic fatigue syndromethere are many people in this forum who are having symptoms similar to yourself.Look for a local doctor who does NAET or Bioset therapyLook into ways to boost your immune systemdrink plenty of watersea salt(free flowing)but first, find a doctor who believes that CFS is a real disease. More and more of them are coming around to it.
    mommy cat 1654 Replies Flag this Response
  • Thanks so much for all of your help and suggestions. I have had several cat scans and MRI's not exactly sure what the medicine was that caused the seizure, but I know that nothing like that has happened to me sine I stopped taking it. I live in Philadelphia and have been to Jefferson, Hannehman, Penn and also a local area hospital and receive differing diagnosis from each. Only two neuro's have come up with the focal seizures, one said it was TIA's and the other one said that there are so many neuro things out there and just wanted to do further testing. I cannot keep missing work to go for these tests that are very time consuming. If I lose my job do to this then I also lose my medical. It was continous for 7 weeks and like I said I have been to four seperate hospitals. University of Penn kept me overnight and did a stress test and also some new kind of stress test but then said my heart was fine. I don't remember complaing about my heart I think I went there cause I thought I was having a stroke. Anyhow I am now making an appt with a rumetiod doc?....THANKS AGAIN!
    jagsbabe1205 1 Replies Flag this Response
  • On April 27th, I spent 6 hrs in ER thinking I was having a stroke. Stroke-like episodes are a ssymptom of CFS/ME.I know what you are going through. It is nerve wrackingstick around this forum, you are not alone...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • I have a few questions: How old are you? Are you taking any medications currently, including birth control? Were you taking any meds during the time of your first episode? What were your blood pressure meds at the time? Were you on any birth control during this time or before this episode? Please understand that seizures are a MAJOR side effect of many medications, and most doctors just miss this. I have a personal account of a friend's child who developed a seizure after taking a certain antibiotic, and she went to the ER. They did all sorts of tests and were getting ready to do an MRI (on a 5 year old child!)...my friend asked the right question "Could this have been caused by the antibiotic she took?" - they said absolutely not, and to CONTINUE taking the antibiotic. I have a drug reference book, and when I looked the med up it listed SEIZURES as a side effect IN BOLD!:confused: My point is this - meds have side effects, sometimes they can be severe, and most doctors and pharmacists miss this - they just don't take the time to look up the drug. I am not saying this is the cause, but if you don't know what meds you were prescribed and don't look them up then how will you ever be able to rule it out? www.drugs.com is an invaluable resource and I recommend it to all of my patients who take more than two pharmaceuticals. If you can list your meds it would be helpful. Did they prescribe an antibiotic to treat the bacterial infection? If so, which one? My last thought is to consider trying a more holistic approach to getting your body back in balance. Since you live in Philly there are many many choices for you. It may really help. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Whatever you do you must discover what this medicine was that gave you a seizure, because some other character might try to feed it to you again. I think you need to find out why your blood pressure is going up and down. It might be hormonal (not neurological) and resulting from an adrenal insufficiency (I mentioned Addison's disease earlier). If it is going up and down so unpredictably, this would presumably cause the ischemic attacks. What was the verdict on the demyelination? Finally, I would suggest that next time your doctor mentions counselling that you ask if it is for anger management, because if he (or she) mentions it again you will punch their lights out;)
    Anonymous 42789 Replies Flag this Response
  • Dear Kenn and jagsbabe, DEMYELINIZATION...That is what happens to people with CFS. The World Health Organization calls this disease Myalgic EncephaloMYELItis...myalgic because of the muscles(fatigue, weakness, tremors, twitches ect)...Encephalo because of the brain and neurolocial symptoms.....mylitis.....myelin sheath...inflammation...demyelinization...it's all connectedd to CFS. jagsbabe is having many sx of CFS/MEdizzyloss of visionnumbnessfocal seizuresheadaches"flare ups"confusionlow BPFATIGUEswelling of jointslymph swellingred palmsabdominal painseizuresloss of bladderpain in legs(RLS)sun allergydifficulty breathingcoughr/o MSillness lasting years Doctors can't figure it out because 1) They aren't considering CFS/ME as a diagnosis....and 2) The disease is happening at a cellular level. Ever wonder where RLS came from? I know it wasn't around 100 years agoIt, like many other diseases and new conditions are being linked to CFS, viruses and the havoc the wreak on the human bodyI hope this clarifies some questions...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I am so sorry for everything that's happening to youI'm in a strange predicament myself. About one month ago my lower jaw felt tense...I tried to loosen it up by doing jaw excercises and rubbing it. Since then I've had this sensation of something blocking my throat. Theres a strange clicking sound that comes from the opening behind my tonsils, I felt like I was choking (used to some of it now, as it's been a month). Ears feel full, head felt like it was going to literally pop, lungs felt like they were going to collapse, sinus pressures were excruciating 24/7, trouble sitting up, laying down, and anywhere in-between, uncontrollable spasms of the head, extreme shortness of breath, digestion problems, abdominal pains, chest pains on both sides, sharp tingling sensations on my upper back, white and yellow tongue, disorientation, the sensation of warm liquid rushing up and down my spine, and my eyes would get so puffy they felt like they were popping out of my head. If it didn't hurt in one particular spot - aching, throbbing, or sharp pains would occur anywhere in my body at random times. Particularly under the arms, around the thighs, back, and head. Sometimes parts of my body would feel paralyzed. I woke up about every thirty minutes crying out to God (convinced I was going to die). when I got so exhausted and start drifting to sleep - my heart would start skip a beat and I got so scared I wouldn't wake up if I went to sleep.Went to a family doctor twice. The first doctor told me I was dehydrated and had an underlying anxiety disorder (...yeah). Nothing was wrong with my lungs. He prescribed some otc decongestants, gatorade for dehydration, and gave me a steroid shot for the pain. All the while, looking at me like I should be seeing a psychiatrist. By the time the next doctor visit came around, I could barely stand up. My dad had to hold my hand, vision was foggy and black, literally saw stars in front of my eyes. Whenever I put my hand near my chest - my heartbeat felt very faint - which scared the hec out of me. The blocked feeling in my throat and ears had gotten fuller and worse, flourescent or bright light nearly made me pass out. The third visit was from the family doctor to the ER. They rushed me to urgent care and from there, ambulance to the ER. The doctors did cat scans, mri, blood tests, urinary tests,tested epilepsy, and found nothing wrong. They said my heart was in good condition, my blood pressure was fine, my temperature was fine, my blood sugar was good. He then suggested behavioral therapy and released me. I know the difference between mental pain and physical pain...I've had anxiety problems all my life. This has never happened to me before. And I sure as hec would have nothing to freak out about if it wasn't happening!!! It's frustrating and sometimes I ask myself if I could live like this. The last visit thus far was an ENT. Found nothing wrong. Looked in my ears, throat, nose and said everything looked good. Today (not to sound gross either) went to the bathroom and found that a "test" allergy pill he had prescribed for this week did not digest and looked exactly the same in the toilet as the moment I'd swallowed it. I have to visit him again on Monday and I feel really really discouraged. No doctor visit has helped. I feel like there is constantly a large hand pressing down on my chest or throat. I can't breathe right. All they've done so far is prescribe the easiest antidote, take my money, (as I have no health insurance), and send me on my way. I don't know whats wrong. I've done research, and as far as I can tell it could potentially be a thyroid problem...not sure though. I do have regrets in life. I know I didn't make the best out of it that I could. But if God blesses me enough for me to be able to come to a functional way of living - I'd like to become a nurse or physician who has a genuine passion for caring for people, instead than the ones I'm experiencing here in California. They look at me like I'm crazy. But I know my body better than that and it's telling me that something's wrong.I wish you the best. I really do. I can understand in a way, been through about what seems like three pages full of symptoms - yours seems pretty bad though. If you get tested for epilepsy (which like the person above suggested) - my uncle had it when he was younger. He got treated for it and to this day has not experienced those seizures and symptoms. If not, I wish you healing and hope for a cure!God bless
    Anonymous 42789 Replies
    • February 22, 2009
    • 00:51 AM
    • 0
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