Discussions By Condition: I cannot get a diagnosis.

undiagnosed for two years

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: cindy Pauk
  • August 3, 2007
  • 00:39 AM

My husband is 44 year old white male.
August 25 2005 he was sent to hospital by ambulance from his work. He was experiencing tinnitius and vertigo and nausea which incapacitated him and was collapsing. At the hospital he was told it was Meinere's diesease.
So we went to ENT and he felt that it was as well and set us up with Specialist at University Hospital to be testing for inner ear disturbance, dizziness and vertigo.

While waiting to be seen, his systoms continued to persist and become more frequent to the point were he could not continue to work as attacks became unpredictable and severe.
He has since been off work August 2006 to present.

Oct. 6 2006, he had four grand mal seizures and was taken by ambulance to emergency. The day before he had had a CT scan, so attending physicians requested results. It came back normal. He was sent home with Dilantin and a referral to a neurologist.

He continued to experience seizures unprecidably, sometimes three times a month or two. They always ended where he was on the ground upon waking and incontinence of bowel and bladder.

While trying to get the seizures under control we had finally went for appointment with Specialist for dizziness etc. He was tested for hour or so and the doctor said that he did not have Meinere's and that it had nothing to do with his inner ear. He thought it might have something to do with the cerebellum.

Neurologist set up MRI scan at another hospital. We called back immediately and another was performed with contrast. Radiologist report a small lesion located in the medial temporal lobe.

He was then admitted to Epilepsy unit for ten days to be monitored. He was released and neurologists could only say that he did not have epilepsy and took him off his medication.

Since his return home in February 2007 we do not think that he has had a seizure, although on a few occasions he has woken up with food or something in his mouth with no recollection.

His systoms have progressed daily, he began to experience small bald patches on his head and once all of his pubic hair fell out. His joints are sore upon waking and takes half the day to loosen. His tinnitius and veritgo worsen daily and sometimes he has acute attacks of vertigo where his lips turn blue and he begins to become cold and shortness of breath.
He cannot walk or stand upright and the spinning has become so bad that he was taken to hospital and they gave him IV of saline and some valium and dopemine based gravol. It did lessen the attack but did not take dizziness away completly.

He has great fatigue and tries after 15 minutes of activity (minor) and is short of breath after walking for that period. He remains in bed most of the day, about 85% if not more. He developed swollen glands in March of this year that have not gone away. They remain hard and swollen and cause him difficulty in swallowing. ENT had no advice on this issue. He also has headache that wanes and worsens daily. Sometimes, I see his eyes jitter back and forth, but no doctor has seen this. He has episodes of unsteadiness where he has to stablize himself with his arms against a wall so that he doesnot fall.

He is sufferring and we cannot get a diagnosis. Please help
cindy and mike

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10 Replies:

  • Dear Cindy and Mike....please google symptoms of chronic fatigue syndrome. I think you may find your answers there...all of his symptoms match...up to and including the lesion on the brain and all of the "normal" tests.I have CFS so I recognize symptoms easily.I wish you both well...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I strongly recommend that your husband goes to see a cardiologist asap, if he hasnt already. He could be having mini strokes. Here is a link for more information: http://www.emedicinehealth.com/transient_ischemic_attack_mini-stroke/article_em.htmGo to different doctors and have multiple tests done to rule things out. Be persistent and do lots of research. Remember, always get second opinions.I hope your husband feels better soon. Best wishes.
    nettyaa 12 Replies Flag this Response
  • Don't be fooled by Mommy Cat, she is promoting CFS in everyone around the world. I honestly think it sounds neurological. This is definitely something to do with the lesion. I think that you need to se an endocrinologist. They are the sleuths of the medical world. They know all of the odd and rare diseases. I think that it is possible that the lesion is causing the seizures. I have read about it on the internet. Does he use any sweetners like NutraSweet? The Aspartic Acid causes these symptoms with some people.Does he have any problems with noise or high blood pressure or anything like that? Has he had any injuries in the last several years or been in a wreck that would've rattled his brain or dislodged something? What is causing the lesion? That is the question. Have the docs suggested a cause or treatment for the lesion? And I am convinced that it is not CFS/ME!!!!
    Anonymous 42789 Replies Flag this Response
  • Have they considered resective surgery?
    rad-skw 1605 Replies Flag this Response
  • Mommy cat is not "promoting" CFS in everyone around the world. She is simply giving a possibility to people who are here asking for answers. Please know that patients with CFS develop lesions on the brain as well as MS and some ALS patients. Stroke-like episodes are a symptom of CFS.Unregistered, why do you continue to bash me? I have helped several people so far and all of them ended up having CFS/ME. You state to these people that you are convinced it's not CFS/ME but what information are you basing this on? I'm saying that it could be a possibility and you are coming behind me telling people you are convinced I am wrong. What if you are the one who is wrong? What type of consequences could that bring?Have a great day...just trying to help....mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • None of the neurologists are worried about the lesion, they say it is too small and looks old. I am a little suspicious, because when I pressed them, they admitted that they do not know what is wrong.
    cindy Pauk 1 Replies Flag this Response
  • The very best advice I can give is to get your husband to NAET or Bioset therapy. Someone in this forum, a while back gave me the advice. I went from having "spells" and taking a lot of meds to no spells and no meds. It is truly unbelieveable. It is a form of non-invasive accupressure and it works.The docotrs will give your husband a diagnosis and a pill....NAET/Bioset will nip the symptoms at the source. Most insurances do not cover it...but the $ you will save in the long run is immense. Even just paying co-pays can put one in ruins.You can google NAET/Bioset and the name of the area where you live. If no luck that way....There is a Bioset page...Dr Cutler.There are pages of Bioset docs listed there.I wish you both the best of luck. May you find peace...mommy cat
    mommy cat 1654 Replies Flag this Response
  • The reason that doctors have diagnosed people with CFS/Me is because alot of docs jump on that bandwagon, it being a "Catch All' disease like FM. Its easy to say "you have CFS,we don't knowmuch about it, but here is some drugs and if that doesn't work. Here is some more and if that doesn't work then you need a holistic healer, let him deal you"It is balogna! Eventually people are cured because the doc happens upon, quite by accident, the right meds, or people become suseptible to the suggestion that NAET is helping and their brain masks the fact that they are still sick. Snd some people heal juwt because of time. It is risky though. What if,for example, you say that they they have CFS, and a doc latches onto that and sends them to a natiralist or whatever...They really have a rare form of lymphoma and they get treated with NAET or acupuncture or whatever, but andthink that they are getting better, but really the symptoms have disappeared because its stage 2 or 3, then by the time they come backit is stage 4 and untreatable. What would you do if you found out about that death?? Would you even feel a little guilty??
    Anonymous 42789 Replies Flag this Response
  • Please don't guess, this is serious business after 2 yrs with no answer.You need to determine if there are any chemical imbalances that can be identified. Sometimes these can be corrected easily. Please start by establishing his nutritional biochemistry. Balances can ONLY be tested by proper lab work. Try looking at http://www.nbitesting.com/index.htmlThey will work with you own physician or practitioner.There probably are other besides this one, I am not affiliated and have no financial interest is this company, they just have a good reputation and provide facts.If an imbalance is detected, you can concentrate on what caused the imbalance. Doctors must be willing to use biochemical results to assist in diagnosing serious problems.If your doctor will not take these results seriously, please locate a 'Teaching Hospital' and go there. A full list can be found athttp://services.aamc.org/memberlistings/index.cfm?fuseaction=home.search&search_type=TH&state_criteria=ALL A teaching hospital will take the challenge of difficult conditions to educate themselves while training new doctors.
    Anonymous 42789 Replies Flag this Response
  • The reason docs have diagnosed patients with CFS IS BECAUSE IT IS A REAL DISEASE!!!!!!!, not because it is a "catch all" or a "last resort"Unregistered...how much do you actually know about CFS?....not much from the sounds of things."Eventually people are cured because the doc happens upon the right medicine?"....ARE YOU FOR REAL?Would a real doctor "latch" on to something a patient brings to their attention without testing for it or ruling out other things before determining CFS?....If they did, they wouldn't be a very competent doctor, now would they?If a doctor diagnosed a patient with Lymphoma....chances are, that person has been sick for a long time....Lymphoma can also be an end result of CFS.Perhaps if you did some research on the subject, you would not be so ignorant to the facts of this disease process and THE NUMBER OF PEOPLE WHO HAVE YET TO BE DIAGNOSED.Have a great day, unregistered....and I hope you figure out your medical problem soon..........mommy cat
    mommy cat 1654 Replies Flag this Response
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