I got sick over 6 months ago. I have something that I have found many others also have, but none of us ever get any help.
I know that others have the same thing because of the many symptoms and the identical results we get from doctors. Some of them, I believe to be rare.
My daily symptoms are as follows (in order of severity):
- Feeling spacey; Depersonalization; Being "out of it": This is the worst symptom. I feel like I'm dreaming 24/7. It does get better and worse at times, but it is always present. This symptom is slowly getting worse through the months. Every time I think I've gotten used to it and can live with it, it worsens. Sometimes it's not as bad in the mornings, but worsens as the day goes on. If I enter a large public building, like a mall or Costco or even Walmart or Target, it gets much worse. This exact same thing is reported by many of the people who have these symptoms.
- Visual Problems: Since this started I've developed several visual issues. One of them is that everything looks strange. I wish I could put it in words, but me nor any of the others can describe it. Words on my computer screen look odd and it makes it hard to read. They are not blurry, they just look like part of the letters are missing or something. If you close one eye and look at the screen for a moment, it's kind of like that. They have a bit of a flicker to them and I have to look directly at each word to make it out. I also get spots that come and go. Sometimes they are like ink blots or something similar, other times it's bright little stars. Sometimes it's a shooting star that will move across my vision. They were rare at the beginning, but now they happen multiple times a minute. Finally, I have a ton of eye floaters. All sorts of various floaters, from bunches of clear ones that look like a single cell, to clumps, to dark black splotches. I've had my eyes examined twice recently. Just like others who have the same symptoms as me, the doctors find nothing wrong with my eyes. In fact, they can't see any floaters, even through there are so many that they block my entire field of view at times. Another odd thing about the floaters is when they put the drops to dilate my eyes, the floaters went away. I've tried all kinds of eye drops, but none of them have any effect on the floaters.
- Ears clogged: My ears have been clogged up for over 6 months. My GP found them to be full of fluid and prescribed me with antibiotics and Prednisone. When I went back two weeks later he told me they were better but still "dirty". They continue to be clogged and sometimes open. I just went to an ENT who told me there was nothing wrong with my ears. However, he also told me he didn't think there ever was anything wrong with my ears. I quickly learned he has the reputation of being a "quack". Also, my ears have been ringing and it has been getting worse lately. Even though they are no longer full of fluid, they are still always clogged and sometimes pop open, only to clog up again. The ringing has been scaring me.
Some of the things I've had done are as follows: I've been to the hospital twice. The first time I was scared I had a brain tumor. I was hoping for a MRI but they did a CT scan without contrast. They found "no mass" but did find my sinuses were clogged and diagnosed me with sinusitis. I do not believe that I have or ever had sinusitis. Other than my ears being clogged, I have had no other symptoms for sinusitis. I haven't had any colds or anything else in a very long time. I do not know what they found, but I think it's something else.
They gave me antibiotics both times I went to the hospital. I have been on antibiotics three separate times. All three times, after being on the antibiotics for 4-8 days, nearly all of my symptoms vanished. This is also the case for others I have found who have these symptoms. I felt 80-90% well for 3-5 days while on the various antibiotics. However, every time 24-48 hours after my last antibiotic, the symptoms return. They appear to return worse each time, but I'm not certain about that.
One gentleman's post I found on the internet who describes the same symptoms and results as me went on antibiotics for the better part of year, feeling nearly completely better the entire time until he finally stopped and the symptoms came back. He had a culture done and they found multiple strains of antibiotic resistant bacteria in his ear.
I really feel horrible these past 4-5 days. All of the symptoms have gotten worse and I feel ill. I have no temperature or any new symptoms.
My main doctors told me his hands were empty, that he didn't know what to do. Most of the doctors I tell these things to dismiss me as if I'm making it all up or perhaps I'm crazy or something. Many others who have these symptoms also get this treatment. Mainly because all of our tests come back fine. I've had multiple extensive blood work done. They have tested my thyriod, my kidneys and liver, and other various tests.
People with my symptoms have also been tested for many other things, especially those who have had these symptoms for 6-10 years and have been trying to figure it out this whole time. A lot of them expressed desires of suicide and may have carried out those desires as they stopped replying in the forum threads.
I also have been considering it from time to time. This "disease" - or whatever it is - has completely changed me. I used to be this fun guy who loved life. It saps away our joys. Things that used to interest me no longer do so. While on the antibiotics, all of my old joys and desires come back, only to be lost again a day or two after the last pill. I do not know how much longer I can continue to go on feeling this horrible, especially if it continues to worsen. I'm afraid of losing both my sight and hearing as my visual disturbances get worse and the ringer gets louder.
I believe it to be something perhaps similar to Lyme disease, as a lot of people who have these symptoms think that's what it is. Some of them test positive for it but are then told that they don't have when tested further. Others test negative but have doctors telling them that it is indeed Lyme disease.
It appears to be something unknown but I have found literally hundreds with similar symptoms and many who have identical symptoms and results. It's so frustrating that the doctors will not listen to any of us.
I have an appointment next Tuesday with a neurologist. I'm still wanting to get a MRI as I'm not convinced I don't have a brain tumor. Even though it doesn't make sense that I feel much better on antibiotics, but the one thing that doesn't go away with the antibiotics is the visual issues. The spaced out feeling goes away every time, but everything still looks strange.
I don't know what to do or who to see. I get nothing but disappointment with every doctor visit and I don't have a lot of money.
I want to live but not like this. I only look forward to going to bed at night and dread waking up to live out another day like this. I used to have hope but it's dwindled a lot as of late.
My vision has gotten so much worse. It scares me. I'm not just depressed over this any more. It's despair now. I sometimes just sit here and cry so hard that I almost faint. My hands shake uncontrollably. I'm alone 90% of the time.
Please, someone help me.
The following 2 users give hugs of support to: slowlylosingit herpelow (01-15-2013), jimbojetson (01-20-2013)
I'm sorry you aren't getting any resolution of your issues. It really does sound sinus related...whether allergic or non allergic rhinitis - for most of your issues...particularly since the antibiotics help.
If memory serves, El Centro is near San Diego so I would check with the Otolaryngology (ENT) department at UCSD for an appointment to help resolves your issues. It could be fungal or some other deep seated infection or some other issue and they would be best for a determination in your area.
Last edited by Titchou; 01-09-2013 at 07:53 PM.
The Following User Says Thank You to Titchou For This Useful Post: slowlylosingit (01-10-2013)
I am no doctor, but as someone who does have many of the health issues you fear so greatly, I can compare my experiences with you, as mine have all been diagnosed and treated. I hope I can help you feel better..
My first comment is in the diagnosing of illnesses. When a person has symptoms of any known disease or affliction, testing is done to either prove or disprove whether those symptoms match the results or not.
Starting with your eyes, I also have experience diminished field of vision, wooly spots, stars, floaters and the rest. Upon testing, it was determined that I have had lots of strokes upon my retina, from high blood pressure.
The headaches...not surprising either, as following days of excruciating headaches, I had the very worst one while I was snorkeling in the ocean and I had 4 strokes in the water!
The kidney failure, standard testing clearly shows renal failure, elevated creatnine and a low GFR. I face dialysis down the road, but I am doing everything to fight it off.
The odd sensations in your head could be related to ear/sinus problems, infections, etc. Any extra pressure in your head can make for symptoms, as there is limited room in there for extra fluid, swelling and such. I encourage you to keep your ears maintained, so as not to be found "dirty". This means learning to properly flush you ears or have your doctor do it to prevent problems. the idea of a brain tumor is quite extreme and since it has been ruled out, can you accept you do not have one? Be happy you dont and move on.
After 10 years, relearning everything following the strokes, I learned that our attitude is the best form of protection against losing the battle with anything that challenges us in life.
Focusing on what is good, beautiful, healthy, fun, and meaningful is a great use of time. Take small steps to make each day better. Do you enjoy sports, nature, dancing, music, or anything that is positive? Add those things to your life, little by little and your life will be better.
I live with pain and disability every single day. My life was changed in one second, forever. With the great comradeship of my friends on the stroke board, we have banded together to fight, through appreciation of lifes tiny treasures, and by helping others.
I understand that you feel misunderstood and overlooked by the healthcare industry, and I know how frustrating that can be. But be grateful for all your negative tests, and your lack or diagnosis that you would have to live with your entire life. Six months is not long enough to give into this.
Keep searching for answers, and all the while live your life as a warrior and champion for yourself.
The Following User Says Thank You to writeleft For This Useful Post: slowlylosingit (01-10-2013)
I posted this in several forums and it looks like I might have MS. Nearly all of my symptoms (some of which I didn't include in the post) point to MS, with the exception of my clogged ears and feeling better on antibiotics. My visual issues are described quite well in the symptoms of MS. I also have tremors and various other symptoms of MS. I'll know more after my neurologist appointment next Tuesday.
Well I got worse today and couldn't wait for my Neurology appointment on Tuesday. I got really shaky, including my head, but then again I was a bit cold, but I never shake like that. I went to the ER and after hearing about my issues immediately sent me in to have an MRI.
My report says: MRI brain wo contrast; Reason for exam: Demyelinating Disease; Pregnancy: NO
So the doctor tells me I have a really bad case of Sinusitis. I was very revealed to learn that I didn't show any signs of MS.
So I asked the doctor if what I have could cause all of my symptoms, including pins and needles in both my hands and feet, eye floaters, feeling spacey and the fact that all of these things were getting worse. He said yes to all of it.
I've never heard of Sinusitis causing tingling in the hands and feet. What do you guys think?
Also, I read that an MRI is not effective in evaluating Demyelinating Diseases because "MRIs assess changes in proton density. “Spots” can occur as a result of changes in brain water content."
What do you think about that? Or had that been the case, would the doctor have said it was inconclusive?
At any rate, I'm still happy because I'm trusting the doctor. He gave me an IV of antibiotics and a prescription for some strong pill antibiotics to take for 5 days. He told me to follow up with an ENT and that I might need surgery.
Does all of that sound about right?
Hard to believe that sinusitis can cause all of my issues. But I do feel better after the IV of antibiotics.
Saw a neurologist today and I'm worried all over again. He doesn't think my sinusitis has anything to do with my symptoms.
Today I woke up and my head was shaking uncontrollably. Not too bad, but noticeable and irritating (and of course, scary). It went mostly away as the day progressed but I can feel it wanting to shake. Like I have electricity shooting through it.
I've had pins and needles sensation throughout my entire body, with the worst points being my feet, hands, head & neck and back. It also causes my face and back to itch really bad, but not my feet nor hands.
If I hold my arms out my hands shake fairly badly. If I position my legs in certain ways, like crossing them, my feet shake.
He ordered me a lot of blood tests which I need to wait up to 2 weeks to get the results of.
I'm scared that this is going to continue to worsen until I'm just shaking uncontrollably all the time.
Back in April-June of last year I had lumbar corticosteroid epidural injections for lower back pain caused from degenerative discs. I'm wondering if those could have caused any of this.
He looked at my MRI brain scans and was impressed by how healthy it was.
I've spent part of the day looking at all sorts of diseases and other possible causes and there are just too many. I've read a bunch of posts on various forums where people have similar symptoms that continue to get worse and nobody ever figures out what they have.
Went to another neurologist today and like my GP he told me to stop looking up this stuff on the internet. The doctors get mad when I tell them I have been researching my issues online.
He doesn't think the sinusitis is causing my issues either and thinks my symptoms are all in my head. When I asked him why every time I take antibiotics (5 times now) I feel much better with nearly every symptom resolved, including my eye floaters, he simply said "I don't know".
He at least ordered more blood work so I went and had more blood drawn. I gave him a list of what was already done so he didn't duplicate anything. So now I'm just waiting for results.
I'm so sorry you're going thru this I can totally relate I have some strange things going on too not like yours though but it's awful not knowing and having gone to so many drs and having so many tests. I keep three files on my smartphone, one for meds, one for tests, dates and results and the third is a chronological log of events of symptoms, dr visits, tests ordered. This way it is with me 24/7 does get backed up to iCloud too. Mines been going on for 14 months. Good luck and God bless you, Cathy
The Following User Says Thank You to noevr For This Useful Post: slowlylosingit (01-19-2013)