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Please help. Desperate for answers. Multiple Symptoms.
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Please help. Desperate for answers. Multiple Symptoms.

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.
14 Comments Post a Comment
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Avatar_f_tn
Sounds like the antibiotics they are giving you aren't getting to the heart of the problem.  The fact that you feel better while taking the antibiotics means they are close.... There are resistant infections like MRSA that need a more aggressive treatment.   P. aeruginosa is an infection that can affect virtually any part of the body including the eyes and ears.  Try to find a doctor that will listen and ask for blood work that will show this particular infection.  - I hope you and the others will get better soon.
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363281_tn?1353103243
Seeing a neurologist is a good start. I do not want to alarm you, but have you been checked for Multiple Sclerosis? You have some of the classic symptoms of the beginning of this. The neruologist should be able to determine this quite quickly.

On a more happier note, have you been tested for the Candida yeast. I swear, it can mimic ANYTHING and EVERYTHING. It is simple stool test, and can be treated with "Nystatin" this is a terrific anitfungal, another good drug would be fluconazole. Candida grows with repeated anti-biotic use and you, poor thing, have sure had more than your fair share, so, the Candida flag waved as I was reading all you wrote.

One other problem to be checked for would be heavy metal toxicity, again, this can mimic all the above problems you described.

I hope they can get to the root of your problems, if the neurologist can  not help, I suggest seeing a doctor or naturopath that specializes in interegrative meds, they do tests that most convential MD's do not do, and they might have the answers for you.

Oh, I almost forgot. Very important, please see a chiropractor, he/she can help with any misplaced vertebrae you may have, if they have several misplaced ones, especially in the cervical (neck) region, you will have the exact symptoms of foggy thinking, blurry vision, etc. A few adjustments may help you as well.

I hope this has helped, don't give up, there is help out there for you. Keep searching, your health is worth it.
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1340994_tn?1374197577
Since you keep getting sick, read about CVAD and see if it sounds like a possibility.  It's rare, but I know somebody who has it.  
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Avatar_m_tn
Thank you for the replies!  Much appreciated.
I will check into all of these things as quickly as I can.  
Hopefully I'll feel my normal self one day.
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Avatar_m_tn
Really hoping it's not MS but that's a real possibility.  Other symptoms I have that I didn't mention are a pins and needles feeling that started on the side of one foot, then moved to the full foot, then to both feet and now sometimes goes into my ankles and once up my legs.

My hands also shake, especially when I'm trying to hold something and yesterday I couldn't push on the clutch of my car without my whole leg jerking uncontrollably.
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Avatar_f_tn
Muscle spasms?  Take Magnesium
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Avatar_m_tn
The more and more I look into it, the more it looks like I have MS.  I'm really scared and sad now.  All of my symptoms point to MS except my clogged ears and the fact that I felt better on antibiotics.  Still, I'm very worried.
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Avatar_f_tn
There are new treatments for MS.  It is not the end of the world.  Years ago there was nothing that could be done.  Now there is physical therapy and medications that work on the nerves of MS patients.  I know because I took care of a lady in a wheelchair with MS.  She had to stay cool all the time and took meds for spasticity.  I stayed with her for 8 months.  By the time I left, she was walking with a walker and doing much better.  (Not that it was my care).  I took her to physical therapy every week where she exercised - also she had massages which helped her muscles.  Don't despair.  PS That was 20 years ago when I took care of M.  There are new meds and ways to treat the disease.  - Even so, I sincerely hope you don't have MS.
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Avatar_m_tn
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.
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Avatar_f_tn
So happy that the doctor doesn't think you have MS.  You might want to eat pineapple to enhance the antibiotics' effectiveness.  Pineapple contains
Bromelain which not only makes the antibiotics stronger, it reduces pain and mucus.  You can also find Bromelain in the health food store.  I sincerely hope and pray that this doctor is right and that you are on your way to better health.  Some people do need surgery on their sinuses to get relief.  I do know it can cause dizziness and a stuffed head feeling.  But maybe a chiropractic adjustment would help the tingling and numbness. (as Sassylassie suggested.)  it certainly wouldn't hurt you to take Magnesium as well  - hardly anyone gets enough of that element.  Again, I am so very happy to hear the good news! Good health to you!
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Avatar_m_tn
Thank you very much.  I'll be taking the MRI to my neurology appointment just to have him double check everything and to see if he has any recommendations. My eye floaters are much less this morning, and most of my visual problems are gone.  It's still there a little bit, but not not nearly as bad.  I'm still having strange patterns of spots appear and disappear though.
But I feel 80% or so better. Not quite my normal self but really close.

Thanks again.
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535822_tn?1389452880
Check out if it could be environmental allergies..ask for a heavy Metal toxicity test ...
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Avatar_f_tn
Was reading about Multiple Sclerosis in my herbal book.  It says to take Gelsimium, eat fish 3 times a week, cod liver oil capsules, flaxseed, vitamin E.   YOu need a homeopathic doctor for Gelsimium but it says it clears the vision and some MS patients become symptom free!!  Wow!
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Avatar_f_tn
Found Gelsemium on Amazon and ordered some for myself as it says it's good for the flu and other respiratory ailments.  (I have asthma).
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