Autoimmune or Neurological Symptoms? Vitreous/Tinnitus problems.

[rmv80]

Hi Everyone,

I have had some odd symptoms over the past 4 months and I'm hoping someone could shed some light since doctors I feel are not digging deep enough and it's starting to affect my daily life. I am a 28/yo male in good health. Day to day I take Omega-3 and lipoflavonoid (for tinnitus).

Here are a listing of my symptoms to date. Vision, Hearing, yawning and tingling have been pretty constant over the past 3-4 months, others come and go

- Vision Problems
    * issues in darkness w/lights - halos & starbursts
    * sensitive to bright lights - images staying "burned" in line of sight for a bit
    * General vague focusing problems & occasional blurred vision
    * Floaters & Flashers
    * Vitreous Syneresis (diagnosed by opthamologist)
- Tinnitus (Occasionally rings substantially louder in 5-10 second bursts)
- Tingling burning in both legs (thighs, front of legs)
- Occasional tingling in shoulders/upper back
- Excessive Yawning (every 1-2 minutes)
- Facial & Head Pain/Fullness that comes fast
- Bright Red Skin Spots on Arms/Face/Body that never go away. Appear with flareups.
- Headaches
- Slight "out of it" feeling from time to time
- Chronically Dry & Red Eyes (schimer test)
- Very dry skin/thinning hair
- Red sores in corner of mouth
- One raised red lesion on leg for 1 month +
- Occasional Random Pain in hips
- Occasional Chest/Heart pain (like heart skips a beat)
- Bad acute lower back pain that shoots down legs (comes and goes over past 7 months)

For bloodwork... CBC (slightly high liver enzyme level), B-12 OK, Lyme negative, Thyroid OK

Had MRI w/o contrast (insurance said no to contrast). Radiologist said he saw 2 areas of increased activity. Neuro said he saw only 1 and was not concerned (thinking it was for MS). Other than that the MRI was negative.

See general DR, ENT, Neuro, Opthamologist, Retina Specilist. With no real information or help so far. I am very concerned about the recent Vitreous Syneresis as I hear it's related to older people. I can not find any relation to Neoru or Autoimmue issues and want to know what could be causing this.

I have an appt with a Rheumatologist and a new Neuro soon, but looking for any direction here. I'm thinking it's not MS and is a different Neuro or Autoimmune issue. Maybe even some kind of a blood or metabolic deficiency? Any help is great apprecaited. Thanks!

[TheLightSeeker]

You seem to have some type of systemic neurological imbalance.
Your doctors have not come up with anything because:
a. They have no idea what to look for or they exercise deliberate ignorance.
b. They adhere too closely to their conventional protocols
c. They are not familiar with conditions, tests, etc.
outside the scope of their practice.

A few things to check.
--Your B12 test was likely for cobalamin B12.
You could be deficient in Methylocobalamin B12, which is the
neurological and bioavailable form of B12.
You need an MMA test for Methylocobalamin
-- You did not mention vitamin D levels.
Just google vitamin D deficiency symptoms. You're in for a surprise.
And if your levels are not high, you won't be in the clear yet.
Look into vitamin D resistance as well.
-- Thyroid testing is fundamentally flawed as they measure only serum levels of TSH, possibly T4 and rarely T3 .
These tests will never reveal anything necessarily that has to do with Thyroid FUNCTION!!!
You need to ask for Free T3, Free T4 and Reverse T3.
In Lymes testing, if you did not deal with a Lyme Literate
medical Doctor (LLMD), Lyme's Disease has NOT been ruled out!!! Far too many false negative results.
Most conventional doctors follow CDC and IDSA guidelines who DO NOT recognize Lyme's disease as a chronic infectious condition!
If the onset of your symptoms have started about 4 months ago, you may be dealing with an undiagnosed and possibly undiagnosable chronic pathogenic  infectious condition which has affeted mainly your neurological system , unless you consult with a knowledgeable LLMD and get your testing done at IGeneX Labs (complete Borrelia and Co-infections Panel).
Check out Neuroborreliosis
You should also rule out candida. A self-screening test
is the way to start. Just look it up under "saliva test for candida" and do it a few times to confirm.
It is simple and fast.
I hope this helps,
Niko

[TitantomTom]

Hi,

I'm a 29 year old male with very similar problems. Just wondering I you have had any luck with this? My diet is very good as a PT. But also concerned of an autoimmune problem.  Best regards

[TvTipp]

Exact same symptoms here.  Started after taking a fluoroquinolone antibiotic, Cipro.  Did anything ever turn up for you?

[karma57]

Sounds to me like you have MS. All of what youre experiencing can occur with this disease. I have Multiple Sclerosis. It is not always easy to dx. But the the vision problems, the burning sensation on your skin, the ear fullness/ringing...i have the same symptoms. Ears and eyes are very very closely related to each other...one affects the other more than you know..or you do know, you just dont know why......did person doing MRI read tell you WHERE the areas of activity were/are???? that could be why youre yawning to....a lesion or 'active area' on that part of your brain may be triggering you to yawn...My first places were on my brain stem (2), my frontal lobe (1) and my occipital lobe (1).  Occipital lobe - my vision blurs now at times esp when im tired....i see dbl at times to.....night driving im not good at now...and i see the halos to. the Brain Stem lesions have effected my balance and energy level, as well as my emotional status...but my balance is not good and i have residual vertigo. (one thing you didnt mention)
I have the sores at the corners of my mouth to that just came upon me about 2 months ago....they can be caused by a def. in B1, B12, iron or Vita E...also can be caused by skin sagging trapping moisture which leads to fungus...my B12 is fine to...i had dr test me to....
You need another MRI with contrast and possibly a lumbar puncture if dr says so...(they dont do these right off the bat but its the only thing that confirmed exacty what i had bc at first they did not know...they are leery of 'labeling' someone with MS bc it opens up all kinds of areas like disability claim, etc.) they dont hurt so dont be scared...i was terrified but felt nothing but pressure bc they numb you up...no big deal.....B vitamins play a role in MS...as well as Vita D...have you had those levels tested. Vita D is a lot more potent than i ever thought...its very very important....
The shooting pain and sensation in your legs, i have that burning sensation in my left thigh, front side only. As well as 'cramp spasms' in my left forearm..right now its drawing up on me.....its called 'SPASTICITY'....
You need to get checked again for MS by an MS specialist and dont wait bc MS can cripple you, blind you, kill you. They have tons of meds out there now that slow the progress so get on it and be aggressive with these drs until you find the answer.Every symptom youve listed is one that ive felt from time to time or always...chest pain by the way may be what is called 'the MS HUG'...i dont have that tightness but very rarely but some people have it a lot. Pain is a symptom of MS. Facial pain is what Montel Williams suffers from. My biggest issues are balance, fatigue, emotional depressions w anxiety attacks and vision issues. Everyone that i know w MS has a completely different list of symptoms as far as how they act and the intensity.
You are a male and the perfect age so go now and get more tests run if possible. See an MS SPECIALIST, not just a neuro doc...they dont know MS that well.....and soon bc within males, MS progresses quicker and is not kind.......its not a male dominant disease so when it hits a male, it hits hard. GO! my email: ***@**** Good Luck my friend!

[imneeced]

Had you by any chance taken Cipro or any of the Fluoroquinolone antibiotics prior to your symptoms? There are many in this family.

[ItchyLittleTexans]

Has your doctor done testing for Scleroderma or Lupus?

[quique3]

Hello Jason,

When I was 19 I got floaters in both eyes at the same time. I went to the Wilmer eye clinic at John Hopkins and they said I had vitreous detachment in both eyes. I also find it very strange that it occurred in both eyes at the same time and at such an early age. I was also diagnosed with lyme disease after testing positive and I think the detachments must have been caused by the lyme disease.

[lisa980]

Hi good night to u all. I am 26 years old and i too  do suffer a few of those symptoms which is extremely worrying to me since doctors too cant seem to target the problem. Having an autoimmune disease seems to  be the most difficult to diagnose since there are so many different types.

My symptoms:
For the past 3 yrs:
hair loss, swelling of legs, extreme back pain, had floaters since i was 15 years old, tingling in my back, legs and arms, heaviness in the head and forehead, sensitive to coldness(finger nails turn blue when exposed to air condition), rashes that my dermatologist said it was atopic eczema and pains in my chest (sternum - was told it could be costochondritis). I also get alot of stiff necks that last for a week or more.

I did tests, my cbc is normal, my esr is normal, rh factor normal but my ana came back positive with 1.40 fine speckled pattern. My rethumatologists cant seem to indicate what is wrong with me, because he was saying that a 1:40 could be normal. Just a few weeks a ago he ran over the tests but i am yet to go and see what are the results. I am in paon and i am stressed alot because i dont know what is going on with me. I am terrified that i go bald since my hair is falling alot. Could someone please tell me what could be wrong with me?

[rmv80]

Thank you for the good wishes, I wish the same to you.

My neurologist suggested the test for Celiac disease (still awaiting results). I also went to a nutritional optometrist/opthamologist last night who took hair samples to test for base mineral and other deficiencies. I am not sure where you are located, but this Dr is located in northern NJ and also practices out of NYC.

I will let you know any results or new information that comes back to me.

[jason80]

Re:VS. Most of the web stuff and wiki claim that VS is usually associated with neurologic symptoms and certainly I'm aware of a couple of folks like me, that seems to be the case.  

Similar to tinnitus however, VS also afflicts people with no other symptoms whatsoever.

What you're describing sounds like entopic phenomemon, I have that too. They seem to be related.

What kind of Dr. recommended the celiac test? I wonder if I should do that. No one has mentioned it to me.

Good luck on your quest to get healthy

[rmv80]

From what I have read, VS is more of a neurological presenting symptoms and not so much something that would come directly from your eyes. I only notice my VS when I look at the sky for an extended period of time without blinking. I have had MRI or brain & c-spine and both were OK, neurologists are testing now for celiac disease (absorption disease which can cause vitamin/mineral deficiency in your system).

On a side note... I am in the process of trying to find a good general doctor to tie all this back to. As of now I am going from specialist to specialist and doing all the computation of the results myself. I guess I'll just find a family doctor that I like and can spend some time with me.

[jason80]

My general feedback from doctors/others is also apathetic regarding the floaters -- since everyone gets them. The problem is that it is not easy to quantify the severity and when one who does have bad floaters discusses it, I think the doctors may think the patient is aggrandizing one's condition.

Your description sounds similar to mine (both in description and when you notice them). Big clumps can be usually seen with my eyes closed. People say that you just ignore them, but if you have bad floaters it's like ignoring the elephant in the living room. They obstruct my vision. Prior to this past April they were non existent my whole life and they came a few weeks prior to my visual snow (VS).  

I also have cataracts forming in both eyes to which the Dr. was very surprised since it usually occurs in one eye, and usually not until later age. The eye doctor agrees something strange is going on with these multitude of symptoms, but has no idea what.

[rmv80]

Hey Jason,

Vitreous Syneresis is the breakdown (liquefaction) of the vitreous in your eye. It normally happens as you age (think 60+) or if you are severely myopic. For me, I'm 28 and am going down a different avenue of thinking with this. I have found studies linking collagen diseases to the breakdown in the vitreous as well as other problems (some of which I have, like Tinnitus). You'll find some people on here who just take the traditional medical way of thinking "you're myopic, get over it" but you have to keep an open mind... I have seen a few different ophthalmologists & retina specialists and they have mixed answers for me from you have a PVD, to just synerisis, to lattice degeneration & retina holes, to you're OK. As you can see I've got a mixed bag of answers right now. For me, the bottom line is that both eyes in about a month have gotten very bad. I am now noticing floaters & the "clumpy"-ness of the vitreous almost everywhere, where at first it was just in certain specific settings. I am not going to give up on finding out what's really going on. It seems no one really wants to take the time to look at rarer answers, it's just "deal with it". I'll keep plugging along and will update if I find out any answers for you.

[jason80]

I share many of your symptoms, run similar tests, and also have no clear dx. If you find out what you got, let me know!

I recommend a search on "visual snow", if you haven't already. This symptom is accompanied by many strange visual effects that you describe. In addition to the usual effects, I see a large, weird distorted spot in either eye when the other is shut.

What is this? Vitreous Syneresis (diagnosed by opthamologist)?

My opthomologists were all generally baffled and unfamilar with visual snow, since it is rare.  My own web research indicates that there are some like us with many symptoms and some that simply have visual snow with nothing else and no harm comes of it.  

In addition to bad floaters I have many of these scary visual effects that mimic a retinal detachment.  My opthomologist suspected vitreous detachment -- strange that it occurred in both eyes virtually at the same time, including the floaters. As such, I think it is just strange effects and the only thing that keeps me from constantly thinking I have a detachment is that usually I can find the same effect in my other eye indicating the problem lies upstream of my eyes.  Good luck.

[rmv80]

I got my test results back and they were negative for Shogrens's. The schermer test doesn't necessarily mean Shogren's, there can be other causes for the dry eyes. Actually all the inflammatory tests came back negative... so off for more testing :(

I have some more detailed information at the bottom of this post that may be helpful w/the rheumatologists results:
http://www.medhelp.org/posts/show/706781

Good Luck!

[Rachelinpain]

wow...we have so many similar symptoms.  even the petechiae (the bright red spots on skin are busted capillaries)...very interested in knowing what you find.  if you have a pos schrimer test shouldnt that mean you have sjogrens...this is my thought for you.  if your are seeing rheum then i ma sure they have tested you for every autoimmune disease.  there are some people who have autoimmune diseases and no positive test.  perhaps this is the cause.  please update on your status...i am extremely interested in your case since my symptoms are so similar.  thanks.

[PlateletGal]

My thoughts on the excessive yawning is that you may want to consider asking your physician if you should have a sleep study test done. I know in fibro & CFS patients, we have some degree of sleep dysfunction.

http://www.cfids.org/archives/2002rr/2002-rr4-article01.asp

If you haven't been tested for lyme disease yet, I would strongly recommend discussing this with your physician. I can tell you that I'm thinking so far that your symptoms could be due to fibromyalgia and / or lyme. But there should be many tests that need to be ruled out first. It sounds like they ruled out Sjogren's Syndrome and probably already ordered an ANA on you. An ANA test could help rule an autoimmune issue.

I hope your physicians also checked your thyroid. One thing I can tell you is that many fibro & CFS patients have a low thyroid, but the standard thyroid tests fail to pick that up. Here's the info:





T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."


Kent Holtorf, M.D.  --- link to article: http://www.immunesupport.com/fibromyalgia-treatment.htm


And burning sensations in fibro patients:

http://www.medhelp.org/posts/show/701890?personal_page_id=33086