[alexkid]

Hello everyone,

The last 13 months have indeed been challenging, it all started off at my former workplace and having head-pains that were unbearable (and at times would render me useless).

After other symptoms starting happening:

- Constant Dizziness
- Lightheadedness
- Loss of feeling in feet or hands (tingling at times)
- confusion
- eye sight problems

I started my search as to what was wrong with me and in the time had seen nearly 10 doctors and had the following tests done.

- CT of Brain with Dye
- EKG
- CT of Skull / Brain
- ENT Check UP
- Endoscopy
- CT of Brain again (no contrast)
- CT of left side sinuses
- Various blood work (cant count the amount) lyme / mono / etc
- CTA Of head
- MRI with no contrast (brain and neck)

all tests came back with no negative findings (apparently I was healthy but barely able to walk)

Finally a month ago I had an MRI / MRA done at a hospital that received a new MRI machine (apparently very high end). My neurologist called me in for a visit and explained that my dizziness was more then likely lightheadedness (due to low salt in my diet). He then at the end of the meeting made a comment I had a small cyst in my brain (no info on what type / how big) I was taken back. He is well known in his field and said "not to worry, as I was more then likely born with it"

The thing is, I have never had any of these issues until now (and why did all the scans miss a lesion. Here is the technicians write up on what he founds. I need as much info / feedback as possible in regards to what is being said


.................................................. ......................................
Symptoms: Dizziness / Confusion / lightheadedness (walking)

FINDINGS:
There is a 6 mm lesion located in central nodule of the vermis. This characterized by homogenous T1 hypointense signal, T2 hyperintense signal, FLAIR hyperintense signal with no enhancement following contrast administration. It causing mild
bulging of posterior wall the fourth ventricle, otherwise no significant mass effect. No hydrocephalus. No other lesions seen.

Supratentorially, there is no mass or mass effect. No acute infarction or hemorrhage. No extraaxial abnormality is identified. The orbits are unremarkable in appearance. The paranasal sinuses are clear. The mastoid air cells are clear. No
extracranial soft tissue abnormality is identified.

IMPRESSION:
Nonenhancing small lesion located in central nodule of the vermis , likely representing a simple cyst with minimal proteinaceous content. However low-grade glioma cannot be without completely. Follow-up in 2 months interval is recommended to assess
any change in size or morphology.

[Rrae]

I just wanted to welcome you to Neurotalk

I see that you've also posted in the Aneurysm forum. Sometimes it takes awhile to get responses, but assuredly you will find many caring folks here.

I don't have any helpful info to offer, but wanted you to know that I'm sorry you are facing this frustrating situation. Perhaps someone will come along who has experienced something similar.

I hope you have a good medical team looking out for you.

Perhaps you can peek in some of the other forums here for similar symptoms. At the top of each forum there is a section called 'The Stickies'. This is full of great information and maybe you can zero in on the symptoms you are faced with.

Others will be along with more ideas.

Caring
Rae

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around, please keep us up to date. My thoughts and prayers are with you.

Darlene

[alexkid]

Thank You for the kind words !

My symptoms are getting pretty unbearable, and at this point I am loosing the ability to walk / talk anymore.

My neurologist is very highly skilled and well known across North America, however he is confident my issue is not related to the lesion / cyst.

After 12 / 13 months of constant health check-ups and tests, my body is telling me that this issue in my brain is 100 percent the cause of my problems.

I have access to look and see all the imaging I have had done, and I think I have identified the lesion but I could be wrong.

As far as how I feel:

Think of yourself trapped in a story / real life, at times it seems ok (however suddenly a wave of confusion / dizziness / light headed) takes over. Once this happens I find myself staring at a wall or just simply unable to react well. I find the only solution is to have my wife help me get into a lying position and just close my eyes.

Walking has now become the most powerful culprit, I literally feel as if I am going to simply fall down or my body is rocking back and forth. If I sit down on a chair it can relax the situation.

Physically my body / weight / and overall health is flawless as my doctors and various specialists say. However I know something is horribly wrong

The best part of the day for me now is just closing my eyes and going to bed. Sad

[suev]

I would strongly encourage you to get another opinion from a totally different neurologist (and not one associated with the clinic or outfit your current neurologist is affiliated with).


You and your wife have concerns and doubts about your (non) diagnosis and your deteriorating condition. Your current neuro has found nothing wrong, offers no relief, and (from what you are saying) seems to have no course of action to address and improve your symptoms.

Getting another opinion is both your right and your obligation to yourself.

Good luck and I hope you get some answers soon.

[(Broken Wings)]

Hi, and welcome

I know that is frustrating, not having a diagnosis you feel is the right one.

Does anyone here remember the radiologist who come on and was willing to help members understand their findings. I'll look for that and if someon can find him, please let us know here.

Thanks.

Hope you do get answers soon.

[oobadooba]

Sorry to hear about all you are going through. Just take it one day at a time.
I went through a series of test which took 9 mos. included, blood work, CT Scans, MRI and EMG test which all came back negative for Myasthenia Gravis. The EMG testing was the final and it revealed the MG in my eyes. So now the doctor is treating me with medication and is adjusting accordingly to my needs. All this is new to me cuz i never heard of MG. I found this web site in hopes to talk with other people with the same condition that i have. I also do suffer from depression/anxiety and i am on med for this as well. I am doing well with the anxiety even though i now have a disease that there is no cure for but.....treatable. I stay very busy with my P/T job and my hobbies such as beading, crocheting and just spending time with my Hubby and grandkids.
So Alexkid like i said one day at a time. take care.

Originally Posted by alexkid

Think of yourself trapped in a story / real life, at times it seems ok (however suddenly a wave of confusion / dizziness / light headed) takes over. Once this happens I find myself staring at a wall or just simply unable to react well. I find the only solution is to have my wife help me get into a lying position and just close my eyes.

Walking has now become the most powerful culprit, I literally feel as if I am going to simply fall down or my body is rocking back and forth. If I sit down on a chair it can relax the situation.

Physically my body / weight / and overall health is flawless as my doctors and various specialists say. However I know something is horribly wrong

The best part of the day for me now is just closing my eyes and going to bed. Sad

I can hear that you've moved far beyond frustration, alexkid, & I doubt that anyone could wonder why. Oobadooba's advice, one day at a time, is wonderful because it carries with it the whole philosophy of the 12-step movement. But don't take that "day" thing literally--for me, an hour is a challenge to manage quite often. Now & then I do well to hang in 5 minutes!

Since you have so much documentation, & not so much confidence in your neuro, have you gotten 2nd/3rd+ opinions? Is he the only one who's evaluated your case?

You said, "The best part of the day for me now is just closing my eyes and going to bed."

Yes. I suspect everyone here has felt that way, & that's why this place exists (Thanks, DocJohn!) Hang in anyway.

I don't know whether you're a poetry fan or not, but there was a famous pair of lovers (married lovers) a few centuries ago, and the guy wrote once, "a man's reach should exceed his grasp, or what's a heaven for?"

Even though "the best part of the day for [you] now is just closing [your] eyes and going to bed,"--hang in, anyway.

And keep coming back.

[ginnie]

If your body is associating your symptoms with your cyst, I would get another opinion. If nothing else to relieve your worry that the cyst is not the problem. I am so sorry you are having these problems. My neighbor had an issues with his brain, it took three doctors to find the cause. The brain is such a complicated part of our body. I hope that you will find the cause and the cure. I hope many people respond to you with good ideas. There are alot of caring people on this site. Be good to yourself. ginnie

[alexkid]

Thanks for the kind words, I really do appreciate it.

I consulted my GP, and he was in agreement with the neurosurgeon in regards to the cyst not being the culprit, however I DO NOT agree to this.

As the last few weeks have rolled by, I am slowly in my opinion coming to my end.

I am unable to even do basic work, even checking the car or going upstairs has become a nightmare.

My doctor was trying to book me for an EEG / Tilt Test, however his secretary is not a competent person and never got back to me.

I think as many other people here, I am no longer going to fight the situation and continue going to the hospital for different opinions. I have fought this battle for a good time now, with dozens of tests and no results. What happens is what happens (we have no control), try to smile and enjoy what I have.

What hurts me the most,

Literally a year and a bit ago, I was the happiest, outgoing and athletic person you can imagine. I can picture myself with all my family / nieces / nephews. All I can say is never take your health for granted, I would do anything to go back to the way I was.

Good Luck Everyone.