Host of Neuro symptoms, seeing if anyone has any insight?

Edited , 5 users are following.

I'll try to keep this short and sweet. I want to give the progression of my symptoms. I've already had a brain MRI that did have some findings but non specific diagnosis. I have an appointment with neurology this week finally but just looking for support I suppose.

So I have diagnosed anxiety disorder. It had been under control. We moved to where we live now two years ago. About 6 months into living here I started getting these bouts of vertigo at night time. Nothing crazy just a little dizzy. I was extremely fatigued as well which I chalked up to my thalasemia so I'm always on the fatigued side.

Progressively as time went on I'd get these panic attacks caused by a feeling I could not describe which later I would discover was depersonalization. Working with my psychiatrist we were trying the best route thinking that maybe all of this is psychological. Which i took as a fair assement with my anxiety disorder. Until I started having extreme neuro symptoms and discovered I was being exposed to toxicity. So symptom wise, this all progressed to daily vertigo, extreme anxiety, tinitus followed by hearing loss for short periods of time, extreme brain fog, unable to cognitively think of things (for example looking at a bag of candy and knowing it's candy but not comprehending what type of candy it is) Then numbness and tingling in my face, sometimes in my hands and legs, then these brain zaps very intermitten which would immediately set off panic in me, followed by feeling like i just got off a roller coaster. I also had memory issues. So I begged my doctor for help, finally they ordered a brain MRI which had non specific findings of some type of bright white flair and foci matter in the frontal lobes and a T2 flair? (I have no idea what that means) and some subcortical space or a cyst. So it gave a host of possibilities but recommending I see a neurologist which is my next step this Friday.

We found out we had black mold infestation and fungal colonies in our home and in our hvac system. I mean to extreme numbers. We are currently not staying there anymore but I was working from home and was hyper exposed for the two years there. Doctors have said theres no correlation but i find that difficult to believe and need to talk to the neurologist about it.

I'm a healthy 30 year old, certified trainer, eat well... In the past 6 months I have had maybe 4 good days. Every day is a struggle, I had to stop work, and I push myself to function but I feel like i'm on the edge of a complete meltdown because every day feels like i'm sleep walking in a dream due to all these symptoms.

Just looking to see if anyone has experienced any of this and if so, best questions I can ask this neurologist/ any natural ease with ANY of these symptoms.

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8 Replies

  • Posted

    I had a CT scan on Saturday and they found a small calcified lesion in the frontal lobe but didnt seem concerned. Ive been referred now for MRI brain due to something going on with vision and constant muscle twitching which has been going on for a very long time

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  • Posted

    Hi Stephanie,

    After reading your symptoms, (bearing in mind I had not checked if you were male or female) - I then checked your name. Being a female gave me a clue straight away.

    I would suggest you take a look at the symptoms of Fibromyalgia - then do a comparison. I have studied many cases being on here, and also checked various resources.

    See how you get on...

    Regards,

    SteV3

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    • Posted

      Hi Stephanie,

      What you need to do is look at the bigger picture. I suffer from a rare nerve disorder, but just because I suffer from it, does not mean that the other 6 cases have exactly the same medical problems.

      No single person is the same in this world (excluding doppelgängers), where we so say have lookalikes worldwide.

      Just because I don't have certain pains or spasms in certain limbs does not make me exempt from the disorder I have. I was not born with it, it hit me in my early 20's and is a progressive disorder.

      Fibromyalgia is not diagnosed by a Neurologist, you would need to see a Rheumatologist Consultant. Either way it would rule out Fibro for good.

      Just my opinion...

      Happy New Year by the way! I hope you find what is wrong with you soon. There are many disorders that will not show any results from CT or MRI scans, they are standard tests to rule out other possibilities.

      Regards,

      SteV3.

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  • Posted

    hey stephanie.

    I've had the same symptoms for over 2 yrs. i also have whst feels like "electricity" all over or like my insides are vibrating. everything started with my feet(numbness & tingling in feet) then my hands then all over. I've been diagnosed with Hydrocephalus but they're not treating it because they don't think its causing other symptoms lol This from neurologist at UNC Chapel Hill! All last yr I went to various drs had many tests! my T4 was elevated & they found nodule on left thyroid lobe. Here's what alerted me in your post. i had to move n with my daughter 5 yrs ago. for the past 3 yrs I've not been able to work so I'm home all day every day. their house is OLD like 100 yrs . The house needs many repairs & there ate holes everywhere Theres mold sll over bathroom ceiling & ceiling in shower & in all windows. how did you find out u had black mold? i don't know if my condition is related but makes sense. I never had any physical or medical issues til I moved in here. I've had many things come up(woke up one a.m. w/wrist drop, issues w/gluten - was tested & said only gluten sensitivity , etc) before i moved in I was healthy & fit & was able to do aerobics 5-6times a week! Scheduled for MRA of Neck next wk (also have a "whooshing" noise left ear & numbness in face head & neck, can no longer smell or taste) . Am really hoping MRA tells me something! I also had a ANA test come back positive , pattern 1 speckled & pattern 2 homogeneous which equals lupus but dr never said anything??

    If anyone has same issues & found relief let me know! I'm going to look into mold issue because i was healthy fit 54 yo female & now I don't feel anything like that person!?

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    • Posted

      hey susan! we found black mold in the HVAC system, we had it checked because there are mold problems in all the housing area we live in. just took pictures down the intake. i tested it to find out what type of mold it is and get counts. so black mold creates mycotoxins. long term exposire can cause SO many issues, not just respiratory, a lot of neurological things. the problem is that having toxic mold syndrome with western medicine doctors is controversial and most dont think its linked. but myself and other families we all have similar Neurological problems. we were put in a hotel for almost 3 months while they remediated. i felt worse right when leaving and after the 3 months i started having some good days here and there. from my research it can take up to a year to detox from this. and you can have brain damage over time. once again i connected the dots, the fastest way to test the theory is to get out of the environment for an extended time and see if your symptoms improve. i have a friend who was exposed as well and she lost her ability to smell and taste as well so thats interesting you have that. do some research and id get out of there. unfortunately i have to be in the home for one more month then we are out of here. i know there are mold doctors but insurance doesnt cover that but just like you i was healthy before being exposed to all of this, now i can barely funtion some days.

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  • Edited

    hey stephanie (that's also my daughter name!) sorry took so long to respond. I can't remember things I've started, and I've started & not finished all of them! i used to be super organized now I discovered i have the exact same notes or to do lists in 3 different notebooks. so are you out of that house now? are things better for you? the MRA I had of Neck & Head were both normal. So now Neurologist at UNC is at a dead end. I'm in the process of getting ALL of my medical reports, test results etc together so maybe I can make puzzle make sense. As far as the mold i don't have the $$ to test for black mold. going to talk to my daughter & maybe since her husband& his father being in construction for 40+ yrs may know someone who will do it. I've been told the "electric" or vibrating" feeling i have all over is Fibromyalgia but i disagree-- I've read many things on that subject & i just dont agree.. As far as the Hydrocephalus she said they will treat once I start falling down or peeing myself. lol By then the damage done to my brain will be permanent. I'm going to have my Neurologist at home, that's treating my Narcolepsy , look at all my test results & notes from all other Drs & see what he thinks. I've filed for disability because I can't work like this although if I were to find a cure, I'll gladly get a job! The constant isolation (we live in boonies too plus i have no car thanks to a deer!) has been another difficult thing to deal with. I hope when I hear from you next it'll be to tell me everything is great , and all your medical issues are gone! If you have discovered that mold wasn't by chance the reason, please let me know what was/is!! Either way I hope & pray you're better! you're too young (and so am i!) to be saddled with such issues! I appreciate all the info & suggestions!

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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    • Posted

      hey Sue! so we move in about two and a half more weeks and unfortunately im stuck in the home until then. so no improvement every day is a little different so some days are better than others. I actually used 20 dollar mold swabs from AEML labs to test the types of mold. trust me i couldnt afford a contractor. ive been out of work as well and filed for disability and still waiting on that. this morning im seeing an MS specialist to review my brain MRI again since there were white flairs and some spots to see if this is early symptoms of MS. im not sure if thats whats going on but any diagnosis at this point ill take so that way we can treat it. they also ran blood for lymes disease as it can mimic a lot of these symptoms so im waiting on those results as well! i wish i could email you haha. but ill update after todays appointment what the MS specialist says and lyme test results!

      i hope you start feeling better too. i feel like a crazy person when i talk about my symptoms so its nice to know im not alone.

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