SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Frustrated Newbie :o/
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Frustrated Newbie :o/

Hello Neuro LimboLanders...just wanted to say how much I happy I am to have found this forum and reading your stories and symptoms has made me feel like I may not be "crazy" afterall!  As a 38 y/o female that has been quite healthy I am at the end of my rope w/frustration with the lack of answers from doctors.

My first symptoms appeared about 4 yrs ago with periodic bouts of dizziness and severe fatigue that would last 5-7 days followed shortly after by onset of 24/7 tinnitus (which continues to this day), congestion, and fluctuation of hearing in my L ear.  My PCP would treat the dizziness w/meclizine and the congested ear with loratidine and steroid nasal spray.  The meclizine did nothing for my dizziness, but the ear congestion did seem to resolve.  

In 2011, I had 3 more "dizzy" episodes and sought out an ENT who referred me on to an oto-neurologist.  In Jan 2012, I had an MRI of my inner ear, 1 VNG w/rotational chair testing, caloric testing all which returned normal results, my hearing tests did show some bilat hearing loss that is most likely linked to being subjected to loud noises during my childhood.  I have an extensive childhood history of ear infections and 3 ear tube insertions, so some of these symptoms I suppose are not surprising.    

The oto-neurologist Dx was vestibular neuronitis and otolith disease put me on anti-viral therapy in Feb. 2012.  He felt the herpes virus was to blame for the symptoms and told me to come back in a year.  Not sure if anyone else has experienced bad bedside manner from their neuro but this guy was rude and I vowed never to return to him as he made me feel like I was a nutjob from the get go, but I was desperate for some kind of relief so I continued his anti-viral therapy (with no relief I might add).    
  
Well my story doesn't end there, during the summer some other neuro symptoms popped up such as weird warm spots on my leg, a couple of numb toes, zaps/zings in my leg, goosebumpy patches w/o the bumps, tingly areas on my scalp, an electric current feeling that runs through my arms/legs, feeling of being off-balance most of the time, brain-fog and a hard time finding my words in a conversation, and heat intolerance (ie; hot showers) that bring will bring on the dizzy spells.  

After 4 months of these new symptoms, I visited my PCP in October who instantly mentioned MS, but said because I had no vision problems he didn't feel a neuro was needed at this time.  He did order a nerve conduction study, referral to new ENT and a sleep study (consult on Jan 3rd).  In November, the new ENT ordered a new VNG which was normal and said that the anti-viral therapy probably wont work because the lack of evidence in studies conducted.  The nerve conduction study was normal with no indication of peripheral nerve damage, and this doctor too mentioned MS and felt a referral to a neuro or MS specialist was indicated with all my combined symptoms, and he said he would recommend this in is letter to my PCP.  I was told  to make an appt. w/ my PCP as soon as all my testing was done....so I was waiting till mid Jan 2013 to revisit my PCP.......however,

That brings us to last Friday when I was hit with my worst bout with dizziness and nausea to date along with an entire tingly R foot, so I went to my PCP Friday afternoon....who gave me Zofran and meclizine (which isn't helping).  He again mentions MS but says that my dizziness/vertigo is not a symptom of MS, (no mention of the lack of vision changes this time) but will make a referral to a neuro anyway d/t the tingly foot.  

Sorry for the long post......just looking for some solid answers not guessing from doctors!  It could be this or that isn't getting me anywhere.....I would just like someone to tell me what I can do to stop the progression of my symptoms.....and stop treating me like I am nuts.  The lack of consistency from healthcare professionals is getting really frustrating  :o/    
4 Comments
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1530171_tn?1362547225
Hi BubblesRN74 and welcome to our Group.

We are like a family here and you'll get much needed support and some advice from the members.
I will study your case and probably ask you a lot of questions
and then give you my opinion, advice and comments in general.

You may want at any time ask any specific questions, preferably by posting here(so other members can benefit from the exchange of information) or you may PM me or any other member directly, as this has a more intimate one to one feel.

Now, during the holidays the activity is less, but soon things will return to normal.

You needn't  feel sorry for the length of your post. It's perfectly fine.
And whenever you need an outlet to vent, you got it. it's here!
We have all been in similar situations and understand very well
what you're going through.

Take care!
Niko
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4083235_tn?1351035852
Thank you for your response after my lengthy rant, it is greatly appreciated :o)    

I didn't mention that I have had alot of bloodwork done over the past couple months as well including: CBC, B12, Vit. D, TSH, T3, T4, reverse T3(?)  thyroid antibodies, heavy metal screen, fasting glucose & insulin, cortisol, A1c, iron. All which have returned WNL.    

I have been very fatigued the past 6-7 months so they wanted to make sure I wasn't anemic or have hypothryoid (which is prominent in my family).  Other than a complete hysterectomy in 2006 and my hx of ear tube insertion, my health history is fairly short.  

I am currently taking progesterone, estrogen patch, and some natural supplements as suggested by my gynecologist, because she believes I am experiencing adrenal fatigue which is causing my extreme tiredness.        

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1530171_tn?1362547225
Hi BubblesRN74.

Just a fast reply for now, as I'm at work.
Check for tartaric acid levels. it's a simple urine test.
Tartartic acid is a malic acid antagonist, which malic acid is
insrtumental in the Kreb's cycle, if you wish to look it up.
Tartaric acid is considered a tissue toxin and thus the fatigue.
Also consider being tested for Hypothyroid type 2, as standard blood tests may not  indicate this.
Type 2 hypothyroidism or thyroid hormone resistance is caused by an intracellular calcium/potassium imbalance in all the cells of the body, caused by  too much calcium and  too little potassium inside these cells, neutralizing the effects of the thyroid hormones that are produced and making them ineffective in governing our bodies' metabolic functions.
Correcting the mineral imbalance and carefully monitored thyroid hormone
supplementation -until balance is restored- should suffice to remedy this,
should it be the case of thyroid 2.
I would suggest seeing a knowledgeable Endo to have this checked.
More later.
Have a good day.
Cheers!
Niko
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1530171_tn?1362547225
Yeah, it's true anti-virals are ineffective.
You can get anti-viral effects from consuming extra virgin coconut oil, along with anti-microbial, anti-fungal, anti-parasitic and anti-protozoic action.
Visit the coconut research center website for more details.
It is one of the top functional foods!  Don't listen to the saturated fat and coconut oil myth! It is truly cardio-protective and as a medium chain fatty acid, it offers tremendous anti-inflammatory benefits, when used in cooking instead of cooking oils that are PRO-INFLAMMATORY when heated.
I've read dozens of studies and 3 books on coconut oil!
It's also the greatest alternative brain fuel, when glucose delivery to the brain is impaired. It's one substance that can cross the blood-brain-barrier
with ease and it never stores as fat!
It gets metabolised through the liver and then used just like carbs for energy, without the insulin load.

MS suspicion sounds just like it's unwarranted.
My bet would be on an underlying infectious condition,
and for some reason I feel there's some unresolved memory/trauma
from your childhood ear infections, that is playing out a part presently.

One more thing. Hypothyroid may cause tinnitus. Not common, but possible. Check first for type 2 hypothyroid.

Cheers!
Niko


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