General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


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Old 09-19-2009, 04:48 PM #1
lifesaver54 lifesaver54 is offline
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Default Why so many Neuro problems? Connected?

OK, I need some place to share what is going on with me and not be judged, put down or told I am crazy. Everything I put down here has been diagnosed by a variety of doctors. I think there must be a unifying theory for several of them.

How does anyone get such a list of problems?
I have always tried to live health. My doctors have ruled out any psychogenic basis for them--a total of 3 psychiatrists and 2 therapists.

My new neurologist is running a number of tests to confirm and see how extensive some of the diseases are. So, here is goes--I don't want pity, what I really want to get back enough function to work again and be able to adapt and work with my symptoms.

I was told about the Ataxia and Orthostatic hypotension just 8 days ago and the Trigeminal Neuralgia 2 months ago. Right now I feel like a grand piano fell on my head and I am trying to figure out how this all happened.
  • Neurological and other Physical Conditions
  • Trigeminal Neuralgia--started after head trauma
  • Sensory Ataxia, caused by Hypothyroid disease
  • Orthostatic hypotension, a Dysautonomic disease
  • Degenerative Cervical Disc Disease--hereditary
  • Hypothyroid disease--hereditary
  • Fibromyalgia
  • Ear Infections and Ear tubes

    Psychiatric Conditions
  • Recurrent Depression--hereditary
  • PTSD

Could there be some common denominator for at least some of these problems? I just don't understand how any one person can end up with so many things wrong. I feel like a freak of nature. In June/July of 2007, I was rappelling and hiking in Australia with 41 students. I thought the balance problems were beat with treatment of ear infections and insertion of ear tubes. Since August 2007, it has been mostly all down hill.

How do I talk to my doctors and make sure I am giving them all the information they need? My head is spinning--literally and metaphorically. How do I cope right now?

Thanks
lifesaver
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Old 09-20-2009, 12:07 PM #2
pabb pabb is offline
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Default

Quote:
Originally Posted by lifesaver54 View Post
OK, I need some place to share what is going on with me and not be judged, put down or told I am crazy. Everything I put down here has been diagnosed by a variety of doctors. I think there must be a unifying theory for several of them.

How does anyone get such a list of problems?
I have always tried to live health. My doctors have ruled out any psychogenic basis for them--a total of 3 psychiatrists and 2 therapists.

My new neurologist is running a number of tests to confirm and see how extensive some of the diseases are. So, here is goes--I don't want pity, what I really want to get back enough function to work again and be able to adapt and work with my symptoms.

I was told about the Ataxia and Orthostatic hypotension just 8 days ago and the Trigeminal Neuralgia 2 months ago. Right now I feel like a grand piano fell on my head and I am trying to figure out how this all happened.
  • Neurological and other Physical Conditions
  • Trigeminal Neuralgia--started after head trauma
  • Sensory Ataxia, caused by Hypothyroid disease
  • Orthostatic hypotension, a Dysautonomic disease
  • Degenerative Cervical Disc Disease--hereditary
  • Hypothyroid disease--hereditary
  • Fibromyalgia
  • Ear Infections and Ear tubes

    Psychiatric Conditions
  • Recurrent Depression--hereditary
  • PTSD

Could there be some common denominator for at least some of these problems? I just don't understand how any one person can end up with so many things wrong. I feel like a freak of nature. In June/July of 2007, I was rappelling and hiking in Australia with 41 students. I thought the balance problems were beat with treatment of ear infections and insertion of ear tubes. Since August 2007, it has been mostly all down hill.

How do I talk to my doctors and make sure I am giving them all the information they need? My head is spinning--literally and metaphorically. How do I cope right now?

Thanks
lifesaver
please check out the gluten sensitivity forum.......
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Old 09-21-2009, 05:41 PM #3
dahlek dahlek is offline
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Default Hypo thyroid could be a substantial culprit?

Web it up...symptoms are like many, many neuro problems....meaning= All Over the Map!
For many synthetic or natural thyroid replacement meds usually do the trick. BUT a word of caution? It's not like taking a course of anti-biotics and you are done, IT really means a rest of your life commitment to a med that will help you lead a normal life to a good extent. Further, from my own experience [and I've been on replacement meds for well over a decade?] do see if you can find the BEST endocrinologist in your region! While there are many astute internal medicine or GP docs out there? More like they aren't as thorough in this quarter as you might need.
Once on medications, at first, expect monthly,quarterly or semi-annual blood tests to track the effectiveness of the meds and the dosages. Over my 'hypo-t' life? I've had my med dosages changed at least 20 times in about that decade plus. It is a slow process, but it does work. Good luck! - j
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"Thanks for this!" says:
lifesaver54 (09-23-2009)
Old 09-23-2009, 12:50 PM #4
lifesaver54 lifesaver54 is offline
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Thanks for the replies---I have been tested for gluten sensitivity, negative.


dahlek--thank you for all the information. I will ask about seeing an endocrinologist. Was just thinking about that yesterday.

I did google hypothyroid--it is an eye-opener. Not many people realize how serious hypothyroid is. I hope to work on hypothyroid awareness at the grassroot level.

Called my GP yesterday and asked for another thyroid test--1st since starting medication. This is going to be a long haul with all the problems going on right now. Lots of testing and more.

Thank you both--will be posting more as I get test results,
lifesaver54
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Old 09-23-2009, 02:21 PM #5
prettynpinkk prettynpinkk is offline
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Default hello

Hello, I have just read your thread and thought maybe we can be to each others help. I am a bit scattered and am going through alot of anxiety right now so I may be all over the place.

I am a 28yr old female who at has been diagnosed with many of psychiatrist disorders. I struggle deeply right now with intension span and feel like getting sick this moment because I just want to lay and watch television. Life has been very scary the last 8yrs or so, since I was been trying harder to figure myself out. I look deep at the bad characteristics than anything. At 4yr I was been diagnosed with ADHD and personality differences. At 8 yr I had been diagnosed with several learning difficulties. I never really had friends because I was passed around alot to different school that could help me with my difficulties. AT 14yr I was diagnosed with depression, around 23yr I was diagnosed with PTSD, personality disorder, manic depression,. Some where around my late teens- early 20's I think they said I had ADD, at 25 I paid for an actual psychologist and he said I did not have ADD but I was on border line of having it, at 27 I was diagnosed with anxiety disorder.

It very hard right now for me to talk about it in depth but lets just say I have lost a great deal from this. My child, I have never had a job more than 3 days, I have been single for 8yrs, and have had no friends for 2yrs. I have isolated from the world .

For the last 8 yrs my 2nd biggest dream to accomplish was going to see a team of neurologist in Dallas Texas. I heard of these doctors by watch and seeing one of the doctors on the Dr.Phil show , faithfully. This is going to sound crazy but I am a deep fan of Dr.Phil and his teachings and if Dr. Phil has so much faith to have this doctor on his show SO many times and actually made him a board member of his show now than I trust this doctor. Anyways I have been begging my parents to help pay to see these doctors, and finally 2 weeks ago they said YES !!!! I plan to go in early January. These differant tests they will be doing cost $9500 Canadian so I would like if people on here can help me to see what these doctors really do.

I am passionate about seeing these doctors because I'm sick of psychiatrist telling me I’m complex and try to push medication on me. I may take medication one day but I would like to see how my brain works to know how to alleviate the problems. I have a manger hard time with knowing my self identity, so how the hell is a psychiatrist going to help me when I d even know myself.

sorry for such the long message
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Old 09-28-2009, 01:24 AM #6
dahlek dahlek is offline
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Default That thyroid stuff does get scary, doesn't it?

Especially since tests are so easy to do, yet...not immediately thought of.
Do keep in mind tho? That neuro diagnostics are very complicated?
THIS is a web site that explains the basics of neuro exams and then some.. It's good to know what these folks are going to 'DO' to you before they do it, ya know? http://www.neuroexam.com/content.php?p=2
Read the intro and work your way thru....
In my case, I'd long standing 'hypo-thyroid' which changed a few years ago to Hashimoto's [essentially a dead] thyroid. It could have been due to current or past 'other' immune issues. I'll Never know, nor do I care, really. I only care that it's all being properly treated! Be SURE to get copies of your blood tests! They can tell you a lot when you really look at them-and in my own case? Looking at them myself avoided lots of prospective problems with aspects with 'metabolic' that I could do myself. There are nutrition and supplement forums here that can be of immense help? But, I warn you they are chock full of LOTS of info! Too much to take in all in one sitting-I assure you. But, truly good stuffs.
Hang in there and get your #'s up to a happy level. It DOES make a difference! 's - j
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Old 09-28-2009, 09:31 PM #7
Dmom3005 Dmom3005 is offline
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Hi, i believe you said something about balance problems. There is a specific kind of physical therapy that works with this. You can go to a optha neuro or maybe your own neuro can find this kind of physical therapist for you.
Its also used a lot of times with stroke victims.

Donna
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Old 10-12-2009, 05:46 PM #8
ShastaBear ShastaBear is offline
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Default The Chicken and Egg sometimes gets mixed up into omletts

I have sensory ataxia myself, perhaps because of trauma. The docs cannot see any obvious cause for it.

I also have Bipolar Disorder and ADD both of which are greatly helped by medications. I cannot account for many of your other symptoms but these two are very often co-morbid.

Sometimes when physicians see the mood vacillations they assume that you have a personality disorder based on past abuse when your problem is mainly neurological. Of course, if you spend a very long time in a depressive state it can very well lead to some distorted thinking that can in time become ingrained. Also because Bipolar is genetic families of children who later develop Bipolar are unstable and children who later develop bipolar have less resilience.
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