SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Reposting for AmyKate73
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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Reposting for AmyKate73

Hi Everyone! I haven't been here for a while.
Honestly, I felt today, that there was something important here for me to look into!
And normally I would have missed it, but for some Divine reason, I went to the "introduce
yourself" thread and came across AmyKate's post.

So for convenience, I'm reposting here, so it doesn't get to the bottom of the other thread,
where it's easy to miss.



AmyKate73  
Sep 04, 2012
Hello Everyone!

I'm pleased to find this forum and hope that it can be helpful to me and I can be helpful to you all as well!

Just a little bit about my story: In Feb 2012, I went from working full time to being so ill that I could barely get out of bed, and would be totally exhausted with just trying to take 5-6 steps to get to the bathroom. Primary Care Doc did all kinds of tests and blood work, but other than an elevated SED rate (indicative of infection somewhere in my body), nothing could really be found. All the big ones were tested for: Lymes (2x), Diabetes, Myocarditis (infection in the heart muscle).... but all tests, except for the ongoing elevated SED rate, came back normal. In spite of normal results, I got weaker and weaker, and eventually lost the ability to walk w/o assistance- due to pain, tingling, "fire" in my feet and balance/gait problems.

March 17-22 I was hospitalized as Primary Care Doc thought maybe I had Guillian-Barre Syndrome, a peripheral nervous system disorder, but that has since been ruled out.

Since then I have been being seen by my PC Doc monthly as well as am being seen no longer by a local neurologist, but by a neurologist at a well- known teaching hospital. Long story "short"..... still no diagnosis, tho symptoms persist (but 3 mos of PT have gotten me back on my feet again w a support cane), new symptoms appear and testing continues to be done. I am having my 2nd MRI tomorrow both w and w/o contrast.

Neuro Doc has ruled out all peripheral nervous system disorders and says it definitely appears to be central nervous system related... (ugh). He is seriously looking at MS  from this next MRI and will compare it to the one I got in the hosp back in March.  I have a brain EEG scheduled for the end of the month, which Neuro ordered to check me for epilepsy, petit mal, I guess-though I've never had a seizure iin my life to my knowledge- and don't understand how that would cause all the other symptoms I've been dealing with.

From symptoms and research I've done (I also work in a hospital, tho am not a nurse/doctor, but have access to all kinds of med research) my husband and I would not be surprised at all if it does turn out to be MS.

However, this "mystery" illness is taking forever to get a dx for, which is why I'm glad to find this forum. Most of my friends can't understand my situation and (tho they'd never say it) I think they are sick of hearing about it, seeing me not better and struggling. It has caused some isolation, no, a lot of isolation for me! Again, another reason I'm happy to find you all!!

Ok... enough for now. I'm happy to answer (most) any questions anyone might have, and appreciate any support I can receive or give. My family and I continue to wait, pray and hope for a dx, and some possible treatment... but even we are coming to our whits' ends with all this!

Thank for taking the time to read and for being here!!   AmyKate73
19 Comments
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Re-posting continued re: AmyKate73.

Update: I had my 2nd MRI yesterday.

Today, the neurology department called me and said that my MRI was "unremarkable"- so that's good.... But the "mystery that is me" continues.

Next, my neurologist wants (and I do too!) me to see a neuro-ophthalmologist at his hospital because of my vision issues that have been here since Feb, and seem to be manifesting new symptoms- but I don't know when appt will be scheduled.

If nothing "remarkable" is discovered from the neuro eye exam, then I get another spinal tap. And at the end of this month I still have a brain EEG that is already scheduled.

So Neurology doc is still looking, but finding no reason for me to be feeling as poorly as I am or to be having the problems I am.

As glad I am that the brain MRI was "unremarkable", I'm also struggling as it again prolongs the unknown. So, I have very mixed emotions today.... I'm glad, but am also frustrated at another test with nothing "helpful" (please understand I'm grateful there wasn't something awful) and frustrated at the continuation of the "mystery that is me" and having to schedule more tests.

I just (like most everyone here, probably) want to feel better and get my life back!   Sorry.... it's been a rough day.....     :(
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It would be unfair to Tammy to leave her comment out.
So, I took the liberty to re-post Tammy's comment to AmyKate.

AmyKate,
I'm sorry there was no answers yet.Some things take awhile,even years as many on this forum and the MS forum have told me.So keep your faith and keep us posted.

Once you get new info you can start a new thread/post and that will be read quicker.

As I told you in the note I sent, there are some awesome members and they will be along soon.:)

Wishing you the best and lifting prayers too!

Hugs and blessings,
Tammy:)
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Thankyou Niko!
That was so very kind of you.I'm glad you know how to do that reposting stuff.:)
May the Lord bless you!

See AmyKate, I told you we had some awesome members.:)

Wishing the best to ALL!
Tammy:)
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Hey AmyKate , welcome to our intimate and "cosy" little group.

You will find support, make friends here and hopefully get some
useful advice.
I'll be posting next week some time regarding your condition, when things get settled down a bit. Hang in there. You're not alone!
My thoughts and prayers are with you as well.


Tammy, YOU ARE awesome! You Kindness and Love for everyone,
is felt through every single post of yours!

Blessings to all!
Niko
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Hi AmyKate

It is a long journey for diagnosis hun, i have been ill since 2006.

The one thing you should look at is being retested properly for LYMES. I was tested by the standard method and it was found negative, however, when i went to a specialist clinic they sent my tests to Igenex, and 2 other Lymes places one in Germany, and finally they have found I did have LYMES and a co infection of lymes, and they are thinking its still in me, so hopefully i shall start antibiotics next week to see if it will stir the Lymes up again....

I was told by a private doctor I had MS, but for now i discount it and concentrating on the Lymes, hoping it is just that and one day i will be rid of this pain.

Also hun, look up Fibromyalgia and M.E. Your symptoms could be either believe it or not, and I know many people with one or the other and some bed bound.

M.E. is actually classed as a neurological disorder.

Some M.E. information:

Some of the abnormalities found in M.E. patients include: extremely low circulating blood volume (up to an astounding 50%), enzyme pathway disruptions, punctate lesions in M.E. brains resembling those of multiple sclerosis patients, sub-optimal cardiac function and abnormal cardiovascular responses, persistent viral infection in the heart, severe mitochondrial defects and significantly reduced lung functioning.

This is a good web site to explain it:

http://www.ahummingbirdsguide.com/

Not saying you have that but i would look at all the options. M.E. does tend to start with bad fatigue.

Big hugs. Mariax
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Hi AmyKate73.

There are many tests, most are simple, while a few are EXTREMELY
complex, that could rule out most of the possible suspicions, which are consistent with your symptomology and condition.

In order to avoid bombarding you with information, I will be asking you some questions, while exploring some possibilities.

  -You may ask your doctor to give you a 24-hour Holter ECG.
This is something you take home with you.
You know, of course, that an electrocardiogram is a measure of your heartbeat and shows what is going on in the right ventricle, the left ventricle and so on. Tests show that 100%! of patients with chronic fatigue syndrome and fibromyalgia have an irregular heartbeat (a great number of patients  suffering from other- hard to diagnose- systemic infectious conditions have an irregular heart beat as well) as follows:
At various periods during the 24 hours, the heart, instead of working happily away going "bump-BUMP, bump-BUMP", every now and again goes "buhbuhbuhbuhbubbuhbuhbuhbuh". The T-wave (the waves are called P, Q, R, S and T) is normally a peak, and then the wave levels off and starts with the P-wave again. In chronic fatigue and fibromyalgia patients, the T-wave flattens off, or actually inverts. That means the blood in the left ventricle is not being squeezed up through the aorta and around through the body.

-There is also the blood volume test (as Maria mentioned). The normal range for red cell volume is 25 to 35 ml per kg of body weight.
FMS and CFS patients have 7-50% less blood than what their body needs to function well.
Most doctors do not know this or do not check this!

The above tests are indicative of an underlying infectious condition, very difficult to diagnose and manifesting with many symptoms like what people experience in FMS, ME or CFS, MS, etc.

So if you want to save yourself a lot of time, the above tests are a short cut.
Combining them with a polymerase chain reaction test (note: must deal with a very reputable lab as false positive results are common) you have
a three test dynamic that can help rule out or dx your condition easier!

Common deficiencies that are possibly associated:
Malic acid, Magnesium, B12, Vitamin D3, folic acid, Glutathione,
L-Carnitine, EFA's.
Have you had a complete nutritional panel/blood work
and minerals testing(tissue analysis for minerals)?


AmyKate, what Lab was used for the Lyme Disease testings and did you see a "Lyme Literate Medical Doctor"?

Have you experienced any significant trauma(physical or emotional in your past)? Please offer as much detail as you are comfortable with.

Unremarkable MRI's are quite remarkable for they almost automatically rule out MS!(Must leave just a little room for errors and other factors-lol!)

Looking forward to receiving your reply! Please feel free to comment
and to ask any questions. You also may pm me any time!

Blessings!
Niko







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Wow-  Thanks all.  I'm not sure where to start.   Um, I had testing by a neuropsychologist, who based on his findings, believes w/o a doubt, that I have MS.  He suggested that I ask my Neuro to do some Evoked Potential tests.  Initially, the tests were scheduled in the end of Oct, then the hospital called and pushed them back to mid November.  I was so frustrated!  So, I called my Neuro's nurse to ask her if there was anything she could do to help me not have the tests keep getting delayed.  Well, I'm so glad I asked.... I'm having the evoked potential tests in a week from today!!!!  Amazing!!

Um.... also having a sleep study screen that I can do myself at home this weekend.  They will be bringing by the equipment tomorrow for me to do this screening one night over the weekend.  Then, depending on the screen results, we may or may not go further with a full sleep test.

I'm really having a difficult time at work.  My boss is not a very caring person, and it seems lately that she's been all over me!!  I am waiting on a letter from the Neuropsychologist to my work to provide them with some guidelines for the accomodations I need.  Cognitively, I am really struggling...... and thus I am struggling with feeling like I'm "becoming stupid".   And, to have my boss all over my butt is NOT helping me!!  (Can you tell it was a bad day at work today?)

I love my job, normally..... but my boss will not allow me to totally do my regular job, because I am not working full time yet.  But, good news!!  My hubby has gotten a job, after being laid off for 15 months!!  

Niko- you asked a lot of questions.  Let me see what I can do to answer some of them.  None of the tests you mentioned (the 24 hr EKG and the blood thing Maria also mentioned) are anything I've even heard of.  

Maria-  I don't even know what M.E. is.  I guess if I google it, I'll figure it out.

I've had 2 Lyme tests.... whether they were both the "spot" test, I have no idea.  My primary care doc ordered one, and the hospital I was in in March ordered the other one.

I've had a number of those deficiencies tested for.... and I think they were all within normal limits.

Niko- you asked "have you experienced any significant trauma(physical or emotional in your past")?   That would be a BIG YES!  Both in the past as a child, and even several severe traumas just within the past five years!!!  I do have a dx of PTSD, and have faced both physical and emotional traumas multiple times throughout my life.     I'm curious though, what made you ask that question?  What is the thought you had related to that and what all I'm going through now?

As I've said, it's been a very rough and emotionally negative day.... so I'm going to end this for now.   (I'm glad Tammy brought these posts here  to my attention, as I did not know these posts were here.)

Thanks all....  AmyKate


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Hi Amykate73.

If I had a penny for each of my intuitive thoughts, I would be a very rich
person, something that does not interest me at all. lol!
Being able to do the things I love to do comfortably,
suits me just perfectly well.

So the BIG YES you answered, is what I had anticipated you would answer. And it is so gratifying to know that I my Higher Power is guiding me well.
I can relate to what you are going through in more ways than what you can
imagine. Really!  But this is not important at this point.


  The feeling that I get is that in your situation, Healing is absolutely necessary, before medically treating anything. Your suffering does have meaning of course, for it is part of the chosen Path, however, you have reached a point where, you are ready to move on.
Please be patient with me as I move back and forth, from one topic to another, but everything connects at the end.

The reason why your doctors haven't come up with any answers and ALL your tests have returned basically no positive results, is because the root cause of your issues is directly linked to your UNRESOLVED traumas and emotions.

To my surprise, your Neuro-Psychologist did not pick up on this, but instead is certain that you have MS even when it does not comply with one of the 2 basic diagnostic rules: "There must be more than one clearly defined  lesion on the brain or spinal cord".

MS is extremely difficult to dx- ask any member here- but please don't take me wrong. It is not my place to make any determinations, or to rule out MS


I understand and respect the fact that you do work in a Hospital, however, I must urge you to keep an open mind and , as there's seems to be a disconnect between Conventional Medicine and Energy Medicine.

Energy Medicine is a field of medicine, whose domain is beyond appearances, that explores the invisible energies that shape your feelings, your thinking, your health and your well-being.
It can address energetic imbalances, unresolved emotions and trauma,
stored deep inside the body and mind.

"The ultimate approach to healing will be to remove the abnormalities at the subtle energy level which led to manifestation of illness in the first place"
Richard Gerber, M.D.

M.E.(Myalgic Encephalomyelitis) is also referred to as Chronic fatigue Syndrome.

Your Lyme tests if not done by IGenex Labs- ask again any member here-
may not be accurate. And for Lyme Disease you need to deal with an LLMD, as any other doctor is not knowledgeable or willing to dx or treat
Lyme disease properly. (This is unfortunately a hugely controversial field
in medicine, having left tens of thousands of suffering patients in Limbo!
And most members here will attest to this.)


To move forward with your life, ideally you need to use the energy medicine model to heal yourself from the root cause up, in combination with the modern medical model to treat - I'm suggesting the latter with caution, as symptom management only approaches should be for the short term, just to facilitate the immune system's response - any further damage, not dealt with by energy medicine.
And have faith in your Higher Power, that everything will work well, even if it will take some time.

It is easy to get overwhelmed with what you are going through and you're probably feeling also some information overload, so I'll ask only for 2 things:

1.Read again my 2 replies and take notes on what you consider important.

2. Give me some details in regards to your past traumas and events.
  You may message me directly if you prefer. I believe I can help you
and offer you some guidance. Your doctors help is not enough.
They do as they are trained to do within the limitations of the medical protocols, as you probably understand very well, and their time constrictions.
The delicate nature of your situation needs a delicate approach.

So hang in there, I'm here to lend a helping hand.
You have strong Faith and God has a great plan for you!
  
Many Blessings!
  Niko

PS
My Archangel is Gabriel.














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Hi Amy I need to tell you that trauma and PTSD can bring on many issues physically including MS, M.E. or Fibromyalgia.

Please follow the link http://www.ahummingbirdsguide.com/, it will explain a lot about M.E. and even MS and Fibro, as all 3 diseases are very similar.

My daughter was healthy until she had a bad emotional trauma, and went on to develop M.E. It has taken 10 years with her but we are finally on the road to recovery.

I warn you about visual evoked potential tests. MINE CAME BACK POSITIVE, even had lesions on my spine, etc, and still did not get a firm diagnosis of MS from the neurologist.

You can have positive VEP tests with Lymes, Lupus, and other diseases.

You have gone through so much hun, and you obviously have a great strength of character to move forward in your life and even get yourself a job.

Will your husband working now enable you to stop working?

Niko is very thorough lol..he knows his stuff, and has guided me many times when i felt like giving up.

Big hugs. Please if you have time read up on the link i sent you ok.xxxx
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Niko and Maria....   Thank you for all the time you've put into writing.   One thing I must comment on, is that you both are in GB, and I'm in the States.  I mention that because the politics over here (between docs and insurance companies etc) have lead to M.E. being "non-existent".... they've lumped it in with CFS, while admitting that no one really knows what CFS is clinically, or what it looks like clinically.  It sounds like in GB M.E. is recognized as a viable neurological condition, that possibly can be treated.  

As you know I work in a Veteran's hospital, and I spent quite some time yesterday researching M.E.- or at least trying to- in various medical journals and text books, and found virtually NOTHING.  The term "Benign Myalgic Encephalomyelitis" simply does NOT exist over here!!!  

But, upon looking at the hummingbird site Maria linked to, it certainly seems I could have M.E.  Beyond the lack of abnormal results in the MS testing, I find it interesting that M.E. is identifiable partially due to it's ACUTE ONSET.  Certainly whatever has hit me, hit me acutely- very fast and furiously!  

(But, if thinking I might have MS, I can also look back and see symptoms that were ascribed to other things that certainly could have been MS in an earlier form and then February could have been a major flare up-  esp as the amount of stress I'd been under has been at incredibly high levels for a very long time, primarily with, just before Feb, my husband finally returning to live at home after being confined to several psychiatric hospitals for profound depression and suicidal ideations (which brought about his losing his job, and me continuing to work full time and try to continue raising our son in as "normal" a way as possible, all the while keeping in touch with my hubby's doctors and social workers, and trying to see him when possible, if he was within an hours drive time.  Also during that time, I had to sell off many things- our RV, hubby's truck, a large storage shed on our property-  all so I could ensure being able to keep our house payments up and pay the medical bills and keep things as normal as possible for son and I here at home.)  Plus, regarding MS, the research does show that up to 5% of those dx'd with MS show no lesions on their MRIs, yet exhibit other classic MS symptoms.

So... I made an appointment with my primary care, general practitioner for Tuesday after work.  I need to talk with her about how things at my work have changed, as far as the physical accomodations she had put into place when I initially returned back to work after being hospitalized back in March.  My boss tells me that those accomodations "expired" months ago...... which is a problem, because our hospital where I work is VERY large, and, with no accomodations, my boss could easily tell me to go pick up or drop something off in an office a half mile away (within the complex) and without the doc's limitations to back me up, I'd have no choice but have to do it, though I believe it would probably kill me....maybe not literally, but it would do me in for the rest of the day and prob the day after.   So, while I talk to my doc about that, I am also going to talk to her about M.E., but I think it may be a tough sell to even get some of the tests you mentioned, like the 24 hr EKG, because of, as I mentioned, the "non-existence" of M.E. in the U.S.

Interestingly, I had some routine blood work done at my job (an annual thing), and EVERYTHING came back WONDERFUL!  My CBC counts are great, cholesterol level almost perfect, my HDLs and LDLs where they should be, and even my SED Rate (a general measurement of infection within my system) came in at an "8", where as in the Spring when this "mysterious illness" started, my SED Rate was repeatedly at least "30" or higher, indicative of definite infection within my system.  

So, now with it being an "8", coupled with all the normal MS testing results, it would seem that I am not ill.  And yet, trust me, I am still quite ill!!  "Fatigue" or "malaise" don't even begin to describe what I continue to deal with on a daily, no, hourly (24/7) basis!!  "Lassitude" far better covers it- as it connotes an inability or disinclination to be active, physically or mentally. And, trust me, I am NOT depressed...... though I could see that happening sooner than later.... if this "mystery that is me" continues!  LOL!    AmyKate
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Oh, and Maria- you asked if my hubby now having a job would allow me to stop working.  The answer to that is "no"..... at least not for a good long while yet.  As you may imagine, we've got quite the bills to pay off from all these medical things.

Also, if I could get feeling better.....somehow, I love what I do!  I have a Masters degree with dual certification and another specialty area.  I also work for the US Federal Government, which, with the way our economy is, is one of the most, if the most secure employment place to be.  Additionally, I now carry the full medical benefits for the family.  Finally, my salary is hard to beat.  

Ok, more to come possibly later.   AmyKate
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Ugh, I also just looked further into that hummingbird site, and see that it is based in the UK with Australian contributors.    Another possible problem as I am in the States......  *sigh*.
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Hi Amy i despair with the states sometimes lol. Yes i realise they only regonise CFS which is stupid really because it is only a symptom of a disease not a disease in itself lol. You can have chronic fatigue with MS, Lupus, and fibromyalgia lol.

Can I ask you were you tested for Epstein Barr Virus? This can come on very quickly like your illness did, and funny enough many people with MS and M.E. have found to have had it.

I have had EBV and worryingly my titers although they show it is not still active are still way too high. They are 98 when they should be less then 5 when the virus has done its cause.......

Your bloods would have shown a reaction if you had EBV...

You have been through so much hun, i cant even imagine or begin to realise how much.

You mention you have been in hospital recently?

If you havent been tested for EBV I would get tested.

Also I would print off the stuff for M.E. and give it to your physician, the more of them in the states who wake up to this disease the better.

In was the WORLD HEALTH ORGANISATION that actually said ME. was a neurolgoical disorder, so this should cover the states too.

I also think it depends on where you live in the states as I have friends in the states who have the diagnosis of ME.

You could have MS there is no doubt about that...but it did not present itself the way one would expect, but then each illness can be different for each person.

My daughters for example well she was getting small episodes of things and then she got pneumonia, and the aftermath she had M.E.

It was a few years before she got diagnosed with that, but I think it was the correct diagnosis, as with the right care she has improved immensely.

Diet is an important factor in both M.E. and MS.

Lots of Vitimin D, and healthy food, NO sugars and red meats lol or process stuff.

I follow this diet:

http://www.medicalnewstoday.com/releases/83630.php

I try to avoid gluten foods, sugars, and fats and it has eliminated a lot of my burning in my legs. I know if i have strayed as i will get burning more. I have burning now in my legs because i was naughty and ate dumplins and stew with floured dumplins and red meat lol......

I will write more its nearly 7am here, and my hubby has just woken up and i  am going to chat with him, as its his day to stop smoking today.

Big hugs. xxxx I think you are amazing to go through all you have...wow..you took my breath away with your posts. xx
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p.s. There is a forum for CFS for you to chat with people perhaps they can guide you in the states more then I can lol..seems a lot of people on there suffering...well when will the states wake up to this disease........
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Thanks Maria-   Just a few quick comments as I need to get moving (normally to church, but instead I volunteered to go sit with a friend who had a full hysterectomy plus they were looking to see if they needed to remove any cancerous cells in that cavity of her body.  She has no real family, except us in the church).  

I have been tested for EBV.... and I think I got a low number (not sure the exact number, would have to pull out the ppwk to figure it out.... and, not up to that), so that was dismissed, especially as I did have mono about 2-3 months after I had our first son.  (That's another story....  let's just say I haven't had the best of luck with doctors!!  I worked full time, as my hubby had been laid off for a month, nursed and pumped so my hubby could feed our son while I was at work, and technically went back to work against doctor's orders, because I was still recovering from the four, yes four, times my c-section had gotten infected.  But hey, someone needed to provide financially for the family, esp with a newborn!)

The docs kept dismissing my claims of illness (the mono), trying to tell me it was just the "baby blues", and kept trying to put me on antidepressants, which I refused, insisting there was something CLINICALLY wrong, and it wasn't post partum depression!  Well, after seeing ENOUGH doctors, one finally decided to do blood work and the results showed that I did indeed have a current case of mono, and had in fact, based on the antibody markers, had had mono for 12 weeks prior to the time they FINALLY discovered it!!!   SHEESH!!

Ok, well, wanted to at least answer that question, but as usual, I got long winded, and you got "two stories for the price of one".   LOL!!!

Oh- one last thing.   Since the end of July thru now, I've INTENTIONALLY lost 30 lbs, so I've been working hard at getting healthier, and hear your message about diet and stuff.  I'd like to lose another 50 lbs, but frankly this past two weeks or so have been so stressful to me that I've been "bending my eating rules", and thus am not keeping the weight loss going.   But, no fear!  I'm not giving up on that..... I'm figuring (and I hope this doesn't sound horrible) that once my hubby hits the road early tomorrow morning, I can get back on track (not that ALL the stress has been caused by him... he just adds to it, because he refuses to accept or see how ill I am, and thus still leans heavily on me for EVERYTHING... he actually leans on me harder than our 8 yr old son, who is quite smart and independent-properly so.  

Ok, need to get out of bed and hit the shower.....told my girl friend I'd try to be there at her place between 830 and 9 am, and it's 745 now.  Plus, after I leave her place, I have a meeting at church, for choir this year, as we got a new worship pastor, and he's holding his first meeting with us, so it's not like I can just pull on a pair of bum clothes to go to my girl friend's place (she wouldn't care), as I wouldn't DARE go to church looking like that later then!   And there's no time in between when the next "sitting with" shift comes to relieve me and when I need to head into church for the meeting, so I have to get all gussied up... LOL... before I head to my friends!!

Well, I thank you again.  And, for your compliment about what I've been through.  When I hear things like that, I don't know what to say, really, as this has pretty much just been life for me....even prior to this "mystery that is me".  God has been good to me, very good to me.  But, I've also never really been given the easy road to walk in life..... but He doesn't promise us that.  He just promises that WHATEVER we go through, He will be there and He will bring good from everything (no matter how horrible it seems) for us.   And, He already has!!  There's no way I would have ever "met" you, or others, had this "mystery that is me" hadn't occurred and gone on unsolved!!!!   :o)  So, as I've said, I've been blessed in many, many ways!!  

May you have a good day, and good luck to your husband!!  I know that quitting smoking is a very difficult thing to do.... my hubby has done that himself!!!  Good for you for supporting him and encouraging him!!!!!    Thanks Maria!!  And again, thanks for writing- I appreciate your posts, as it is nice to know and hear from others who "understand"!!    Have a great day!!!!!   <3   AmyKate
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                       ABSOLUTE REPENTANCE

"Except ye repent, ye shall all likewise perish."
Luke 13:3

Repentance is accepting to change our false beliefs, our negative emotions, our limiting thoughts.
Dissolve the need to hold on to those beliefs, emotions and thoughts,
for they will make you produce failure, unhappiness and ILLNESS in your life.

Worrying over our past is remorse and remorse is sinful, as we refuse to forgive ourselves or others,or we refuse to be forgiven by our Creator.

You can re-create the past! Absolutely!
Anything "wrong","terrible", "evil" that happened before today, even long time ago, can be totally erased and re-created very simply!

Abolishing old beliefs and thoughts by recognising that
the Universe/God is Perfect and only Harmony was, is, and  will ALWAYS be  present, in each circumstance of your Life, you can change your past, present and future.

Conditions outside of us are only there to supply us with lessons for growth.
They have very little other significance.
The main reason why we are all here, is because we may develop spiritually by overcoming difficulties and challenges in everyday life.

We possess Divine Intelligence, to guide us take advantage of opportunities
for our spiritual growth, disguised as problems.

The above is a very small sampling of a Spiritual Platform, parts of which
I use in Spiritual Energy Psychotherapy.
My choice for it in my post was because I feel it is the most pertinent approach,in regards to your situation.

There are  other suggestions I could offer you in terms of approaching your
situation from a Holistic Medical perspective, however, the Spiritual/Mental/Emotional aspects need to be addressed first, before any
substantial improvement can be experienced, at this time. (My feeling and  intuition)

Do not be surprised with the lack of progress or the lack of useful findings
from your various tests.

There's also a possibility that you may be driven by a sub-conscious influence to ignore many or most things that I'm stating here.
And that's O.K. Perhaps, one statement, one idea will resonate with you
and make the difference.

On another note:
Maria is on to something, by mentioning that CFS is more predominant in the U.S. This is  because of the larger numbers of people there exposed to the risks of contacting CFS, FMS, MS and GWI. There have been things going on for quite some time.
Just do a search for "CFS and infected  spouses". These diseases that have an an infectious origin are transmittable!

Blessings!
Niko






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Hi Niko.... Thanks for writing.  I had to read your post several times, and I think you and I share similar beliefs in God, Jesus, forgiveness and salvation.  And, even putting that aside, for those who may not hold those beliefs, the principles of forgiveness, letting go of the past, letting go of worry and things that bring you down are excellent for everyone.

This week, Monday, my husband started training on his new job.  He's out on the road, driving a big rig with a trainer driver along with him.   Honestly, I felt so well Monday-Wednesday.  It was a relief to have my husband out doing something productive, and just out working.  Unfortunately, Thurs morning, in his early morning call to me (I can't call him when he's on the road) he was a mess, and very angry about something with his trainer, but venting at me and just putting all kinds of stuff on my shoulders.  Then when I refused to take the burden, but told him he needed to figure it out and talk w the trainer or corporate, he got very angry with me.  Ah well.

Unfortunately, it was AMAZING to me how that stress just took an almost immediate toll on my body.  I then had to head to the hospital for more testing, a VEP and BAER, and the after that I stopped at a store for something specific, and cognitively, I was a total idiot.  My brain just wasnt putting things together right.  Thank God the clerk was very patient with me.  

But, I'm a very bright person, and have been all my life.  So, having these cognitive thinking, processing and even speaking difficulties is pure torture to me.  Because its like I'm watching myself "going stupid".  The neuropsychologist says that there's something wrong in the right hemisphere of my brain, and insists it is MS, but as he's a PhD, he can't dx, and the neurologist is still testing, and getting "normal" test results back.

Then, my husband called later on in the day, a bit calmer, but still touchy, and I tried to explain to him how difficult it is on me and my (mysterious) condition when he vents and goes off at me like he did early that morning.  Well, he's still in denial that I am ill.  He has leaned so heavily on me throughout our 14 years of  marriage, that I guess, for him to realize that I am ill would really be a bad thing for him, cuz then he'd have no one to lean on but himself and God.  I told him that some of the things he said (like threatening to quit this job.... when its the first job he's been able to get since he was laid off in July 2011 and we put out over five thousand dollars for him to go to school to be able to get such a job) scared me and made me feel like he didn't care for the family.  Well, he didn't like that, so that resulted in him ending the phone call very quickly, and I've heard nothing from him since... which is unusual, and means he's now quite angry with me.  Ah well.

After all that, I had the headache of all headaches.... even sleeping that afternoon brought no relief.  Then after the final call from hubby, well I guess that additional stress just put the headache (which I constantly have anymore, and never had headaches  before this "mystery illness" started) into a migraine.  I could hardly sleep at all last night because my head hurt so bad and I was nauseous all night long.  Best I could get was cat naps.   I called off work this morning, which, if I don't go, I don't get paid, as I'm out of all sick leave and any other leave.... but I knew enough to know that if I went to work like this today, I was just a walking, tripping fall risk, and a time bomb, that wouldn't take much for me to "go off", and as my boss and I tend to clash as it is, I figured it was safer to stay home and not get paid than to go to work and "go off" of possibly lose my job.

So, today I'm home alone.  Son doesn't have school but is at camp (when there is no school) and they have a fun field trip today.  I figure on sleeping a good bit today to try and feel a bit better.  Son has baseball game tonight, so I'll be going to that, as I have no idea when hubby will be home from this trucking run.  But, then it sounds like he leaves early Sunday morning (like 3 am) for his next run, which honestly, right now is fine by me, as sometimes he is more stress than support.  He just can't (won't?) acknowledge that due to this illness I'm not as strong as I was a year ago- in any capacity, brain or body.  So, even just not having that support is hard on me.

Ok.... well, just wanted to vent, I guess, where I know there would be others who could understand.  Thanks all!  AmyKate
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Oh, and Maria and Tammy (and whomever else) feel free to jump in and add your comments.  Any and all supportive and helpful, encouraging comments welcome and needed!!

AmyKate
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Hi.  I 'goofed' and commented on the Introduce Yourself post near the top. Sorry 'bout that. I hadn't seen this thread yet, but I would still encourage you to get tested for Lyme disease at IGeneX and go see a LLMD.  I still think there is a good chance you have Lyme.  It is common for most or all blood tests to be "normal," or for something that is abnormal to resolve, only for new symptoms to show up.

I know how horrible it feels as I have it. The closest thing I can compare it to was my severe case of mono years earlier when I could hardly get out of bed and certainly couldn't think straight. My Lyme also mimicked MS.  I had a coinfection called Bartonella, too, which is known to make the neuro and GI symptoms of Lyme worse.

As I explained in the other comment, a negative lyme antibody test does not exclude it. It is ultimately a clinical diagnosis, which is why a LLMD Is so important. I, too, am a Christian, and I was praying hard for God to lead me to the right diagnosis and the right doctor. He did, and I feel like I am supposed to help others along that path. That doesn't mean you also have Lyme, but my heart goes out to you to encourage you to see a LLMD so you can know for sure.
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