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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
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163240 tn?1337907961

can anyone give me a clue as to what is going on with me

I'm 39 yrs old and have been having problems now for 9 yrs with no one being able to tell me what is wrong. It started out as fatigue and lower back pain, they sent me to physical therapy cause my lower back muscles were in a constant pulled tight, that didnt help at all, the back muscle tightness has grown to encompass most of my back. Now I have been having problems with my legs going totally numb and making me fall. 3 episodes in the past 5 months. I have been also fighting with memory problems for most of the past 9 years, cant seem to remember appt dates or times, things that I was going to do, it gets so bad that I have an alarm on my phone for everything from calling to make appts to all appts. I constantly deal with pin and needles feeling in my arms and feet, it makes it hard to drive cause my hands will go numb and get the pins and needles feeling in them and it hurts. I've had doctors tell me its all in my head to fibromyalgia to they arent sure. I used to be able to walk all over the place with no problems now I cant walk through the grocery store without being in pain and exhausted. A friend of mine suggested that maybe it was MS as she has it and some of my symptoms mirror hers. I also deal with Migranes weekly. I have also been sent to pain management classes when the muscle relaxers didnt help either and I finally said no more pain meds or muscle relaxers as they werent helping at all. I also have had 3 periods of time where my vision goes blurry for no more than 1hr. I have also been having recent problems where it feels like a tight band is across my chest and also around my calf. Feelings as if there is water running down my leg but nothing is there or that a bug is on me (occurs daily)
I have 2 children 14 and 7 one was a c-section, i had a hysterectomy last year do to they couldnt get my periods under control would have my period for 4 weeks get a few days break and have it again for 6 weeks get a week break and have it for 4 weeks again. I have a family history of diabeties, heart problems, depression, some form of MS that attacks the muscles.

Ok found my list i had made for my doctor maybe a little clearer than what is posted above but dont know if they have the same things listed or not. but they all add up to my life

Head- Get headaches weekly not your usual headaches migraines with stabbing sharp pain in my whole head
         Blurry vision need glasses but cant wear them do to my eyes always seem to be changing in amount of blurriness and vision capabilities
         Jaw pain feeling of muscle spasms in my jaw 2-4 times a month
         I get eye twitches that can last several hours at least 2-4 times a month
         Constant ringing in my ears can get loud enough that its painful
         Hearing loss- esp with being able to process and hear what words are being said
         Feeling of being off balance and dizzy
         brain feels foggy and I am extremely forgetful
         constant fatigue and rest and sleep dont help

Body-
         Intense burning sensation in neck and shoulder and back- daily
         Muscles in back are progressively being pulled  tight started as lower back now has gone up my back to almost my neck area, becomes worse the longer im on my feet
         Urinary incontiness (sp)

Arms-
         hands go numb and cramp- daily
         pins and needle feeling when I use them for normal everyday things-daily
         burning sensation in arms-daily
         getting harder to drive cook and write as they go numb, pins and needle feelings with small usuage. cant peel more than 3 potatoes without it starting and can only drive a few miles before the feelings start.

Legs-
         pins and needles when i walk or stand to much ( cant get through a grocery store or walk more than 2-3 blocks before it starts then progresses to numbness and extreme fatigue which causes me to have to stop)
         have lost feeling in legs causing me to fall 5 times in the last  4 months
         Feelings of creepy crawlies on my which causes me to scratch and scratch several times weekly
         Loss of balance from walking- almost daily
8 Responses
163240 tn?1337907961
sorry post was so long.
I have had a emg/ncs all normal
Bloodwork all normal
Have an appt on Nov 18th with neuro finally after so many years
1530171 tn?1448133193
Hey chefaid90.
It will have to be more than just a clue.
Please bear with me.
-The most important issue that most people face, suffering from FMS, CFS, GWI, ALS, MS,Lupus, Lime etc., is Low Self-Worth!  Not the condition itself, not the symptoms.
- And the the most important Allies to help overcome these conditions are Mental and Emotional  Fitness.
Personally, I have advised and counseled thousands, facilitated
numerous sessions for sufferers with all kinds of issues and imbalances,
using Reiki, EFT, Energy Psychotherapy, Hypnotherapy.
The most amazing observation from my experience with all of this, is that the vast majority of people improve only when their self-worth gets a significant boost and the mental/ emotional balance is restored!
I can offer you my advice and opinion (which I will in a minute) however, only You can make it work- if this meets with your approval or your PCP's. And for you to make it work it requires a High Self-Worth and Mental/Emotional Strength.
So this may be the 1st step to help you get out of Limbo Land.

The following is from another reply that I sent recently with some modifications, and basically it is  applicable to you as well!

There's some light at the end of the tunnel!
Please stay  with me as this is a bit complex.
* The likelihood of getting any positive results  in the future from more  blood tests, scans and MRIs is extremely small. Even through your Neuro in November unless he has specific training in what I'm describing below.
* Your symptomology indicates a systemic disease, infection or disorder. Systemic meaning affecting any system or systems.
* The negative findings so far, are indicative of an elusive and evasive disease pathogen.
* Mainstream medical doctors are not trained in detection of "non-detectable" pathogens.
(And ,yes, many sufferers, because of this, have been  labeled  as hypochondriacs,
compulsive complainers, or paranoid by their own doctors! No it is not in your head! if anyone has suggested this.)
* The onset of the symptoms is rather fast -if not sudden- and the disease pattern of this "mystery" condition starts affecting your cardiovascular,  or muscular,  or pulmonary,  or neurological,  or skeletal  -not necessarily in this order-and any other system in your body!
Well, there's only ONE possible cause that that conforms to all the above observations.
Pathogenic Mycoplasma / Borrelia Infection or Co-infection!
(Lymes Disease, one of the fastest growing infectious Diseases is  also connected to Borrelia and Mycoplasma infections )
Leslie Taylor  N.D. has a well written report on Pathogenic Mycoplasmas which includes
a holistic treatment approach (for the ones not interested in the antibiotic treatment)
To confirm the presence of pathogenic Mycoplasmas, a Polymerase Chain Reaction Test
is necessary . There are a couple preliminary tests like the Blood Volume Test and the
24H Holter ECG test that  are only indicative of the infection. All this must be done under the direction of a specialist in Mycoplasma Infections.
You can get your life back! It will take determination, patience and perseverance.
The medical system unfortunately is not on your side.
There's an unprecedented increase in neuro-derenerative and autoimmune diseases, and
the Medical Establishment is not only addressing this, but inteferes with the work of caring individuals such as Dr. Garth Nicolson- the world's expert in this field- to the extend now that he must do his own fund-raising for research!!!
And the sudden closure of labs
that were able to detect these pathogens with their testing!!!
So please, do not get discouraged.
If you follow through with this, you will be probably one of the few sufferers, who managed to beat the odds, and got better.
Just go to related forums and read some posts. This way you'll get a pulse of what's going on  in the world of neuro-degenerative and autoimmune diseases.
It is very sad, to say this least, that in our "advanced" western societies, we have allowed our medical model and health care system to become so Dysfunctional.
The unnecessary suffering of millions of people, is something unacceptable to me, when I know that there are viable options available for treatment and healing.

Please do research as much as possible to verify the above.
Becoming knowledgeable and proactive regarding your own health matters,
is very empowering and the  probably the biggest step towards restoring your health.
My advice does not constitute professional advice.
Please post  again soon with any questions, comments or update.
Blessings to all!
Nikodicreta
  
163240 tn?1337907961
thank you for the reply but my symptoms have not been rather fast i had few symptoms at first and new ones keep popping up this is a tally of symptoms from the past 7 to 9 yrs. When the symptoms first started appearing I was no where around when I could have gottne Lyme disease. I have no pulmonary or cardio problems. I do have a high self worth. I have been seeing a reiki person she is a good friend on mine for years now.
I have always been open to anything but the way you describe stuff is not how my symptoms appeared
1530171 tn?1448133193
Hey chefaid90,
Of course I did not imply that ALL your symptoms appeared suddenly.
Nor did I imply that underlying infectious pathogens attack ALL systems
that I listed. It is rather a gradual process, as the pathogens are in a dormant state
till there's a trigger such as trauma, accident, illness, surgery etc. and get activated.
Once activated, they attack first the weakest and most vulnerable system or organ of the body at the cellular level. And thus, the sudden onset of symptoms within that part of the body.
It takes years sometimes, for the spread of the infection to other systems.
  Cellular health, the strength of the immune system and genetic predispositions are
what make each individual case different from the next.
My suggestion is to do a Blood Volume Test and a 24H Holter ECG test.
These are preliminary screening  tests that are indicative-not diagnostic- of Pathogenic
Mycoplasma Infections.
Hopefully this helped clarify some things.
If you need more info let me know.
I am glad you have a friend that offers you Reiki sessions. It is a wonderful healing art modality.
Blessings,
Nikodicreta  


280418 tn?1306329510
Hello,

I am sorry you are in LimboLand.  I, obviously, still visit LimboLand even though I was diagnosed with Lyme disease two years ago.  A very short version of my story starts with three ticks embedded in my scalp 25 years ago, yep, 25 years ago, and get the idea out of your mind that you ever have to see a tick OR be in some New England state to get Lyme, that's a ridiculous rumor.  Ask any veterinarian in your home state if they see Lyme disease in any dogs and they'll look at you like you're crazy and say, "yes, many".  I know nothing of Nikodicreta's background, but I have to say I'm not sure where he/she is coming from?  Maybe the writing style is just different, I don't know.  I just don't want you to discount Lyme  based that post, at the same time, keep a critical stance on any "ideas" on what is wrong with you.  Again, I am a very very critical, scientific thinker and I work in the medical field.  I've had Lyme denial but I'm going back to my Lyme doc in January, because I keep coming back to my original diagnosis.   That is me and that is my journey.  I was better on Lyme treatment, but I had to go off due to my pregnancy.  So back to Lyme treatment I go, to hopefully get this neuropathy, muscle twitching, tightness, headaches, fatigue, at bay.  Anyhoo, visit us at the Lyme forum and shoot us a question, there are many knowledgeable people there.  Sorry Nikodicreta, not judging, just caught off guard by your suggestions.  The testing of choice for Lyme is a Western Blot thru Igenex Labs in CA.  You also didn't suggest to her that Lyme is all over the US??  Your post seems, well, canned, like a commercial.  Maybe I'm wrong!  Don't like people being led astray when it comes to medical issues...:/
163240 tn?1337907961
Was already tested for lyme a year or two ago I know it took forever to get the results since I know they shipped the test somewhere. I could ask my doctor to run it again though. thanks for the reply Hope I didnt like the well scripted post from Nikodicreta as I saw the exact post on someone elses post
1530171 tn?1448133193
Hey Hope75,
You don't need to be sorry. If you think what you posted was critical,
I wish you could see some of the exchanges between myself and conventional medical field workers!  Specially Doctors. (Some are friends of mine!) It really does not bother me.
At the end what is of importance, is the patient's (client's) health and well-being.

And you are right about the Lyme epidemic. Actually if you go to Dr. Garth Nicolson's
website ( you are one for scientific studies, well, he is one of the most accomplished
medical researchers in his field if not the TOP ONE, written up in most medical journals )
you'll get some interesting info on lyme, mycoplasma infections and their connections to a whole number of "modern day" deseases!
The reason why I have left -not intentionally- lyme infection out, is b'cause lyme ticks carry the pathogenic mycoplasma in most cases.
According to immed.org (Dr. G. Nicolson) :
"WE HAVE FOUND THAT MANY IF NOT MOST LYME DISEASE PATIENTS HAVE BOTH BORRELIA AND MYCOPLASMA INFECTIONS."  

I really feel for people that suffer debilitating conditions, and my true intention is to help people get  pass their conditions and on with their lives. I have been there, I know what real pain and suffering is, I know how frustrating it is to be undiagnosed or worse mis-diagnosed. My entire life I have been surrounded with immediate family members
and close friends suffering from Bi-Polar, Depression, Anxiety, Fibromyalgia and Alzheimer (recently), undiagnosed GI disorder, name it.
I having been helping them get better with all the holistic therapies that I use, as conventional medicine, hasn't been able to offer much to them, other than symptom management. And this goes for most people that I see. It's a great feeling to see them improve.
Yes, I do understand where you're coming from, however, keeping an open mind,
( and this does not imply accepting or rejecting anything before you have done your own
"proper" research) may be more beneficial at the end.
So please get past my writing style- with the influence of professional etiquette  perhaps.
Your comments and questions are welcome, so post again, and honestly I hope you do get better with your lyme treatment.
Blessings to all,
Nikodicreta
  




1530171 tn?1448133193
Hey chefaid,
You probably missed this  part of my post:
"The following is from another reply that I sent recently with some modifications, and basically it is  applicable to you as well!"
As you see I was open and clear about it. No harm intended.

I know that some of my posts are rather long.
Anyways, if some of the info I offered you is useful, that is great.
If some of it is not, please disregard it.
I take the time to reply to the questions, the best way I know, and of course,
it is just my opinion, personal experience and knowledge in each and every post, and this is the basis of how this entire forum functions.
All good,
Blessings,
Nikodicreta
  
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