What is happening to me?

[smokey56]

Hi, I am hoping that someone out there can please help me. I am a 54 year old woman who up until 2 years ago have been very active and healthy. My problem started with a squeezing feeling in my chest, the drs. did a full heart work up including an angiogram all negative. About 6 months into trying to get a diagnosis I began having olfactoiry symptoms, very strong smoke smells where there was nothing burning, several times per day. I continued seeking answers, I have had several MRI's, CT scans, blood work etc. Over the past year my symptoms have really escalated. I now have severe body pain in virtually every part of my body. It feels like my body is on fire including my head. I have pins in my forehead and eyelids and I can barely walk after laying down or sitting. My legs feel like they have rubber bands stretched too tight in the calves and I can't put pressure on my feet for quite awhile afetr sitting or lying down. I also have severe shortness of breath and the fatigue is unreal. If anyone could possibly shed some light on what could possibly be going on with me I would be so very appreciative. I am so desperate and scared.  

[tjbk]

Hope this note finds you feeling at least a little better. I know what you mean about fighting insurance. We pay so much for it it really is too bad they give us such a hard time when we need to use it. Best Wishes to you.

[smokey56]

Hi everyone. I am having such a horrible scary day that I just wanted to seek the comfort of my friends that are in limbo land with me. I don't mean to be selfish, I just feel so defeated that I can hardly take it any longer. My pain has spread to literally every single part of my body and it is unreal!!! I feel like I have a huge fire burning in my body, from the top of my head including my eye lids to the soles of my feet. I can no longer walk very well, I have to shuffle and walk on the outsides of my feet just to go to the bathroom. I have a terrible cough, my esophagus is on fire as well as my arms and hands. I have such pressure in my chest and back that I think they will explode soon!!!! I am having yet more blood work done today, Lymes, ANA, etc. and my doc is fighting insurance to get another brain MRI done. I don't know what to do anymore, I am so scared, what is happening to me??????? Thanks for listening, you all provide such comfort to me, thank you.
Kim

[TheLightSeeker]

Hey smokey56.
There's some light at the end of the tunnel!
Please bear 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.
* 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  labelled  as hypochondriacs,
compulsive complainers, or paranoid by their own doctors! No it is not in your head!)
* The onset of the symptoms is rather fast -if not sudden- and the disease pattern of this "mystery" condition starts affecting your cardiovascular, muscular, pulmonary, neurological, 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 neuroderenerative 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 neurodegenerative 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.
Please post  again soon with any questions, comments or update.
Blessings to all!
Nikodicreta
  

  

[smokey56]

Hi,

Thank you so much for the encouragement. I am hoping that a diagnosis comes soon, I am so exhausted that it is scary. I started the ambien as I shared with Sarah, but, it is giving me a terrible headache. I just wonder why we sometimes have to trade one problem for another????? Please take care of yourself. : )

[smokey56]

Thank you so much for sharing your mom's Ambien story. I have laughed at least a dozen times today, that is too funny. That is one medicine that nobody can prescribe! I am not as hung over on the Ambien today as yesterday, however, it is giving me a horrible headache. I will not take it tonight so that I can make sure that it is the ambien and not something else......I hope that you had a manageable day today.

BIG HUGS to you,
Kim

[sarahw244]

So glad to hear you got some sleep!  I've actually heard of other people doing the same thing with the splitting of the pill.  It'll last longer for one, and then if 5mg doesn't do the trick down the road, you have a few extra mg's to add before you have to contact the doctor for alternatives.

I think that the hungover feeling that you are describing will decrease with time.  It is a typical side effect of these types of meds.  On another note, my mom takes ambien and has been having problems with it.  She has always had a little bit of a shopping addiction and apparently she has been calling the home shopping network in the middle of the night and ordering stuff with no memory of doing it.  Then a few days later, something will arrive via FedEx.  LOL!!!  She laughs sooo hard that she cries!  She says, yeah I'm getting sleep but I'm spending money in my sleep too!  She also ordered a hotel room two nights ago.  Funny!  It does have side effects of nighttime amnesia, so just watch out.  You never know what you'll do!  ;-)

Anyways, glad to hear you got some sleep.  Keep us updated!
Sarah

[Sidesteps]

Yay relief!

Any progress is better than none... :)

[smokey56]

Hi, thank you for your great sound advice. I am so sorry to hear about your journey through this awful mess. It is such a difficult process, just trying to figure out what is wrong. I took your advice and had my internist prescribe Ambien, it helped but I cut the 10mg. pill in half and I am so hungover, hopefully that does not last as a side effect. I did however, manage to get 6 uninterrupted hours of sleep. Thank you Big Hugs to you!!!!

[jibjen]

Hello,

Sorry to hop in here late. Welcome. We are so sorry you are going through this. WOW 13 MRI's..well you have me beat. I have had like 9 in the last 2 years and I thought that was a lot...

I think Sarah can probably relate to your symptoms best, however all of us can relate that being in pain all the time or well most of it, sticks!

I agree that maybe trying the ambien will at least help you get some rest so that you are able to care for yourself.

Please be well and let us know how you are
Jibs

[sarahw244]

I am so sorry you are going through this, too!  It sounds a little familiar to me.  I, too, have chronic pain, mostly in my right lower extremity, but I get it other places too.  More recently, my neck.  That burning pain is the worst!  I have been tried on all different medications, and suprisingly (or not ;-) the med that has worked the best for me is tramadol.  Maybe some kind of maintanence drug for pain is in order?  If they can't find out what's wrong with you, are they at least willing to treat your symptoms?

I can't believe you've had 13 MRI's in the last year and a half!  That has had to have an affect on you financially as well!  Have you obtained any copies of the MRI's for yourself?  

I would try the ambien.  Lack of sleep can have all kinds of bad effects on our bodies, both physically and psychologically.  And sleep is one thing you can never get back or catch up on.

I really hope you find some relief soon!  Being in constant pain is no way to live!
(((hugs)))
Sarah

[smokey56]

Thank you Sidestep for your hugs, they really do help. I have had 13 MRI's in the past year and a half, the last was Aug. 2011. I spoke with my internist last night, I have also been on Levaquin for 2 weeks after picking up a staff infection in a hospital and my internist told me that more than likely, this antibiotic has made my pain much worse, I don't know, all I know is that I truly can't take much more. I am going on ambien today per his request, I am hardly sleeping at all and we all know the magic that sleep possess. Big hugs to all of you out there, this forum truly helps, knowing people care and understand is wonderful, thank you!!  

[Sidesteps]

Oh gosh smokey, I am so sorry!! I can hear your pain, suffering and fear. I have no idea what could be going on. I wish I could help but we are here for you to vent, ask questions and listen. (((hugs))))

When was your last MRI?