Clean MRI; Neurologists says no MS but I have numbness and prickling in legs face and arms!

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twitchy
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Date Joined Sep 2006
Total Posts : 23
   Posted 10/30/2006 3:17 PM (GMT -6)   
Does anyone have any advice about where I go next? Can you have MS and have a clean MRI, no vision problems; just neuropic pains in legs, arms, back and face?

Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 10/30/2006 4:24 PM (GMT -6)   
I've been going through something similar for the past six months. My symptoms have been extreme fatigue; numbness and tingling sensations in my face, head, hands, and feet; tremors, vibrations, and buzzing sensations all over my body; painful muscle spasm and stiffness in my arms, back, and legs; shooting nerve pains throughout my body; squeezing sensations around my rib cage and top of my head; bladder and bowel problems; blurred vision; slurred speech; cognitive problems such as slow word recall, substituting the wrong word, forgetfulness, etc. I also have messed up reflexes in my legs, including hyperactive knee reflexes, absent ankle reflexes, and present Babinksi reflexes in both feet. All of these are typical MS symptoms (if there is anything typical about MS.)

I've had brain, thoracic, cervical, and lumbar MRIs, and they've all come back normal. I've had EVPs, all came back normal except for the SSER on my left leg. My last test was an LP, which was also normal.

The answer to your question is yes, you can have MS and have a clean MRI. You might want to check on having EVPs or an LP, just to be thorough.

Good luck!


Lisa ~
Living in Limboland!

Post Edited (Shashi) : 10/31/2006 8:36:52 AM (GMT-7)


ConfusedGal
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 10/30/2006 4:27 PM (GMT -6)   
Hi
 
I am in limboland myself...I have numbness and pain in my right hand since the last 3 months. Its constant. Doesnt ease up at all. My brain MRI does however have 5 lesions, so I am doing further testing. Evoked POtential and Lumbar puncture...
 
Did your neuro not suggest further tests?? SOme of the docs just suck...Were you told that it will "go away on its own?" Thats what I was told before the brain MRI. And its possibly what I will be told after the other tests and wil be given no reason for my lesions and hand will probably stay this way. I have a feeling this is how it will go.
 
Hav eyou had an EMG for arms and legs?? You may have a nerve issue... What about an MRI of your cervical spine? How long has this been going on? LEsions often dont show up on the MRI for years after MS starts..You should have an Evoked potential test and a lumbar puncture as well...If your doc doesnt want all these tests, go to another one!
 
 

twitchy
Regular Member


Date Joined Sep 2006
Total Posts : 23
   Posted 10/30/2006 4:50 PM (GMT -6)   
Thanks for the input; I have not had any other tests besides my MRI 2 months ago. I have an appointment with the Neuro on Monday, I will ask harder questions. The NEuro was positive that I did not have MS after his physical and MRI exam, he sent me to a Infectious Disease Doctor who has been treating me for Lyme Disease for about 7 weeks now.

ConfusedGal
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 10/30/2006 5:26 PM (GMT -6)   
What makes them think you have Lyme?? Were you bitten by a tick? Rashes etc??

twitchy
Regular Member


Date Joined Sep 2006
Total Posts : 23
   Posted 10/30/2006 5:34 PM (GMT -6)   

The common testing for Lyme is actually two tests; the ELISA and the WESTERN BLOT. I tested positive on the ELISA and negative on the WESTERN BLOT twice. The Lyme diagnosis is very subjective, and my lyme specialist feels that the combination of my physicial symptoms and my ELISA results spells Lyme.

Lyme and MS symptoms are very similar, but I am sure you have been thru all that...


ConfusedGal
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 10/30/2006 5:44 PM (GMT -6)   
Are lyme tests based on blood work?? I have had blood work done and apparently all was normal. If my Evoked potential is normal and Lumbar puncture is normal, I have no idea what and if they will treat me for anything... Doesnt Lyme disease usually show brain lesions as well?

twitchy
Regular Member


Date Joined Sep 2006
Total Posts : 23
   Posted 10/30/2006 5:48 PM (GMT -6)   
Lyme is a blood test; but they are notoriously wrong, so physicians are forced to treat symptoms and guess....

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/30/2006 9:49 PM (GMT -6)   
twitchy said...
Does anyone have any advice about where I go next? Can you have MS and have a clean MRI, no vision problems; just neuropic pains in legs, arms, back and face?
Yes you can have MS and "have a clean MRI, no vision problems; just neuropic pains in legs, arms, back and vace...."
 
But you should know that you can have the CONVERSE, too -- that is, you can "have neuropic pains in legs, arms, back and fact..." and it ISN'T caused by MS, but by some other condition. There are lots of diseases and disorders, some neurological in nature (like MS), some metabolic or systemic in nature (like diabetes, thyroid problems, and others) that can cause those symptoms.
 
If your neuro is telling you it's not MS (and the tests seem to indicate that), you might go to see a rheumatologist, or an infectious disease specialist, or even your regular family doctor, to see if indeed its something not neurological that is causing your problems.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Jenny R.
Regular Member


Date Joined Sep 2006
Total Posts : 162
   Posted 10/31/2006 10:28 AM (GMT -6)   
Twitchy, I have alot of the same symptoms as you.  I have had them for 6 years.  My MRIs and other tests have been normal, my doc says no to "MS" also.  I can't stop wondering what the heck is going on with me.  I just started to take buspar about 2 weeks ago for the anxiety that I am dealing with, and just 2 days ago, I upped the dosage to 15 mg a day, wow, everything went crazy, its been a real bad last 2 days.  My only symptoms are muscle twitches in myt legs, sometimes they will buzz, and weird facial tickling, like a hair moving across my cheek or nose, its really annoying.  The facial thing has been going on for 7 years, the others for 6.  I wish I could help you, its not fun, I know.  I do  have a family history of MS, my gram had it, so this makes it worse. Take care and I hope you find an answer.  I was also tested for Lyme, and this is my next route to find a LLMD and have the good testing done. 

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 10/31/2006 11:21 AM (GMT -6)   
Twitchy:  I know what you're going through! yeah   I have 5 lesions on brain w/Periventricular leukomalacia.  Neuro says this disease is giving me same symptoms as MS, but symptoms will never go into remission.  He is doing another MRI next months (6 months since last) to determine whether or not more lesions have occured.  I think it will really stink if I end up w/both.  I also think it depends on MD you have since my sister is a nurse at a lg hosp & had various MDs review MRI.  They all stated MS even though there are only 5 lesions due to symptoms.  They stated that PVL w/lesions almost always end in MS.  After doing a lot of research, I've learned that even one simple lesion in a certain part of the brain can cause symptoms such as numbness, tingling, etc.  Just depends on the lesion, location in brain, & what might have caused lesion (i.e. high BP, TIA, etc).  Not knowing is the hardest to deal with.  I've always believed that most people can handle anything as long as they know what is facing them ... it's hard to fight something when you don't know what you're fighting.  Best thing I can say is to research, research, research!  Even if you come across articles on symptoms that match yours, at least you will be knowledgable about your symptoms when you see your MD.  yeah    GOOD LUCK!  Patience is a virtue, but sometimes is absent in our hardest days!

Ark
Regular Member


Date Joined Nov 2006
Total Posts : 56
   Posted 11/4/2006 5:49 PM (GMT -6)   

Hi Twitchy,

The only confirm test I know of for Lyme Disease is a Lumbar Puncture. Have you had this procedure done to confirm Lyme Disease?

Ark

twitchy said...

The common testing for Lyme is actually two tests; the ELISA and the WESTERN BLOT. I tested positive on the ELISA and negative on the WESTERN BLOT twice. The Lyme diagnosis is very subjective, and my lyme specialist feels that the combination of my physicial symptoms and my ELISA results spells Lyme.

Lyme and MS symptoms are very similar, but I am sure you have been thru all that...



terry38
New Member


Date Joined Jun 2008
Total Posts : 2
   Posted 2/9/2009 10:53 PM (GMT -6)   
hi my name is terry I am 39 for the last 2 years have had numbness right at the top of head near side part calic if you will, tinglin in my left side twitches in my jaw eye lids , legs,mostly on my heart side , stomach, head aches , my eyes went south at the same time after 2 years i am seeing a nuero next month my primary doctor thinks i am a wack job , was an alcohilic for 24 years this started 4 months after i quit any help out there i have had an mri ct scan its normal

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 384
   Posted 2/10/2009 12:33 PM (GMT -6)   
Hi there, to answer your original question, yes, you can have a clean MRI and still have MS. It has been determined (reading MS Society of Canada) that MS damage can begin before lesions will actually show up on a MRI.  I am living proof of that, it took three MRI's in the course of 15 months before lesions showed up....yet I was experiencing dizziness, optic neuritis, stiffness in my neck and shoulders, and some tingling on my face......it was not until I developed L'Hermitte's sign that I went back for my third MRI and lesions were noted in my spine and brain - hence the dx for MS.....
 
Long before MRI,s the medical perfession use to use the "hot bath" method to confirm MS - they would use this method to see if the symptoms increased, or developed when the patient was put in a hot bath.....most MSers are heat sensative, and heat of most kinds will bring on symptoms or increase the intensity of current symptoms if exposed to heat.....note that not all MS patients are heat sensative....
 
Gary

Gretchen1
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Date Joined Jan 2007
Total Posts : 3144
   Posted 2/10/2009 7:02 PM (GMT -6)   
Gary is correct that the damage begins before lesions will appear.  However, it is very difficult to get a diagnosis of MS without lesions.  The "sclerosis" means scars, and those usually have to show up before a doctor will begin treating.  Here is a site with lots of information of how the diagnostic process works in MS.  Good luck.
 
http://www.mult-sclerosis.org/diagnosingms.html
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


KristenG30
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/23/2009 4:35 PM (GMT -6)   
cry  I'm becoming VERY frustrated with my situation. I've had the following symptoms that have progressed over the last 3 years and am tired of feeling so awful night and day! Anyone with any advice or information to pass on?!
     Stabbing pains & electrical shock sensation on the left side of my head. Numbness, tingling and burning sensation in my face. Eye pain behind my left eye, sore eyes with movement and at times temporary loss of vision in my left eye. ((I have already been given the Dx of Trigeminal Neuralgia.)) Dizziness, confusing, memory loss and problems finding words.
       I also have severe joint, muscle and bone pain throughout my body. I was also given a Dx of Fibromylgia, but I KNOW it is caused by an Autoimmune disease (I have tested positive for such time and time again... although my Neuro has given up looking for the real cause of my illnesses). I have swelling in limb, loss of use in limbs, I have trouble acknowledging if things are too hot or two cold...I have extreme Chronic Fatigue (also Dx'ed as so).  Severe tremors in my hands, legs and head. Severe muscle weakness, unable to bear weight on legs due to pain, my limbs at times feel heavy/weighted down, and I cannot begin to truly describe how painful the numbness, tingling, burning (face, hands and feet feel as though they're on fire while the rest of me feels like I have the worst sunburn), itching and the shocks all over my body are!!! It's a toss up of what I'll experience from day to day. The pain is never gone, the fatigue is getting worse and my flare ups are coming more often and to a more extreme strength.
           I have had a normal MRI, EPT, and blood tests come back clean for MS. I have not yet had an LP, but with tomorrow's visit to my Neuro I'm going to request that it be done. I am frustrated at the fact that because the dr did all his surface tests and the only thing that came back positive was the Autoimmune tests, he doesn't want to look any further. He just wants to "treat what we know you have". After 3 years of severe flare ups that are now at least once a month-lasting a week or two at a time or simply lasting months on end- I'm to the point where I'm going to start pushing. I don't want to be one of those patients you'd hate to see, but have to deal with anyway... but this is my life. I'm 25 yrs old with two childs. I am disabilitied by my symptoms and can't enjoy my YOUNG life with my boys because no one wants to continue looking. My gut feeling is that it's MS, but I don't know how to approach my Dr. without him thinking that I'm crazy.
           The symptoms have piled on over the years and I suffer from nearly all the classic signs of MS. I have done my research. I've learned that there ARE MS suffers that won't have lesions at the start of their disease and some that simply won't ever have them. I've also researched the fact that you can also have normal MRI, EPT, LP and ect testing. Most Dr's agree that is best for determining MS is 1. Patient history and listening to complaints of symptoms and 2. Physical examination. "Silent" lesions are a possibility, majority of MS blood testing is to see how long it might be until you have another relapse... Not to see if you have the disease, how severe or how soon your next relapse might be (Though there is a new type that will determine when your next might be). So why aren't the dr's taking the time to examine us fully?! Why aren't they taking into considering that every living being is never the same?! Why are they simply not listening to us after they can't find the easy answer?!
            I'm sorry this was so long... but I'm just plain fed up with the Dr shrugging his shoulders at me, scratching his head and saying "I dunno".

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3144
   Posted 2/23/2009 9:48 PM (GMT -6)   
Wow you are clearly very sick. I am so sorry. I am wondering about a few things though. I have never heard of any blood test that can tell when your next flare will be. I want to know more about that. I would love to be able to predict my next flare.

Clearly you believe you have MS. I am not sure how we can help you other than to give you support while you try and find answers. I appreciate your assertiveness with getting those answers.

While you have many symptoms of MS, you have others that are not typical. Your joint pain and swelling is not typical for MS. But in your long list of symptoms that is not saying much.

I see that you can't walk due to leg pain and weakness. Are you wheelchair bound? I am surprised you don't have doctors working really hard to find the cause to that.

Well I fear that my post is not very helpful. I wish you the very best of luck. Feel free to post here. There are a ton of very nice, supportive people here.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


KristenG30
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/24/2009 6:29 AM (GMT -6)   
Thank for your reply Gretchen. My neuro appt is today. Like I said, I don't want to be the pushy patient, but I'm not taking a backseat to their "I don't know's" while my health keeps getting worse.
         The new test is called Anti-Myelin Antibodies CNS & Peripheral. It's suppose to predict how soon you might have another flare up (also making it easier to dx MS). They can get a peek at when it might be coming instead of trying to find a trace of where it's been.
          I've gained severe Fibromylgia from the last few years of doctor's tossing me back and forth and no one treating me for what they all knew I had. So, I'm a mobile 1/2 of the month and not the other 1/2. It's never clear how long I might be off my feet, when those days will come, or if I'll need crutches (not helping so much after losing arm strength and tremors lol) or I just have to have my family assist me in whatever I need. I don't want to be put in a wheelchair, but I know that it would be a better idea for me to get one for the very bad days.
          Each dr I go to here in NC (and you would think that they would be the best here) do the surface tests then throw their hands up when it's not something easy. I get passed around like sucker on 1st graders playground and then end up with less answers than I came in with. *sigh*
          I'll repost to let you all know how to dr's appt went. Thanks
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3144
   Posted 2/24/2009 9:13 AM (GMT -6)   
It seems like you have done your homework. You are well versed on all that is out there. Have you investigated Lyme disease at all? That came to mind when you mentioned you were from North Carolina. You may want to post on the Lyme board here. It is just a thought. Good luck again and let us know what the neuro says.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


KristenG30
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/24/2009 11:51 AM (GMT -6)   
Hey guys! I just got back from the neuro. I've come out with less than I walked in with (as expected). He's still scratching his head. Now we're going back to testing for all the things I've been tested for 20 times before (including Lyme's which has been ruled out by multiple blood tests). I am now getting scheduled with UNC neuro's for a 2nd opinion. Wonderful- This means we start back from square one. I got frustrated with the doc and started getting loud with him. I apologized after, of course... but I'm so tired of being sick, getting bounced around from one dr to the next and still coming out with nothing new.
When my symptoms first started I was living in wv in the middle of winter.... no ticks to be found. *Sigh* I wish it was such an easy answer.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/24/2009 3:31 PM (GMT -6)   
Hey Kristen

Hang in there friend. Sometimes it seems like u'r getting nowhere with all these tests, but over time the results can be different and u may get some insight from this new set of tests. Keep in mind too, that Lyme can remain dormant in u'r body for long periods of time before presenting. Also, there is some belief that the best lab for testing for Lyme is the one in Palo Alto, CA. Maybe request the western blot (i think that's the right one....check the lyme board for confirmation) and that it be sent there. Take care and keep pushing. If it's ms, then it will eventually show up.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


KristenG30
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/24/2009 8:12 PM (GMT -6)   
blush  Thank you for your kind words Rhonda. I am just beyond exhausted with being tossed around from one doctor to the next. My medications have horrible side effects (for my tremors and Trigemal Neuralgia). So, I'm kinda' depressed. I know in my gut that they're missing something. I'll asked about the exact testing they're doing for the Lymes...But I'm also having to see my PCG tomorrow for a lump (swollen lymph node I'm sure). It's an inch and 1/2 long and it's just another thing to deal with... I hope that everyone else is hangin' in there and keeping strong. I'm trying my best to do the same, but I feel like I'm falling apart. It's nice to have other's that care. Thanks

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3144
   Posted 2/24/2009 9:30 PM (GMT -6)   
Hey Kristen,

Lyme can lie dormant for a long time. Lyme is FAR from an "easy" disease. Chronic lyme can cause severe symptoms or even death. It can be incredibly difficult to treat and chronic lyme can cause neurological symptoms and even lesions. It is a disease that needs to be seriously considered if you are looking into MS. It is one of the MS mimics. The blood tests for lyme is notorious for giving false negatives. You may want to consider looking into this again.

I am sorry you were so disappointed with your neuro visit. Hang in there.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3254
   Posted 2/28/2009 4:46 PM (GMT -6)   
Gretchen1 I have a few questions for you, first let me introduce my self I am White Beard I just recently started posting over on the Chronic Pain forum. I have degenerative disc disease, and have had a C6/7 fusion, and have multiple bad disc with most of them being thorasic. But I have many other problems that can not be explained by the bad disc. The Last two years they have had me on Parkinson medications, but I have just came back from the Movement disorder clinic at Rush In Chicago and they are weaning me off the Parkinson meds as they say I do not have Parkinsons, they haven't sent my Neurologist there report yet but they told me they are going to recommend futher test. Numerous time in my past I have been told that they think I have MS, but so Far the MRI's have been negative. I have had abnormal EMG's and I am right handed but I show a definite, and noticiable right sided weakness, I also have some documented swallowing difficulties, I also sometimes have difficulties with speaking, slowed speech with long pauses, and I can't can't explain it lose of words?. and along with balance problems, and neuropathy in both legs, and I have a weird curved zig zaggy flashing light show that pops up periodicly in my upper right portion of my vision, and can last up to 15 or 20 minutes, and then goes away, sometime it will happen a couple times a day, and other times it will only happen once every couple of months. No pain involve with it. one neurologist said it might be a migrain??? But I have not headache! I suffer from absolutely terrible muscle spasms, and they happen everywhere, in my hands, neck, and arms, inside my thighs, (those are bad) calves, and in my feet especially the arch( those kill me) and I am on 25 mg Baclofen every 8 hours, and that has been real Godsend. But with that said every now and then I will get a period when I still get the spasms and it is like I was never on the med. They will last from a few days to a week or more and then go away. Allot of my symptoms do the same, they come and last a while and then dissappear, usually when they leave, I usually have some kind of deficit, less movenment in my arms or legs or what ever. I used to be able to hold my arms out straight and turn my palms up I can nolonger do that, it started off first in my right arm now it is in both. I walk with a cain, I suffer from chronic pain, and often feel like a bee is stinging me, and I swat at it but nothing is there??? and am on meds for the chronic pain primarily for my back.. The one med that seems to help me the most with everything is when I have a flare up with my UC, and they put me on Prednisone, athough emotionally I can't stand the med, Physically it helps more than anything else. Go figure.

Now for my questions, How does one find out for sure that they have or don't have MS? I have heard people ask have you had a spinal tap?, no Doctor has ever ordered, it, is that important to have? Is there any test that might be more beneficial in trying to find out what is going on. I have been in limbo for so long and I have heard so many contridictory statements, one neurologist told me I can't have MS, because MS patiets don't have pain issues that I have? But yet I have read that they have exactly the same type of pain issues that I suffer? So who is right? I do know that over the years, when ever I have a flare up of symptoms, I alway end up in worse shape than before. I am only 57 I am on disability, and I dread to think about what the future has in store for me. I once took a questionaire online about symptoms, and I matched the best with two disease MS and ALS, I assume if I had ALS I would be dead by now! So... Any thoughts? would be welcome.......White Beard

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3144
   Posted 2/28/2009 7:08 PM (GMT -6)   
Hey White Beard,

Welcome to the MS board. I am sorry you are having such a rough time. The tests that got me the diagnosis of MS were the following: I had a neuro exam (had abnormal reflexes that pointed to MS), blood work, MRI (two brain lesions, one spinal at the time), lumbar puncture (positive for o bands), evoked potentials (delayed lower extemities, abnormal vision, normal hearing). It was pretty cut and dry. That is NOT typical. Getting an MS diagnosis can take years. Most people are not diagnosed with a clean MRI. Some say that you can have MS without lesions but that is the nature of the disease. It scars (sclerosis) your myelin.

You very clearly have something going on. Keep at those doctors. I would ask for at least the evoked potentials. Those are very easy and non invasive. The lumbar puncture is not a lot of fun. I would only do that one if a doctor is insistent.

The doctor that said it can't be MS because of your pain issues is wrong. MS patients have all sorts of pain issues; nerve pain, spasticity etc. The neuro that was saying possible migraine may have been talking about occular migraines. Those do not have pain just an odd visual aura; could be what you were experiencing from your description.

The link below talks in detail about the diagnostic process of MS. Good luck. I truly hope whatever is making you sick is treatable and that you are feeling better real soon.

http://www.mult-sclerosis.org/diagnosingms.html
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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