Neurologists and Physical Therapy

Yesterday we met with the neurologists and went over all of the labs and tests performed up to this point. Everything we've run up to this point has been clean and clear, except the Nerve Conduction test. That showed that a specific nerve (Saphenous)  is showing to be damaged. That specific nerve is a branch of a larger nerve (Femoral) just above that controls the motor function of many of the large muscles in the leg. The Saphenous nerve is actually largely involved with lower leg sensory input from the skin. The damage to both of these nerves explains the weakness in the upper leg but sensory loss in the lower leg. When we asked why they were damaged, they answered saying that because all of the other tests came back clear, they believe that she contracted a virus of some kind that damaged the nerves in her leg and likewise in her arm. They believe the virus is gone because she is not getting any worse. They would like to run another MRI of the brain in another 6 months just to make sure nothing was missed. Her right quadriceps  are much smaller and weaker than the left because she hasn't been able to walk on them. They have prescribed Physical Therapy asap. The nerve conduction test showed nerve damage but it also showed that they're still able to receive and send a message, they're just weak at it. Because its still able to communicate, that is a sign that the nerves are capable of a full recovery, hence the physical therapy. The damage done to the arm was done to certain receptor sited on the muscles that help control the balance between front arm and back arm muscles. While she does physical therapy to help with the damage, he is putting Whitney on a medication called Metoprolol that's supposed to help balance the receptor sites and balance out her tremors. It's a very common drug they give to kids when they experience tremors. They're starting her out on a very small dose to monitor how she responds to it.
We spoke with the other more holistic doctors that we're working with and they feel it important to continue with certain vitamin/mineral IV's to help provide the body what is needed to help with nerve regrowth. In out research we've seen a lot written about B-12 injections helping with nerve regrowth. If anyone knows of any other treatment to help nerves grow, please leave a comment and share.

Whitney's Daily Nutritional Regiment

6/25/15                                                       Physical Therapy

Whitney had her first Physical Therapy appointment. The therapist is putting her in knee brace to help stabilize her leg to help prevent further injury. He's given her some very basic exercises to just start using her leg more and more. Any motion is going to be good, trying to get the signal from the brain into the nerve. Repetition is going to be key. He did say for her to listen to her body and not over do it. Aqua-therapy was highly recommended, so now we're in the process of finding a pool or something that we can do multiple times a week. Exercising in the water will help take some of the weight demand of the muscle making it easier for her to do her exercise and build muscle. In a small way, she's going to have to learn to walk again. Right now she will only be seen 1 time a week by the PT, simply because she can do everything at home and everything is so basic at this point, it would be silly to drive somewhere to do them.
Whitney took the medication for the first time today, and I wish we had a camera. She said the room started to tilt and she felt like she was flying. When I (Brian) was talking to her on the phone she's randomly laugh at our conversation. After about 30 minutes, the tremor in her hand did stop. We'll see how long it lasts, but it was nice to get a break from them. Right now she is taking a very low dose and after a week or so they want to up the dosage. We'll have to see how she does. I'm not sure which is better; not to have tremors or a wife that laughs randomly during our conversation.

Whitney at the Physical Therapy Office

Ruling Out

This past week has been slow in the way of progress. Whitney had a couple of appointments with 2 different Neurologists. One did a more in depth nerve conduction test looking at specific muscles and nerves from the spine down through the legs, hoping to narrow the issue down to certain nerve branches. The other appointment involved a tilt table test looking at her equilibrium or balance. We're not too sure why they ordered the tilt table test, our guess is that they're trying to rule out cerebellum issues. They weren't very clear on explaining their reasoning.
We were told that the labs we had run to further investigate Lyme's and Pesticide/Herbicide poisoning, would be back this last Tuesday. We've checked the online portal given to us to check for updates and nothing has come in yet. The family doctor that we saw who ordered all of these tests, also ran a test to look at a condition called Myesthenia Gravis. This disease causes a lot of neurological issues, some that Whitney is having. However a hallmark symptom is the more active you are the worse the conditions get, and when you rest they go away. This hasn't been the case with Whitney, but the doctor thought it good to at least test. The test looks for a specific enzyme that attacks the neurotransmitters that tell the muscles to contract. That test did come back just a couple of days ago as normal.
This week on Tuesday (6/23), we have a meeting with 2 neurologists to go over all of the recent tests together. Whitney met with one of them last week before the tilt table and more in depth nerve conduction tests were ordered. That particular person is actually a nurse practitioner, who's received his doctorate in nursing and specializes in neurological disorders. In the meeting last week he was leaning very heavily towards Psycho-somatic issues as the root cause of her symptoms. In other words, he's thinking all of her symptoms are stress related. The doctor who's run the nerve conduction test has mentioned that there is obvious nerve de-innervation, and he's never seen that happen in stress induced issues. So we're getting mixed signals from these specialists. When we asked what their recommended treatment was for Psycho-somatic issues, they told us professional counseling. This Tuesday we will see what they come up with after looking at all of the more extensive tests they've run this past week.
All along we've been in touch with the doctor we saw in Las Vegas. With the Radon test coming back within normal limits, the next possibility in his mind is to look at heavy metal poisoning while we continue to wait for the pesticide/herbicide test to come back. To test this, we have to go to a Naturopath in the area to get an IV that will fill her system with a substance that will bind to any heavy metals in her system and will excrete them in the urine. So after the IV, she will need to do a 6 hour urine catch, and this will give us an accurate reading on if heavy metals are in her system. We asked where the heavy metals could come from. We were told that vaccines, amalgams (the metal they used to fill cavities), lead in old paint, copper from copper pipes were some of the more common ways we are exposed to heavy metals.
We are hoping for some more answers this week with the visits to the neurologist and as the labs start coming in.
Again thanks to everyone who continues to help. We've had friends who we didn't know lived here in Utah, show up at our door almost demanding how they can help. We've had meals come in, helps with rides to doctor visits, help with kids, cleaning the house, mowing our yard...its been wonderful seeing everyone help.

If you would like to donate in helping us continue with Whitney's treatments to get her health back, you can do it one of 2 ways:

1) Go fund me  http://www.gofundme.com/wgxdv9h

2) If you have a Google Wallet account you can send it directly my account using my email brian.massimini@gmail.com

Updated Family Picture

My Hope is Safe

My Hope Is Safe   

I feel my blood begin to boil.  I have seen that look in the eyes of so many doctors in recent days. I know what’s coming next and I’m not sure I can handle it….at least not very graciously. ‘He has no idea’. I admit to myself. Each new doctor I consult with begins with great hope in my heart, perhaps they will have the answers! Each visit ends with that same empty look in their eyes, and that hope crashes and shatters into a million pieces. I don’t blame the doctors or devalue their contribution to the human race. No, blame doesn’t help. “So what’s the next step?” I hear the words and moments later realize I had spoken them. He hesitates, and I will him not to speak the words.’ Remember blame doesn’t help, so don’t blame me’ I inwardly beg. As if in slow motion his lips part, I want to plug my ears, I want to walk out, his words reach me, muffled by the pounding of my heart,  “well if all these labs come back clean then we just have to go with it’s all psychosomatic.” His recommendation: counseling. There it is, he forfeits, it’s all in my head, a ploy to get attention or the symptoms of stress. He is wrong! I bite my tongue so hard it bleeds, wanting to scream, knowing it would do no good. He has already given upon me.  I can’t get out of his office fast enough.

Exhausted in every way, my head sinks into my pillow. My blood still boiling, the question rings in my ears, “why do they all give up on me?” As if in response, another question. “Have they ALL given up on you?” I roll over, tears fill my eyes as I observe my Husband laying beside me. No, He has not given up on me. He has picked me up off the floor when I have fallen, he has held me tight as my tears soaked his shirt, He has made me laugh, oh how I need to laugh. He continuously seeks answers. He walks slower, allowing to me to keep up as a hobble along. In a million different ways everyday he refuses to give up on me. He carries me. I lay marveling at this man when my thoughts turn to another man who refuses to give up on me. He also picks me up when I fall, and dries my tears when my heart aches. He holds me tight and lends me His strength. He fills my heart with joy as I experience happiness amidst the happenings. He has all the answers!  He walks beside me, allowing me to hobble along, and when my strength is gone, He carries me. I feel the pieces of my shattered hope reassemble in my heart then course through my body until I am filled. This time my hope is safe, it won’t be broken, it trusts  no more in the doctors alone, but is anchored in the hope of the Master Healer, who will not give up on me, who holds all the answers, all the peace, all the light, all joy, the greatest gift even eternal hope!!  

Another doctor, empty eyes, no answers, but this time is different. I eagerly allow my husband to enfold my hand in the strength of his own. I brace myself for the words that I know are coming, this time they will not break me. On borrowed strength I walk out of that office, the warmth of the sun kisses my face. My husband with me, my Savior beside me, my trust in the Master Healer,   my hope is safe!

Over 10 Doctors so far...

FROM THE BEGINNING...

Back in the beginning of May 2015, Whitney noticed some numbness on the top of her right leg shortly after working in the front yard pulling weeds. After a couple of weeks the numbness spread across the entire front of her shin bone, a partial sensation loss in her right arm, and pretty severe weakness in her right leg and arm. She started falling more and more just walking around as the weakness in her leg worsened. The month prior to all of this we lost our insurance and we were actually in the process of getting another but it still wouldn't become active for another month. Regardless of not having insurance, we were advised by a couple of family members who are medical doctors in other states to take her into the emergency room as they would run all of the necessary tests to rule out the scary conditions (Brain Tumor, Multiple Sclerosis, Guillen Barre Syndrome...). We arrived at the ER at 12:30 pm and didn't end up leaving until 11:30 that night. After seeing 4 ER Dr's (one which was a neurologists who was ordering tests all along), an MRI of the neck and brain, Lumbar Spinal Puncture, and a battery of blood work, we left with the answer that everything is normal. We were still waiting for a couple tests to come back, but we left with no answers. Within a few days the other tests also came back clean and clear...which in one way we were very grateful, but in another way, we were frustrated not having answers. Since the standard medical route left us at a dead end, we decided to make a trip to Las Vegas to see Dr Greg Olsen from the Nevada Clinic where they combine both the medical and alternative sides of healthcare quite skillfully.

THE NEVADA CLINIC

In preparation for out trip we had a few more labs run to look at her thyroid. We spent 2 days at the clinic where they ran stress tests on her body in a couple of different ways, Vitamin/Mineral IV (vitamin C, vitamin B, magnesium), multiple homeopathic remedies, they stared her on thyroid medication and adrenal support, Iodine, and Selenium. After the second day Whitney did notice a small improvement in her ability to walk a little more normal. We left the clinic with great hope as according to their tests she had an Un-diagnosed Neurological Condition that is aggravated by a possible radiation (radon) and pesticide poisoning. We were urged to have our basement tested for radon gas and look into any pesticide/herbicide that was used by the previous tenant (we are in a rental and it is ran by a property management company). In the midst of investigating into those things further, they gave Whitney slew of homeopathic remedies to help with the detoxing of those substances. Dr Olsen also thought it important for us to eat a healthy diet and take proper supplements to help support her immune system, brain and nervous system, and support her intestinal track. We mention that we just started her on juicing again, and he was very pleased to hear that as that can be a very potent way to get the proper nutrients to support the body.They also said that getting weekly (at least) vitamin C IV's would be very wise.  We left Vegas feeling hopeful.

Since being home we have had out basement tested for radon and the results came back at 1.7 pCi/L, which the national average is 1.4 pCi/L and anything over 4.0 pCi/L is considered dangerous. Getting those results back was a blessing. After ruling this out we decided to go to another doctor in the area and get more tests done to further investigate Lymes disease and possible pesticide/herbicide poisoning.

CANYON VIEW MEDICAL (FAMILY PRACTICE)

We found a new family physician in the area near our home. On Tuesday 6/8/15, we met Dr David Beckstead MD to get another head in on our situation. He agreed to run some more specific tests for Lymes disease but he also wants us to get a nerve conduction test. We are being sent out to another Neurologists to get this done. This procedure basically entails getting acupuncture like needles into your limbs along the paths of the nerves to test how the nerve is conducting the signal throughout the body, This will allow them to see at what point throughout the limb or spinal level is not conducting the impulse. This test will be done 6/12/15.

UTAH VALLEY HEALTH CENTER

We were led to this clinic as Dr Jeffery Wright ND (Naturopathic Doctor) is known in the area for working with Lyme disease patients. We recently visited with Dr Wright and shared with him everything we've gone through in the past month or so. After performing his exam he is very suspicious of possible Lyme's disease, and if not Lyme itself, possible co-infections carried from the same tick that often are seen together with Lyme's such as: Babesia, Bartonella, Ehrlichia, and Anaplasma. Often times when the bodies immune system begins to attack those bacteria, the bacteria release biotoxins to protect themselves from being destroyed. We told him that we are still waiting for some specific Lyme's blood tests to come back but that we should hear back in a few days. In the mean time he thought it wise to continue with the Vitamin/Mineral IV's similar to what cancer patients use to help rebuild their immune systems during chemotherapy. The combination consists of high doses of vitamin C (25,000 mg), a mix of vitamin B, and magnesium. A few days prior to going to see Dr Wright, Whitney noticed that her right hand began to tremor uncontrollably, which could be a sign of the bacteria causing more damage. At the beginning of the visit her hand was shaking the worse it ever has been. By the end of the IV, her hand had calmed down significantly. We were also advised by Dr Wright to support Whitney's immune system, brain and nervous system, and her intestines. Doing this will help change the environment that the bacteria live in, making it harder for the bacteria to survive.

SUMMARY

After seeing a total of 9 medical doctors (2 of which are family that we consulted with long distance, and 2 Neurologists),  1 Naturopathic Physician, 2 Chiropractors, 2 Homeopathic Practitioners, 2 MRI's, a lumbar puncture, and a slew of blood tests, we still do not have a firm diagnosis and the symptoms seem to only be getting worse. We're hopeful that the vitamin IV's will continue to help as we stay consistent with them weekly and stick to a strict dietary protocol to help support her body so that the bacteria won't have an environment within her body to survive. Whitney is still struggling with walking as her right leg is weak and has lost a lot of muscle. Her right arm is along the same line just not as bad. We are hopeful that with the tests that we still have out, something will come of it all and we'll be able to make some sense of all of this. Until then, as we continue the journey, all we have control over is our own attitude. We'll continue to look forward, with our heads held high, grateful for the days that we still have together as a family.

THANK YOU

So many have already sent help either monetarily, physically around the house and with kids, and prayers. We've been overwhelmed by the outpouring of love by so many. Thank you so much!!

If you would like to donate in helping us continue with Whitney's treatments to get her health back, you can do it one of 2 ways:

1) Go fund me  http://www.gofundme.com/wgxdv9h

2) If you have a Google Wallet account you can send it directly my account using my email brian.massimini@gmail.com

Whitney at the Sams Town Hotel in Las Vegas

Also a recent video of what Whitney's tremors look like has been uploaded to the facebook page dedicated to Whitney's Health Journey  https://www.facebook.com/pages/Whitneys-Health-Journey/1594922644118410

June 8, 2015

Mama's Work Hard...in Every way. 

                                 

Strong.  Yes, I have always considered myself to be a strong girl, a strong woman.  In fact I have prided myself on it. Oh, I can dress up and be feminine and beautiful with the best of them, but so often I felt just as beautiful rolling up my sleeves, getting dirty and accomplishing a hard days work.  I believe in hard work.  I’m good at it.  But I never defined it the way that life has defined it for me recently, and oh how I would rather be doing yard work, scrubbing toilets, or any other manual labor job….you name it, I’ll do it. But that’s not the plan for me. Not right now.  No, hard work for me is no longer defined by dirt under my nails, calluses on my hands, or long active physical experiences. Hard work for me now consists of a completely different kind of endurance, digging out weeds much harder to find and conquer. Calluses on the heart and spirit, that help me stay tough, allow me to press forward.  Endurance of the spirit, the kind that can be accomplished only through the strength of my Savior Jesus Christ. 

“Mama, can you hold me?” words that are music to my ears, at the same time leave a bitter taste in my mouth. How desperately I want to pick up my sweet boy and hold him close to me. Oh, if only I could will my arms to have the strength to lift his tiny body, throw him in the air and swing him around. But that strength and control left me 5 weeks ago. I very awkwardly hobble over to the couch, dragging my numb, stiff leg behind me, inviting my little boy to climb up on my lap where we can snuggle. He is content. For a moment I start sinking into a black hole. What kind of mother am I that cannot even pick up her small child? My children deserve more/better. He reaches up and touches my face. His soft hand, tiny, familiar. I reach up and touch his hand, gently holding it in mine, and feel myself begin to rise back to the light, leaving that dark hole of sadness and self-pity beneath me. I clasp his hand a bit tighter and hold on desperately, as if this 3 year old boy is my life line to that light. I look down at him, as if in response he looks up into my eyes and for a moment I see myself through the eyes of my child.

I am his Mama. I am strong. He does not measure my strength with how fast I can run, or how high I can throw him. My strength to him is measured in love. He does not care that I have to sit before we snuggle, only that we do snuggle. He needs to feel safe and loved, secure and happy. So long as I provide those feelings for him I am strong. I am Mama. His love for me does not diminish because my body struggles, but thrives when my heart is open. He feels safe and secure when I provide an environment where the spirit is present, a Christ centered home. To accomplish this most vital goal does not require the dishes to be done or the house to be spotless, the weeds to be pulled or for me to fit into my size 2 jeans. It requires my heart, my will, my humility, my love and my submission to My Savior Jesus Christ and the hard work He has planned for me to do. My strength is defined not by the weaknesses of the flesh, but by the willingness of the spirit. My strength , every ounce of it, physical, emotional, spiritual abides in Jesus Christ. I am strong only as I submit cheerfully and gratefully to His plan for me. I am strong in His light. I am strong in my faith in Him. I am strong as I bask in the gift of the atonement that He has lovingly given. I am strong as I give all I have and all I am to Him, to my babies, my husband and all those I can reach.  I don’t know what the plan for my body is, but I do know the plan for me is to succeed gloriously in teaching and loving my family, serving and keeping my covenants, ultimately returning to live with my Heavenly Father again and basking in the Light of Christ for eternity.

Strong. Yes, I am a strong woman. My strength is my faith In Jesus Christ. I am learning to love this newly defined hard work where the simplest of physical tasks takes concentration and exertion.  The real work takes place inside.  Learning to let the spiritual master the physical, dispelling the dark chatter in my head and replacing it with positive words of light. Understanding my true worth on a level that I have never discovered before.   

I wrap my arms a little tighter around my sweet boy and feel him nuzzle into my love. I am a Mama.  I feel the warmth of my Heavenly  Fathers arms wrap and  tighten around me, and I nuzzle into His love. I am a child.