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My name is Danielle. For the last few years I have been fighting ailments within my family which I will explain more below. Learning that doctors are not perfect was really hard to understand. They go through this enormous amount of learning in a relatively short time. We expect so much from these people yet when they do mess up, we then realize they are not perfect and they are human just like us. What is really important is question everything!!
Hear my story below:
It all started when my husband began having black outs. After a black out at his place of employment he was taken to the hospital. They ran tests upon tests.... there was no answers. But yet there was a diagnosis. A doctor from the neurological department deemed his diagnosis and literally labeled him forever. He was diagnosed with Epilepsy. The classification of the seizures were then given a label of absence seizures (these are basically petite-mal vs grand-mal).
We left the hospital feeling literally stunned by the news. How was this going to affect our lives? The doctor also told my husband that he could not drive for six months since he was told he was having seizures. In most states if someone has a seizure it is the tradition (I am sure there is a law somewhere) for the doctor to suspend in a sense the driving habits unless the patient goes without a seizure for a consecutive six months.
One of the first things done at home was getting rid of the 2nd car. I had just paid my vehicle off and sold it. UGH We kept the faster car but I really should have kept the 4-door car. Never ever did I have issues with the 4-door car. Years later the car we ended up keeping died... oh well. You live and learn right?
After that diagnosis my husband had several more black outs. The medication prescribed by the neurologist was not working. Not to get overly graphic but when my hubs went #2 the meds usually came with that and were still whole.
After more and more blackouts it came to a point where he was getting additional symptoms including what felt like thunder through his legs -- or as he put it lightning strikes.
We went again and again to the ER several times. One for his CPK (Creatine Phosphokinase) levels -- they were 20x more than the norm. Normal levels are 10-20 micro-grams My husbands level was over 2,000. They kept him in the hospital for several days with no answers.
Also because my husband was now having pain in his muscles so badly he now required pain medication. Great another prescription. ugh.
It came to a point where he had to stay in another part of the house because he would be up all hours. The medication given to him was strong and therefore he became erratic in his behavior and it probably caused more problems.
Try having to cancel several things signed up for online because of your spouse drunk webbing. Mildly annoying really, but easily forgivable.
Another instance that was taken as another case of a blackout was when he collapsed from heat exhaustion Instead at the hospital they treated him for the blackouts and blamed it on epilepsy. It was very hot that day. The doctors would not listen to me and started treating him in the ER. He was in the ICU for 4-5 days. Everyday I stayed by his side. He was now having Grand-Mal seizures like a floppy fish. This was new and what was causing it. They were giving him fosphenytoin as well as other drugs he should not have taken. We now list one of his allergies as fosphenytoin. After talking to a friend that has a child with epilepsy, we knew she had done her homework on these drugs and explained to me what was good and the opposite. We discovered that fosphenytoin was a very old drug and actually could cause seizures vs controlling them. I demanded that he be removed from all medication and released. They thought I was crazy. But he walked out of the hospital that following day in the afternoon.
So fast forward a couple of years -- Another Neurologist decided to take some large muscle fibers from my husbands calf. This would be a surgery where my husband would be under anesthesia. They biopsied the large fiber muscle and found no sign of peripheral neuropathy. Well there are two different types of this neuropathy -- Large Fiber & Small Fiber. Depending on which one can really depend on pain and causes.
When that came back negative I was quite surprised to find out later on they had never tested for small fiber.
Years again went by without answers and more symptoms were happening.
My husband decided hey I am going to go to my digestive doc. Ok I thought, maybe this doctor has some answers. It had been a bit since my husband had a colonoscopy so it was scheduled we did it etc. Also the doctor took samples of blood and feces. By the way the scope was clear. Yay!
The results were back and the doctor wanted to see my husband. So we go to the appointment and the doctor says " You have enlarged Red Blood cells!". When there is an enlargement in these cells it usually points to a Vitamin B12 deficiency. The interesting part of this is my husband had the symptoms for a long time. Read about B12 Deficiency symptoms.
We tested for everything from Lyme disease to Lupus. Still no answers.
Finally a couple of years later my husband went in for some check up stuff on his heart. Stress test etc. The tests you generally get after you turn a certain age. Something had to come up on one of the tests to warrant a Cardiac Catheter procedure done. The day came to get the Cath done. It seemed like forever for the procedure to be done. Back and forth I paced through the hospital. Gift shops are so easy to get sucked into, especially the one I was in. There were fantastic earrings in this shop.
The doctor explained to my husband that they had not found anything*. However, my husband has not had a black out since. What factors played into this is it had to be an arrhythmia or TDP (Torsade de Pointes). *Results found were "inconclusive", meaning there are no answers!! We will get into these more on another posting.
After that experience and no longer having blackouts he still was suffering from the pain in his legs and arms. He would literally curl up into a ball.
He has been seeing a chiropractor that has done wonders with his back and knees and hip.
There are some aging effects that he now suffers with and will probably need a knee replacement on both knees.
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During the time that my husband was extremely ill I also began getting ill. My back felt pulled and tired all the time as well as the rest of my body. My skin was ultra sensitive to touch and I felt exhausted constantly. Was my body having a nervous breakdown? Was I having a hormone crisis? What was the deal? For a couple years I ignored this and figured it was stress related.
A couple of years ago my body was in severe pain and I fortunately didn't go through a ton of hell like my husband did but now I was facing my own problems.
I felt, on top of the health issues, crazy and like I was literally over sensitive and just irritated with everything. To the point of going to a shrink. That doctor said hmm interesting... .lets test everything possible with your blood and come back and see me. So I did just that.
Everything came back great except one area --- My Vitamin D.
A normal range of vitamin D in your blood from the 25-hydroxyvitamin D test is between 30 and 74 ng/mL, or nanograms per milliliter. If you have a lower amount of vitamin D in your blood, you may not be getting enough vitamin D in your diet, or you may lack enough sun exposure on your skin
. Other possibilities include a kidney or liver disease; a problem with your body's ability to absorb vitamin D; or your use of medications that lower your level of vitamin D.My score was a 6. That woke me up seriously fast. I was now on a pill that I took monthly that contained 50,000 iu of Vitamin-D. I then made appointments with the Endocrinologist to look further into it.
My doctor found tumors in my Parathyroid gland. This gland is very very important and produces the calcium for your body. When this gland goes haywire, it can over produce or under produce. Also it can strip vital nutrients from your body including Vitamin D and Magnesium... along with the Calcium. I took tests and scans this and that and the other. The ultra sound is the only thing that really showed definitive proof that something was there.
It was so unclear that my surgeon had to have a meeting with colleagues to make a decision whether to operate on me or not. Luckily the colleagues agreed to operate. Yay! So the doctor goes in and opens my throat up and sees that all four of my glands have tumors. He cut out 3 1/2 glands out of the four. The small piece left of my remaining gland is actually enough to produce calcium for my body.
My Vitamin D levels are now over 190... a bit too much now ... Yay! So now I do not have to continually OD on my vitamin D supplements. sheesh.
But the other issues that I have are semi permanent. The back issues I have include -- Scoliosis, Spinal Stenosis and Degenerative Neck and Back disease along with a diagnosis of Fibromayalgia. I have pain every day 24/7. There are 4 medications that I take everyday that I would have never imagined taking, ever! I will get into this on another posting as well.
So now food is my next challenge. If I eat right and smart then there is a possibility this could really be something else.
In discovering these changes and what really can affect the body, we have literally helped others in the process. This is the reason for this blog. We are very much into researching out these horrid diets that we have become accustomed to and changing the way people think about themselves and their ailments and reversing the damage done.
If there are any questions, comments, etc please contact us! We would love to help you!!!
Thank you for reading my blog and for now, I wish you well! Hang in there and we will chat more soon!!
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