My son is very sick; doctors don't know why

[Rhiannon5]

My 14-year old son has been failing in health for the last four years. Five out of seven doctors have told me that he's just depressed and making things up to get attention, but I KNOW my son and he is very sick. The most recent blood work revealed that he has kidney and liver damage, as well as a swollen spleen. However, the doctor that finally ordered these blood tests doesn't know what to do for him and wants me to take him to a pediatrician -- but his pediatrician was the first doctor to tell me he was pretending just to get attention! I don't know what to do for him and the local doctors don't either.  However, he is extremely sick and basically bedridden.

His other symptoms include:

Loss of appetite
Loss of weight
Immense loss of muscle tone
Hand tremor
Stiff legs
Joint pain in his legs
Debilitating fatigue
Increasing difficulties in cognitive functioning: can't think clearly, can't follow the plot of movies
Sensitivity to light
Sensitivity to sounds
Aversion to strong flavors or strong scents
Increasing difficulty putting thoughts into words; has a hard time communicating
Inability to tell when he is hungry/thirsty
Swollen lymph nodes
Stunted development for his age
Uncontrollable muscle spasms: can't hold still when awake, will jerk himself awake when asleep
Weird headaches
Poor hand/eye coordination
Aggressive (never used to be)
No longer has beautiful handwriting, although he did before
Has an extremely difficult time reading (didn't use to)
Has regressed mentally
Not where he should be developmentally
Hot, clammy forehead
Cold, clammy hands; VERY clammy hands
Poor balance, occasionally complains of being dizzy
Frequent infections & colds, never seems to be able to get well
Doesn't appear to feel pain much anymore

The first thing I noticed four years ago was that he would get very sick after any expenditure of physical energy. At first, it would only be for a few days. Within a year, it progressed to where four hours of playing at Carnaval was followed by a month of being very sick.

Now, he is never well. Each time there is an expenditure of physical, mental or emotional energy, his health takes a steep decline and even if it levels off, he never gets back up to what he was before.

I do know that his maternal great-uncle, in adulthood, had his myelin sheath stripped. He also had stiffness in his legs and hands, but that's all I know.

The regular blood work, CBC, smear, etc., all comes back normal, but he is going down hill, and he's going down hill rapidly. I don't know what sort of specialized tests to ask for. The doctors have said he does not have epilepsy, or leukemia.

But, after being repeatedly told by various doctors that he was just faking it, a year ago, a new internist diagnosed him with 1) pansinusitis; 2) bronchitis; 3) an ear infection; and, 4) a large cyst in his front nasal cavity. The pansinusitis, bronchitis, and ear infection have all cleared up with antibiotics, but he still has all of the above symptoms. He's still sick and I don't have a lot of faith in the doctors telling me there is nothing wrong with him.

I've thought of taking him to the US for medical treatment, but the trip would be too difficult for him while he's this sick. In my country, I don't need a doctor's prescription to order blood work. I can order them myself. However, I'm not a doctor and I don't know what to order! Any suggestions on specialized tests I could order to find out what is going on would be greatly appreciated. Please help. He is so sick and going down hill rapidly.

[JohnnyRocket244]

So sorry to hear about your son. Look into a condition called Nutcracker Syndrome (Renal Vein Compression). It’s a complex debilitating condition that can affect every part of the body. Several studies have shown Nutcracker Syndrome can cause ME or Chronic Fatigue Syndrome. A lot of his problems could be explained by this miserable condition.

Many of his symptoms also sound like Multiple Sclerosis. 80% of people with MS have ME/CFS (Chronic Fatigue Syndrome). It’s very possible severe Renal Vein Compression can cause both MS and ME/CFS. I would recommend joining a Nutcracker Syndrome Group on Facebook. There are some very knowledgeable members that can help you with what tests to order and possible treatment options if he does indeed have this condition.

The are only a couple doctors in the US that members of these groups trust to properly treat this condition. There is a German doctor that is considered by many to be the best in the world at diagnosing and treating Nutcracker Syndrome. His name is Prof Thomas Scholbach. Very few doctors even know that this Vascular Compression Syndrome even exists but it can cause many if not all of the problems that he’s having.

[Rhiannon5]

Thank you so very much. I have never even heard of this. I looked up the symptoms of MS and you're right - there is a lot that is similar to what he is experiencing. When you refer to CFS, you also refer to ME. What is that?

Thank you so much for taking the time to write such an indepth response. I am so grateful.  ~ Rhiannon

[SassyLassie]

Hello~You have been given wonderful and informative answers from these posters. I would just like to confirm that you should ask the doctor about MS as his symptoms sure do point in that direction. I would keep looking until you find a doctor that will listen. Your son definitely  needs help, he is not just trying to get attention, I am so sorry you are going through all this heart ache.

I noticed one poster said to increase the B12, I would also add a high potency complete "B" complex.

I am from America, near Seattle, and there, certain labs do allow the patient to prescribe their own blood work. I now live in New Zealand and we are not allowed to have any blood work or tests without a prescription, you are fortunate that you are able to do this.

If it were me, I would start off with ordering a Complete Blood Count (CBC) a metabolic panel, thyroid panel, immune panel and possibly food and chemical allergy panel.  Also, if they do them, ask for blood work to check for vitamin levels, electrolyte levels, blood sugar, lipid panel, and one that checks for Epstein Barr virus (Mono). When all these come back, hopefully, you would have some idea as to what is going on, of course you would need to take them to your doctor to have them explained, and, hopefully, after the doctor saw all the results, he would take you both more seriously and if he doesn't know what to do to help, then make him give you the name of a physician that will help.

I hope your son gets the help he needs. God bless you both.

[Red_Star]

There are many conditions that affect myelin. Check out Wikipedia's article "Demyelinating disease" for other possible causes.

Just to add, I am currently very sick due to toxic mould and have plenty of symptoms with a long list of neurological symptoms. I did a VCS (Visual Contrast Sensivity) test on my smartphone (first test is free) and showed up positive for biotoxin exposure. The VCS may reveal conditions with underlying infections like biotoxins, lyme disease and deficiencies.

[Red_Star]

I had many of these symptoms from autoimmune pernicious anaemia (B12 is essential to maintain the myelin sheath). My blood count was all normal even with severe vitamin B12 deficiency. Pernicious means deadly and this autoimmune disease is 100% fatal without treatment. Antibodies to confirm autoimmune pernicious anaemia: intrinsic factor antibodies and parietal cell  antibodies.

[Rhiannon5]

Thank you, Red_Star. I will absolutely have this tested. I really appreciate this info.