Undiagnosed Symptoms Community
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My husband is left undiagnosed

My husband is 53yrs old and has been progressively getting worse over the past 4yrs. He has the following symptoms
Temperature of 34 to 35 degrees c. Sweating and shivering,Chronic pain mainly in feet, legs and arms. Loss of mobility and spends most of his days in bed or in his room. Myotonic seizures, labored breathing and on oxygen. Difficulty swallowing, constipation and diarrhea, loss of memory, cognitive dysfunction, electric shocks up the spine, stammers when talking, depression, extreme fatigue. Sharp shooting pains in his chest, amongst other symptoms. He has had MRI done on brain and spine, showing a large Virchow robin space and chronic ischemia as well as indication of mini strokes. He also has had an eeg, muscle test and seen 2 neurologists who say there is nothing wrong. He has a high white blood cell count, extreme deficiency in vitamin d, high uric acid, dehydrated despite the fact he drinks at least 1 to 2 liters of water per day, please can anyone help!,  his mother was sick when he was a child, suffering chronic migraines and fatigue, his sister died at the age of 28yrs put down to organ shutdown and his biological daughter was ill with extreme knee pain and chronic fatigue as well as severe weight loss. The last neurologist told us my husband needs to see a psychiatrist as there is nothing wrong with him?. We don't know where to go to from here. What dr would be best to see. We live in South Africa so expertise is limited. Thank you for taking the time to read this.
3 Responses
1530171 tn?1448129593
OK Bernyse.
It is critical that you focus only on the extremely
vital aspects of your husband's health, in order to avoid
even further complications.
Medical incompetence is what it is, period!
It's not a matter of lack of expertise, it is rather a
case of deliberate neglect, since your husband no longer fits the patient "model" of the medical system.
Should you have a lot of money to seek proper private medical attention for him, I suspect his health status would have been a little different today.
Sure, there may be some genetic association, but there  are also many other factors  which have led to his deteriorating health.
--His body is under constant stress and the adrenals have been producing a large amount of stress hormones up to the point of exhaustion, causing what I strongly suspect: Adrenal Fatigue.
Along with cortisol and adrenaline, the adrenals also produce another hormone called aldosterone, which regulates bodily fluids and electrolytes, helps control blood pressure, regulates sodium and potassium levels.
The "flashlight test would likely show that the pupils fluctuate when sodium potassium levels are not in balance.
Salt wasting could be one of many complications of low aldosterone. A fast remedy would be to take some sea salt (not commercial, natural) min. 1/2 teaspoon daily.
So his dehydration would be explained by the low aldosterone.
--Dehydration is very dangerous and when chronic it can severely affect cognitive/brain function, heart function,
electrical activity , energy levels and a lot more!
It can also cause severe headaches and migraines.
Some coconut water would benefit him greatly, as it naturally contains many electrolytes and also help with hydration.
I would also look into "structured water" and hydration supplements.
--His extreme vitamin D deficiency is alarming.
He will NOT improve, unless this deficiency is addressed properly! (he may also have vitamin D resistance
It can cause low levels of calcium in the blood. This can lead to muscle cramps (spasms),  seizures and breathing difficulties, bone & joint pain, fatigue, Digestive and G/I issues and on and on it goes!
Shame on his doctors who ignored these basic imbalances and suggested that there's nothing wrong
with him.
Who's kidding who here?  I'm appalled!
He must take substantial supplemental D3 with vitamin K2, a minimum of 5000 IU daily for a few months till his levels improve. Sublingual D3 drops and injections  work best, but fat intake is necessary for absorption since vitamin D is fat soluble (and so is K).
--The 3rd thing to look into is finding a holistic or functional medicine doctor who is familiar with adrenal
issues and adrenal fatigue and help your husband recover as much as possible, before any more serious organ involvement takes place.
This a complex condition and you're up against a medical system which is in deliberate denial as I mentioned earlier, at least when it comes to conditions like adrenal fatigue.
His low temperature and many other symptoms may have to do with dehydration, low adrenal function and hypothyroidism type 2/ thyroid-resistance (secondary to adrenal fatigue).
I hope this helps.
Please let me know if you have any questions.
Best wishes,

Thank you so much for your advice and assistance. I truly appreciate it. I have written to the university in Pretoria in South Africa to ask for assistance. Do you think he could have Lyme disease or perhaps mitochondrial disease. The live blood test showed erichea anaplasmosis as well as coxsackie virus. Thank you
I'm not surprised with the Ehrlichia Anaplasmosis and the Coxsackievirus presence in his blood.
When one's Cortisol levels are low,
since  Cortisol regulates the immune cells in the gut so when cortisol is depleted those cells become dysregulated, making one more susceptible to pathogens like bacteria, yeast, and parasites.
He does not need a mitochondrial disease diagnosis!
His imbalances and recently diagnosed conditions are more than enough to constitute mitochondrial disease.
Do not look for any additional answers, as the whole situation will get out of hand while still pursuing
more diagnoses.
Time is of essence.
Normally a condition like Coxsackie
virus is self-limited, meaning it resolves on it's own within a short time, but in his case, because his immune system is so compromised
it may lead to further complications such as Chronic Fatigue.
Same with  the Ehrilichia Anaplasmosis, often co-existing with Borreliosis (Lyme disease) where under normal circumstances
(ie having a strong immune system), a short course of antibiotics like Doxycycline in early stages, usually takes care of it.
The  aforementioned conditions as
chronic infections/syndromes present a 2-fold issue.
They are extremely difficult to treat and eradicate (1) and the medical system may not fully consider the chronic nature of these infections as "established" (2).
My opinion is to seek a reputable holistic/functional medicine doctor, preferably someone with the LLMD designation (unofficial).
Visit ILADS website for details and referral.
Best wishes,
HI Niko,
Thank you for your help. We live in a small village in Dullstroom, MPUMALANGA, South Africa. Unfortunately the closest reputable wholistic dr is 3hrs drive away. My husband is struggling terribly with his stomach, excessive bloating, pain in his upper and lower abdomen, he feels as though he has to lift his stomach up when trying to rise and has to put a pillow on his side when lying down on his side. He has excessive reflux and constipation. We have been trying to lower his dose of morphine but the pain in his legs is excruciating. He is also on cortisone for inflammation. I apologise for asking so many questions it's just so difficult to find help. I have tried on numerous occasions to contact a professor in South Africa at a medical university but their phone never gets answered. A neurologist in Pretoria can only see him end of February 2017. Is there a blood test that would indicate mitochondrial disease. I have researched the ama test? My husband is looking for a diagnosis, which I can fully understand. I am extremely greatful for your help. Thank you
AMA testing would be when there's mainly a suspicion of Primary Biliary Cirrhosis, an Autoimmune condition where antibodies attack certain liver-related mitochondial cells in error.
But the AMA is only one of many tests needed to diagnose this condition.
What makes you suspect this?
If there are no strong indicators, then, my suggestion is to go back to the information I have already given you and follow up the best way possible.
Prolonged cortisone intake provides short-term temporary relief, but almost certain long-term negative effects.
Is medical marijuana available by prescription in S.A?
It might be a better option for relief & treatment , specially if he takes the
CBD type which has less of the narcotic effects.
Another remedy you may want to look into for boosting his immune system is Essiac Tea.
I make mine by using organic herbs
from StarWest Botianicals (USA)-
a blend of organic burdock root cut, organic sheep sorrel cut, organic (Turkey) rhubarb root cut and organic slippery elm bark.
The situation calls for drastic measures and unfortunately it all falls on you to take charge and soon!
Best wishes.
363281 tn?1590104173
Hello~I am so sorry your husband is going through this. I don't know if South Africa has chiropractors, but if they do, I highly suggest he see one. If he has vertebrae out of alignment, he will have those shocks you are describing, plus depression and other pains.

He also should be tested for chronic fatigue syndrome, aside from the seizures, his profile fits other folks who have this disorder.

I also think his mini strokes are also contributing to his issues,.
Avatar universal
It may help to get his medical records and look at the reports yourself. One doctor may not know what another is doing. If you're in distress or they think you won't understand they may not explain fully to you what's happening.
Based on you're report he's seriously ill to the point of being on morphine (so the doctor who wrote that rx knows there's something seriously wrong physically), having difficulty eating (so of course he has nutritional deficiencies), and he's bedridden. A person in that condition where I live would be in a hospital or nursing home or would have a nurse coming to the house.
Thank you for your advice. Unfortunately in South Africa nursing homes are for the rich and no such thing as palliative care. Government hospitals are where you go if you want to die, poor state no staff and no Drs. Filthy wards with no bedding. Hospice refuse to travel to us even if we offer to pay for the expense? We just can't seem to find the help we so desperately looking for.
I'm very sorry to hear that good care is unavailable and that you're left to care for him yourself. In my opinion you should give him the full prescribed dose of morphine to control his pain. Get the full story from the neurologist and ask to read the MRI report. Possibly if there's pressure in the skull it could be relieved with a shunt?
I re-read your post. Maybe the chronic thirst and bloating are due to diabetes insipidus (not like sugar diabetes) related to ischemic strokes. His system of water regulation is messed up. Vasopressin controls it from the brain. A synthetic drug that can help is desmopressin nasal spray.
Once his dehydration is under control some of his other symptoms should improve.
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