Undiagnosed Illness - Is there anyone out there that can help my poor lovely Mum?

[Sarah571888]

About 2 years ago my fit (good walker), young looking 77 year old Mum said she didn’t feel quite right!  

After a couple of months thinking this feeling would go naturally she started to get double vision so she went to her doctor who referred her to the local neurologist who curtly dismissed her as suffering from stress.

Following this a whole list of symptoms she had never had before along with double vision (one eye actually sticks in place whilst the other moves normally until it then corrects itself) occurred;  muscle loss, oral thrush, hair loss, scaly scalp, rash over bridge of nose/cheeks, eyes extra sensitive to light, red glows on her elbow joints, significant vein mottling on knees and backs of elbow/arms, joint stiffness particularly neck/shoulders, swelling of ankle joints, bloated stomach, but most of all chronic fatigue/weakness (which at the start was 2/3 days a week, now every time she expels energy over even the smallest of tasks it is now exhausting for her. When she feels very weak her fingers and toes tingle and finger tips turn red. She has had no significant weight loss but says to pass a motion she now almost has to instruct her bowl to work rather than natural function.  She also says she generally feels worse after eating but his may be due to energy used before hand to prepare meals.

Since this all started she has had more blood tests than I can count – all negative.

She was then referred to the elderly patient specialist who to be fair sent her for brain CT scan (possible scaring but normal for age) CT scan abdomen (clear), echocardiogram and 24 hr heart monitor (thickening of heart muscle may be minor valve leak, angina but did not seem overly concerned – her doctor thought this was a red herring as blood pressure has remained pretty constantly OK.

However over these two years she has been told she may have thyroid trouble/low cortisol, fibromyalgia, polymyalgia, heart issues, lymphoma, parkinsonism, all of which do not appear to be the case (for which she has had a whole variety of pills thrust at her for short periods without positive response).

Parkinsons does run in her family and her doctor now says he wants to trial her on Parkinsons drugs but at the same time says her symptoms don’t appear to be like Parkinsons!  In fact despite all the tests and symptoms he still doesn’t know what it is.

I am convinced she has an autoimmune condition like Sjorgens syndrome,lupus ,Raynards or similar which we have suggested to her doctor/specialist but they appear to go on blood test results alone which from my extensive research does not always prove a person with a negative blood test result does not have the illness.

She is currently not being treated because no one can give her a proper diagnosis and consequently she is getting very weak.
PLEASE CAN ANYONE HELP?

[maylise]

Hi
Feel so sorry for both of you,it's not easy seaching for a diagnosis and not getting anywhere. One thing is for certain.....it's not stress! I find that a lot of doctors say that when they don't know what the problem is and it's so unfair to the patient.
Her symptoms fits Lupus....some doctors will go by the butterfly rash alone if there isn't an indication in the blood. Plus a positive ANA.Or it could be her thyroid or both.Sometimes they go together....both auto immune. I've got discoid lupus but have friends with Systemic lupus and her symptoms fits.....
Wishing you both well

[TheLightSeeker]

Some observations.
1.No to parkinson's drugs!!!
In a healthy brain there's a balance between dopamine and acetylcholine.
In parkinson's dopamine producing neurons die so the dopamine levels are lower, but acetycholine levels are healthy.
The use of antichocholinergic drugs reduce the action of the acetylcholine
in parkinson's in order to balance it out with the low dopamine. Initially it may relieve the symptoms, however, because of 2 neurotransmitters being deficient, parkinson's progression gets  accelerated in the long term.
L-DOPA is efficient 5-10% and the remainder L-DOPA that cannot cross the BBB (Blood-Brain Barrier) is processed elsewhere in the body, causing
havoc.
Dopamine agonists, have limited success in symptom improvement with known but lesser side effects than the previous meds mentioned.
MAO-B inhibitors have not been proven for advanced parkinson's, but their efficiency in early stages must be assessed against the more adverse effects they may present.
Very questionable treatments.
2. She may have a yeast imbalance, which would explain the oral thrush and some other symptoms.
You can search for Candida Saliva Test on YouTube, which takes only minutes to do and it will indicate whether or not she has this.
3. If positive the next step is to rule out Leaky gut syndrome, which often starts with Candida.
Leaky gut syndrome promotes food allergies and nutritional deficiencies. Malabsorbed food particles can trigger serious reactions that can cause kidney or other damage. She may do a simple urine test for this:The mannitol and lactulose test.
4. She needs to have a nutritional panel and a mineral tissue analysis to rule out deficiencies.
Ferritin levels, Vitamin D3, B12, Magnesium, Selenium, Iodine, Zinc
are all important for Thyroid function.
Please do not go by serum hormone levels, as these do not represent
cellular function. Anyone could have thyroid hormones in the blood,
but if they don't make it to the cells,  cellular energy production is compromised.
Called Hypothyroid 2 or Exo-endocrine hypothyroid.
Low cortisol will affect thyroid function. I would suggest you ask her treating doctor for a small dose cortisol as treatment challenge, to see if her thyroid status will improve.
Many of her symptoms are typical hypothyroid!
She can do a simple test for thyroid function: Dr. Barnes Basal Temperature Test, almost 100% accurate, except when the patient has an infection, which brings the temperature up. Please look it up and have her do it exactly as per instructions. It is very simple to do.

Your suspicions are the next progression from hypothyroid, when it is not resolved and there is organ involvement.

Simple pill administration unfortunately is hardly reflective of any  determination to rule out any suspicion at all.
These are complex conditions that do not resolve easily.

Please pm me for details and suggestions for treatment.

This is not intended as a substitute for medical advice.

Best wishes.
Love & Light
Niko

[TheLightSeeker]

Hi Sarah and welcome to the forum

I will reply later as I'm in the middle of other things right now.

But I have a couple ideas.

Love & Light
Niko