How to I go about getting help for an undiagnosed illness ?

[dbroughton79]

After 12 months and numerous doctors appointments with numerous specialists (Infectious disease/neurology/cardiology/ENT) I am still no closer to getting help with an diagnosed illness. At this point I am very frustrated, feeling alone and trapped in my own body.

Symptoms:

1.Drenching Night Sweats
2.Heat/Cold Sensitivity
3.Blood In Semen
4.Decreased Appetite
5.Urological [small white pieces floating in urine]
6.Heart fluttering
7.Headaches
8.Shortness of Breath
9.Cough
10.Heartburn
11.Intermittent sore throat
12.Vision issues
13.Feeling fuller quicker
14.Spots all over body more in feet & ankles (petechiae)
15.Swollen Feet
16.Lymph node pain - Varies lymph node to lymph node
17.Collarbone tender
18.Joint Pain
19.Extreme Fatigue
20.Lower back pain
21.Difficulty swallowing (feels like a lump around Adams apple)
22.Heavy Arms/Legs
23.Difficulty walking
24.Balance
25.Nagging pain in right side abdomen (progressively worsening)
26.Mental Health Issues (Depression/Cognitive)
27.Intermittent insomnia
28.Mild pain in left side abdomen

[soaking]

I have now been suffering with severe sweats day and night,swollen feet ,legs burning,itching all over ,headahaches,tingling in arm and leg plus falling,i had a endoscopy last week came back 5 abnormalties,,i don't know what they are as not been told .. i'm not on the change as i been through it ,so that as been ruled out by a gnacologist,im going too rs today too ask to be refered to see a dermatologist to see if they can find out why...

[soaking]

Seen a dermatologist yesterday the severe sweats are secondary hh ,,,, nothing can be done because of my other health issues as it's to risky .

[backhurtz]

Have you consulted with a GI , internal medicine , and urologist? It seems you may have several things going on, each requiring either a really good primary or individual specialists in each field.

[Red_Star]

Sorry for the double up. Medhelp issues! I found wikipedia's article on gastroparesis and other symptoms were mentioned including night sweats and palpitations. My only two notable symptoms of gastroparesis were feeling full in one bite and bloating. I always have a poor appetite anyway and have issues with weakness from another condition.

[Red_Star]

I had a very long list of symptoms that by far exceed your list. The thing is I had multiple conditions causing my issues which confused matters. One by one I diagnosed them (because no doctor ever could!). Your symptoms may be due to just one condition however.

You mention feeling fuller quicker. That is a symptom of gastroparesis aka stomach paralysis. In my case that symptom was due to hypothyroidism - Hashimoto's thyroiditis.  I was full after one bite!  Info below from Mayo Clinic..

"Signs and symptoms of gastroparesis include:

Vomiting
Nausea
A feeling of fullness after eating just a few bites
Vomiting undigested food eaten a few hours earlier
Acid reflux
Abdominal bloating
Abdominal pain
Changes in blood sugar levels
Lack of appetite
Weight loss and malnutrition

Many people with gastroparesis don't have any noticeable signs and symptoms."


"Factors that can increase your risk of gastroparesis:

Diabetes
Abdominal or esophageal surgery
Infection, usually a virus
Certain medications that slow the rate of stomach emptying, such as narcotic pain medications
Scleroderma (a connective tissue disease)
Nervous system diseases, such as Parkinson's disease or multiple sclerosis
Hypothyroidism (low thyroid)"

[Red_Star]

I had a very long list of symptoms that by far exceed your list. The thing is I had multiple conditions causing my issues which confused matters. One by one I diagnosed them (because no doctor ever could!). Your symptoms may be due to just one condition however.

You mention feeling fuller quicker. That is a symptom of gastroparesis aka stomach paralysis. In my case that symptom was due to hypothyroidism - Hashimoto's thyroiditis.  I was full after one bite!  Info below from Mayo Clinic..

"Signs and symptoms of gastroparesis include:

Vomiting
Nausea
A feeling of fullness after eating just a few bites
Vomiting undigested food eaten a few hours earlier
Acid reflux
Abdominal bloating
Abdominal pain
Changes in blood sugar levels
Lack of appetite
Weight loss and malnutrition

Many people with gastroparesis don't have any noticeable signs and symptoms."


"Factors that can increase your risk of gastroparesis:

Diabetes
Abdominal or esophageal surgery
Infection, usually a virus
Certain medications that slow the rate of stomach emptying, such as narcotic pain medications
Scleroderma (a connective tissue disease)
Nervous system diseases, such as Parkinson's disease or multiple sclerosis
Hypothyroidism (low thyroid)"