Undiagnosed insane symptoms

Hi my friend! I am right there with you unfortunately. I will tell you about the diseases I have and their symptoms and all and maybe it will trigger you as to something that sounds like what you could be dealing with so if anything I have mentioned matches how you are feeling too you can report that to the ER etc. I, too, do not give medical advice but just wanted you to know you are not alone as far as feeling not well and that maybe something I say will trigger you on a symptom you have of some sort. I am in no way a doctor though--just a patient suffering along too, ok?

First, I have Sjogrens Syndrome. The two main symptoms for it are extreme dry eyes and dry mouth--I have lost nearly all of my teeth in the past year alone because of it and am going to have to resort to dentures as a result. The symptoms for it include: Swollen glands, specifically behind the jaw and in front of the ears; joint pain, swelling or stiffness; prolonged dry skin; skin rashes; chronic dry cough; vaginal dryness; problems urinating, including pain, urinating more than usual, getting up at night often to urinate and needing to urinate suddenly; numbness or tingling in your fingers and toes; prolonged fatigue and/or a feeling of tiredness that keeps you from daily activities

Second, I have Addison's Disease (also sometimes referred to as Adrenal Insufficiency Disease). I have to take hydrocortisone every day, twice a day or I could die from this disease. The hydrocortisone replenishes the lacking hormones my body does not make enough of. The symptoms of Addisons Disease include the following:
Extreme tiredness, also called fatigue; Dizziness or fainting when standing after sitting or lying down--this is due to a type of low blood pressure called postural hypotension; sweating due to low blood sugar, also called hypoglycemia; upset stomach; diarrhea or vomiting; pain in the abdomen; muscle cramps, weakness, widespread pain or joint pain;
Other early symptoms can cause changes in how you look, such as:
Body hair loss; areas of darkened skin, especially on scars and moles--these changes may be harder to see on black or brown skin; weight loss due to less hunger
Early Addison's disease symptoms also can affect emotions, mental health and desires. These symptoms include:
Depression; irritable mood; lower sex drive in women; salt craving
The worst thing thing that can happen as a result of having Addisons is to experience an "Adrenal Crisis".
What it is:
An Addisonian crisis is a sudden and severe drop in cortisol levels, the primary hormone produced by the adrenal glands.
Causes:
Addison's disease: A chronic condition where the adrenal glands don't produce enough cortisol and aldosterone.
Severe stress: Illness, surgery, injury, or other stressful events can trigger a crisis in individuals with Addison's disease or those who are steroid-dependent.
Inadequate treatment: Failing to take prescribed steroid medications or stopping them abruptly can lead to a crisis.
Symptoms:
Symptoms can include extreme weakness, dizziness, nausea, vomiting, abdominal pain, low blood pressure, confusion, and loss of consciousness.
Treatment:
An Addisonian crisis is a medical emergency that requires immediate treatment with hydrocortisone injections.
Importance of Recognition:
Prompt recognition and treatment are crucial to prevent life-threatening complications, such as shock and coma.

Third, I have Psoriatic Arthritis. I had never had psoriasis before I was diagnosed with this disease and then wham! I received this diagnosis. It is very painful in your joints, my feet and legs and arms and hands constantly are swollen, weak and in pain. The symptoms for this disease is:
Pain, swelling, or stiffness in 1 or more joints; morning joint stiffness (joint pain that is worse in the morning or after inactivity); joints that are red, discolored, or warm to the touch; frequent joint tenderness or stiffness; dactylitis (sausage-like swelling in 1 or more of the fingers or toes); pain in and around the feet and ankles; changes to the nails, such as pitting or separation from the nail bed; pain in the lower back, above the tailbone; fatigue.


Fourth, I have NASH - Non-Alcoholic Steatohepatitis. This is actually the more advanced, severe form of Fatty Liver Disease and the people who get it do not and have never been big drinkers of alcohol. It has always been referred to as NASH but has recently changed its name to MASH--Metabolic Dysfunction Associated-Steatohepatitis. Its symptoms include as follows:
fatigue: a general feeling of tiredness or weakness;
abdominal pain: discomfort or a mild ache in the upper right abdomen (where the liver is located); weight loss: unexplained or unintentional weight loss; loss of appetite: decreased desire to eat; jaundice: yellowing of the skin and eyes, indicating impaired liver function; fluid retention: swelling in the legs, ankles, or abdomen due to fluid buildup; easy bruising: increased tendency to bruise easily, which can be a sign of advanced liver damage; itchy skin: pruritus, especially on the palms or soles, can be a sign of liver dysfunction; swelling: abdominal swelling (ascites) or swelling in the legs and ankles; spider-like blood vessels: visible spider-like blood vessels on the skin, often around the belly button.


And finally, I have a great deal of chronic pain issues and much of it has to do with my back and a former spinal fusion surgery I had on my L4/L5 in 2012. The surgery was a disaster and the surgeon was horrible. Ever since then I have been in Pain Management to try and deal with the severe pain in my back and legs and arms etc. It has recently gotten so bad that my PC did some lumbar xrays to see what she could tell from those scans. It came back that all, ALL of my hardware from my first surgery was broken and that my first surgeon did not use rods to hold the fusion--only screws etc. So I just saw a new neurosurgeon a week and a half ago and had 2 MRIs for him to see--one with contrast and one without. He said he would like to get a CT scan now to verify more with the fusion but that it did not appear on the MRI that the fusion even took and yes, it looks like all my hardware is actually broken. So it means another fusion surgery very soon. What I am writing about this is that he also diagnosed me with a spinal disease that made me think of you when you were describing some of your symptoms. I didn't know if you had ever had any of these back feelings or issues as what I describe next: He diagnosed me with chronic adhesive arachnoiditis. The arachnoid is the middle layer that surrounds the spine and protects it. It is messed up. In addition to this part of my spine, my nerve root is also messed up. Nerve roots act as the initial point where spinal nerves branch out from the spinal cord, carrying signals between the brain and the rest of the body. Chronic adhesive arachnoiditis, my condition, is a condition where persistent inflammation of the arachnoid mater (one of the membranes surrounding the brain and spinal cord) leads to scar tissue formation and adhesions, causing the spinal nerves to stick together. This can result in nerve compression and various neurological symptoms. It is one of the most progressive and severe forms of arachnoiditis. Finally, these are the symptoms of this condition:
pain: chronic, persistent pain in the lower back or legs, often described as burning, stinging, or shooting, which may worsen with activity; numbness and tingling: sensations of numbness, tingling, or a crawling sensation on the skin, particularly in the lower extremities; weakness: muscle weakness or partial paralysis in the legs;
muscle spasms and cramps: uncontrollable twitching, muscle spasms, and cramps; bladder and bowel dysfunction: problems with urination, including urgency, hesitancy, or incontinence, and constipation; other: headaches, difficulty sitting for long periods, and in severe cases, gait abnormalities.


I hope you get some answers soon. Whatever you do, don't give up and keep fighting! You have to fight for yourself because you matter!!! Take care.

That sounds incredibly overwhelming, and I’m really sorry you’re going through this without proper medical support. It’s completely unfair that insurance decisions can block access to the care you need—especially when you've already been dealing with this for so long.

I’ve dealt with insurance denying legitimate care too (on a much smaller scale), and one thing that helped me was using a free tool called Counterforce Health. It’s designed to help people appeal denied claims or figure out how to fight for coverage. It might help you navigate the system and push for care again—especially if you’re trying to get an MRI or revisit coverage options.

Also, you’re not alone in this—even though it absolutely feels like it. If you haven’t already, maybe try connecting with chronic illness or rare condition communities (like r/ChronicIllness or r/Undiagnosed on Reddit). Sometimes just having people believe you is the first kind of help that actually helps.

Hi ,
It sounds like you are truly living in a nightmarish reality...I am so very sorry that you are suffering, and without healthcare. It sounds as if you live in the US, based on your share about 'the heatwave situation.' If so, and you haven't yet checked on whether or not you qualify for Medicaid or reduced-cost coverage through the government (*Obamacare), I hope you will check into it at: https://www.healthcare.gov/
Also, please google Medicaid along with the name of your state to see if you qualify for free healthcare.
Unfortunately, although you are searching for help with a diagnosis, we moderators here on the forum aren't medical professionals...just other patients trying to help fellow patients in their healthcare journeys...We are known as 'Patient Leaders.' Still, even if we were medical providers, we would not be allowed to try to diagnosis over the internet.
MAYBE other patients on the forums here will recognize your symptoms & can try to direct you, but even then it seems imperative...necessary... that you find a medical provider quickly, to make sure you aren't in immediate danger, and to direct you properly to what experts to try to see for getting you on the road to a diagnosis, or at least to learn of what treatments might be available to help stabilize you.

I wish could be of further help, but I think this is all I have on my end...

Please be careful over the rest of the weekend, and get to an ER if need be. As fatigued as you sound, please make sure to make as many calls as you can on Monday morning to try to get health insurance coverage. Oh...another thought...I would also think you might be able to call to a local hospital also, to see if they offer compassionate care. I know there is a hospital system here in the southern California area that does that for those in need.

Hugs,
Gina Miller,
Team Member

One additional information
Arms and legs will go Completely numb if heat isn't directly on me at night.