Hi everyone,

Not even sure that this is the right place to post my health issue, as I have so many symptoms, and only some are neuro. But I'm fairly desperate these days and I guess I am just hoping for a miracle, maybe someone will see something that will help as I seek to find out what is wrong with me.

I have ben chronically ill for some time (about 12 years) It al started during a particularly stressful time in my life. I came down with what doctors were calling a prostate infection. They put me on antibiotics and then I got really sick and ever since I have never really recovered. My bowel went out of sorts, became easily fatigued, brain fog and anxiety, lactose intolerant, just to name a few.

Years past and I thought maybe it was a candida issue. Treated with diet and probiotics and things got worse, but then slowly improved some. About a year and a half ago, however, my condition degraded again, and here I am typing this at 6 am, having been up al night (again) so out of it that it is taking every effort to manage to type this out.

I have seen numerous doctors with little resolution and no firm diagnosis. I did test pos for the IgenX Lymes test but neg on one of the other Lymes tests. I have had the candida blood antigen draw (IgG, IgM, IgA) and the numbers are very high (save IgM which is in range). I have had many other tests don over the past 6 months, lots of unusual results, from elevated bilirubin to high 24 hour sodium output to low compliment proteins (C2,C3,C4 all low) and cortisol profile is askew. Low cortisol in morning and high at night. An MRI revealed partial empty sella, but they said in the hospital that the pituitary is okay. Not sure how they made that determination, however.

My symptoms these days are: pain and distention in lower abdomen, brain fog and oppressive anxiety, insomnia and nightmares, frequent urination (have peed 30 times in the past 5 hours). visual disturbances; sometimes I see spots,sometime lines and sometimes vision gets distorted. Have Low BP (100/60) low body temp (96-97.5). 94 in the morning. Have lost about 35 LBS over the past few months. Weakness and fatigue (too weak to even walk around the block, mostly bedridden). Dry skin, don't seem to really sweat anymore. Have light sensitivity and some night blindness. When really bad I get very shaky but and disorientated, usually also start urinating more too around these times. It's not standard panic attack as pulse remains normal, bp stays low and no sweating or racing heart associated with such events.

Anyway, I figured I'd post here and see if anyone might see something that I can look at to try and figure this out. Have been at it for a while and am very frustrated and quite frankly, losing hope. I have not been able to work for over a year now and am running out of resources. Just don't know where to turn for help. Sorry to drop all this on you at once. But if anyone should have any thoughts on the matter I would be greatly appreciative, more than you know in fact. thank you!

Welcome to NeuroTalk:

One of our members at PN forum may be able to respond to you.
I'll send her a message.

Hi and Welcome to Neurotalk.

I don't know how much I can help, but your symptoms certainly sound familiar in some ways.

First let me ask a few questions:

What are the doctors saying at this point...or is candida the only diagnosis?

Please give some background in regards to other testing and current medications.

Have you been worked up for autoimmune disease or diabetes insipidus?

Do these episodes occur daily, hourly or just come in waves here & there without a schedule?

Tell me more about the frequent urination. Is the urine overly dilute? Are you drinking large amounts of water? Have you been getting dehydrated from all the urination (urine turns dark)?

The first thing to jump out at me is the frequent urination. Has your blood sugar been checked during these episodes? Diabetes causes frequent urination (hence the origin of the word). However, there is also diabetes insipidus (not related to sugar diabetes) which also causes frequent urination. It can be associated (most commonly) with pituitary issues and the lack of ADH (anti-diuretic hormone).

Your cortisol level is strange (backward). I would assume they did an MRI with a pituitary protocol to properly look for an adenoma as well. I don't know much about the partially empty sella, but certainly they would have checked pituitary function via blood tests to make sure you are producing proper levels of hormones for various things.

There is also the low BP and other symptoms that are of concern. Are you weak when you stand up? Have you checked your BP upon standing to see if it drops? You may have some autonomic dysfunction going on. Neurogenic bladder (which can also cause frequent urination) can occur with autonomic neuropathy as can the low BP, visual disturbances, temperature deregulation, and other symptoms.

There are several conditions that cause the variety of symptoms you list. Autoimmune conditions like Sjogren's can cause dry mouth, eyes, lack of sweating, fatigue, AND can include neuro complications like autonomic dysfunction (and related symptoms I mentioned above).

The diabetes insipidus can throw off all kinds of labs due to the electrolyte changes after urinating excessively.

Honestly, you should be worked up for both of these if you haven't already.

Is there anything that preceded these episodes...another illness, trauma/injury, medication? What was the antibiotic you mentioned? Was this from 12 years ago when things began or something more recent?

The more info you provide, the better.

MaxiTee,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Thank you Darlene!

I appreciate the support. Am having a particularly bad day today so this really helps.

-Tom

Thank you for getting back to me. I will try and provide more info as soon as I can. Really ot of it today, have been up most of the night again and very disorientated right now.

Thank you!!!
-Tom

Thank you en bloc,

I will try and provide more info as soon as I am able. Really struggling today, don't have the energy to respond fully. But I really appreciate your help. Right now the doctors don't know exactly what is gong on. One guy says candida, another adrenal fatigue. Mostly they have all given up, and push me off to someone else. Guess I don't blame them for giving up, everybody has, except my dogs.

-Tom