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johnwes5819
@johnwes5819

Posts: 5
Joined: Dec 12, 2018

It's been a year and a half, still undiagnosed. Need some help.

Posted by @johnwes5819, Dec 13, 2018

* **Any existing relevant medical issues:** Anxiety, Depression, Vasovagal Syncope, Parenchymal Liver Disease, Micturition Syncope, Mild COPD, IBS.
* **Symptoms:** Hypogastric cramps, memory loss, fatigue, sharp random jolts pain in colon, tachycardia, yellow stool, constipation, diarrhea, sore neck, lower back pain, Terry's nails (hands and feet), cold hands and feet, drop in oral temperature (as low as 93.3), sensitivity to heat and cold temperature, constant dizziness, and cognitive function is declining. Every morning I wake up, my eyes feel like they do after you've been in a chlorinated pool.

* **Current medications:** Vitamin D3 50,000 IU

**Summary:** I'm one of those undiagnosed people floating around after seeing numerous doctors, trying numerous medications and treatments and even multiple diets with no luck.

**Backstory:** I've always been told I just have anxiety and IBS because that's how most of my life has been. Random hypogastric cramping due to not being able to have a bowel movement. Usually, it was constipation, followed by diarrhea. Like a cork in a wine bottle. If I couldn't get the cork out, to get the wine out, I would faint. Keep in mind this was not due to straining to have a bowel movement, this is due to the hypogastric cramping pain. If I'm laying in bed and the pain goes on long enough, I will faint in the bed.

*I'll try to keep the story brief.*

**My Story:** 2 years ago I was at the gym doing the leg press. I felt a sharp pain in the colon area, left the machine and didn't think anything of it. I woke up in the middle of the night to urinate. After urinating (and standing) I fainted (Micturition Syncope).

**Heart:** After that day, my health went downhill. While sitting, my heart rate would go as high as 160 bpm. An electrophysiologist examined my 30-day halter monitor report and said the spikes didn't seem to be like anxiety and he's not exactly sure what is causing the spikes. I mentioned pheochromocytoma, and catecholamines were checked but they were normal. No tumor on my adrenals.

**Kidney:** Last week I had my first kidney stone and this week I go to the Urologist. I will take him my stone for further testing.

**Liver:** I told my doctor I had yellow stools, constipation, and Terry's nails. He said "but your hepatic tests were fine and you're not jaundice? You don't do drugs or drink, so why would you have liver issues?" I pushed for an ultrasound and the report came back as "Heterogenous known uniform echo pattern liver seen and findings suggest liver parenchymal disease, further testing is needed"

**Gastro:** I had a colonoscopy done and a benign polyp was removed in my colon. There were also signs of inflammation in the large intestine. IBS was diagnosed. No parasites found in stools.

**Thyroid:** My hormones including testosterone, progesterone, estriol, and thyroid results were all in the normal range. Including the T3 Free and Reverse T3. However, none of my thyroid results are in the recommended ***optimal ranges*** according to top Endocrinologists, but they are in the reference range in my local area. My hands and feet are always cold and that never used to happen until this past year. I was also told that I'm not anemic. During my drop in temperature, I've tested my blood sugar at home and that has always been in normal range. A1c test was also normal.

**Brain:** My cognitive functions are getting worse due to the brain fog, dizziness, and stress on my overall body. An MRI was done but no abnormalities were seen.

**Mental Health:** I was told I have panic disorder when this all started. I was prescribed 5 anti-depressants over a 6 month period to which none of them helped. The last medication I tried was Zoloft caused a serious pain. It felt like my brain was literally on fire. Excruciating to say the least. A week after stopping that medication, I started having depression, which I never had before.

**Sleep:** I sleep 6-8 hours a night but I never feel rested. Just constant fatigue. Sometimes I wake up due to colon pressure, causing sweating and dizziness, and adrenal surges but it's random. But what is consistent is I wake up and my tongue is as dry as a cactus, which indicates I breathe through my mouth when I sleep.

**Abnormal tests from the last year of testing.**

*Vitamin D and Vitamin B1 were low. (Blood)*

*Vitamin B6 was 3x higher than the high range. (not sure why considering I wasn't taking loads of B6) (Blood)*

*Coproporphyrin i and iii were slightly elevated (Urine)*

**Amino Acids:** *Cystathionine was elevated (Urine)*

**Fatty Acid Profile:** *Decenoic acid (High), Vaccenic Acid and Arachidic Acid (Low)*

**Organic Acid Panel:** *Lactic, GLycolic, 3-Hydroxypropionic, 2-Hydroxyisovaleric, 3-Hdroxyisovaleric, Methylsuccinic, Uracil, Glutaric, 3-Methylglutaconic, Malic, 3-Hydroxyadipic, 5-Oxoproline, Citric, and VMA (All Low)*

**Conclusion:** I've been to numerous doctors as you can tell and there hasn't been any direction. Only Mild COPD (due to years of cigarettes but no longer) and Parenchymal Liver Disease. I don't drink or do drugs so I believe whatever is happening to me and stressing my liver is either (A) all vagus /colon related or (B) I have a metabolic disorder or systemic disease of some kind. It's really the only thing that makes any sense to me but I'm not a doctor.

I've been told I'm a complex case and I agree.. I am. Most of my doctors are starting to see that it's not "all in my head" though but connecting the dots is the hardest part and that's why I'm putting this out there.

Thank you for taking the time to read this, I appreciate it 🙂

REPLY

Just curious, have you been to a Lyme Literate MD? I was dx with fibro and have many of your symptoms. With my LLMD, I was dx severe mold toxicity, lyme and a few other things. While still working on it, and work is difficult, I can now have a good few hrs. I also recommend joining Doug Kauffman on his FB page called Know The Cause.
Peace.

Hello @johnwes5819, welcome to Mayo Clinic Connect. I’m sorry to hear you are having a difficult time getting a diagnosis. Connect is a good place to share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. There is currently another discussion for undiagnosed autoimmune diseases that may be helpful to read through here:

Groups > Autoimmune Diseases > Undiagnosed auto immune disease
https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/

I'm tagging our moderator @kanaazpereira to see if we should move your post to the above discussion so that you can meet other members with similar health symptoms and your post will have more visibility.

It sounds like you have seen quite a few doctors in trying to get a diagnosis. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

John

@johnbishop

Hello @johnwes5819, welcome to Mayo Clinic Connect. I’m sorry to hear you are having a difficult time getting a diagnosis. Connect is a good place to share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. There is currently another discussion for undiagnosed autoimmune diseases that may be helpful to read through here:

Groups > Autoimmune Diseases > Undiagnosed auto immune disease
https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/

I'm tagging our moderator @kanaazpereira to see if we should move your post to the above discussion so that you can meet other members with similar health symptoms and your post will have more visibility.

It sounds like you have seen quite a few doctors in trying to get a diagnosis. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

John

Jump to this post

John, I think your concern and helpfulness to all of us is wonderful and I thank you so very, very much. When I click on the link for for undiagnosed autoimmune diseases, it says there isn't such a link. Could you please help me? Thanks again for everything! Rose

@geegie

John, I think your concern and helpfulness to all of us is wonderful and I thank you so very, very much. When I click on the link for for undiagnosed autoimmune diseases, it says there isn't such a link. Could you please help me? Thanks again for everything! Rose

Jump to this post

Hi Rose @geegie, sorry for the bad link. I updated the link in the post. Here's the correct link to the discussion.

https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/

Thanks a bunch, John! Rose

@kellye5

Just curious, have you been to a Lyme Literate MD? I was dx with fibro and have many of your symptoms. With my LLMD, I was dx severe mold toxicity, lyme and a few other things. While still working on it, and work is difficult, I can now have a good few hrs. I also recommend joining Doug Kauffman on his FB page called Know The Cause.
Peace.

Jump to this post

Thank you so much for responding. Glad to hear you were accurately diagnosed. I was tested for Lyme but it was only the western blot test. I know there's more accurate testing available. Yes finding a thorough doctor has been difficult.

Hi, I'm Mish and I just found this link today while for the millionth time I again search for information concerning my Fibromyalgia diagnosis. It's funny, but I had no trouble obtaining a fibro diagnosis 8 years ago, but the treatment angle has been much tougher. I live in Alaska, and although providers here are sympathetic, the across-the-board belief in drug therapy is rampant. I am not drug seeking, but overall body pain, no sleep, headaches (migraine), back & shoulder pain, hand pain, depression, and hopelessness are wearing me down. I don't respond well to medications, so aside from a healthy lifestyle, what are my options? It is just a thought, but perhaps a visit to a provider outside of my state might help me really zero in on my complete health situation. I appreciate any ideas.

181116_115458_1

How nice that you posted a photo. It looks like SD when we have snow although I'm told Alaska is very beautiful.
I am sorry that you have had to endure pain with no relief in sight, and it does feel like an arduous journey when you're dragging yourself through days (and nights too) with pain that is sometimes intermittent, and other times constant and nagging. While I don't live in Alaska, and my residence is instead in SD, like you, I felt like I couldn't find a doctor to help me find some relief for restless legs. I know I said this in an earlier post that lack of sleep makes my fibro worse, so I eventually sent a request for an appointment to Mayo in Minneapolis. I have decided through the years: after caring for my mother after she received a terminal diagnosis for a slow-growing cancer, and my own experiences with feeling I couldn't find a doctor who would be a partner in my health care decisions. My mom's care needed interventions from me with local doctors when she became too ill to advocate for herself with various doctors here in SD. The same was true with my restless legs diagnosis, and after a neurologist in our area wanted me to continue to take Requip in ever-increasing doses despite the fact that it made me so dizzy, sick, and headachy. I believe we inherently know our own bodies, and we can sense on a certain level when a treatment isn't right – especially if and when some drugs have negative side effects. So, YES do seek care outside of your immediate area. Are there people you know who have done so as well . . . . sometimes the best way to decide which doctor(s) or facilities to start with is word of mouth from others. I also know that when in pain, it is difficult to get started on such a process of reaching out because we are exhausted, and the effort seems like climbing a HUGE mountain. Trust me, finding the right doctor will give you great peace of mind; I also believe our mind and body are so closely related that so when you feel you are in good hands, you will experience healing on a certain level too

I wrote a statement that dependent on your age. Deal with the fact that doctors have no clue. I did make a statement about Chem trails. Call me crazy but check it out. I have given up on doctors. When marijuana is legal, i will use the oils.i have blood work showing RA. Do you think they know how to treat it NO…over a year with univrrsity of Texas. I am done with specialists. I am 77 and am ready anytime God wants to take me home.

@mish

Hi, I'm Mish and I just found this link today while for the millionth time I again search for information concerning my Fibromyalgia diagnosis. It's funny, but I had no trouble obtaining a fibro diagnosis 8 years ago, but the treatment angle has been much tougher. I live in Alaska, and although providers here are sympathetic, the across-the-board belief in drug therapy is rampant. I am not drug seeking, but overall body pain, no sleep, headaches (migraine), back & shoulder pain, hand pain, depression, and hopelessness are wearing me down. I don't respond well to medications, so aside from a healthy lifestyle, what are my options? It is just a thought, but perhaps a visit to a provider outside of my state might help me really zero in on my complete health situation. I appreciate any ideas.

Jump to this post

@@mish what a beautiful picture is this from your porch?love the Mt,s I,ve had fibromyalgia since the 90,s Ive had all the known fibro meds none worked very well but I found a product ,all natural ,that works for me.It,s Fibro -Malic from Vitacost.com Ive been on it for years and out side of a flare up I can manage the discomfort at times but I also have O.A all through me and Dr gave me Meloxicam I take when I needed. Some other things that help Ice it,s a anti inflammatory ,Tens unit ,hot shower,Epsom Salt soak hope some of this is helpful to you

@mish

Hi, I'm Mish and I just found this link today while for the millionth time I again search for information concerning my Fibromyalgia diagnosis. It's funny, but I had no trouble obtaining a fibro diagnosis 8 years ago, but the treatment angle has been much tougher. I live in Alaska, and although providers here are sympathetic, the across-the-board belief in drug therapy is rampant. I am not drug seeking, but overall body pain, no sleep, headaches (migraine), back & shoulder pain, hand pain, depression, and hopelessness are wearing me down. I don't respond well to medications, so aside from a healthy lifestyle, what are my options? It is just a thought, but perhaps a visit to a provider outside of my state might help me really zero in on my complete health situation. I appreciate any ideas.

Jump to this post

Hello @mish, welcome to Mayo Clinic Connect. Thanks for sharing the beautiful photo…love Alaska. I have made two trips there and loved them both. One to Nome to volunteer at the KICY radio station and the other was a bucket list inland passage cruise, bus trip to Anchorage and a train to Fairbanks. I'm hoping to repeat that one someday. From visiting Nome and talking with some residents I understand the remoteness of getting treatments. I'm hoping you find some answers here and members can help with that by sharing what works with them.

There is another discussion which you might find helpful here:

Groups > Chronic Pain > Drug Help for Fibromyalgia and Related Disorders
https://connect.mayoclinic.org/discussion/drug-help-for-fibromyalgia-and-related-disorders/

You mentioned you don't respond well to medications. Have you ever done a genetics study? I recently did the Mayo Clinic GeneGuide and was impressed with how it's done and how they walk you through the test results.

https://www.mayoclinic.org/mayoclinic-geneguide

John

Liked by lioness

@johnbishop I'm certainly not a Debbie Downer, but everyday I'm struggling and was excited to see if there were any replies to my post. There's been 6 or 7 comments that actually don't pertain to my post at all. I've read lots of other peoples posts where they get lots of replies. However mine has 10 comments and only 2 pertain to me. Only your welcome message and the first comment. I don't know if it's the frustration of me being miserable everyday but I would assume someone's post shouldn't be a social section for others. Maybe I'm wrong. Just wish I had more advice on here. 😕

@johnwes5819, I understand the frustration with no answers. This sometimes happens when someone new starts a new discussion when there are two or three existing ones that are similar. That's the reason I wanted to move your post/discussion to the following one where you would have more visibility to other members with similar health conditions and hopefully get some suggestions.

Groups > Autoimmune Diseases > Undiagnosed auto immune disease
https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/

Have you thought about getting a second opinion or seeing a specialist? …or maybe you already have seen one? Mayo Clinic is great at diagnosing these kinds of health conditions which is why I mentioned it when I welcomed you to Connect. I would prioritize your biggest or worst symptom and post a question in the discussion link above.

John

Liked by lioness

John, Mish here again. Your Geneguide info sounds intriguing to me! I'm one of those people that cannot tolerate many medications, alcohol, or anesthesia. Needless to say, pain relief is hard to come by. As you stated, insight from others like me could educate me on methods that work for them I have not heard of or considered. Ditto on your affection for AK despite some inconveniences, it's like no other place. Thanks, Mish

Lioness, I believe at times I would give up were it not for last relief measures like ice, heat, and my Epsom salt, baking soda and lavender hot bath soak! I also take long daily walks at the picture location on the JBER military base. That area feels like my home, and although it is on a military reservation, I have seen more bears there than people in the last 20 years. I am going to investigate the Meloxicam and Fibro Malic as I feel compelled to for relief. Let's all pray for more pain free days.

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