Undiagnosed and don’t know where to go next

Posted by beanie300 @beanie300, Nov 7, 2018

I am posting here in hopes that someone out there has experienced something similar or can at least tell me where to turn next when it comes to figuring out my illness. A friend of mine who has lupus said it sounded like it could be autoimmune but I really don’t know anymore!

The following chunk is going to be a long medical history and I apologize, I just want to give as much information as possible in hopes of getting help.

I was born premature but had amazing algae scores and was sent home that day. My mother tells me I was always sick as a baby with chronic throat infections of some kind or other. She made the doctors remove my tonsils before I was 2 in hopes that it would help but it didn’t seem to. Growing up I remember always being sick. I seemed to get every bug going around but was always especially susceptible to strep throat infections and sinus infections. I was sick so much that by highschool I am pretty sure I only was actually able to attend around 2/3 of the total days in the school year. Maybe even less than that and this wasn’t me staying home with colds, this was constant stomach flu, upset respritory infections, and of course strep throat. I also had constant hives and dermatographia since I was young and still have it to this day! The doctors always wrote it off, saying it was probably a food allergy, but never really looked into it. I also never ran fevers as a kid and instead run at a constant 97.6.

In 2016 my constant bad health seemed to take a turn for the worst. Right after graduating highschool I got so sick I was bedridden for the whole summer. I was throwing up, having joint pain, and sleeping all the time. No fever but I NEVER run fevers. After a month of it my mother took me in to my family doctor. She ran a mono test and Lyme test which both came back negative but she was sure it was mono so she told me to come back in a few weeks. I did but the test was negative again, and then again when I came in another month later. My white counts were high but they couldn’t figure out what was wrong other than that. Finally after 4 months I got better and stopped going back to the doctor, just in time for me to go to my freshmen year of college.

I made it through my first semester, despite the fact I got stomach flu and strep a few times but then part way through my second semester I got sick again. I was throwing up to the point I had to be hospitalized for fluids. All of my lymph nodes were so swollen I didn’t even look like I had a neck and was having a hard time swallowing. This time it turned out I actually did have mono. I had to leave my college and go home to recover. It took a total of about 4 months to get better but I never felt 100% again after that. My doctor told me it could take up to a year to feel fully better so I decided to take time off of college and get a job.

The job lasted about three months. I was so tired in that time that I would get up to go to work, struggle through my shift, go home, and immediately go to sleep. I was only awake about 10 hours a day but I figured it was just because I wasn’t used to working and would adjust. Then I started developing severe joint pain and stiffness, to the point that it was hard to get up off the couch simply because I couldn’t unbend. Both of my parents have rheumatoid arthritis so I assumed it was that and went in to my doctor for testing. I was only 20 and knew I shouldn’t be feeling as old as I suddenly felt. She ran an ANA that came back normal. A week later I passed out in the shower. My parents and I assumed maybe the water had been to hit and left it at that. Another week later I passed out at work. The fainting episodes became a normal part of my life which led to me quitting my job.

I went to see my primary physician again but she was clueless. She ran a complete blood count, metobolic panel, and tested me for Addison’s disease. It all came back fine aside from a slightly elevated white blood count. She then referred me to doctor number 2, an internist.

Doctor number 2 was probably the best I had ever seen. Listened to my story then tested me for dermatographia before I had even mentioned the hives or dermatographia. He sent me to an allergist.

Doctor number 3, the allergist. I explained the dermatographia and the fact that I had it, along with hives, since I was a kid. We had never been able to link the hives to any food and explained that sometimes I would break out in hives because of the heat or because of crying or getting stressed. He told me he couldn’t test me with the scratch test because I had dermatographia but that he could test my blood for allergies. He told me he didn’t think this would be helpful however because the would only be able to test for a few things and he said my hives sounded idiopathic. I went home without the test.

I followed up with my internist, doctor number 2, but while the nurse was taking my vitals she found I had a heart murmur. I was sent for an ultrasound of my heart and they found I had a mitral valve prolapse but told me it was nothing to be concerned about. I went back in later for the follow up and the nurse took my vitals and found I had a heart arythmia. They gave me a 24 hour heart monitor. I only actually ended up wearing the monitor for 20 hours because the sticky pad things they used caused my skin to blister up and peel off.

The cardiologist I saw, doctor number 4, told me my heart murmur was benign and then went on to suggest that maybe I was on too many medications due to the fact that I take an anti anxiety, and antidepressant.

Back to doctor number 2, my internist. He gave me two different anti-histamines and sent me home in hopes it would improve my symptoms.

All of my symptoms kept getting worse. I developed brain fog, trouble concentrating, headaches, and none of my previous symptoms improved. I turned to the internet in hopes of figuring out why I was fainting and read about postural orthostatic tachycardia syndrome or POTS for short. I went to my doctor that week and asked if he had ever heard of it. He told me he didn’t think that was what I had, as it was rare, and sent me home. My mother convinced me to go back and demand to be tested, and it turns out I do have POTS. On an average day, my heart rate laying is 55 and it jumps to 130 when I am standing.

Thankfully now that I know what is going on I was able to start managing symptoms and hoped it would help with everything from the fainting to fatigue, joint pain to brain fog.

I started developing new symptoms. My brain seems to scramble words when I read now or it messes up grammar. I have a persistent pain in my left side that doctors can’t explain. My rib cage in the front on my left side also goes through flair ups where it hurts when I breath and I have been developing migraines.

The fatigue got worse until I was only awake about 2-4 hours a day total and all of my lymph glands swelled up again. It felt like when I had mono so I went in to try and figure out what was going on. My internist sent me to doctor number 5, an infectious disease specialist, who told me I had a mono reactivation. At this point it had been exactly a year since I left college with my first bout of mono. He said it was really rare and he wanted to test my immune system. He ran a complete blood count, C-reactive protein test, t-cell test, and a few others. Everything came back normal.

My doctor said he had no idea why I got mono again and seems to have no idea what to do with my other symptoms! I want to ask for more tests but I don’t even know what tests to ask for anymore or what doctors to ask to see and I am afraid they are going to diagnose me as a hypochondriac!

Currently my symptoms are
– dermatographia
– hives (particularly when upset but often without obvious cause)
– migraines
– joint pain
– joint stiffness
– Nausea
– loss of appitite
– brain fog
– trouble concentrating
– extreme fatigue
– vomiting, sometimes without even feeling ill beforehand
– dizziness
– pain in my left side, about where my spleen is, but doctors say my spleen is not enlarged
– pain in my ribs sometimes when I breath that lasts a few hours
– no fevers ever.
-numbness and tingling in my hands and feet at times
– mouth ulcers. (I have had these since I was a kid. The come and go. I sort of get break outs of them)

Anyone have any ideas? Anything helps. I just want to go finish college and move on to my career but can’t do that while I am this sick! I am a 21 year old white female if that helps anything.

Liked by lucky1038

@fancyrph

Great post. Regarding stevia, It causes me severe hot flashes so I consider myself allergic. Did you ever use honey for a sweetener? Would that be a sugar you cut out?

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I didn't realize stevia could cause allergies. What are your symptoms. I use maybe 1/16 of a teaspoon in my morning plain yogurt. I cut out all sugar, even natural in fruit.

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@gardeningjunkie

I didn't realize stevia could cause allergies. What are your symptoms. I use maybe 1/16 of a teaspoon in my morning plain yogurt. I cut out all sugar, even natural in fruit.

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@gardenjunkie I dont use any surger or stevia ,sometimes I will in tea but haven't taken notice to allergies have d be more aware next time .

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@gardeningjunkie

I didn't realize stevia could cause allergies. What are your symptoms. I use maybe 1/16 of a teaspoon in my morning plain yogurt. I cut out all sugar, even natural in fruit.

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I had severe hot flashes & mouth ulcers from stevia. It is a plant, so a person can be allergic to stevia just like any plant material, and especially if you’re allergic to ragweed, or have hay fever. Your immune system interprets the ragweed and stevia proteins as like compounds and responds with allergic-type symptoms. Many people may not realize, but stevia also can be highly processed & even bleached. The stevia industry is not so willing to put that out there.
As a side note, if you have ragweed allergies (hayfever) it is possible to have a cross sensitivity with sunflower seeds, melon, zucchini and chamomile. So some experts recommend that people with known allergens within this family avoid consuming stevia.
I’ve had people high up in the stevia industry challenge my experience with & about stevia in order to protect their niche in the industry of natural sweeteners, by saying it’s totally safe. But it may not be for all people. It’s unfortunate it’s touted to be THE natural sweetener for ALL people.
Well, my question was about honey but seems got off track.
Below is a great article about this.

https://suzycohen.com/articles/stevia_ragweed/

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Thanks for the information. I do have hay fever to Bermuda, cedar and such, but so far, using less than 1/8 teaspoon a day have noticed no allergic reaction

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@fancyrph

I had severe hot flashes & mouth ulcers from stevia. It is a plant, so a person can be allergic to stevia just like any plant material, and especially if you’re allergic to ragweed, or have hay fever. Your immune system interprets the ragweed and stevia proteins as like compounds and responds with allergic-type symptoms. Many people may not realize, but stevia also can be highly processed & even bleached. The stevia industry is not so willing to put that out there.
As a side note, if you have ragweed allergies (hayfever) it is possible to have a cross sensitivity with sunflower seeds, melon, zucchini and chamomile. So some experts recommend that people with known allergens within this family avoid consuming stevia.
I’ve had people high up in the stevia industry challenge my experience with & about stevia in order to protect their niche in the industry of natural sweeteners, by saying it’s totally safe. But it may not be for all people. It’s unfortunate it’s touted to be THE natural sweetener for ALL people.
Well, my question was about honey but seems got off track.
Below is a great article about this.

https://suzycohen.com/articles/stevia_ragweed/

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@francyrph I do have ragweed allergies but after I used stevia I never noticed but will next time I use it. Ive had hot flashes now 76 since meno. My U m.was same she was going n her 80,s and still had them I just thought it was hereditary ?

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Hi:
Did you get your Vitamin B12 checked lately? Please don’t let a Dr. tell you that your Vitamin B12 is normal, your number on your Vitamin B12 should be in the 600-1,000, not 500 or 575 at least 600. I had horrible tingling in my body all over. Once I got my Vitamin B12 up to 600 it all went away. Also get your Vitamin D2 and D3 tested and that number should be at least 50-90, not 25 or 30 at least 50. My number was 9 and I had a lot of symptoms like you, now I keep it around 80. I also have Autonomic Dysfunction and that is cause by my Vitamin B12 and Vitamin D2 and D3 being so low for many years. The damage was already done.

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@becsbuddy

I, too, had some unexplained symptoms—vomiting for no reason, until I became dehydrated and lost 30lbs. My voice was slurred and gait unsteady. I was sure I had a stoke (I’m 70) but no one would listen. Finally, when I was non-responsive, they gave me an MRI. And NO ONE knew what they were looking at! I was admitted but my husband continued to search for a good neurologist. I was diagnosed with Clippers disease at University of Colorado where I continue to get care. I really agree with John. Try to get to Mayo Clinic or the university medical center in your state

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@becsbuddy
Your post about Clippers Disease was a first for me. I see that at Mayo there is an exceptional neurologist, Dr. Tobin, who researches this and others disorders. He might be a good contact for anyone dealing with a neurological disorder that is hard to diagnose, here is a link to his profile, https://www.mayoclinic.org/biographies/tobin-w-oliver-m-b-b-ch-b-a-o-ph-d/bio-20150062

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@tamiwright

My daughter has been diagnosed with several autoimmune diseases and she does good for a while and then we have more complications! We go to Endocrinologist and a rheumatologist
She has type 1 diabetes, hashimoto, mixed connective tissue, Raynauds, and RNP antibody

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Hello @tamiwright, welcome to Connect. I can't imagine how hard it must be trying to help your daughter find some answers and treatments to help her. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where other members who have multiple autoimmune conditions may be able to share their experience with you.

> Groups > Autoimmune Diseases > Undiagnosed and don’t know where to go next
https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/

You might also be interested in viewing the following discussions related to your daughter's conditions and read what other members have shared.

> Groups > Diabetes/Endocrine System > Trouble with everyday realities of diabetes
https://connect.mayoclinic.org/discussion/trouble-with-everyday-realities-of-diabetes/
> Groups > Autoimmune Diseases > MCTD (Mixed Connective Tissue Disease)
https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/
> Groups > Autoimmune Diseases > Raynaud's Syndrome
https://connect.mayoclinic.org/discussion/raynauds-syndrome/

Are you able to share the symptom that is causing your daughter the most trouble?

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@johnbishop

Hello @tamiwright, welcome to Connect. I can't imagine how hard it must be trying to help your daughter find some answers and treatments to help her. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where other members who have multiple autoimmune conditions may be able to share their experience with you.

> Groups > Autoimmune Diseases > Undiagnosed and don’t know where to go next
https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/

You might also be interested in viewing the following discussions related to your daughter's conditions and read what other members have shared.

> Groups > Diabetes/Endocrine System > Trouble with everyday realities of diabetes
https://connect.mayoclinic.org/discussion/trouble-with-everyday-realities-of-diabetes/
> Groups > Autoimmune Diseases > MCTD (Mixed Connective Tissue Disease)
https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/
> Groups > Autoimmune Diseases > Raynaud's Syndrome
https://connect.mayoclinic.org/discussion/raynauds-syndrome/

Are you able to share the symptom that is causing your daughter the most trouble?

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I don't really know how to answer that question as it is different each day. I feel like she is doing better one day and then the next day we are having pain, fatigue, weight loss, incontinence not all necessarily on the same day. She has also develop a boil that we are having to go see a wound specialist as it is now an open hole.

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My daughter has been diagnosed with several autoimmune diseases and she does good for a while and then we have more complications! We go to Endocrinologist and a rheumatologist
She has type 1 diabetes, hashimoto, mixed connective tissue, Raynauds, and RNP antibody

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Hi @tamiwright I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I merged your post to this existing discussion. Simply click VIEW & REPLY in your email notification to get to your post.

How long until you see the wound specialist?

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@tamiwright, I thought you might find the following video helpful.

What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

There is also another discussion on the topic here:
> Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

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Did you get your blood tested for autoimmune encephaliti? The same test also checks for ganglionic achr antibody which is seen in about 50% of people with POTS. Mayo Rochester does the testing but I think any doctor can order it from any lab.

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@jodyradney

I have been reading many of the posts and feel able today to post my story. Before July of 2017, I was very active even doing Zumba twice a week and caring for elderly mom. I have an an undiagnosed auto immune disease which began July 2017. Symptoms are so plentiful and diverse that I have had many doctors tell me I am a mystery. Not something any of us want to hear. I have been in the hospital 5 different times including the Mayo Clinic Minnesota since last year – all for different problems. I spent 12 days at Mayo paying out of pocket with no diagnosis.This also does not include ER visits. No one can diagnose my illness.
Almost all my symptoms are “quiet “ at this time but some of them were in no particular order of occurrence:

Chest pain soreness along the bra line
Soreness in rib area/lung area (still current)
Difficulty breathing (this came from fluid in both lungs)
SVT’s
Extreme fatigue
Pain in calves/thighs
Have Graves’ disease since 18 with just maintenance (after August disease onset T3 T4 not normal)
Extreme inflammation through out entire body causing 2 times of draining fluid from both lungs
Fluid around my heart which was drained
Fevers
Total kidney failure (dialysis 4 months)
Swelling in lower stomach below belly button after eating
Interitis which required admission to hospital
Biopsy of kidneys revealed Minimal Change Disease (nephrologist said failure would not be caused by this)

I have been tested for everything- lupus (multiple times),RA, cancer, tumors, multiple MRI, PT, sonograms, xrays (I’m surprised I don’t glow in the dark). I have 2 three ring binders with hospital tests, information and discs of MRI’s, etc. Rheumatologist tested me for Mediterranean Fever but it was inconclusive.
I have been on plaquinil, prednisone all the way from 60 mg daily now currently taking 5 mg. Took as much as 1,000 mg twice intravenous during kidney episode. Prednisone is a savior and the devil. Took metropolol for my heart which has since cleared up. Colchicine which I am currently taking for the inflammation “seems” to be helping. Inflammation markers which I ask to be checked monthly are still elevated. Inflammation goes up and I get sick. I am also taking CBD oil. I have had anxiety my whole life and extreme stress in my recent life and the oil has been a godsend. My husband says I act like a normal person now. I take that as a compliment because I do feel much calmer.

I’m still trying to get my thyroid in line and get my stamina and strength back. We are considering the NIH for help in diagnosing this illness I have.
I’m sure I’m leaving something out. It has been a long road with no end in sight. I’m trying to listen to my body and take it easy.

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Wow seems like we are going through the same thing! For yrs my right side was getting weaker and weaker..and now whole right side is inflamed. I too have gotten tested for almost all autoimmune..have had many MRIs cat scans..exrays..still no clean cut diagnosis..just know what I dont have. Recently though I noticed a lump on the bottom of my neck and my voice is changing and annoying cough. My endo is for some reason not sending my prescript of ultrasounds and blood tests. Also have had 2 plus blood in urine for a year. Still no reason found why. Docs look at me and say eh I dont know what it is and say see me in 6 months. So frustrating. Sending my reports to mayo clinic tomorrow I just have to have full work up already. And I have heard great things about mayo clinic:)

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@hopeful33250

@becsbuddy
Your post about Clippers Disease was a first for me. I see that at Mayo there is an exceptional neurologist, Dr. Tobin, who researches this and others disorders. He might be a good contact for anyone dealing with a neurological disorder that is hard to diagnose, here is a link to his profile, https://www.mayoclinic.org/biographies/tobin-w-oliver-m-b-b-ch-b-a-o-ph-d/bio-20150062

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@hopeful33250 I just saw your message from December! Thank you for the info on Dr. Tobin. At the moment, I’m being treated by a neurologist at University of Colorado and think I’m doing OK. Still trying to find my old self, but think I’ll have to settle for new self. CLIPPERS is pretty rare, less than 100 of us lucky people. Think I’ll give Dr. Tobins name to my neurologist. Thank you for the info and interest. Becky

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