Share this:
tiffmeag3
@tiffmeag3

Posts: 1
Joined: Dec 29, 2017

Need help! undiagnosed symptoms. Losing hope.

Posted by @tiffmeag3, Dec 29, 2017

Hello everyone,
Sorry for the long post, but I need help! Since July I have been so sick. Before I became sick, I was a healthy and active 24 year old woman who worked out in the gym everyday was a full time college student and worked part time. It all started with me becoming extremely weak, and every time I would stand up I would become very dizzy and my heart would race. I also was very nauseated, would break out into sweats, had body aches and sharp pains that felt like pins and needles sticking me all over. I thought maybe it was my blood sugar so I started to eat more before I went to the gym. When I was at work one day I felt like I was going to faint even though I had ate. I went to the ER and the doctor done a ton of blood work, CT scan of my head, EKG, and a chest x ray. Every thing came back normal except a little bacteria in my urine. The doctor said I was orthostatic because of my heart rate going up every time I would stand up so he gave me a couple bags of IV fluid and sent me home with an antibiotic. I thought my symptoms was due to the UTI, but I was wrong. I went to my family doctor and he done more blood work to check for other things like Lyme’s disease and mono. He also ordered an echo of my heart and for me to wear a heart monitor for a month. The echo and blood work came back clear, except it showed I had active mono. This would be the 3rd time I’ve had mono in my life. Thinking that’s why I was feeling this way I was relieved. I continued to wear the heart monitor over the month of August. My symptoms just kept getting worse. I went back to the ER again cause my heart rate was 150 and I couldn’t even sleep. They done more blood work and tests, including an abdominal CT scan to make sure my spleen and liver wasn’t enlarged due to mono. Everything came back clear. They gave me a coupe bags of IV fluid and some Ativan to help me sleep and sent me home. My symptoms only became worse. I couldn’t sleep for days, my heart rate was going up to 200 bpm. My whole body was in so much pain and I began to have burning sensations. After my skin stopped burning, my whole body went numb. It started with my legs going numb and worked its way up my body. I also couldn’t taste, smell, or see good. I hardly could put any weight on my legs. I literally had to hold to the walls to even get to the bathroom because I couldn’t hardly walk. I thought I was going to die. My body felt like it was shutting down. I couldn’t even eat because I was so nauseated. My doctor done more blood work to check for autoimmune diseases such as lupus and rheumatoid arthritis. He also checked my cortisol levels. Which all was normal. He ordered an MRI of my brain, and it came back normal. Gradually my sense of feeling, smelling, and taste came back. I still can’t feel things like I used to. Nothing tastes the same either. Smells make me nauseated, even if its good smells. My personality has even changed. I can’t hardly remember things anymore, concentrate or focus. I went from being a happy, social, and smart young person to someone who has so much anger over everything, and hates to be around people.I also have muscle twitches everywhere. My hands and fingers have constant tremors and even my tongue tremors when stuck out. I feel horrible and weak all the time that I can’t hardly get out of the bed. My hair is also thinning really bad. I feel like my whole life is falling apart. At 24 I shouldn’t be this ill, its really depressing. If anyone has any answers to my symptoms, please help me!

Liked by nurse49, jeriliz

REPLY

I think there are specialists who deal with diagnosing rare diseases you have to find one. A complete history of what you were doing or where you were ate etc prior to the time you got sick. It could be some type of parasite disease you picked up. My heart goes out to you, but you got to get the right doctor for this.

@tiffmeag3 Hi, Meag… Just read your Dossier, and I don’t know for certain that I have THE answers, but I do have some things to throw at you, which may help a little. I do not believe I have what you have, but there are some ways to get where you need to go. First, have you ever lived in a basement house? Radon? Lived on a farm, or around a mining area?, or around chemicals like week killer, dry cleaners, etc?(Roundup, 2,4D, DDT, ) Organizational Pneumonia, a sign of Amyloidosis? Have you had your SERUM Protein level checked? It is much lower than Plasma Protein, should be less than 1.6 mg/dL. Chronic Bronchiectasis? Any skin issues like a rash in a cross-hatch # pattern? Blue or black spots on your toes or around your eyes? Does your heart pound, or bounce around, or skip beats? Do your feet, especially right foot, swell? Does either eye seem to have its own problem of double vision? i.e., when you close one eye, does your other eye have double vision of its own? Do you cough a lot, spit up phlegm, bloody or not, any color? You have neuropathy all over your body, but that is always caused by something else, like diabetes, psoriasis, Amyloidosis, etc. Is your ANA Positive, which would show some autoimmune diseases. Do you bleed a lot? Look, I have written up my medical story, and posted it at https://bit.Ly/1w7j4j8 You can download it there. Don’t look at it just to see if we match, but rather to perhaps give you some more ideas where to look, and how to write up your own. You see, there are over 1,000 mutations of Amyloidosis, and you might have one of them. And there are so many other disorders, so you will just have to keep looking. Strangely enough, the only person I ever know who had the same problems you have was suffering from Post-Polio Syndrome. So don’t be afraid to ask questions. Part of the problem comes when we show up with combinations of disorders. I seem to have hATTRwt , which has eventually turned to Gelsolin, Cystatin-C, Multiple Myeloma and plain Light Chain Amyloidosis. Now, at 77, it is likely that one of these will get me, but it has been 30 years since the first cardiologist told Wifey that I would almost certainly die that night. And 5 MDs since have told her the same thing.

Hello @tiffmeag3 — welcome to Connect. I’m glad you found us and I’m hoping one of our members will be able to offer some suggestions for you or share their experience with their similar health problems. You certainly have a lot on your plate. You are doing a good thing here by asking questions and learning as much as you can.

I’m tagging other Connect members that may be able to provide you with more information. @JustinMcClanahan, @kdubois, @kanaazpereira, @lisalucier, @colleenyoung, @jeffrow are you able to offer any suggestions for @tiffmeag3 ?

If it is a possibility to make an appointment at Mayo Clinic, they are extremely good a diagnosing hard to diagnose health issues. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

The following TED talk by TED Fellow Jennifer Brea may be helpful:
“What happens when you have a disease doctors can’t diagnose” – TED talk by 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

Hoping you find some answers soon.

John

Hi @tiffmeag3,

I’d like to add my welcome to @johnbishop‘s and thank you for reaching out to the Connect community. Diagnosing autoimmune disease can be tough detective work and you are certainly not alone in feeling the frustration and stress of not getting any answers. I encourage you to view these discussions on Connect:
– Need to find out what’s wrong with me https://connect.mayoclinic.org/discussion/need-to-find-out-whats-wrong-with-me/
– Constant Fatigue, 20 year old female https://connect.mayoclinic.org/discussion/constant-fatigue-20-year-old-female/
– Autoimmune? Or is it all in my head? https://connect.mayoclinic.org/discussion/autoimmune-or-is-it-all-in-my-head/

@tiffmeag3, you mentioned, “Smells make me nauseated, even if its good smells.” Have you been tested for a condition called Multiple Chemical Sensitivity or MCS?

Hi @tiffmeag3, I”m glad you came to Connect for some help.

Looking back when all of this started and throughout all of this, what medications were you taking?

How quickly after taking Ativan did you start to feel worse?

Have you been referred to any specialists?

Here’s why I ask about medications… I have experienced several of the symptoms you are experiencing, and many of them showed clinically as endocrine symptoms (things like profuse sweating) plus also nausea, blood sugar issues, memory issues, and much more, including being unnaturally irritable.

Mayo ended up figuring out that I was experiencing symptoms due to drug/medication toxicity. Basically, genetically, I don’t properly metabolize most medications, and the meds I had been taking for 12 years were slowly building up in my body and causing these symptoms.

Based these issues, I also have multiple chemical sensitivity issues that @kanaazpereira mentioned above. I can’t be around memory foam or it causes body wide pain, brain fog, and more. The same pain can also start if I inhale certain kinds of Tide laundry detergent and also if I breathe the exhaust from diesel engines.

Also, for an entire year, I also experienced drug-induced lupus, which didn’t come through on autoimmune lab tests but was diagnosed via my clinical symptoms of an autoimmune issue. I ceased the drug and the symptoms disappeared.

My suggestions:
1. Keep a journal with a timeline of symptoms.
2. Make sure you have a good primary care physician. I fired several until I found one that actually listened to me, and a good PCP can work as your body’s general contractor.
3. Do research on reliable web sites, such as Mayo Clinic, Stanford, and Johns Hopkins.

With all of that said, I can truly attest that I know how frustrated you are. Please keep advocating for yourself, and keep fighting. I was becoming more and more ill for 12 years until I went to Mayo. In only six months, they figured out more of my health issues than two of my home medical centers did in 12 years. There are people out there who can help.

Sorry to hear your having such a difficult time. Have you been tested for Lyme’s disease? If you have and it came back negative, get tested again. Best of luck!

@dawnpereda

Sorry to hear your having such a difficult time. Have you been tested for Lyme’s disease? If you have and it came back negative, get tested again. Best of luck!

Jump to this post

@tiffmeag3
I agree with @dawnpereda, you said you had the Lyme test, but did you have the full panel tested?
When most Dr.s test for Lyme they only check for one marker as per CDC guidelines. This marker is only 50% accurate.
My initial test was negative, then a friend with Lyme told me to get the full panel tested and it came back positive with 5 markers for Lyme.
I had my testing done by Igenex (Igenex.com) they do the whole panel and you get the full report.
I just looked and the testing has gone up quite a bit since I had mine done last (about 3 years ago).
Also you might want to do some research on which test to order or see a Lyme Literate Dr and have them determine which test to do and send it out for analysis for you.
You can see http://ilads.org/ilads_media/physician-referral/ for information and a list of Dr.s in your area.

I’m not saying it is Lyme, but you want to get the full test before you rule it out.

I wish you the best,
Carl

@tiffmeag3 Just to say again what has been said before. You don’t say you have had your ANA or BUN tested. You need to. And get your SERUM FreeLightChain (sFLC from Bindings UK ) and 24-hour urinte-protein tested and examined by a top experienced and equipped lab. NOT by your local lab, unless you live around Mayo-Rochester or ARUP-Salt Lake City, or other top lab. It requires a polarizing laser spectrographic microscope, and an atom-force microscope, and some other fancy equipment. Unless you want to build your own atom-force microscope. You can do it for about $30,000 using off-the-shelf parts.

I’m so sorry about your illness not knowing is the worse.As a suggestion have you gone to a endocrinologist?he test all your hormones.

I’m so sorry about your health. I understand having weird things go wrong and having every test come back normal. My suggestion is seeking out a functional medicine doc. They view things from a different angle than conventional medicine and seem to focus on autoimmune disease and imbalances in the body.

How were your thyroid function tests..it sounds like what I went through when I was 26. I had what was called Thyroid storm…..
Look it up,check it out. Give it some thought. Good luck

@jigglejaws94

I’m so sorry about your health. I understand having weird things go wrong and having every test come back normal. My suggestion is seeking out a functional medicine doc. They view things from a different angle than conventional medicine and seem to focus on autoimmune disease and imbalances in the body.

Jump to this post

Good I will find onr

@oldkarl

@tiffmeag3 Just to say again what has been said before. You don’t say you have had your ANA or BUN tested. You need to. And get your SERUM FreeLightChain (sFLC from Bindings UK ) and 24-hour urinte-protein tested and examined by a top experienced and equipped lab. NOT by your local lab, unless you live around Mayo-Rochester or ARUP-Salt Lake City, or other top lab. It requires a polarizing laser spectrographic microscope, and an atom-force microscope, and some other fancy equipment. Unless you want to build your own atom-force microscope. You can do it for about $30,000 using off-the-shelf parts.

Jump to this post

Yes these were all checked by oncology

My gosh at your age this is way more than you should ever have. I cannot imagine how defeated you feel. You have come to the right place. At least for today. Please do not take this wrong but pray. I will pray for you also. Most if us have been through all tests known to man. At least RA is accepted by doctors. I wonder what hell women went thru before this change of thinking. No one on here would want to take on your illness. I pray you get hood answers.

Long shot: check for pernicious anemia with an intrinsic factor AB blocking blood test. You have some of it’s symptoms. Rare autoimune disease. Drs checked me for almost everything too. I brought in evidence from a Mayo web site about pernicious anemia. Good luck!!

Please login or register to post a reply.