Weird symptoms

My husband had a similar thing with the bladder. He had acquired a taste for chocolate milk and donuts. The constant influx of sugar cause tend to develop interstitial Cystitis. We spent $5000 in an out patient procedure that did in fact confirm the diagnosis. He was given medicine that cost over $200 a month and didn’t really stop the pain in the bladder nor did it stop the frequency urges. He decided to do an experiment and quit eating chocolate milk and donuts on a regular basis. Within one month he no longer needed medicine. Bladder healed. We found out later that he has hemachromatosis which when left untreated causes all the organs including the pancreas and the heart even the brain to become weekend by excess iron. Even if you had hemachromatosis you’re too young to be experiencing the cumulative effects - plus your are female. (Menstruation offers a bit of protection from accumulating too much iron) But sugar could be playing a role and/or your particular metabolizing of sugar.
Another thought just an idea you mentioned this has been going on for about two years so you must go back those two years with your diary and anything you can think of that you’ve done in those two years again the least little thing different if you can remember write it down - For instance have you had any immunizations during the past two years / at the beginning of the symptoms? If so write those down - what kind of shot, when you had it, when symptoms begin to occur, etc. I had to take a booster shot for Tetnus in order to qualify for a volunteer program I was going to a disaster area - I had similar symptoms similar to the heaviness in the arm that you describe where the shot was given. Throwing out these ideas to help you search your memories for any little thing that may seem insignificant.
But the tingling you describe reminded me of what my husband used to say when he was overloading his body with all that sugar and his pancreas no doubt wasn’t keeping up and he had the burning and the tingling in the feet and the toes and the bladder thing .
Pardon the long post but another thing that is highly suggested? Read all you can on the healing effects of Turmeric. Look into digestive enzymes and proteolytic enzyme‘s. You might try illuminating soy wheat and dairy from your diet and your sugar! A week to 10 days as an experiment may offer up some relief - you will notice if you feel any better. Likewise with vitamin D three most of us are deficient. These are just natural things that certainly can do no harm and they may very well make you feel better. It’s amazing how our bodies can heal when given the bright building blocks!

@kriss86 I have several suggestions and listed some links. I hope you will find something that helps you in your search.

What I might suggest as a first step is an evaluation by a neurologist, and they would determine what tests they think you need based on your symptoms. They will likely test for things like Lyme Disease, autoimmune disease, thyroid disease or physical problems that can cause these symptoms. You might want to make a diagram of the body and mark where the pain is and what type of pain, and how and when it changes.

I searched and found some useful links about Lyme and posted them below. You may also have tight tissue contributing to nerve compression, and after reading your profile, I see you are a young mom. Possibly pregnancy could cause some mis-alignment of pelvic bones. Tight muscles can pinch nerves near the pelvis causing leg symptoms. A physical therapy evaluation with a therapist who does Myofascial release might be able to help if this is a physical problem. I do this therapy myself for thoracic outlet syndrome and a spine issue that had surgery.

You need a detective to figure out what direction to look and to check for multiple problems that can cause an overlap in symptoms.

I collected a lot of information about MFR physical therapy in another discussion that you can find at
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

MFR has helped me resolve a lot of pain and tingling. While in physical therapy for TOS, I had a disc rupture in my neck and cause spinal cord compression, and I had surgery at Mayo for that. MFR has helped in my recovery from surgery and the scar tissue it creates as well as my TOS (thoracic outlet syndrome).

Other things that can cause similar symptoms would be food issues with gluten if you possibly have gluten sensitivity or celiac disease or food allergies. Even spine problems can cause symptoms like that, but you are young, and those problems tend to increase with aging. If you have congenital spine issues or have had an injury such as a whiplash, there could be an undiagnosed spine problem which a neurologist could evaluate. You can test the food and gluten stuff yourself with an elimination diet. It could also be a several different things going on at the same time contributing to those symptoms, and you might have to add pieces of the puzzle until you figure out what is wrong. With a raised temperature, it does sound like something infectious, and a metalic taste in your mouth can actually be from metals if your have them in your system, or from prescription drugs or supplements. I have had all my old silver amalgam fillings removed from my mouth, and they are known to cause leaching of mercury vapor and contain tin and silver metals. Foreign things like that can cause health problems, and there are blood tests for metals that might be in your body. According to my doctor, that was a cause of my Hashimotos' thyroid disease. Before I had the filings removed, the antibody levels against my thyroid were off the charts, and after removal, the levels were read and were low, but not gone. My thyroid function has improved since then. If you have an autoimmune disease, you are more at risk to have others.

I've read an excellent book by Donna Jackson Nakazawa about how trauma during childhood can cause disease later in life, called "Childhood Disrupted, How Your Biography Becomes your Biology, and How you can Heal", and she has a few more about health conditions. She has overcome these kinds of issues in her life and regained her health.

This book is about how to overcome autoimmune problems.
https://donnajacksonnakazawa.com/autoimmune-epidemic/

She has another book about figuring things out
https://donnajacksonnakazawa.com/last-best-cure/

Celiac & gluten
https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
https://www.celiac.com/

Hashimoto's thyroid disease causes enlargement of the tounge
https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855

Videos for doctors about Lyme disease
https://www.ilads.org/research-literature/videos-2/

Symptom checker for Lyme disease
https://igenex.com/ticktalk/symptom-checker/

https://igenex.com/the-igenex-advantage/
https://www.ilads.org/research-literature/lyme-disease-basics-for-providers/
https://igenex.com/ticktalk/2018/01/12/your-lyme-disease-test-results-are-negative-but-your-symptoms-say-otherwise/

@kriss86
I would keep asking the doctors for help. If you don't ask you won't get anywhere. Sounds like you need more tests. I'm not a doctor but it could be Lyme disease and it's coinfections can cause all those symptoms and more, plus...the spirochetes hate heat...the lyme disease and coinfection tests that regular doctors do are outdated and inaccurate like the Elisa and the Western Blot. You don't have to be bitten by a tick, it could be a spider, mosquito or other biting fly etc...It will affect you when your immune system is low. If you exhausted all your other tests with no results then maybe see a Lyme Specialist. I know two things for me that were specific for Lyme was when I ate sugar or carbs I would be in overall body pain the next day and when I was put on an antibiotic for something else like a sinus infection I would get better but my symptoms would return if I got stressed or especially if I ate sugar, dairy, wheat. I have a Tarlov Cyst in my sacrum that affects my bladder. Lyme and it's coinfections will attack the parts of the body that are weak.

I’ve been thinking about what you said that the symptoms went away while you were pregnant. Did you take prenatal vitamins? Also thinking about recently you said that your doctor mentioned that you were a little anemic. I recently read something about low Thiamin which is basically B1 vitamin - causing symptoms like yours. So, it’s worth an experiment (if it was me). Do you still have some of the prenatal vitamins? Wouldn’t it be something if what you have is a B vitamin deficiency? (Anemia is helped by B6 and B12) I have Hashimoto’s disease and one of the things that I do that makes me feel better is to take methylated B vitamins. One of the things in my particular case is I have a genetic predisposition not to metabolize folate properly. (2 copies of the MFTHR gene - hope I got that acronym right!). So I get all kinds of weird symptoms including panic attacks, tenseness, etc. but when I take the methylated B vitamins much of that melts away within hours! What happens is I get to feeling better and I forget to take the B vitamins and then I have to start all over again but it always works! Anyway thought to mention it I keep thinking about you and I do hope you’re finding some relief.

@ambrose Hi, how did you get tested for the MTHFR genes? Did you do the swab or blood work? I've been reading up on that but my insurance company won't cover the blood test. I read that if you have your B levels checked and folate along with homocystein, those results together will let you know if you're B deficient. Do you know if that is another way? I also read thiamine is safe to take and doesn't cause any side affects of toxicity.

I go to a functional doctor in Tulsa Oklahoma actually Jenks which is a suburb of Tulsa. He tested and has a laboratory that works with him that has offered to do the testing for whatever the insurance pays and at the time my insurance did pay a little bit. It was a blood test and yes they did test for homocysteine levels and yes after that they told me that I needed methylated B vitamins. The folate thing was really eye-opening to me because I have been taking folic acid for years thinking I was doing a good thing and probably causing myself some trouble most notably anxiety! As soon as I got on the methylated B vitamins anxiety levels went way down like 85%. I’m scheduled to go back soon and they want to retest homocysteine levels because I was in the yellow zone not the red zone but definitely the little bit of a danger zone.

Hi everyone, I am new to these groups and very thankful to anyone who replies. I feel overwhelmed, exhausted and frustrated. I don't know where else to turn.
In 2011, I had papillary thyroid cancer. I didn't think much of it. At the time I was never sick, homeschooled 3 of my 4 kiddos, ran my own business and worked out 3-4 times a day in preparation for a fitness competition. I was a weight lifter. In 2012 migraines became intollerable and found out that I had a massive pineal gland tumor that required surgery. I had brain surgery at the end of 2012. I still thought little of it and fully expected to return to my normal life within a reasonable period of time. I thought I was recouping through most of 2013. I finally went to a pain doc because everything seemed wrong. He was painfully dismissive and I quickly gave up. I'm not looking for meds....I'm seeking an explanation. I went down a rheumatologist realm with little to mention of it aside from a POTS, Ehlers Danlos, APS and small fiber neuropathy diagnosis. None of these things seem to fully explain how I'm feeling. They also found that I had abnormal nail fold capillaries and am consistently IGG subclass deficient also ANA positivity that comes and goes with equivocal dsdna. I'm sure I'm leaving some things out. I have had too many surgeries to count now. In the last 2 months I have had a nerve sheath tumor removed from my thigh and 2 more "tumors" removed from my neck which they thought were also nerve sheath tumors and were actually inflamed lymph nodes. I can't do anything. I walk with a cane. I can barely make it up the stairs. I weigh 90 lbs. My brain tells me to quit trying to figure this out, but my heart says I have 4 kids that deserve answers. My father died in his early 50s from undiagnosed Hodgkin's. We found out he had cancer at autopsy. The docs all told me his tests, biopsies and exploratory surgeries were all "normal". What do I do? Do I give up? I don't feel that any of my docs care about anything other than surgeries. I can't find any help. I keep trying to self diagnose on the internet, but let's face it....it's always wrong. If anyone can direct me or if this speaks to anyone....please let me know. I just want an answer. I have constant joint/muscle/bone pain body wide. I have no energy at all. I have insomnia. I have chronic migraine. I am always dizzy and nauseated. Depression is an understatement, but I blame it on my overall health. I e always been happy and easy to get along with. Please...if anyone has any thoughts...I need them. Thank you.

Hi, @julieparton, and welcome to Mayo Clinic Connect. I moved your post to this existing discussion, "Weird Symptoms" in the Brain & Nervous System group, so that you can connect with others who have been interacting with @kriss86 as she seeks a diagnosis, as well. If you click VIEW & REPLY in your email notification, you will see the entire conversation and be able to take part.

Trying to get a diagnosis and some answers can be a challenge sometimes, so I wanted to introduce you to fellow Connect members participating in this conversation, like @ambrose @jenniferhunter @kriss86 @suscros68 @johnbishop @cokie63 and others, who may be able to provide some support and input from their own experiences and research as you try to understand what may be going on and decide how to proceed.

Have you considered the option of looking into getting another opinion at another medical center, @julieparton? Have you by chance seen an internal medicine physician to see if a diagnosis can be identified?

Hi, @julieparton, I would like to add my welcome to Connect along with @lisalucier and other members. I'm glad you are asking questions and trying to learn as much as you can about your health. I can understand wanting to quit trying to figure it out but I like what your heart is telling you. Another way to look at it is it's not a patients job to diagnose. That's for the doctors to do but sometimes we the patient have to keep pushing and asking for answers. We really have to be our own advocate and I think that's what you are doing. I really agree with @lisalucier about getting a second opinion or a referral to another medical center.

I'm not sure if it's an option for you, but if it is Mayo Clinic is very good at diagnosing hard to diagnose and rare conditions with their patient centered care. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Thank you so much for reading and responding. I kind of feel like I'm on an island right now. We live at a relatively high elevation in Colorado right now. I have seen so many doctors and it almost seems that the more info I provide for them, the less interested and more overwhelmed they become. We are in the process of relocating to Maine, so I will look for more opinions and also look into mayo. Thank you so much. I'm very frustrated and it's so against my nature to be such a "weakling". If nothing else, the weakness and fatigue are so difficult for me to deal with. I can handle pain. I can't handle being a waste. Anyway, thank you so much. I sincerely appreciate any and all of you.