At a loss, multiple consultations still no answer...any idea?

@athenalee Hi Athena. Thankyou for your message. And don't worry, I sure do know my body and am a VERY strong advocate for myself! It wasn't the meds " causing " the IBS. I certainly have IBS, and for years. It's just that these two meds made it so much worse. I have an awful reaction to most prescription drugs, and I'm on my natural products again, as I was before all this trouble started with medication! The natural way is always my preference.
I hope you're doing well these days. Warmest regards to you. Laurie

I’m very glad the natural meds are working for you Laurie. Before getting liver disease I never had to take regular meds, like you I was a firm believer in natural supplements. Now though I can’t take natural immune boosters and my life is dependent on synthetic medications. Rather ironic I’d say. Although I do derive satisfaction out of knowing that Tacrolimus was synthesized from bacteria found in Japanese soil...kind of earthy anyway!

Keep advocating and healing!

My niece was just diagnosed with methylenetetrahydrofo late reductase (MTHFR) gene mutation-C677T variant she needed iron infusions and B12 injections. Prayers For Answers….

HELLO @peggyjean . I’m sorry to hear about your niece. Here, on Mayo Connect, we’re a community of patients and families and caretakers of patients. We’ve all been through similar difficult diagnoses so we try to help by pointing new members in the right direction for education and resources. We’re not doctors, though, so we cant diagnose or prescribe medications. I’m going to ask @bet. @rrher and @courage3512 if they can join the conversation and give you some guidance. Ive also included the link to NIH rare diseases site.
https://rarediseases.info.nih.gov/diseases/10953/mthfr-gene-variant
While we wait for them for the others to join us, maybe you can tell me a bit more about your niece

Sending prayers for your niece.
My daughter has the variant. She has not needed the injections you mentioned. She does have to careful wit her diet and supplements. At times she is fine, at other times it is a struggle. It appears that adequate rest, diet control by eliminating foods that bother her, and a low stress level work best for her.

@change25 How is everything going for you? A month ago you said you’d get some results and then head to Mayo. Have you learned anything? I really want you to get better so you can get back to life!!

@chance25. Have you gotten any answers yet?

@becsbuddy @jwillits8, hey everyone sorry for the late reply I've been on a narrowboat for the past few weeks and decided to go technology free for the duration of the trip.

I had a nightmare trying to get my MRI results released and as my follow up was approaching I decided to leave it. To my disbelief the neurologist said that my result were normal, so why the wait? Along with saying headaches were normal... to say I'm fuming is an understatement. They've released me back to my GP with some painkillers.

I'm just in the process of booking an appointment with mayo in London though my GP is still sending me for some further blood works and a urine sample. Once I've had those I'll be heading down. I can't comprehend how everything has come back okay when I feel how I do - it's extremely frustrating.

I have been extremely sick over the last 2 years with a multitude and I mean over a dozen symptoms that affect me from head to toe yet everything is coming back normal and I've been through several neurologists and several endocrinologist and cardiologist and gastrologist besides my primary care doctor and everything comes back normal but I feel like I'm one breath away from death that's how sick I feel and it's a daily struggle.

I am absolutely shocked at the lack of attention or the lack of understanding from all these specialists and doctors and how many of them are very nonchalant and hands-off and want to get you in and out of their office quickly and write you a prescription for anxiety or antidepressant always trying to blame it on stress or anxiety. That's the easy way out and that's the way out most of these doctors take because they just seem like they do not really want to put any effort into finding out what's wrong unless it's an easy way like an MRI telling them exactly what's wrong.

So every day over the last two years after paying sky-high medical insurance cost and co-pays and deductibles, paying these outrageously high medical insurance cost I feel like I have half a$$ed treatment by so many doctors. What exactly am I paying for with these sky high medical insurance premiums when the majority of these doctors just many of them seem clueless and they just don't want to put any real effort into finding out what's wrong and they just want to blame it on stress. I'm literally fed up with the whole system.

I'm sorry you're having to go through this. You really do feel hopeless - where you begin questioning whether it is in your head, but then your realise how you're feeling and that what you are going through is real.

It is completely out of your hands from testing to the reading of results - you have no say. Are they diluting the results so they fall below the threshold where another lab would reveal a positive result? Have the radiologist missed something? There are some brilliant Dr's but when everything is clear you can only assume that whatever is the cause is a rare issue others it would've been picked up by now. Then it is just the luck of getting the right specialist at the right time.

I can't imagine what your are going through along with the burden of cost you are having to endure. I'm fortunate to have the NHS in that sense. I did have a recent misdiagnosis where an emergency ecg was required. I got a call back saying everything was normal and that it was my anxiety that was causing the fluctuations in blood pressure. Only for a different GP to call me back diagnosing me with tachycardia. Now I'm having multiple blood tests to determine the cause. An experience such as that really does make you wonder about previous test and exams and whether something was missed.

You're doing the right thing and I'm sure your pursuit will eventually reveal something. I really do hope that it is sooner rather than later though, all the best.