Dianna’s Journey

Hello All. I am brand new here and am honestly just looking to vent. I’m frustrated. I am 43, a mother of 6. I feel like I’ve been pretty healthy my whole life, but I know it isn’t true when I talk to my doctor about all the surgeries I’ve had to have. My doc is pretty stinkin phenomenal, the issue is, she doesn’t get the backing she really needs and she isn’t a specialist so the insurance kinda shuffles her around like they don’t give a rat’s patooty about her opinion. When I began seeing her over a year ago I gave her my history which isn’t much because I’m afraid of doctors. I’ve seen them while I was pregnant but usually if I seen them afterward there were problems, ie I found out I had to get a hysterectomy due to endometriosis, then found a lump and had to have it removed, my bladder fell and did more damage than normal…. That kinda stuff… so anyway, I had a nasty fear of doctors. I hadn’t been to one in a WHILE.

I told her about the amount of body pain I was in pretty much all the time, the location of it, the muscle spasms, migraines, blurry vision, memory failing, the fact that there was numbness in my toes and my fingers and she begins putting things together that other doctors had brushed away or just wrote off with script after script. Anyone else feel this??

She then decided because I had to have a lumpectomy previously that I needed to have a mammogram, darn near a book of bloodwork, referrals to neurologist, pain management, someone for my kidneys because the first breath I take in the morning causes me to double over in screaming pain and she thought it was my right kidney… it wasn’t, it was my back

The mammogram leads to an ultrasound of my breasts, that leads me to be left alone in a room myself again and again. This leads to a letter, not a phone call, a letter in the mail that tells me I have an appointment with an oncologist. 😳 UNCOOL RIGHT…. Ummmm hummm so now I’m under the care of an oncologist whom tells me “we will watch and wait” 😉 no big deal.

Still have referrals out for my neurological issues right, I get the call finally. I go see them and explain to this person that specializes in MS, the symptoms I am having. At this point, my legs are going numb pretty regularly from mid thigh to feet, both of them, they also feel cold to the touch. When someone is touching them it feels like cotton balls on the skin to me or like your feet are sleeping if you will, not like they are waking up. My ring and pinky fingers are tingly, I don’t know if I would call it vertigo or what I would call it but I can’t look ANY direction too suddenly without it making me dizzy. I can not look up too high, there are lumps at the base of my skull. She sat with me long enough to pass the buck and have me get an EMG for my lower extremities.

That was done as well as multiple MRI’s of the entire spine and brain, nothing on the brain, lesions on the spine as well as narrowing.

Then they found more cancer….. 😡 so we got side swiped AGAIN! Got my thyroid removed…. Blah blah blah radiation, medication, trying to get better right…. This Friday that JUST past I have an episode at work that I completely disregard at work; PLEASE if ANYONE out there that reads this has EVER gone through this PLEASE say something because I feel completely CRAZY; my right leg has this muscle tremor thing.

I work on cranes… I was crawling in the cab when it happened. I took two steps and was in the cab, no big deal. Saturday wasn’t a big deal nothing abnormal. Sunday…. BOOM like a rocket took off on my right leg when I woke up for church. I could not get my right leg to stop shaking. It would be great if I sat down but the moment I stood up or applied pressure to my leg it would flip out and cause the whole leg to be in a like full muscle spasm/tremor.

If you could imagine it like this, I full on looked like a life sized bobble head doll. 🤣🤣 you’re welcome. I’m here all day for my own entertainment and yours. I have to laugh to keep me from crying.

I clearly stayed home from work on Monday and went to my doctors office. I had to have blood work done that day and her nurse seen me, she asked me to go to urgent care where I was then referred to the ER, and they didn’t have any more answers than we have had over the previous year. I have been tested for RA Factor and that test is high, Lupus and in the long list of blood work that goes into that particular test Cardiolipin Ab IgM Is off the charts.

My doctor has requested a lumbar puncture, has anyone else out here in the form had this done??

Have ANY of your test come back like this??

My spine feels like it is in constant pain, I am cold ALL the time, my muscles hurt ALL the time, and I am tired A LOT, but that could be from the thyroid garbage.

For those of you asking what has helped here goes nothin….

Not a lot. I’m sorry babes… I try not to self medicate because I used to eat Excedrin like it was candy, and then it went to Tylenol, Ibuprofen and Aleve, my doctors have asked that I don’t use any over the counters anymore while I’m on prescription meds to see if they will do the work in place of the stuff that could really do damage to my organs.

I am on gabapentin 100 mg 3x a day, stuff for my thyroid, and maxsalt for migraines.

Welcome to my journey. I will try to update a few times a month because let’s be honest it truly is a medical journey we all are on. If ANYONE AT ALL has ever experienced anything I have mentioned here before please let me know, I feel like I’m bonkers.

I am still being seen by two oncologist, one for my breasts one for my thyroid that has to be monitored now for the rest of my days and from my last scan I still have spots which co-exist with MS as well, I have 2 neurologist, a pain management specialist and not all of them are on the same page. My doctor wants me to take FMLA but we all know that FMLA doesn’t pay. So I will return to work tomorrow. Yes, against doctors orders, shaky leg, sore muscles and all.

You all have an amazing night. Chime in I would really like to have some friends.