Posted Today 7:52 AM (GMT -7)
First off, I'm new here, so I hope I'm doing this right! I was diagnosed with Trigeminal Neuralgia 2001, after being told by several Drs that it was "migranes", "maybe it's where your glasses touch your temple!" "Stress" (my mom passed away the year before)
After my diagnosis, I started many different meds, and finally found one that I could tolerate and actually worked! However, I knew something was wrong. I had on and off issues for years and Dr's telling me it was depression, which I suffered from since I was a teen. So I knew it wasn't my depression! Years pass, my focus is on my 2 kids, and in 2009 my dad was diagnosed w/ stage 4 NSC Lung cancer that had metastasized to his pancreas. So of course my full attention isn't on me it's on my dad and my kids. Drs gave my dad 12-18m. He fought with a smile and an amazing spirit for 4 1/2 yrs. April 3, 2014,he passed.just over 3 was later on April 28, 2014, an F3 tornado hit our home while myself and kids were home. We were not physically hurt but our 1840's log home was. $200,000+ in damage, 2 totaled vehicles and our 1840's barn was destroyed. Clean up, insurance claims, and finding a place to live while we repaired our home began. Less than a month later, in May (on my daughter's Senior Class Day) my 11yr old son had to have an emergency appendectomy!!! Surgery/Recovery went well. My daughter graduated the NEXT week! All of this while trying to sort through our life that was soaked, broken from the tornado! !
So, of course, I go into "auto pilot" focusing on the issues we were facing. My health was not even on the radar in my mind. I had no time to think about it! I didn't even have time to fully grieve the loss of my dad!
I am not a "girly girl" & have always done " man things" as my son likes to say. I do carpentry, build furniture, havey OWN chainsaw and if you tell me I can't I will prove I can! So I went to work on the house, my husband as well, doing 80% of the rebuild ourselves we were able to get back into our home in 6 months.
During all of this, of course my depression worsens, my body hurts, I'm losing weight, dizzy......I chalk it up to overworking, stress, not eating and drinking like I should..... by the summer of 2015 I KNEW SOMETHING WAS WRONG! Finally get a Dr to do a MRI and was told it was clear. Wasn't having it! I to that same mri to an MS dr and he showed me 22 lesions on my brain. Now begins the MS treatment. Started Rebif and roughed it out until the week I was to reach the max dose and thought I was going to die!!! Dr said the meds would make me ill. But I couldn't take it and I couldn't take the dr shrugging the severity of it off. So I go to a major university hospital 2 hrs away to see another MS specialist. After 2 hrs of poking and proding he asks if I have been tested for Lyme. Of course my answer was no. He said my lesions were not all typical of MS. I tested positive for 4 bands, (to this day I still can not get an answer as to what bands they are!)
Go to another dr for treatment, go rounds w/insurance and finally get PICC line placed 2/2017 for 4 weeks. Told I have late stage chronic Lyme disease & Lyme arthritis. And that I would ALWAYS have it
Home health nurse, 5 grams Rocephin, heparin and saline flush everyday 4weeks. Depression improved, only slight herx, and felt better than I had in years. 4weeks later PICC line removed and the Dr has the nerve to say, "You no longer have Lyme." After telling me I would always have it! ! Dr did blood work and of course it was negative bcz I had just been on 5gr Rocephin for month!!
Now I'm at a stand still!!
MS dr won't treat MS if I have lyme and can't find dr to treat the lyme that knows a dang thing about it! !! Nt even sure I have MS or my lesions are the cyst form of the lyme!! UGHHH!
SORRY for the novel but it's been a long road and now I'm at a dead end!
I have been using herbal supplements and they seem to help some but still have chronic fatigue, cognitive issues,
Facial drooping slurred speech, vision trouble, air hunger, low blood pressure, weight loss and I am not physically abe to be as active as before I can't lift lumber to build furniture, takes 2-3 days to completely clean the house.......
I'm just at a loss as to what to do!??!?!?!
AND I AM SICK TO DEATH OF PEOPLE SAYING YOU DON'T LOOK SICK AND JUST PUSH THOUGH IT! ! !
Any advice would be so very appreciated and welcomed!! It helps to know that I am not alone in my struggles and frustration.
My thoughts and prayers go out to all who are suffering!!