Lost in what to do
I will try to keep this short but essentially I'm 39 years old and my health has been rapidly declining for the last 6 years. I've lost everything, I can't work, I can't walk independently, I need help from my husband for most things and I had to change how I parent my kids.
I live with a long list of daily symptoms and pain.
after my entire right side of my body went numb, along with my daily symptoms I went to the ER. The neuro had me wait an additional 2 months to get MRIs (these showed lesions in both spine and brain)
Waited another month for lumbar puncture, this showed I had 10+ obands.
The man still didn't believe my symptoms.
Then a few months later diagnosed MS and started me on a DMT.
My symptoms got worse, further MRI showed more lesions and now lung abnormalities.
Paused my DMT. I asked if the DMT could have caused the lung abnormalities and I'm being brushed off.
Waited to see pulmonary dr. He refuses to do a biopsy even though I have at least 7 large nodules in my lungs now. He suggested it might be neurosarcoidosis or sarcoidosis eith MS and to let it run its course?! I said i have no quality of life, and that was shrugged off.
Every symptom I have had these last 6 years have not gone away, I just get new symptoms that compile. I am not being listened to by neuro or pulmonary dr or regular dr. None of my symptoms are being treated.
I'm currently experiencing wicked eye pain, that I know needs to be dealt with and is probably optic neurotis but i feel like I'm living in the twilight zone because even when I have proof things are wrong - nothing is being done.
I don't know what to do. I live rural so we don't have any type of walk in - just ER. I cant get into my dr until the end of the month. My neuro never calls back. I feel stuck. Even with proof, I don't get treatment. I feel crazy.