NEW, DAZED & CONFUSED

[MaJoe]

Hi Everyone. I'm very hopeful in finding support. I walked into a Ortho doctor June 2021 with extreme lower back pain. He did lower back MRI and saw "a spot" but didn't think anything was wrong/necessary to do. He referred me to a Spine & Neurological Clinic and I assumed I would be seeing a neurologist. Nope. It was a Neurosurgeon. Waste of time. He referred me to PT and a Physioneurologist (sp?) I had to wait a month for that appointment and by that time I had fallen twice and had to use cane to get in for appt. She scheduled me for another MRI (another month to wait). I got MRI and got a call that night: "You have Transverse Myelitis". What?! So, I was sent to a neurologist who treated me with steroids, pt, but he did no spinal taps, etc. that I had been reading should be done. I steadily got worse. I had to get a wheelchair (after first cane, then walker, then rollator). IT HURTS. I went back to see this neuro and he literally came in and said "there is nothing more I can do for you". He referred me to doctor #4 and I mean to tell you: I immediately knew he knew his stuff when he started poking me with a pin! Oh yes, he knows! I got more MRIs, a spinal tap, some other tests and yep, MS. That was mid-April and I'm still STUNNED. Literally. I could go on for days but for now THANKS FOR LISTENING!

[loopey]

I am sorry you had to go through so much to finally get diagnosed. Are you still using a wheelchair? Are you on any MS meds?

My first bad symptom was double vision and horrible dizziness with nausea. I got an MRI and the doctor said I didn't have a brain tumor!?
The dizziness got somewhat better then came back so I went to another doctor. He looked at the first MRI and said I needed to see an MS neurologist and have another MRI. I got the MRI and was scheduled for a spinal tap. While I was waiting for the spinal tap in a hospital gown I asked the doctor if there was anything on the new MRI and he said yes, you have MS. I didn't even need the spinal tap!! Needless to say I was very upset he was going to do it anyway. I get good care now and I really hope you do too.

Please tell us how you are doing now.

[KoKo]

Hello MaJoe!

Thank you for sharing your story with us.

Looks like you had to go through a lot of twists and turns before the doctors focused on testing for MS.

I was very fortunate that my doctor referred me to a neurologist after my first visit with symptoms.

With the neuro, my diagnosis of MS came after the results of a clinical exam (which revealed several neurological deficits), blood tests (to rule out other disorders), MRI, and spinal tap.

For some, it can take years for a firm dx of MS!

In any case MaJoe, we're here for you. Feel free to ask questions, and we'll be glad to help if we can.

Looking forward to more of your posts!

[Seasha]

Welcome to MSWorld, MaJoe!

Sorry to hear about your ordeal in finally get diagnosed. So many of us have had shared experiences similar to you.. I myself was misdiagnosed for 10 years before I got a definitive answer. That was many, many years ago before they had the newer diagnostic tools of today.

I hope as you go forward, you can see a neuro who specializes in MS who will find a good and appropriate treatment plan for you. Please come back to share more what's going on with you and, as KoKo stated, ask lots of questions!

We're here to help. Take care of yourself!

[Mamabug]

Welcome, MaJoe.

So ... , you were initially dx with Transverse Myelitis. Is that still your current dx? Or have you been dx with MS? I hope that you receive an accurate dx, followed with appropriate treatment.

Meanwhile, take care of yourself. Get plenty of rest, do some moderate exercise (even if it's chair exercise), and eat a healthy diet. Consider reading The Wahls Protcol. Dr. Terry Wahls recommends eating 6-9 vegetables per day and eliminating gluten, dairy, processed sugar and other processed foods. You may wish to supplement your care from a traditional neurologist with additional care from a functional medicine doctor, who looks at preventative care and root causes of chronic illness.

[MaJoe]

Thank you everyone. Yes, they say I have MS. I had my first dose of Ocrevus in June and go for second in December. I am in a wheelchair but my pain specialist, just last Friday, said he wanted to see me using walker more. So yesterday, my son comes to get me to go to neuro. I decided to go from house to car with walker. He could get me a wheelchair once there. All went good but when we got home, WOW, I fell straight onto my head on driveway!!!! I'm ok.

I am so very exhausted I'm having a problem in even reaching out for support! I need mental help/support (from folks like you). I work full time (at home, sitting in wheelchair), I have full custody of 12 almost 13 year old grandson. I am single.

Like I said, I have so much to write/ask!!! Too tired (and I'm supposed to be working).

[pennstater]

Hi MaJoe,

Glad you weren't injured in your fall. How scary. Maybe using the walker both ways was a little too much and you need a little more gradual build up when using the walker? Can you use it sometimes in home?

It sounds like to have your hands full - MS, working full time, and raising your teenage grandson. Hoping you have some help.

When you have more strength, please ask away. We are definitely here for you.