Just Diagnosed with MS

Hi I am Cryssy and I have posted on some of the other forums but I am newly dx with MS.

Over the years, I am 31 by the way, I have been dx bipolar, chronic pain, chronic migraines, and fibromyalgia. I had never looked at MS as a possibility. Slowly in the last year a lot of weird things started happening off and on. I had already had a neuro for the headaches so I asked him about MS in November. He said no way could that be it and it's just your headaches and fibro causing your symptoms. I had my tounsils out and polyps removed from my sinuses in December and after my ENT listened to my complaints of muscle twitching, muscle cramps, terrible fatigue, balance issues, blurry vision, double vision, arms and hands numbness, legs and feet numbness, memory issues, bladder and bowel weakness, and so much more he decided himself to send me for a brain MRI and to see a immunologist. I did all this and of course I had spots in my brain. My immunology blood work up wasn't all that great either so she sent me to an MS specialist. Right away the MS specialist said yes it MS but we need to do a complete MRI workup and a spinal tap. The testing was over a month later. She did find out that my liver enzymes are super high. She said for me to start on rebif right away but of course I declined. I ended up in the ER a few weeks later with the headache of my life and pain in my right leg and I was dragging it. So since I was already admitted to the hospital as a patient they went ahead and did the MRIs and the spinal tap. UGH!!! That was a horrible week in the hospital. I honestly think the doctors (because of course the MS specialist I was seeing couldn't be bothered to see me and I got the neuro that was on hospital duty that week. They finally released me after 7 days and sent me home with a pain med script. They told me my spinal tap results would be ready in a week. This MS specialist calls and tells me my spinal tap was fine.

So then I panic! then what is wrong with me. I made another appointment with a new neuro for another opinion. He tells me my spinal tap says indicative to MS findings. I was so mad and why did she lie to me. So I am officially diagnosed now.

I've only had what the doctors have ordered and I've never been anywhere that I would have picked up Lyme disease.

Pineville is about five hours from New Orleans where I'm at. I've seen an immunologist in January and I'm sure it's one of the things she tested for along with lupus and a few other immune diseases. I read up on Lyme disease and not to say I'm a doctor but that's definitely not it.

Thanks for helping. I appreciate it.

Hi Cryss,

Listen, I know you said that it definitely isn't Lyme but all of your symptoms sound exactly like mine. ( I have lyme) The docs said MS because I didn't have any joint pain I had; neuro pain, numbness in extremeties, anemia, brain fog, eye issues, and then...voila heart issues popped up and they said lyme. It might be worth checking out through ilads drs. anyhow.

I will tell you I sat next to an 18 y/o and a 20 y/o at my last treatment. Both diagnosed with MS and that is where I would be if I hadn't figured out what was going on.

I wish for you to get an answer soon and help for your health issues!

I am the head of a Lyme support group in upstate ny and my son lives in New Orleans. He has Lyme and desperately needs long term treatment. Is there any other dr closer than pineville that recognizes chronic Lyme and will treat it? Possibly thru Tulane public health school? He was given just 3 weeks of doxy and has mono as well. Thanks in advance!