Just Diagnosed with MS

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CryssyNichole
Regular Member


Date Joined Oct 2012
Total Posts : 25
   Posted 4/23/2013 4:28 AM (GMT -6)   
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.
Mother of three beautiful children ages 12, 7 & 6 and the wife of a great husband who really doesn't understand chronic pain.

Sufferer of Bipolar I, Chronic Pain, Migraines, anxiety and just diagnosed with MS.

ToddPaul
Veteran Member


Date Joined Nov 2012
Total Posts : 884
   Posted 4/25/2013 9:27 AM (GMT -6)   
Those symptoms also align with Lyme and a spinal tap is not a very accurate way to test for it. Have you ever had a Western Blot through a top lab like IGenex?

CryssyNichole
Regular Member


Date Joined Oct 2012
Total Posts : 25
   Posted 4/25/2013 12:13 PM (GMT -6)   
I've only had what the doctors have ordered and I've never been anywhere that I would have picked up Lyme disease.
Mother of three beautiful children ages 12, 7 & 6 and the wife of a great husband who really doesn't understand chronic pain.

Sufferer of Bipolar I, Chronic Pain, Migraines, anxiety and just diagnosed with MS.

ToddPaul
Veteran Member


Date Joined Nov 2012
Total Posts : 884
   Posted 4/25/2013 2:14 PM (GMT -6)   
I see you live in Louisiana and there's Lyme there so you don't have to go anywhere to get it. I was bit twice but wasn't hiking in the woods or camping or anything. about half of people with Lyme don't even know they were bit. Below I'll attach a link to a thread on another forum with people in your state that have Lyme. There seems to be a doctor in Pineville that specializes in Lyme and will test you through IGenex which is known to be one of the best labs for diagnosing Lyme. Up to you if you're willing to accept a diagnosis that MD's seem to favor causing many to be misdiagnosed.
 

CryssyNichole
Regular Member


Date Joined Oct 2012
Total Posts : 25
   Posted 4/25/2013 3:25 PM (GMT -6)   
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.
Mother of three beautiful children ages 12, 7 & 6 and the wife of a great husband who really doesn't understand chronic pain.

Sufferer of Bipolar I, Chronic Pain, Migraines, anxiety and just diagnosed with MS.

ToddPaul
Veteran Member


Date Joined Nov 2012
Total Posts : 884
   Posted 4/25/2013 4:34 PM (GMT -6)   
Ok well I tried. I'll just leave you with this. Any immunologist that tests for Lyme uses tests that are less than 50% accurate. Also, you would have to "hang" out on the Lyme forum to see that your symptoms are all Lyme to a tee. Actually, Lyme and MS symptoms are exactly the same. Hmm..makes you wonder. You don't know how many people on the Lyme forum were misdiagnosed with MS. I'll end there and wish you luck.

Post Edited (ToddPaul) : 4/25/2013 4:57:20 PM (GMT-6)


opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3576
   Posted 5/8/2013 7:09 PM (GMT -6)   
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!

CryssyNichole
Regular Member


Date Joined Oct 2012
Total Posts : 25
   Posted 5/9/2013 10:22 AM (GMT -6)   
Thanks so much for your info. I'll talk to the dr.
Mother of three beautiful children ages 12, 7 & 6 and the wife of a great husband who really doesn't understand chronic pain.

Sufferer of Bipolar I, Chronic Pain, Migraines, anxiety and just diagnosed with MS.

Felicite
New Member


Date Joined Jul 2017
Total Posts : 1
   Posted 7/7/2017 12:51 PM (GMT -6)   
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!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14831
   Posted 7/7/2017 7:28 PM (GMT -6)   
Hello Felicite & welcome to Healing Well. You have posted in the MS forum. I suggest that you post the above in the Lyme forum here at Healing Well. It is a very active forum & you may get help over there.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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