Have MS but don't

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Lendi
Regular Member


Date Joined Mar 2018
Total Posts : 249
   Posted 5/31/2018 10:12 AM (GMT -6)   
Hi, just wondering if anyone else has had some experience with this issue.

I was DX'd with MS several years ago. I had a few lesions that looked like MS lesions, on at a place that usually only gets lesions from MS. I also had other issues that led to a MS DX assuming...

I was started on rebif and wound up on Tysabri for 4 years. I kept getting lesions but not a lot, none really big and none anywhere other than my brain. Most of those have come after I went off MS drugs. My neuro who was treating me moved out of state so I had to do a search for a new one. I saw one, then another etc.

They all said that it wasn't MS because it was only in my brain but they didn't know what caused them. They kept me coming back every 3-6 months but I finally just quit because they also didn't have answers or any new ideas. I do see my PCP often, however.

Anyone else have lesions for an unknown reason? I would appreciate any thoughts.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 243
   Posted 5/31/2018 2:40 PM (GMT -6)   
Hi Lendi.

Have you had testing, other than a brain MRI, that might indicate MS as the cause?

Unfortunately, it is not uncommon for MS to be misdiagnosed. Some who have had a diagnosis of MS, sometimes for many years, will be undiagnosed, some go on to be re-diagnosis of MS and some do not.

This article explains the misdiagnosis of MS:
https://www.everydayhealth.com/multiple-sclerosis/symptoms/conditions-commonly-mistaken-multiple-sclerosis/
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

Lendi
Regular Member


Date Joined Mar 2018
Total Posts : 249
   Posted 6/18/2018 3:11 PM (GMT -6)   
Yes, the neurologist who diagnosed me was very through. I've seen a few in between but they have all done at least most of the tests. I haven't seen one in about 4 yrs because I don't see the point. They always say to come back in a year etc. If they don't have any idea what's wrong and can't help me why waste my time. I do have a knowledgeable PCP though and do see him often. Every 3 months minimal if all goes well. More often if not.

cyclinglady
Regular Member


Date Joined Aug 2015
Total Posts : 211
   Posted 6/22/2018 2:03 PM (GMT -6)   
Celiac Disease can cause brain lesions. Not all celiac disease patients suffer from GI issues. Many celiacs are even “silent”. Has it been ruled out? A simple blood test is a start.

https://www.cureceliacdisease.org/faq/are-white-matter-lesions-commonly-found-on-the-brains-of-those-with-celiac-disease/

https://www.hindawi.com/journals/crinm/2013/576921/

Lendi
Regular Member


Date Joined Mar 2018
Total Posts : 249
   Posted 7/11/2018 4:18 PM (GMT -6)   
I do have gastritis and diverticulitis so it's possible. I had scopes done both ends but they didn't say anything about celiac.

Thank you both for the links.

Lendi
Regular Member


Date Joined Mar 2018
Total Posts : 249
   Posted 7/19/2018 1:36 PM (GMT -6)   
Just an update. My Dr. wants me to go to another neurologist who also does sleep medicine as well. There have been several newer symptoms show up as something. My exam wasn't the greatest, either. I really don't want to do this...again because they will likely tell me the same as the others. I will once hear the same message; There is definitely a problem but no idea what or why. See you in a year.
What if trials of this life are Your mercies in disguise.

Laura Short

"Blessings"

FM/CFS, BP, gastritis, diverticulitis, anxiety/PTSD, adult ADD, hypothyroid, brain lesions, sleep apnea that doesn't respond to a c-pap as far as sleepiness/fatigue goes, insomnia and only sleep in stages 1 and 2 and REM with a tiny bit in 3 and 4.
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