MS that doesn't show up on MRI?

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Alison0525
New Member


Date Joined Feb 2015
Total Posts : 8
   Posted 2/24/2015 10:10 AM (GMT -6)   
Hi!

I wanted to get some feedback on everyone on if your MS showed up on an MRI right away. I have been having health issues for a while. Constant fatigue, numbness/tingling feelings, electric shock feelings (particularly when I turn my head certain ways), headaches, back/neck pain, night sweats, etc. More recently, I had an episode where the entire right side of my body got very heavy and I passed out. I ended up in the hospital for a few days, and nobody there could figure out what was wrong with me. The doctor in the ER said my symptoms sounded like MS, but my brain MRI came back fine.

Since being in the hospital, I have been feeling even worse and had some more strange symptoms pop up, mainly muscle spasms that happen when I lay down at night time. I have gone to several specialists trying to figure out what is going on. I went to a neurologist, who send me for another MRI (this time of my brain and spine with contrast). That came back fine as well. When I went back to the neurologist, he told me he honestly thought I was going to have MS based on my symptoms, but I don't because my MRI was fine.

I have been doing some research, and am reading that it is possible to have MS and have a clean MRI at first. I really like my doctor and want to trust him, but now I am scared that maybe I do have this after all? I know I feel like crap and while I don't want to have MS, I would like to have an answer on why I feel so bad.

Thanks for any feedback!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 2/24/2015 6:54 PM (GMT -6)   
Alison,

I'm sorry you are having health issues. Your symtpoms are disturbing. There are rare cases in which a person has MS and no lesions are present. Many people who are suspected to have MS who don't have lesions are put on a watch and wait regime until lesions show up. If lesions don't show up after one year, then MS is usually removed as a possibility.

Your symptoms could be caused by other diseases. You should consider Lyme first and foremost. It closely resembles MS.

Most doctors won't give you a positive diagnosis of MS until lesions show up. However, you must have more than just lesions in order to get an MS diagnosis. Many diseases cause lesions. Typical MS tests would be: MRI of spine and brain, evoked potentials (extremities, vision and hearing), lumbar puncture, blood work, and a thorough neurological exam.

MS treatment is extremely expensive. Meds run $3,000-$10,000 a month. The meds have significant side effects. No one is going to let you try meds as a way of alleviating symptoms. You won't receive treatment without a diagnosis. Many MSers find the meds so abhorrent that they choose to do without. Lifestyle changes and alternative treatments can help some to stave off progression.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Alison0525
New Member


Date Joined Feb 2015
Total Posts : 8
   Posted 2/25/2015 9:38 AM (GMT -6)   
Thank you for your reply Gretchen! I actually started out on the Lyme forum ;) I did have a Lyme test done that came back with some positive bands (though not enough for the CDC to diagnose me with it). I was looking into that, when the neurologist told me that based on my symptoms he thought for sure I was going to have MS. So that's when I started worrying that maybe that is still a possibility even with the clean MRI. I have an EEG scheduled this weekend to 'rule out anything else' so I guess I will see what that comes up with and decide which path to go after that.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 2/25/2015 10:13 AM (GMT -6)   
Ok. An EEG is not typically used to diagnose MS. It can rule out things like epilepsy, narcolepsy, and a few other things. Typically evoked potentials test is used for MS. It is sort of a close cousin to EEG testing. It specifically tests the central nervous system and the time it takes sensory stimulation to travel along it. It can show slowed response times that are often associated with demyelnation.

Keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

courtneyc1522
New Member


Date Joined May 2015
Total Posts : 2
   Posted 5/18/2015 1:09 PM (GMT -6)   
I been to multiple doctors. I gotten mri and nerve tests and the whole nine yards. All they found was spots in my brain and 8 bulging and hurniated discs. I am completely numb from head to toe and my nerve pain is bad, i also have perminant nerve damage. I get shocks real bad twitch forget things sometimes. tired. colapse and fall when the shocks are so bad and sometimes faint. constant head aches from the shocks. I feel nothing on the outside all my pain is in the inside. Dr says he dont think it is MS but i am having a lot of their symptoms and it seems like it is getting worse. i been to 5 different doctors and i havent gotten anywhere with any of them. Limes disease was already ruled out. does anyone else know what else it could be?

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 5/19/2015 1:49 PM (GMT -6)   
Courtneyc19522.

Unfortunately MS isn't the easiest thing to diagnose and there is no one definitive test that says you have it.

MSMom44
New Member


Date Joined Jul 2015
Total Posts : 1
   Posted 7/2/2015 12:28 AM (GMT -6)   
Hello all. My name is Jennifer, and am new to this forum. I have MS, sick since 2008, and wasn't diagnosed until August 2013. It is very hard to diagnose, right from the start, my brain MRI showed 10 leisons on my brain, and although it was suspected, they could not definitively say it was MS. Well, my legs would go completely numb, I would just fall wherever I was. I had incontinence, and would spend 1-2 weeks in the hospital on intraveneous steroids until feeling came back, then they would send me to phsical therapy. Still, no answer. Dr after Dr after Dr, developed depression, anxiety, bleeding ulcers, I would go completely blind in my left eye, again month after month, year after year in the hospital more than home, which I ended up losing along with everything. Homeless and sick with no one knew. Finally, a neurologist that did something, a spinal tap. Came to my room a few hours later and said, well, it's definite, you have MS. No one ever even mentioned that! I was then sent to a very depressing nursing home for 7 months, just laying in bed, getting more and more depressed. I have a 10 year old son for goodness sake! Someone help me! I have had full custody of my son since my husband left and married his mistress! Now I have to hand over my son so he can have a nice normal life?! How devastating for both of us! I guess what I'm trying to tell you is, don' t give up, and research yourself! If I had, I truly believe it could have been found years before! Knock on wood, this is the first year, thus far that I have not been in the hospital! My longest stretch thus far!! I am having flare ups, but I do all I can to handle some of this on my own!! I have been homeless for over 2 years, and after huge fights and disappointments, and the power of prayers and God, I found tremendous help from St.Vincent De Paul, I just got disability, and finally moved into a small one bedroom apt, my son is absolutely exstatic, and although he still has to stay with my ex for school and such, he is with me 5 days/week since school is out and I have a car after 5 long years! Still a long road ahead, but if I made it through all this so far, I know and believe if you are determined, and really speak up to these Dr's, the answer will be found. I am so sorry to hear of your suffering, I really get it and of course I will be praying for you, but one thing I would say EVERY DAY: Someone out there is way worse off, and I pray for them! I wish I had more answers, but maybe something I said will help?
I do have a question, I have been sleeping for like 3 days straight without waking up for the last month, anyone else have this?

Prayers to all,
Jennifer (MSMom44)
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