MRI didn't show active disease

After all the symptoms I have had since 3/25 my MRI report came back stating that although there was some thinning of the myelin there was no active disease at this time. The symptom that led me to this site was the MS hug. That lasted for about 2 months and at times I could swear one of my ribs was going to crack when the muscles were spasming. I also had pain in between my shoulder blades. My MRI on my back came back showing 7 bulging discs in my C1 - T1 area which could explain that pain. However, I saw a neurosurgeon last week and he said that there was no way that the bulging discs caused all of my symptoms especially the "hug". For the last 6-8 weeks I've had dizziness and loss of balance and I've been walking with a cane. Last week I went to an ophthalmologist because my right eye kept getting really red and I was seeing light flashes in my peripheral vision. I had inflammation in my right eye, a little bit in my left eye and the optic nerve in my right eye was swollen. I gave her a brief synopsis of all the symptoms I'd had and told her about the MRI report. She said "well you know that MS can affect the optic nerve". I told her that I had read that.

I am now wondering if I could still have the early stages of MS. Has anyone else here had negative tests results only to be diagnosed later? I feel like I still have no answers as to what caused all of my symptoms (I didn't list all of them as I have a 1 1/2 pg document that I've kept track of them on). Most of the symptoms have now subsided except for the dizziness and the eye issues.

22 Replies

  • Yes I was told several times I didn't have MS, but suddenly on 6/6/16 MS neurologist says I have had it for 52 years!!!! Soooo angry! At medical field! Now that I am 70 kinda dangerous to take anything. Aubagio gave Ms pneumonia and Capoxone gave me very horrible all over rash, so suppressed immune system makes for bad reaction to ant DMTs. But very thankful I lasted this long!

  • MsMeli54, I can empathize with you-the fear and the frustration. It took 9yrs for me to be diagnosed. That was based on my lumbar puncture-my MRI was still clear. I know others with MS who have also waited years before a definite diagnosis.

    First, I hope and pray you don't have MS. But until you know for sure, or you are given a different diagnosis, I would advise you to see a neuro who specializes in MS. Log your symptoms and share them with your doctor. In the meantime, we're here for you. We remember what it was like to be where you are. We're here to answer questions or just provide a listening ear. 💕

  • Thank you so much for your reply. The neurosurgeon that I saw last week asked me if the neurologist had done a lumbar puncture and I told him that he hadn't mentioned it. I'm going to ask him about it at my next visit.

  • Hi MsMeli54! I had one of the quicker diagnosis only took 9 months, 3 primary care doctors and 2 neurologists. Between my symptoms, history and test results, the diagnosis was obvious. It just took me awhile to find doctors that believed me.

    A lumbar puncture was one of the tests I had so I agree with Tutu that you should look into it. Did your MRI just cover your back or did they do your brain and brain stem too??

    Also...just be aware when they say that the MRI didn't show evidence of active disease that DOES NOT MEAN disease isn't just means its not showing activity in an MRI. This distinction is important.

    A brilliant neuro researcher I knew always said "Absence of evidence, is not evidence of absence." Good luck!

  • Thanks for sharing. I did have a brain MRI with and without contrast. I'll keep plugging along until I get some answers.

  • Raingrrl wie gotta remember that quote. Might tell my doctor!! Since they don't believe much of what I say anyway! "Absence of evidence is not evidence of absence!"' Course, I will just be told I read too much and disagree with doctors too much! Can they blame me? About 7 misdiagnosis in 15 years! We know our bodies- we live in them 24/7/365x 70 for me!

  • MS is very silent in our bodies. I walked around for 10 years with symptoms that would appear and disappear. As time when by I had vision blurred for a few minutes than ok. This was not everyday .

    By the time my MS was getting to show daily I had walking problems back pains & tingling skin. I ended up in ER because my friend thought I was having a stroke! They said it was a mini stroke at first

    Then another neurologist took a second look.... No, you have MS. At age 55 ??? ;0-/ " who me" ??? ( I did not want to )believe it at first.

    Now I am 58, taking DM T pills

    so far I won't complain. Things could have been worse :0)

  • 5alive5 same with me-diagnosed at 69?? You crazy! But....further clinical testing and more MRIs, -"you have probably had this since first bout of temporary blindness in left at 17!!! I was furious! Still am when I think about medical field! I was diagnosed with so many different "diseases and Syndroms" and on so many meds (12) for them all- just furious! I was sent to a neurologist by my primary because I had been diagnosed with "Burning Tongue Syndrome " years ago (everything spicy -even pizza- burned my tongue) by a previous doctor. He wanted to know if it was neurological so sent me to my first neurologist and discovered I couldn't walk a straight line (thankful I never been stopped by policeman🤣). It went from there, and finally finding a MS specialist at 69, no, your fallls, cognitive fog, tremors, horrible back and neck pain and spastic it's innlegs were all MS!!! Not fibromyalgia or CFIDS or low BP or low thyroid or bi-polar or PTSD or migraines or allergies or (forget the rest of them). All wrong - just MS (my cousin died of MS in the 80s) so yea I have NO confidence in any doctors! But must keep going so I can keep going!! I totally understand!

  • agapepilgrim I was diagnosed at 69 also, and I'm now 75. Been on copaxone since beginning and have balance issues, bowel incontinence plus cognitive changes. You are the first female that I've known who was told it was MS.

  • Joc-42 I don't understand why you say I am the first female to be told it was MS. What do you mean?

  • Joc-42 i am glad you can take Capoxone. It is least damaging to immune system. But I was only on it for 5 months when I broke out in horrific rash with blisters, etc and after 4 different specialists, it was allergic reaction to Capoxone (clinical trials said 2%). Now I am waiting for Tecfidera. I don't have much hope that I won't have allergic, but I will try it because my symptoms and brain damage (MRI) got much worse in last 4 years. God bless you

  • Symptom appeared and diagnosed at 68yrs. Just a little over a year ago.

  • There are so side effects to each of these MS drugs. My compassion to each of you with such severe reactions.CallfeeChic, I guess we were both diagnosed in late 60's. I would have guessed you were younger. 😊

  • Thank you- prior to MS I was pretty athletic. Ride my bicycle 150-200 miles a week, swam laps, & tried to walk after dinner each evening. Now I'm so sedentary it has reduced my bone density. My mind wants to do more, but the body says not now.

  • MsMeli54, I had what may been a CIS about 20 years ago, but CSF and MRI were normal then. Many years and symptoms later, I was diagnosed due to a relapse. It's a frustrating course we find ourselves in trying to get diagnosed correctly. Have you had a lumbar puncture or any other tests?

  • I don't know why it stills takes for ever to be dx. The longer we wait on doctors to figure it out. The worst off our bodies be down the line. It took YEARS for me to be dx. My symptoms started to get worst in 2014. Still no dx. It took me to have stroke in October 2016 to finally get dx. Even at that time they didn't want to say. They just referred me to neurologist. Base on symptoms I dx myself a week before being hospitalized. I went to my husband and said I have MS. He was in denial and said you don't have then symptoms. I said I do, my body can't take it no more.

    I say all that to say early dx is the best. MS breaks the body down for some of us! It took me out! I'm not working. Everything I do is with a wobble and pain. The foot drop is no joke! My rollator is my best friend. Like the other MS patients have mentioned. Get a spinal tap, that should shut all the docs up that are in denial of stating what's what! Good luck with your health!

  • I am sorry you are going through this but your story is a common one. I knew I had MS long before the doctor dx me. Because have never had the eye issues they wouldn't believe I had MS. They did the MRI on the brain and it didn't show anything active. He said he would see that much placket in a 15 year old brain. It wasn't until they did they neck MRI that they found an active lesion. Then when they did they lumbar puncture they knew for sure. It was a long process. I hope they find out for sure soon because the not knowing is the worst.

  • Yes, symptoms in teens twenty's. I'm 39 now. Diagnosed 2011 c-2 8mm. Learned that my 2007 MRI showed lesion at c-2 5mm but Drs and radiologist failed to report. I also have several brain lesions this whole time that are in the same spots but my MS Dr won't acknowledge them as MS lesions until the scaring grows into a bean shape. I can feel these in my brain and spinal cord during attacks that shock and shoot and spread through nervous system. I think there is something else that can cause Ms hug can't remember um jullian Barr maybe spelled wrong. It's frustrating wanting an explanation of what's happening and why, I know. I have no idea how long it takes for scaring lesions to develop into a bean shape. Good luck

  • I found it and it's Guillain-Barré Syndrome. I don't think that's it though as it usually starts with tingling in the legs and I haven't had that issue. All of my symptoms have gone away except for the balance problems. I still have no idea what caused all of my symptoms. :(

  • Hi there, I was just diagnosed in march if this year and my main symptoms were shoulder blade pain and balance. Over two weeks, I had MRIs of brain, spine and lumbar - all with and without contrast and was diagnosed with MS within another week //there were lesions in all areas. My dr said that the spinal tap test isn't really used diagnostically anymore. I hope you can get the right tests and doctors to evaluate your diagnosis💗

  • I have 20+ white spots in my brain that doc won't diagnose as MS. MS lesions on spine T2-T5 that are MS. Yes, I have many MS symptoms, fog, fatigue, tingling and numbness that is now mostly knees down. This disease is a mystery to those that endure it and those that try to help treat it.

  • I noticed on my last Dr. Notes that finally after 5-6 years of brain flares spots on every MRI the MS doc is calling the spots on my brain white matter disease. Along with the spine lesion she already acknowledged as (CIS) MS.

    I still have frequent attacks even if the MRI shows not active. I know my own body better than them. Not everything coordinates with MRI. Half the time I think the MS drugs themselves are just designed to make less visible flares wether they're actually helping the MS I don't know. I forget who started this post but trust your body, get cervical thoracic and lumbar MRIs besides the brain. And yes spacticity anywhere sucks bad. I know in my MS hugs my lungs literally don't expand, this has been witnessed by my primary care doctor. It feels like I can't breath and usually sets off anxiety and panic then I have to take alprazolam just to stop freaking out

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