Sigh. Guess I need to ask for a referral to a rheumatologist now (I have an appointment with my primary next week to do this).
They found 5-6 lesions (I forgot to get an actual count, just too many for my age and I'm 45).
They didn't see them on my last years MRI but my new neurologist went through my scans from last year and says she feels confident they were there last year, they were just not very good pictures and this years were clearer.
They don't know why I have lesions. They said it could be from my migraines or who knows. They said they don't know a lot about why some people have lesions (this seems a bad answer!). She said they aren't in the right place for MS. They are "non-specific".
I see her back next year for a repeat exam and MRI's to make sure there is no new activity. And of course, call her if I have any changes.
Thank you all so much for letting me hang out here!! It's a negative for MS but you all have been so kind to me and I truly didn't know which other board to go on. If I ever get a diagnose I will update - I'm hoping the rheumatologist has some ideas!!
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cheshcat my 1st Neurologists told my that also.😕 That they were migraine lesions. But he missed or just didn't care about the others. I am Happy that she said no to MS!😁 Of course we don't wish it on anyone! The question is, do you believe, trust your Neurologists you just saw? Or do you feel you need a 2nd opinion?
Either way, You are Always Welcome here! You are part of the family!💕 And l know lm not speaking just for myself here!😊
Thank you Jes ! I guess I'm still on the worried side it is MS. Only because all my symptoms are so similar to all your symptoms. But if they say no MS, then obviously I'm thrilled!
This is my second opinion, getting another would be a 3rd. I suppose I'm ok waiting another year. If I have a relapse, I'll be going into ER. I need everything documented much better then I was a year ago.
I figure this new doctor can coordinate with my neurologist at the very least. I looked up the rheumatologist who is with my clinic and he got good reviews. So crossing my fingers!
Firstly Cheshcat, I hope your dx is right and that you don't have MS, but secondly, please don't think you can just get up and go, we will all miss you . I am sure there will be lots of topics on here that you can contribute to. Blessings Jimeka 🦋 🌈
You all are so sweet here! I honestly think this is the most welcoming board on the internet, I mean that. Even though I was never diagnosed with MS, you all have been so kind to me!
I have 20+ white spots in my brain that my doc is not ready to call lesions or MS. I have MS lesion on spine T2-5. Hang in there. I trust in my doc and am sticking with him.
Something we may all want to consider, and I find it helps my confidence, I research potential doctors before I make appt. I check out where they went to school, and their medical credentials.
I guess for the most part MS seems to be slow moving (for most?) so I thought waiting another year for a repeat MS Exam and MRIs is not the worst idea. I don't want medications I don't need. And if I have a relapse I'll be going to ER. Until last fall, I did so bad on my end, getting things documented. I know it's a stupid thing to say but - I didn't want to be sick.
At this point I'm assuming it is not MS and going to get myself to a rheumatologist, maybe he can rule out even more things. I feel like I've already had so many tests. There is a very weird mental trip when everything comes up negative. Obviously, I want everything negative, but there IS something "wrong" and it just looms out there in a weird unknown.
With all these tests and medicine, it's odd they don't know more about our brain.
What does your doctor think your lesions are from?
Without going into allot of detail, I'm still in first year of symptoms. Went numb tingling last June 28, spent a month going to er, ortho doc then had to wait for local neuro, who had 1 mri of brain, cervical and thoracic spine done. that doc "Called" me, said you have ms, gonna start you on Tysabri, get affairs in order. Don't get upset, you are 68, have had a long life and just wrote me off. I requested all records to be sent to UCSF MS Clinic and requested appt. there. I was assigned to the MS clinic director. He said he would not of diagnosed me with anything from the low quality MRI done locally, then said don't start Tysabri or Tecfidera because I am JCV positive.. I now have the MRI's every 6 months and so far there has been no change in 20+ white spots in brain. Only lesion is Thoracic spine T2-5.
CalfeeChick that is a long hard haul ❤️ I'm glad you are with a MS specialist now. I hope your medication and treatment helps/stops more lesions from forming.
I am on only "symptomatic" medications. Gabapentin for the nerves misfiring and Modafinil to help with focus and fatigue. Still researching MS meds.. a little anxious about side affects. I am okay with that for now. Thank you and hope you get answers you need. Just curious as to why the rheumatologist?
I guess because I'm not too sure who else to see. My mom has rheumatoid arthritis. While I do get pain, I don't have her arthritis symptoms and she doesn't have my neurological symptoms. But there are so many auto-immune diseases and rheumatologists deal with them. My mom is worried about a vascular auto-immune. I have terrible Rosacea, so I'm worried about Lupus.
I guess more then anything, it's so hard to not know. When your body stops behaving normally, I really just need to know why and if there's something that can be done to help/stop damage.
I read an article that said it takes an average of 5 years and 5 doctors for someone to be diagnosed with the correct auto-immune disease.
This was from my Radiologists report. My neurologist said 4-5 would be considered "normal" for my age:
There are a few focal T2 hyperintensities identified in the deep white matter. These lesions are nonspecific however slightly abnormal for age. Differential considerations include premature microvascular disease, sequelae of migraine headache, the sequelae of prior trauma, or possibly demyelination in the appropriate clinical setting.
Do not leave this chat room/board please cheshcat . Let's both wait a while until we are given a diagnosis of something else before leaving. Until someone tells me what I have I am still staying with MS.
cheshcat , I know we all have been waiting for you to get your MRI results. Like everyone else here, I am happy to hear that (as of now) you haven't been diagnosed with MS. I pray you never are!
I know it isn't easy to do, but try to push the MS out of your mind for now. See your rheumatologist and get that appt and related tests done. Then try your best to move on-live your life-but document everything and return to the ER if your symptoms flare again. You have a good plan!
You know something isn't right and I hope your doctors discover what it is sooner than later. Dealing with the unknown is the hardest thing! And as others have said, stick with us until you get a firm diagnosis elsewhere. We'd miss you! 💕
That is my plan. To put it out of my mind and move on. At some point something will show up but until then, it is harder then I ever thought to be in the "unknown" category.
I very much appreciate all the support of this board!
cheshcat First of all, you are a part of this community so please stay with us! My first MS large scale exacerbation was in 1989...but I was not diagnosed with MS until 2010 despite years and years and years of odd events and puzzling episodes. There is still much to learn about the variability of MS symptoms and disease progression. Stay with us. By sharing your experience, you may be helping with another person's search for answers.
Whatever they decide I have, I share so many of the same symptoms as you all. It's so easy to relate with you all!
MS does seem a weird disease and I was happy she scheduled me to come back next year for a repeat exam and MRIs. I'm very glad this board helped me change to a specialist!
Have they checked your Vitamin B12 count? My MS diagnosis has been changed to a B12 deficiency. My body does not hold B12, and believe it or not, the lesions and symptoms which mimicked MS caused by this. We are going with this diagnosis even though no reason given why this happened. Started all this in 2014, MS diagnosis given in 2016, MS specialist says B 12. I am trying to adjust to this news, figuring out best time frame for shots to keep my level between 600-800. Will see how this diagnosis goes now. Good luck to you.
Blue51 , I can imagine the emotional rollercoaster you've been on with the change in your diagnosis. I assume your B12 diagnosis was recent? How often will you need to get the shots? You said a MS specialist switched your diagnosis. Was this the same person that diagnosed you in 2016? I've heard how the B12 deficiency can cause a myriad of symptoms and how they can mimic MS. I pray the shots help--that they provide relief from your symptoms and that your specialist was right. Sending you a hug. 💕
Tutu, around this time last year I was adjusting to my MS diagnosis and being put on Aubagio from my local neurologist. And I am having some difficulty adjusting to the information about having a B12 deficiency and wondering why it hadn't been caught sooner! I did not know a vitamin or lack of, could cause such havoc to a person's body! The MS specialist is at Rush University in Chicago. He was never convinced I had MS and kept in touch with my original neurologist who had to resign due to illness and my neurosurgeon. Found a new neurologist, best of the lot, but not my favorite and he is still convinced I have MS when I told him of new diagnosis. So was finally able to return to Rush when another new neurologist suggested it. After a visit in January and May, I have the new diagnosis and told to get off the Aubagio! We are still working on how often I will need to get the shots. We are doing once a week for a month then a blood test to check the level and then try to come up with the best solution. The shots have so far done nothing to help my symptoms and I honestly don't think they will, but my B12 level has gone up and we need to keep it at the right level. If I have the right diagnosis, and I hope it is, then I shouldn't have any new symptoms. Thank you Tutu for your reply, prayers and hug. I will keep you in my thoughts as well. And am sending a Big Hug back to you. : )
Wow, I'm sorry for the run around. A vitamin B12 deficiency would certainly be an easier diagnosis to swallow. I assume your doctor will be able to regulate your B12 levels and once stable, does he expect your symptoms to disappear? I would think that would be the expected outcome. Please let us know how you are doing and if you feel the shots are working. I have a friend with both MS and B12 deficiency. She gets regular shots. I hope things settle down for you. 💕
My PCP and I are trying to find the correct shot schedule for me. I had been doing a shot a week for this month and will have to see where my level is at, and then we will decide what regimen will work best for me to the keep the B12 level between 600-800. Since I have lesions on my spine that caused the symptoms I have today, I do not think the B12 shots will help, as it has been since 2014 that most of my symptoms appeared. If I do have a B12 deficiency, then the shots will keep me from getting any new lesions or symptoms. Once we figure out my shot schedule, I will update you and let you know how things are going. I hope I have some good news! My best to you and your friend.
I read a little about B12 and MRI detection of lesions on the spinal cord. Very interesting Blue51 . It sounds as though you question the new diagnosis. I hope you get confirmation one way or the other, soon. But if I had the choice, I'd go with the B12 deficiency. Praying all goes well for you. 💕
Yes, this whole B12 thing is very interesting. The longer I go without any new symptoms, the better I feel about my new diagnosis. Thank you for all your good thoughts and feedback. Wishing you well, and a good weekend!
Thank you so much for sharing Blue51 - I have had my levels checked but I wonder if there is a better test?
I am so very sorry though that you have been through all that! I can't imagine how hard this is for you ❤️ I started seeing a therapist last year. It's much harder, mentally, then I ever thought. I hope the b12 is your answer ❤️
MS is such a difficult disease to diagnose, and I would have never thought that a lack of Vitamin B12 could cause lesions on my spine, and mimic the symptoms of MS. Out of all of the blood tests I have had lately, lack of B12 was the only one to come back in a negative way. Seeing a therapist is a good thing, and I am thinking I may go again myself. I have found a therapist helps me sort things out, make decisions, and get more confidence back in myself. I certainly hope that you find the answers that you are looking for. Wishing you good days and some go news in your future. : )
cheshcat , I know it's really hard to feel as though one is in limbo. I'm sure I'm hardly the only one who had negative test results initially, but had symptoms for years before getting a definitive diagnosis. Medicine doesn't have all the answers, despite its many advances. I'll be praying you find the right doctors and tests to find not only a diagnosis, but the right treatment, and I'll pray you find some peace and rest while you wait. In the meantime, I'm glad you are here to find support. We give one another support in dealing with our bizarre symptoms despite any diagnosis.
I know this post is two months old but I just saw it now and thought I would share my experience.
Like everyone else has said, I too am happy you haven't been diagnosed with MS.
In Nov 2014 I went to the ER with a debilitating headache. I hadn't ever suffered from a migraine so I didn't know what was happening. At that time, I saw a neurologist, had a lumbar puncture & an MRI of my brain. The results of the lumbar puncture were normal & the MRI showed a few "spots" in my brain. At that time, I had no other symptoms. The neurologist explained to me that as we age, it is quite normal to have a few "spots" in our brain. That was the end of it. I was diagnosed with exercised induced migraine.
In November 2016 I was referred to the same neurologist but now I had other symptoms specifically numbness/tingling in my left hand that never went away, occasionally radiating up my forearm.
This time, the lumbar puncture was positive & the MRI showed 25+ lesions in my brain & one in my neck.
I was diagnosed with RRMS in March 2017 at the age of 49.
Obviously each individual is different, I just wanted to share my story with you because initially I had a severe migraine which lead to my MRI. I believe the initial diagnosis was correct but now know that the few "spots" that were seen in 2014 were MS lesions.
Thank you so much for sharing your story Carrie ❤️
I'm still waiting to see my rheumatologist. I've tested positive for Rheumatoid so far but I still wonder about Lupus, because of my neurological symptoms.
I was just thinking of you all here at the MS board. I happened to meet someone I spent the afternoon with and she has MS. It's very weird because we have so many of the same symptoms. I'm only assuming I must have some sort of CNS involvement, now if they would only figure it out! It feels like this entire diagnosis process is like watching paint dry. It only seems to be urgent to me. My bladder has been having horrible problems and now I'm waiting for my urology referral. My daughter said oh good, another doctor you can't get into for months. I sure hope not!
I do really appreciate you sharing. I wish the entire game of "what auto immune disease do you have" had a short cut option.
Daring_Greatly Your story sounds exactly like mine. I went from 1 spot in 2002 to many in 2005, when they confirmed MS. The only symptoms I had in between were horrible migraines. The neuro at Mayo that diagnosed me said that he believes that every time I had a migraine in those years, I got a spot. Most neuros still don't believe that migraines are connected to MS. Common sense to me says they are.
Actually that really sounds like good news....I was told lesions could be mini strokes,TIAs, and then plaques from MS, now need a retest for JCV virus.It is a common virus but I guess being tested for that in the beginning may help treatment in the future....Do they do regular vit D checks?I notice also that thyroid seems to hit many here....?
I haven't had a vitamin D in about a year. It was good last time. I do want the rheumatologist to check my thyroid because I can't seem to loose weight. I hope the rheumatologist does a full blood work panel! I feel like I'm crawling to that appointment, I hope I like him because I may cry if I don't, I need some relief!
I sure will say my prayers.A new doc he has your attention!Today is one of those feel like I'm crawling with my knuckles....so I get you!Sending a Big Hug!
I am so confused on lesions.first I had 3 than I had 11 and than...well cant count them.Are there normal mri lesions from life or is this brain of ours just more mysterious everyday?I just dont want them to research on me!
I sure have no idea! I am still in limbo land. I have an MS doctor without a diagnosis. Basically it looks like I am waiting for "neurologic flare" #3 and we go from there. I sure am hoping it won't take more then 3 to get a diagnosis of something! I just saw my rheumatologist last month and my primary care today. They both felt waiting for flare #3 was a viable option and that it's hard to diagnose neurologic conditions. So I wait and do the best I can to prevent #3 (I guess??) I am loosing weight and getting my rheumatoid under control (starting a biologic as soon as my insurance company give the approval).
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- I'm hoping the rheumatologist has some ideas!! 
DO MRI STUDIES ACCURATELY REFLECT YOUR DISEASE STATUS?
My neuro says don't need DMT since no changes in MRI in 2 years
