Not MS?

OK, I have been putting off putting this out there because, well I think, no I know, that I have been in shock.

Last month I went back to the MS specialist. I have known of him for around 20 years, he was my husband and son's Muscular Dystrophy doctor many years ago, before he went into MSsome years ago. A very good, compassionate, up to date on the MS info kind of doctor. I was in his office, he came in, sat down beside me and said, "Lynn, you do not have MS". To say I was shocked was definitely an understatement! He says that he, and other neurologists, have seen this many times before, and they do not know what it is exactly but, it should not cause my disability to worsen. He said that the 4 or 5 lesions, or what many other neurologists have called lesions for the better part of 40 years, are not lesions but he cannot tell me what they are. He said that he, and other doctors, call them "unidentified bright spots" when they have seen them in other patients.

He said that he believes everything I tell him, this is not an issue of my trying to pull the wool over everyone's eyes, nor is it all in my head, but it is not MS.

I asked him what I should call it then and he laughed and said that he calls it "benign weirdness".

So he is treating my symptoms as if I had MS and is continuing to be my doctor.

I truly do not know what to think!

28 Replies

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  • Wow! Morllyn

    Now what?

    I can't recall if you were on DMTs, but if so, do u continue them?

    Should you go to a major center (Cleveland or Mayo)?

    There are so many things we just don't know in medicine. It sounds like you have confidence in your neuro and that is very helpful but wow! I'd be in shock too. Very Good news at least that it won't progress then.

    Sending lots of hugs 🌈

  • Not on DMT's. He said that if it was MS he would put me on one right away.

    I am waiting to talk with my Primary Care Doctor, in June.

    I just still say it is MS, when asked. My sister is the only person I have told, well and all of you. I do not want to go through all of the new discussions that will start if I tell everyone. Just going to leave it as is.

    I told him that this might mess up my disability but he said that no matter the diagnosis I still have the physical problems and he would make sure nothing changed.

    You are right, if it is not MS then what? I knew my monster, now I do not. I can handle just about anything as long as I have all of the correct information about it.

  • now i wonder if i have the same is that a law suite or what?

  • Like Erash says, WOW 😳 I don't know whether to say it's good news or what. It's good news that you won't get any worse but how many of us on here will be in the same situation. Benign weirdness? I hope that you won't stop communicating with us all because you will definitely be missed. Please keep us updated with how they treat you and also let us know if you get any better, which I hope and pray that you do. Morllyn big hug 🤗 blessings Jimeka 🦋

  • You are stuck with me, I am not going anywhere until I am convinced that this isn't MS. I cannot tell you what it will take to convince me but, I will know when I get there.

    You have all become my friends!

  • Well it may be a benign weirdness but it has a MS signature that effects you the way it does us so no matter the label they attatch to it you are still with us. So I guess that makes MS a little hostile wierdness? And it's affecting you physically so what's benign about that? Just got a letter in the mail that my specialist is leaving OU medical to start his own practice in OKC. So happy he isn't leaving the state. I really like him. His dad suffered with MS and I know his heart is in it completely. I went through 2 prior Neuro before getting to him because with the first she kinda scratcher head and referred me to OU medical because she was unsure. That was before the spinal tap though. The second Neuro gave me a clinical for MS and I finally ended up with my current. I have always been a little off and it took a long time for me to get a proper diagnosis

  • Morllyn, how confusing! I wonder what it is about your lesions that do not look like MS. Are the lesions he sees still responsible for your symptoms?

    I agree with erash in that it might make sense to get another opinion. I guess if it were me, I'd feel better not only about a clear diagnosis, but to receive any appropriate treatment that might help.

    That's just my opinion and not worth much, but whatever you choose to do, you're still one of us and need support, no matter what your diagnosis is or isn't.

    Please do update us as you get more information. You're on my prayer list!

  • Wow 😮 the same thing has happened to me after 10 yrs of being diagnosed with ms, now they are saying i dont have it! Went to a second opinion about down to john hopkins! So now i have 2 drs saying yes i have and 2 saying that i have mixed collagen vascular disease but with no real true diagnosis of even that! I was just operated on for tosby a vascular dr and i still have eye hearing bladder etc... symptoms that i just have to deal with but i have been the sickest since being off of the ms meds! So unreal! I guess thats why they call them practicing physicans! Thx kristina good luck!!!

    Ps. They told me my legions werent in the correct area for ms that they werent in or near that ventrical pools i think ! So frustrating!😓

  • Wow, this does make it very confusing for you! I'm so sorry for that! In the beginning when I was trying to convince my Neuro I didn't have MS, I asked whether my lesions were in the "right" places to be indicative of MS. He said that it's possible I could go to a MS specialist clinic (like at Johns Hopkins) and they could say it's not MS. Then he said that is a shame because so many people those specialist say don't have MS turn out years later to actual have it and they missed treatment they needed.

    And I totally understand that if you go to another Neuro who says, yes MS, then you always have lingering doubts. 😕

  • My MS doctor also says not MS and also no treatment at all but I have all the symptoms. MRI after MRI and nerve studies and LPs but no dx? No meds? I have lesions but they MIGHT be caused by migraines?

  • Ughhhh...migraines....i have heard that before. But if you have all the other symptoms....

  • All of them! I have begged for meds for weakness, tingling and fatique. Nothing yet.

  • New Dr maybe?

  • Yes I am looking

  • I'm sure you were blown away from the doc's news!! That's a long time to be told you have something and then be told you don't. Did you ever have a lumbar puncture? Should you have one now? Autoimmune diseases are so tricky to diagnose. (And there are so many of them.) I've been having new symptoms and I'm going to see a rheumatologist to see if I've developed a secondary autoimmune disease. A second opinion may be worth the time. Good Luck!

  • I did have a few lumbar punctures, many years ago, but all were negative. One neurologist, about 20 years ago, said it was a benign brain tumor. When I asked why he thought that he said that the lesion (only showed one then) was in the white matter not the gray matter, or maybe it was the other way around. Two recent neurologists said it definitely is not a brain tumor. They see 1largish and 3 or 4 small lesions or bright spots now.

    I have been to so many neurologists, in so many states. Even the very first ones said they believed it could be MS but they did not have MRI's back then to help. I know that most have said that mine was not the typical presentation for MS.

    It could be something else, OK no problem, I just want to know what it is.

    Thanks for your concern and support everyone!

  • Morllyn, have you had a spinal tap?

  • Yes a few but they were negative but 5-10% of people who do have MS have negative results of the spinal tap.

    Thanks for asking.

  • I'm so sorry Morllyn !!! I haven't even been diagnosed yet. I feel how confusing this must be for you! So what now, I don't understand what they think we are supposed to do when they say "we don't know what it is, we just know you have something" Ugh. Wouldn't benign mean no symptoms?? Isn't that the definition of benign??

    I have my newest MRI reports, still waiting to hear from my new neurologist about them. I read the report, I do have lesions in my brain but I don't know if they are in the "right" places. Or look "right" for MS. I have an appointment tomorrow with my vascular surgeon and am bringing my disk, I figure since I'm producing blood clots, lets talk blood clotting auto-immune that would put those lesions there.

    My problem with all of it is that I want treatment. I want to prevent more damage. I don't want them scratching heads while I produce more lesions. I have a life to live that I'd like to live to the fullest.

    While the testing has come so far in the last 20 years, it still feels very inadequate. Can you ask for a second opinion, do you have a research university you could go too?

  • Yes I can ask for a second opinion and may do that. I am doing pretty good right now, and I know myself, I am upset with doctors in general right now and will probably wait until I have another attack before I find another neurologist. Yes, I know, I shouldn't wait, I should do it now but I am just pissed off. Sorry for my bad language.

    Thanks for caring.

  • I totally completely understand!!

    I've been really pissed off at doctors in general, several times, on my own journey. One time I told my primary care, I can't even tell you how much I hate having to see so many doctors and see you all the time, no offense doc 😉

    I don't blame you, At all, hang in there ❤️

  • @ Morllyn how unsettling! Stick with us anyways. We'll be here no matter what!

  • Thank you!

  • Morilyn, it's Fancy1959. I can't immagine what you are going through! Beign Weirdness? Honestly? Are you sure he didn't get his degree from a Cracker Jack's Box? Have you thought about getting a second opinion? It might be something to consider. Keep us informed! Thinking of you and sending a big electronic hug your way! Remember, together we are stronger!

  • It is just his sense of humor Fancy1959 , which I actually like.

    Like I said, I am going to speak with my Primary Care Physician and see what he thinks. My MS has been mild, comparatively, and unless I have worse problems come up from this it would be hard to get me to take any DMD's, so he (the PCP) can give me the prescriptions for my symptoms, he has for over 20 years, he can get an MRI done when I need one and my last 2 attacks he gave me the steroids, which were prednisone. That was all it took to stop them. If he feels that I need to see a neurologist then we will decide whether I go back to the MS specialist or find someone else.

    Thank you for caring!

    Lynn

  • Anytime Lynn. That's what we are here for! Fancy1959.

  • Ok Morilyn, guess I just found your post and I apologize. I went through all the tests, MRI's, 35 vials of Blood, Nerve Conduction tests and spinal tap. I have 20+ white spots in brain that doc is not ready to DX as anything yet. I do have MS lesions on spine T2-T5. Even after this year of tests, my own research, I am ready to diagnose my own MS. I have balance probs, MS Fog and fatigue, word problems, etc. I don't see how all of that couldn't be MS. At this point, I'm on Gabapentin and Modafinil which both help with numbness and tingling. After a month, the Modafinil is helping me be more alert, active.. Finally, I have mentally decided to get back to moving forward and start living life as best I can. I've some exciting plans which I will post about soon! Never give up! Lynn aka Calfeechick

  • You do know that my name is Lynn also, aka Morllyn.

    I am glad you have plans to get on with, so do I.

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