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!
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Morllyn
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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.
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.
I like the way you were selective in who to tell! ;-). 1,000,000 is a manageable group! 😉. I find your post extremely disconcerting. I’m not in the same boat but am currently examining the option of being evaluated by a team of docs at Mayo in Rochester. It’s very appealing to me to have a complete snapshot in time u undertaken to see what, if anything is related to something else that isn’t being look at. To see how many of my dots connect to others. A complete systems approach. Why? Well, I’m not sure that all off my docs are discussing/sharing all of my issues and symptoms. I’ve long been a proponent of having one doc, existing or new evaluate all of my meds for contraindications and clashes 😁be he/she new to the team and acting in that capacity alone or talking one of my existing docs into serving in that capacity. I am completely convinced that there is huge value in having a “hub” of communicactions Nd looking at my body and it’s subsystems and having all of the data in front of them. Who knows if the results would change or not but my view is that it’s a. Dry positive approach. I should probably mention that I have my family physician, my Cardiologist, my Nuerolgist, my Nephrologist, my dermatologist, a vascular and general surgeons. I’m afraid that the local higher eduction institutions would collapse if something were to happen to me! 🤫
If I end up doing this ill be completely transparent about the results.
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.
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?
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.
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.
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 😉
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.
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
Is it bad form to bump an old thread? Let me know and I won't do it again buuuuut, after my visit to MS clinic this week, I continue to wonder if MS is the right diagnosis for me! I don't have the "typical" MS lesions but rather a bunch of small lesions (20 or more) in my periventricular and frontal areas and one or two mid size ones that looked like *to me* that they had grown from my 2013 to 2015 to 2017 MRIs (this was the first time I'd every seen the images). But I had two other neuros say migraine. I guess the t-spine should give me some more clarity as well as the evoked potential test.....
Morllyn I'm curious to know what's going on with you now? And others that are in the same boat--lots of symptoms but no clear diagnosis based on clinical tests?
How in the world can they call the symptoms and affect on your life "benign" is beyond me!
I am in the same boat Qt314grl . I am wondering, after 40 years of an MS diagnosis, what the heck I have! It sure isn’t benign. I am going to ask my doctor, at my visit next month, what he thinks about testing for other things like fibromyalgia, migraines, whatever!
Morllyn Did you ever get any more definitive answers? After my 2&1/2 yrs. I'm wondering about my last tests in October, my Neuro believes I have quickly progressed from Not Sure of a stage to Secondary progressive because of increased symptoms. Still only symptomatic meds.
My doctor sent me to Vanderbilt and after another Lumbar Puncture and an Evoked Potential test they now do not think that I have MS but are not sure. My doctor will just treat my symptoms unless my symptoms escalate.
We'll just pray your symptoms don't escalate. I'm having a hard time with cold weather this year. If my legs or feet get cold, my numbness & tingling will go from toes to waist and spasms in legs that are painful. MS lives up to it's name of Monster!
Morllyn, I was in your shoes over 20+ years ago when we were diagnosed primarily clinically and the MRIs were not real great. I remember my neuro saying “I’m so tired of these radiologist saying these brain scans are normal when they are not!“ When I lost some color vision in one eye and I was doing very poorly, with lesions on the MRI brain and T spine, I was placed on Avonex. At this point, my choice is to go to the Mayo Clinic because so many other symptoms have developed in these last 20 years. My heart goes out to you because I remember feeling so helpless during the years of “Well, you’re a ‘probable’ MS“. What do you do with that? Especially if you can see your condition getting worse. I’m not quite sure how to use this site, but I will be trying to keep up with how you are. I just remember during that time before diagnosis asking why I have MS symptoms, becoming consistently worse. My best to you.💐
I didn't even have a symptom until 2=1/2 yrs ago at age 68. Now neuro thinks I've gone from probable to secondary progressive, but nothing is definite. Very frustrating for sure!
I still think (just my opinion) that it can be difficult to diagnose. I’ve been on interferon so long I believe it’s helped. But things have gone steadily downhill, as in “Omg! I could do that 4 years ago!” And I’m a notoriously nonconforming patient (which they say is GOOD if you’re a cancer patient...!) who refuses to be bullied. Hang in there. I wish you comfort. I will bet about 90 percent of us have discomfort or pain. (And I’ve seen doctors that just do not care.)
I was suspected of MS in 1977, then diagnosed in the early 1980’s. Now they think that it may not be. I do not know for sure, I just want to know. If I know what it is then I know what, if anything, that I can do.
Take care.
I don’t know where you live, but, for me, I’d try to get into the best clinic I could to see if they can figure it out. I know things have changed from the 80s/90s, but my opinion the change seems to have been more in the area of treatment. I remember the doctors diagnosing MS, and then the betaseron lottery happened. Then there were more treatments and things seemed to get a bit looser in the diagnostic arena. (At least that is how I perceived it where I lived.) But if you have symptoms you definitely want to know what are they from.
Vanderbilt MS Clinic is a very good diagnostic clinic in Tennessee.
The lumbar puncture was tested for other things like tick born diseases. It was negative for those. The doctor said that she wasn’t sure that she could rule out MS though.
We left my first Neuro after just 2 appts. He just kinda wrote me off and said “You’ve had long life, gonna put you on Tecfidera, then change to something else in 18 months because you are JCV positive. No explanations. My hubby almost decked him. I’m fortunate now to be seen by one of the top docs at UCSF MS Clinic in San Francisco. I’m feeling much more comfortable with my care.
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