My neurologist thinks I have MS. I certainly have all the symptoms except for the relapse/remitting part. I woke up one day feeling awful and have maintained awful ever since. I have times that are MUCH more awful and then I will revert back to my "normal" state awful but I never feel good. My MS specialist said my MRI's are most definitely not normal and showed me all the "white matter hyper-intensities" but he said the fact that I never feel good means it's not MS. I'm not a doctor but I know how to read. I know there is a type of MS that never has remissions. Why wouldn't that have been considered? And what should I do now?
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Neurologist says MS, specialist says not likely
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SlowbutGoing
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I know it’s frustrating not to have an answer BUT it’s important to get the right answer. MS has specific diagnostic criteria called the McDonald Criteria and yet is still one of the most often misdiagnosed diseases.
It’s a snowflake disease that we all experience differently and no one has ALL the possible symptoms. We each have our own set based on the location of our lesions.
Lesions can be caused by things other than M.S. and some of our treatments can make the mimic diseases worse. If this doctor isn’t helping you, then go for another doctor’s opinion. It took me almost a year from going to doctor after doctor to get my diagnosis. I was even misdiagnosed early on. Hang in there and keep trying!
Thank you! It's been 5 years and I've had tests for just about everything. I haven't had a lumbar puncture or genetic testing so I guess those are coming :/
If he doesn't think it's MS, then what's he doing to find a different diagnosis? I'm not quite clear on whether you've been seeing 1 neurologist or 2, but I have to agree with Raingrrl to find another. I went through several before I found one who took me seriously.
The new MS drugs have been game changers for many people, but they've also made diagnosing us more complicated. The drugs are so expensive and have so many potential side effects that they can't risk giving them to the wrong people. It's possible that you have Primary Progressive MS instead of the more-common Relapsing-Remitting, but at this stage it's also possible that you have a different illness entirely.
Just don't give up! It may take a while, but sooner or later the pieces will all fit together and you'll get a diagnosis. In the meantime, keep venting and asking questions on here. There are many of us who can relate to your struggles.
I am seeing my regular neurologist and was referred to an MS specialist. My regular neurologist believes I have MS. The MS specialist said he didn't think it was MS because I haven't had any remissions to where I feel like I did before I started feeling bad. Once I started feeling bad I stayed feeling bad with periods of feeling much, much worse. For example this past week, even though I had two days off work, by the time I got home from work at the end of the week I had to call my husband to get me out of the car. He had to undress me so I could go to bed because I couldn't move my legs. Next day, complete and utter exhaustion. Couldn't even make myself coffee. Today I am up and moving around.
If your regular neuro isn't willing to diagnose you with MS, in spite of his beliefs, then see if he can refer you to someone else. The only MS specialist I ever saw told me that testing wasn't necessary because my only problem was that I smoked. I wasted 13 years because I didn't fight to see someone else.
To go from immobilised one day to functioning relatively normally the next is not usual with MS - regardless of whether someone has Relapsing Remitting MS or Primary Progressive MS. Ditto for what you've described about "never feeling good" (although some of us do suffer from "never feeling good" because of our MS causing significant functional impairments/ disabilities).
Maybe talk to you neuro about whether Functional Neurological Disorder should be considered - FND can be described as a “software” issue of the brain, not the hardware (as in stroke or MS)".
rarediseases.org/rare-disea...
I have to disagree with that, Frances_B, but perhaps it's down to the way our different countries look at things. The first doctor to openly mention MS to me was when I went from "not feeling good" for a couple days to having no feeling at all down one side of my body for 24 hours to being perfectly normal by the time I went to the ER. I was told then that it was a classic symptom of MS, and I'd heard similar stories from other people who were diagnosed back in the days before MRI's. Now, I still didn't get an actual diagnosis for quite a few years, but that day led us in the right direction.
I have to agree with the posts by Raingrrl and NorasMom. M.S. is well known to be very challenging to diagnose, and it is imperative to get a correct diagnosis so that you are put on the correct treatment plan. I went through a few years of misdiagnoses by more than a few doctors before finally getting my M.S. diagnosis.
Do not give up the quest for answers. Go to another Neurologist. Bring all your test results with you. I wish you the best in trying to get the answers you need, and keep us posted on your progress. Take care. 😊
Thank you so much for your encouraging words and for sharing your personal experience! I really appreciate your advice and support. It means a lot.
I think you should find a neurologist who will do a lumbar puncture. It will be a definitive answer for you. I tried to get a diagnosis of something for why I felt so sick for years, and until I had that procedure done, no doctor could tell. Good luck and please keep us posted!
I agree. My neurologist didn't think I had MS. Got a Lumbar Puncture and I definitely have it! Read reviews for the doctor that performs the puncture. I heard they can be very painful . Luckily, my dr was great. No pain but I do wish I would've taken a sedative just to relax me. One neurologist thought my brain lesions were migraines! Seen 3 different neurologist and I now have the right one. Look at the neurologist reviews.
Definitely get the LP. It will help give you, and the doctors, more pieces of the puzzle. I've had two in my life. Your skin is numbed so you don't feel the needle (aside from pressure). You will be warned of a terrible headache afterwards. I did a bit of research and found if you keep your back perfectly straight, it helps.
You've gotten some great answers so far, but I just wanted to add that I never feel well. I have a baseline that's normal for me. Sometimes I will have a definite worsening, then eventually feel "better" than during the relapse, but I don't feel "good". That seems to be how my relapsing remitting MS goes. So I wouldn't worry too much about that part. 😊
Oh, that's the first time I've had someone else say they also have a baseline of "bad". Thank you, now I don't feel so strange.
I had a long talk with my adult daughter about how I am spiraling in my head wondering if I am just a really difficult patient, like I explain myself poorly or if I am just so unique, which I most seriously doubt. I don't think my illness is rare and I'm frustrated with how hard it is to get an answer.
I agree with you, and it's not unusual foe people to go through this. I wish you the best.
I was diagnosed with Primary Progressive MS about 3 years ago after a lumbar puncture showed positive Oligoclonal bands test for MS. The diagnosis was confirmed by MS specialist at U Mich hospital. My understanding is that PPMS patients make up about 15% of total MS patients (if diagnosed later in life it's more prevalent I'm told) and do not go through periods of relapse and remission just a slow worsening of symptoms.
Getting that first "definitive" diagnoses took about 18 months from the time MS was first suspected. My wife suspected MS 4-5 years earlier because balance issues were beginning to be a challenge.
One thing you might consider is to keep a log/journal of potential symptoms so you've got a record. My memory was not nearly adequate to give neurologists an adequate picture.
Hang in there and good luck,
What should I log? I've made notes all along the journey in my phone and I tell my doctors what has been happening most recently. One of my recent notes was about thinking I was having an eyeball spasm (lol, I laugh at myself for the weird description but that was the best I could think of to describe it). I wrote that I had intense pain in my eyeball and my eye was twitching.
A place to start may be websites like the two I've linked to below. When I was trying to figure out what was going on with me and if I might have ms I didn't know the difference between potential ms and just ageing symptoms (I'm 71) For example I never knew fatigue was so common to ms. I also didn't know some ms patients have a Permanent Progressive type. Do some reading to help understand ms. It's complicated and one thing I've learned is how different Drs. hospitals and other medical professionals diagnose ms differently. My opinion is there is a lot we don't know about ms and different sufferers can have a different "basket of symptoms. And some ms symptoms can really be due to other factors. My neurologists used lumbar puncture results as a definitive marker for ms diagnosis for me (not all neurologists do) But it was 3 years from a negative lumbar puncture to a positive puncture before they began treating me for ms. I had balance/falling issues and cognitive problems that predated the first lumbar puncture. In fact, because of the way I walked, my gait, my wife thought I had ms a few years before my first and negative lumbar puncture. Sometimes it's challenging to correctly diagnose ms.
A log of potential symptoms can be a tedious thing. A weekly log may work best. But if you've got things going on (a recurring pain, falls, memory other cognitive events etc.) keeping a log can provide a better picture of frequency and types of potential symptoms. There is a downside however, I felt like I was becoming hypochondriac and focusing too much on potential symptoms at the expense of trying to live my life. Don't let the log, the symptoms or a diagnosis take over your life.
Hope this helps.
Al
webmd.com/multiple-sclerosi...
You can request a lumbar puncture "LP" that is the final say to any speculation. Also, you can get another opinion. I would start with calling the MSAA (ms association of America) to see their thoughts. Very helpful. Good luck. I really hope you feel better soon and get it figured out
Lumbar puncture is not "the final say to any speculation". Around 10% of people who end up with a confirmed diagnosis of MS and who had a lumbar puncture will have actually had a negative LP result for oligoclonal bands. Unfortunately the myth that an LP is a "definitive" test for MS keeps persisting as people persist in saying that it is when in fact it is just one of the tests which is used to help arrive at a diagnosis of MS.
So called the MSAA and they said that the lumbar puncture was the definitive answer. I got diagnosed pretty quickly. Went to the ER for something unrelated, had an MRI which showed a lesion, got referred to a specialist who ordered more tests including a LP which confirmed his theory. Called the MSAA who at first was skeptical because they thought it was weird I was diagnosed so quickly, but then I told them the neurologist said the LP came back and gave him the confirmation he needed. I asked if I should get a second opinion and they said "since you had the LP, I would say no. That's the last step in being diagnosed." of course, get your MRI, but they stopped being skeptical when I told them the results of the LP and then we started talking about symptoms. Turns out mine is very slow progressing and I've probably had it about 10 years.
What you actually mean is that the LP was the "last step" in YOUR diagnosis - it is not the "definitive" answer for every case where MS is suspected - if it was then the approx 10% of people who have been confirmed as having MS but had a negative LP test for oligoclonal bands (OCBs) would not have been diagnosed with MS. While its results can be significant the LP test for OCBs is just one of the tests used for diagnosing MS so please don't contribute to the misinformation out there by saying it is a "definite" answer when it isn't for a signification proportion of people.
frontiersin.org/journals/im...
"It is well-known that OCB in CSF are not exclusively found in MS. OCB are thought to indicate chronic immune-activation in the CNS and therefore, can be found in a variety of chronic inflammatory diseases."
And:
"Apart from MS, there is a long list of diagnoses with CSF OCBs reported: systemic lupus erythematosus, neurosyphilis, neurological paraneoplastic disorders, Behcet's disease neuroborreliosis, aseptic meningitis, neurosarcoidosis, HIV infection, cerebral tumors including lymphomas, Sjögren's syndrome, herpes encephalitis, Morvan syndrome, Anti-NMDA and other autoimmune encephalitis, neurotuberculosis, anticardiolipin syndrome, HTLV myelopathy, prion disease, schistosomiasis, stiff-person syndrome, cerebral cysticercosis, GBS, CNS vasculitis."
As you can see from the above long list of other diseases where OCBs are found in CSF it means that these diseases also need to be excluded before MS can be diagnosed. Often the patient's clinical history and symptoms will aid with exclusion of them but the OCBs test is also an indicator for those diseases.
Also see plainer language on this webpage: mstrust.org.uk/a-z/lumbar-p... (underlining in the quote below is mine)
"The term 'oligoclonal bands' refers to the presence of two or more bands and shows the presence of disease activity. Whilst this doesn't necessarily mean that someone has MS, about 80-95% of people with MS do have oligoclonal banding in their cerebrospinal fluid."
So the maths is quite simple - 100% of people with confirmed MS minus the 80-95% who don't have OCBs equals between 5% and 20% of people with a negative LP.
And neurology.org/doi/10.1212/N...
"At the time of diagnosis, 10% of patients with MS show the absence of oligoclonal bands (OCBs) consisting of intrathecally produced immunoglobulin (Ig) Gs."
I actually do appreciate all the sources you listed! I was diagnosed and started treatment within the past 6 months. I suppose I was in the right hospital were a neurologist just knew what certain things looked like, referred me to ask specialist (who i am told happens to be one of the leading MS doctors in the nation), got labs done, another MRI and a i think a CT scan, then when all those came back he ordered an LP. My diagnosis went so quickly in the scheme of things that I was skeptical so I called the MSAA and they confirmed that given the tests I had and the fact that LP backed it all up, there was no need for a second opinion. It's all be very confusing and surreal. I seem to be a rare cause that it was diagnosed with such little progression. There seems to such a wide variety of symptoms and treatments, now there is even a wide variety of steps to diagnosed? It's daunting 🥺
Yes - you are right - you were very lucky to get such a quick and clear diagnosis - some people get put through the mill for years before getting any answers. At least with a quick diagnosis you can adjust and get used to the idea of having MS - I feel for those people who spend a loooong time in limbo land not knowing.
In some way the quick and recent diagnosis means that you probably didn't end up asking lots of questions about MS beforehand and thus not yet had a chance to learn much. While social media and other online forums etc can be good for hearing other people's experiences to help you understand MS, often the information you see/ read is not always of the "best quality". This site asks that people back "stuff" up with links to legitimate and reliable sources, which I why I posted the links I did - because it's not my opinion that not all LP tests done on PwMS will be positive for OCBs, it's a scientifically substantiated fact. And the internet and social media are a cesspit of garbage - often posted as if the person knows what they are talking about when they actually don't. So, keep that enquiring mind open, ignore the vast amount of unsubstantiated BS you will come across, and keep learning 
.
I’m one of those people that never had a positive LP yet got a diagnosis in 2008. Thank goodness it wasn’t used as a final diagnosis but just one of many tests. It took some time and because my sister was already diagnosed years before, it made it easier I’m sure.
Thanks for sharing a very important question. I started on one side 20 years ago and was treated for herniated disk on cervical * now MYELOPATHY. Took 15 years to sayMS/ Primary with no remission. Steady over years and lesions on brain and spine. After a long time finding a specialist * It is complicated because multiple areas are affected over time and specialist even need to practice updates in the medical field. We have to be our own ADVOCATE and like you learn and research 🔬. Trust your body and journal to make new connections. Hard to do but we are always looking forward with faith. I am with you in spirit!
I do have spinal cord injuries; herniated disks, spinal cord pinching, and even a non cancerous tumor. I know that has complicated things in getting a diagnosis too and it may be a reason for the "always bad" baseline. I never feel good and gosh I miss it.
Trying to understand the term 'awful' in relation to MS. I understand the term in relation to myself but in others, I need more of an explanation. Significant other has had MS for 43 years, he has had his fare share of awful. My 27 year journey is a completely different awful. What is your awful?
I went from extremely healthy and fit (picture rock climbing and kayaking the same day without even being sore the next day) to not being able to walk down the block. I am exhausted trying to do something like grocery shopping. I cry from the pain and weakness. My right side is very weak and my foot has begun to drag often. I use a cane to ensure I don't fall over after I did that a few times. I went from living my best life to can't walk down the street without a cane, pretty much over night.
I am so sorry that you are dealing with this. Have you thought about another doctor? What about changing your DMT? What does your current doctor say about this?
I've thought about changing doctors but I am already driving 3 hours to see this one. I don't have a lot of options. I don't see anybody else until March and I had the "diagnosis" in December. I feel like I must be doing something wrong because it sounds like everyone else has a much more responsive medical team. I'm in Florida though so maybe that's the difference?
It takes a bit to develop a relationship with a doctor. You both have to 'learn' each other.
Have you seen your neurologist since the new symptoms? Were you ever treated with IV steroids? When I first started out, I think that I called almost everyday. He said once, why do you call so often? I told him 'This is all new to me'.
I have heard this before: be your own advocate
How frustrating! I would see another Dr. Leslie
There are several medical issues where an MRI can look similar to MS. And other MS tests - like a spinal tap (at least in the old days) and others.
have you had a spinal tap that usually confirms it.
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