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What If It’s Not All MS?

I was diagnosed with Multiple Sclerosis (MS) in August of 2010 at the age of 20. I have been told by more than one neurologist that I have a pretty “aggressive” case of MS, so since the time of my diagnosis, I have pretty much received all my medical care through a neurologist. I have, of course, seen other specialists like neuro-ophthalmologists and physical therapists who specialize in vestibular rehabilitation for people with neurodegenerative diseases, but I could probably count the number of appointments I have had with a primary-care physician on one hand… maybe two, I’m really not sure. My point is, all my medical issues have been attributed to MS, and until recently, that has always worked out. But I have finally reached the point where I can only wonder if some of the things I am dealing with actually have nothing to do with MS.

MS has many mimics

I’ve always been aware of the fact that just because I have MS doesn’t mean I can’t still get sick in other ways, but that reality is hard to see for a couple reasons. Reason one is I have primarily relied on a neurologist for all my healthcare, and the problem with that is if you were to show a doctor a list of symptoms that a theoretical patient has, he/she is probably going to think it is caused by an illness related to their specialty. An oncologist is going to see cancer, a doctor who specializes in infectious diseases is going to see an infection, and a neurologist is going to see a neurological disorder; at least that is how my mind’s eye sees it. The problem with MS is that there are so many symptoms that can mimic other health issues or maybe even hide them.

Developing an unrelated condition

So what if I developed a medical issue separate from MS but all the symptoms of that issue are also symptoms of MS, and so the appearance of these new symptoms were simply assumed to be due to MS disease progression? Even though I feel like I am pretty aware of that assumption being a very real possibility, it’s hard to not take the word of your neurologist, who you probably trust a great deal, and just accept that something new is due to MS.

I always blame MS

That sort of highlights the second reason it is hard to see the possibility that a new symptom may be caused by something other than MS; I myself have personally grown used to just assuming that “everything is MS”. I feel dizzy? MS. I feel nauseous? MS. I feel fatigued? MS. I feel weak? MS. Anytime something feels out of the ordinary I almost always just blame it on my MS, but all those symptoms (for example) are pretty general to other medical issues that might require a treatment different than steroids. “But Matt,” people say, “what are the odds that you would have MS and something else?” Well, I usually respond to that by saying, “What are the odds that a male who just turned 20 would be diagnosed with MS? Not very high yet it happened to me. I don’t feel like ‘the odds’ are usually on my side in life.”

A new creature

I have had this disease for just under 8 years, and I have experienced a whole lot. I have felt bad, terrible, and worse but I have always been able to power through and eventually find something that helps treat my ailments to some degree… but lately? Nothing seems to be helping. My fatigue is far worse than I have ever felt despite all the medication I am now on for it, I feel generally weak, nauseous, I have no appetite, and because of all that, I feel like I am just wasting away. I don’t know how to express the resulting feeling of severe hopelessness I have been living with. I have been feeling like something is wrong for a while now, I don’t know what but I know something just isn’t right. Most of my complaints definitely sound like they are just MS, but it’s like I have been living with this creature called Multiple Sclerosis for so long, and then all of a sudden a creature that looks almost identical to the one I have been living with just showed up, but no one else can see that it’s different, just me. Am I just going crazy?

What changed?

Well regardless, all I can really say is that I really started noticing myself losing a ton of weight about 2 years ago, but we checked my thyroid and it was fine… My neurologist looked at my labs and said, “nothing is wrong,” so I reluctantly took his word and that was that. Nothing really came of it, and I just figured that “this must be how things are now,” but that left one question unanswered. The question I hate to leave lingering more than any other but a question I have been just too fatigued to even bother trying to answer. “Why?” Why is this going on? What changed?

Avoiding seeking answers online

Now, please don’t try to diagnose me over the internet. I intentionally didn’t mention a lot of the symptoms that have really been weighing me down as well as the illnesses in my family history that may have something to do with all of this because I am not looking for answers online. I sort of subscribe to the idea that when people try to self-diagnose online, they typically scare themselves into thinking it is something terrible, because like I said before, most of these symptoms are so general that you could fit them into almost any diagnosis, but that doesn’t mean that that’s what it is.

Seeing a new doctor

That is the whole point of this post; to illustrate that, depending on what symptoms you are dealing with and where/who you seek answers from, it is really easy to either just assume that everything is caused by your MS or that you are dying of some rare, super nose-cancer you heard about online. Just because we may have MS doesn’t mean we can’t still get sick in some other way, and if you didn’t have MS what would you do? You would see a doctor about it. Not just a neurologist but doctors of other specialties to see what they see when looking at your list of complaints because maybe it’s not all caused by MS?

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Comments

  • ggsmslife
    11 months ago

    Matt
    I was diagnosed 15 years ago, by a neurologist (spinal fluid confirmation) and started on “therapy” injections right away. I had some somewhat bad exacerbations are the beginning, say first 10 years? Funny you point out having something other than MS, as a thought. Lets see….I have a primary care doctor, a neurologist, cardiologist, orthopedist, ent, optometrist, gastrointestinal, urologist, and surgeon as my group of doctors. Only had a primary care before diagnosed. The only thing I suffered with BEFORE diagnosis from infant until I was 31 was constipation and migraines. I broke a few bones, sprained some things but overall pretty normal.
    Now I can give you a list of conditions/issues: optic neuritis, horrific migraines, eosinophilic esophagitis, tinnitus, trigemenal neuritis, slow gut, and interstitial cystitis. My neurologist is well known in my area and everyone thinks he is good. I have stayed with him because I have been there so long. Other neuro docs dont want to take on another patient that has already been under someone’s care. So, when something flares I go straight to the doctor that specializes in that condition. Do you know what each of them say? This is caused by your MS. I have this condition because of my MS. My neurologist? He says that MS is Central Nervous System ONLY….and the other stuff is NOT a result of MS. I retain fluid all over but mostly in my legs/feet…not his problem. I have a rapid heart rate above 120…not his problem. I have a bladder, a stomach, colon that are inflamed and causing great pain….not his problem. I had to seek out these other doctors and have stuck with them because I have all these things and they help me with them. But they point their finger at MS and neuro doctor just a big fat deny. No one can tell me why I have a rapid heart rate, or why I retain so much fluid. No one can tell me why my stomach and colon are so screwed up. I guess the point Im trying to make is yes, you could have things going on inside your body that are NOT MS. The only way to prove that to yourself is to seek help from other doctors. If you dont know where to start I would start at your pcp. Now, you say you havent seen them much. Maybe get a new one, start a relationship new and have them as your foundation for other building blocks (doctors) to help you through the maze of MS. Like Julie, I too blamed it all on MS because it was after I was diagnosed all hell broke loose. But MS does mimic other things, as you said. For instance…a slurred speech and cog fog you sound like you are having a stroke! How do you know until you test it out? Unfortunately, I do not have a neurologist I am happy with, or that I feel gives me the best care but I stick with him for now until someone else is ready and willing to walk this path with me. If you have symptoms that worry you, or you just feel terrible I get it, I do…and I say you need to start working on making you feel better. It starts with you. Dont give up

  • Matt Allen G author
    10 months ago

    Yeah, I think the best thing people can do is also get the opinion of their PCP regarding new “symptoms”. Since this article, I did see a physician assistant who ran bloodwork for tons of different things and… all my tests came back negative for whatever we were testing for. It was kind of disappointing (weird reaction, I know) but it wasn’t a waste of time because I was able to rule a bunch of stuff out.

  • Julie
    11 months ago

    I was blaming every little thing for MS until I discovered that every little thing wasn’t because of MS. So I start out with my primary caregiver. If she’s puzzled she will almost always send me to a specialist who she thinks might know the answer. If that’s a bust then I will then consult with my Neurologist.

    But you are right, never try to self-diagnose on the internet. People are quick to get freaked out thinking they have some organic non-treatable disease. I have a friend who told me she has celiac disease. When I asked her how she was diagnosed she said she figured it out on a web site

  • Matt Allen G author
    11 months ago

    Awesome, who needs blood test and allergy panels when you got WebMD? I have been trying to see other doctors but as soon as I mention that I have MS they refer me to a neurologist. Frustrating…

  • Azjackie
    11 months ago

    It is very true that we first think new or existing symptoms are MS. It may not be. I read everything about my back pain. It has taken my 5th neurologist to agree it’s probably not the MS hug and be willing to test. I think we know our bodies. Like when I had appendicitis and I wanted to strangle the ER “doctor” saying it was cramps. I think it is up to us to communicate to our doctors when we don’t agree.

  • Matt Allen G author
    11 months ago

    YES, self-advocacy is so important because we know our own bodies better than anyone.

  • Froggie
    11 months ago

    I can completely relate! About three years ago, I had symptoms that I thought was an MS relapse. I had really heavy thighs, difficulties walking and lower back pain that even Vicodin wouldn’t touch. My GP sent me to the hospital immediately, as my then neuro was MIA. I had a cranial, C-spine and thoracic MRI’s done, all which came back clean. The neuro on-call wanted to have a lumbar MRI also, just to rule out anything mechanical. Glad I had it done, as it revealed a herniated disc. According to my physical therapist, the symptoms I experienced were not uncommon with disc issues. I am treated with exercise, Gabapentin and epidural shots for now. Let’s hope I don’t have further issues!

  • Matt Allen G author
    11 months ago

    wow, it’s a good thing you GP sent you to the hospital and you got MRIs done because who knows how bad it could have gotten if (for example) your neuro just wrote it off as MS pain

  • Airtripper.NZ
    11 months ago

    This is such a relatable post. For years I felt I was banging my head against a brick wall, or being looked at as an overdramatic, exaggerating, overwrought, complaining woman, as nothing was helping with some of my “M.S.” symptoms. Time after time I kept asking the question “Could it be something else?” and was told each time, no, its M.S.
    Eventually I had an appointment with a neurologist who actually listened to me and had me tested for coeliac disease.
    Thankfully, it was confirmed I was a coeliac – the symptoms that the M.S. drugs couldn’t fix almost disappeared once I was on an extreme gluten free diet.
    There are so many symptoms that can be attributed to M.S. and I’ve found most neurologists/specialists have blinkers on and won’t think outside the square, or be prepared to listen to the patient, because they believe they know best.

  • Matt Allen G author
    11 months ago

    That makes me so mad! It was something so simple that most neuros would overlook because like you said, they don’t want to look outside the “MS Box”

  • potter
    11 months ago

    When I was first diagnosed I thought now when some symptom rears it ugly head I know which doctor to see. It didn’t work that way, if I see my neuro first he sends me to my GP. If I see my GP first she sometimes sends me to my neuro. She will try to figure it out. My neuro is so hard to see I always go to my GP first unless it is a extreme problem like half your body going numb. Potter

  • Matt Allen G author
    11 months ago

    When I was on Tysabri my neuro wanted to see me every month before each infusion so I almost never saw my GP since I already had an appointment with my neuro. At the time that seemed like a good thing but now I can see how maybe it wasn’t the best.

  • meghmacn
    11 months ago

    The problem I have is that doctors blame my MS for everything when they shouldn’t. I threw my back out a few weeks ago. I know exactly how I did it, and I knew it wasn’t a kidney stone or MS. My frigging back was out. I went to Urgent Care for it, and they tell me to call my neurologist. Seriously, guys? Recently I started having hand spasms and contracture. The local doc blamed MS, so I went to a specialist elsewhere, who conceded that some symptoms were MS but that I also had Dupuytren’s. It’s so difficult to get a real work-up when you have MS on your record.

  • Matt Allen G author
    11 months ago

    yes. EVERYONE is afraid to touch you if you got MS, I made the mistake of mentioning it to MY DENTIST one time and we had to reschedule the appointment so I could basically get an ok from my neuro to get my teeth cleaned!

  • Kaye
    12 months ago

    Hey Matt, hope you & your docs can find out what’s going on and you feel better soon. I agree, it might not be only MS! I have a neurologist who tells me how good I look and he’s seen others whose gait is worse than mine. I’m on lookout for a new doc after he asked what he did to deserve a patient like me. In meantime, I’m off to see my primary care doctor who I think is more well-rounded.

  • Matt Allen G author
    11 months ago

    Yeah, I KNOW I look good compared to others with MS, there is ALWAYS someone who has it worse but that doesn’t mean I should stop complaining and stop striving for something BETTER, right?

  • Airtripper.NZ
    11 months ago

    I have heard that so many times. That I should be grateful that I’m not as bad as another patient. My response is I don’t give a f*ck about any one else, its about my quality of life, and the health of another patient is completely irrelevant to me.

  • Mike H
    12 months ago

    Lyme disease symptoms can mimic MS. It’s ironic because I had just moved into my new home back in 2002. A deer populated area. No sooner was i there shortly after I was dx’d with MS. My doc said it was no doubt MS. Bloodwork & all. No bullseye markings nor ticks found on myself….It’s just that I’ve often wondered…….

  • Matt Allen G author
    11 months ago

    That’s a pretty big coincidence which is why it’s important to run tests that can rule something like that out. That’s been my problem, I start experiencing something but rather than run tests to rule other possibilities out doctors just say, “well, you have MS so it’s probably that,” – yeah, PROBABLY but what if it’s not???

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