The Ever-Elusive Diagnosis Quest
Hi, newbie here. I honestly have no idea if I have MS. My doctors so far tell me I do not, but I can't shake the idea that they're missing something. Paranoid? Perhaps. I'm sure the staff in the various doctors' offices think I'm a raging hypochondriac, lol. One of my doctors keeps trying to chalk my issues up to anxiety. Isn't it weird how we come forward as patients to get help for depression and anxiety, and then the medical establishment uses that information to dismiss or negate actual physical symptoms? Hmm. It is what it is, I suppose. Thankfully, not all doctors are like that. 😀
Anyway, bunny trail there. I have been through the gamut of tests. MRIs, lumbar puncture, labs, EEG, vestibular testing, etc. I do have lesions on my brain. My neuro years ago found them when I presented with an eye twitch that lasted for 10 1/2 weeks. At the time, she said it was normal white matter changes, and that we would keep an eye on it. I ended up moving out of the area. Fast forward a number of years, and I'm now presenting with all sorts of other symptoms:
-Being off balance
-Dizziness & vertigo
-Dropping things
-Shooting pains
-Intense itching
-Tingling & numbness
-Brain fog/forgetfulness
-Intense fatigue
-Limbs feeling heavy
-Random twitching
-Stiffness
-Overly strong reflex response
-Urinary frequency & occasional leaking
-Emotional lability
-Swallowing/choking issues
-Bruise very easily
-Headaches
-Cold sensation in shins & feet
-Hot and cold flashes
-Heat sensitivity
-Ears ringing
-Feeling that my body is "buzzing"
-Strangely high Epstein Barr titers from a past infection
-Pupils sometimes dilated unequally
My neuro sent me for a second opinion at UCLA. The neuro there is waiting for my most recent brain MRI images, but her current diagnosis is long COVID. While there is probably something to that (I had COVID & influenza A at the same time in October), sometimes I wonder if long COVID is a catch-all when they don't know what else to call something. At this point, it's all I have to go on.
My regular neuro doesn't look at the MRI images. She just looks at the radiology reports. The radiology around here has been known to make mistakes in their imaging reports, so I am not particularly keen on taking them at their word. Recently my primary had to send a report back to be amended because it didn't make sense. I also had an orthopedic surgeon tell me a radiology report was flat out wrong. (I had ACDF surgery in June.) Makes you wonder.
I had a negative lumbar puncture. No oligoclonal bands whatsoever. My understanding is there is a small percentage of people with MS who don't have that in their CSF. I'm wondering how to find out if I fall into that percentage.
So for now, I'm not sure what to do next. I'm considering other options, like a rheumatologist and/or other specialists. If it isn't MS, could it be another autoimmune disorder? Could the Epstein Barr and/or COVID have triggered MS or something else? I'm beginning to think I will never know. I do know that the doctors seem to be happy to look at the face value of the tests rather than digging deeper to figure out what's going on. They write off possibilities with less probability. Sigh.
Thanks for letting me vent. I'd be interested to know if anyone has similar experiences with negative tests despite several symptoms. Any recommendations for next steps? Maybe a MS specialist instead of a straight neuro?
OK, I am laughing out loud right now...not because of what you just wrote or what I just read but because as I was reading it aloud to my husband he was thinking and could swear that it was me who wrote it. That being said, I absolutely 100% feel your frustration as I've been going through most of all your symptoms for probably about 15 years now.
While working as a CNA I ended up having to leave my job (which I loved). Fortunately I was able to go on permanent disability because of all my symptoms at the time (walking into walls, lightning bolts going through my body, weakness in my legs and spasticity, etc.) all things you need in order to be working with patients in a hospital and all which I like you feel are MS type symptoms. Also like you none of my eight neurologist so far... yes, I said eight ...have ever and I do mean ever never ever never gone over my MRIs they just say "nahhhhh you don't have MS!"
One idiot doctor actually told me "boy you walk funny now walk right" to which I told him "this is as good as it gets sorry" and then he accuse me of looking for "monetary gain" you can't make this stuff up.
So I'm writing this to support you and everything that you were going through because it is certainly not fun say the very least. Let's hope that the doctors out there start doing their jobs and both of us get some serious answers pretty soon🙏🏻Hi, Lainey! Glad to know there's a kindred spirit with a sense of humor out there! 😀 It just dawned on me that I wrote this 4 days shy of one year ago. Since then, I referred myself to the MS specialty clinic at Cedars-Sinai. Great doctors there. Very thorough. They also say I don't have MS. After their workup, they said it is fibromyalgia. I asked them point blank about fibro just being a catch all also, and the doctor said, "Who told you that?" But at least they were willing to keep looking rather than sending me off with a pat on the head. So, I have come to realize fibro is a real and irritating diagnosis since then, lol. I still don't think anyone has taken the whole thing about the possibility of me being in the tiny percentage of MS patients without a positive lumbar puncture seriously. (The "nahhhhh" factor!)
God bless you for hanging in there with EIGHT neurologists! I saw a rheumatologist locally that dismissed me outright when I came in to have my initial evaluation after the fibro diagnosis. He told me it was all in my head, I needed a counselor, and not to come back. (Uhhh, no problem, pal! Not on my to-do list, thanks.) Kinda reminds me of your doc who said you were trying to use your symptoms as a get-rich scheme. Gimme a break!
I did also see a rheumatologist at Cedars (not the above mentioned know-it-all closer to home), who agreed it wasn't MS, but said my symptoms are valid and he has seen many, many others with the same type of symptoms. He said it's quite possible that there is some sort of additional diagnosis going on that the medical establishment hasn't figured out yet. I like that they aren't dismissive, even if they don't know what it is we're dealing with.
I hope you find the doc soon that will actually be curious and thorough enough to cover ALL the bases in diagnosing you. (If you find him/her, let me know, ok? Maybe I'll fly out to wherever it is you are!) God bless!
You know it completely blows my mind what some of us have gone through and continue to be forced to go through from the medical profession. My husband just keeps saying "I don't know, I think there's something going on with the insurance companies!"
Well, well, well ...You got the Fibro diagnosis from a doctor and I just happened to get the...you can't be serious... "possible diagnosis of FND in addition to another organic condition" from my latest (8th) Neuro...which I believe in the medical profession field truly means "Finding No Diagnosis". Don't get me wrong, I do like this Neuro I found in Brigham & Womens as she is very pleasant and not condescending like others in the past but I think she's unfortunately following a medical protocol.
She did recommend that I purchase a book on Functional Neurological Disorder, which I did because I entertain and jump through hoops, but found nothing in the read that I could relate to other than "yes I have neurological symptoms."
Also during my follow-up visit I did give her the book and told her "nope, I'm not feelin' it, it's not me, nowhere near"...then politely handed it to her while suggesting she "donate it to someone else" which seemed to surprise her that I even bought the book but like I said "I jump through hoops!"
Oh! Before I forget...the Doc asked if I tried Baclofen as I'm on Tizanidine now. "Yes, it worked better than Tizanidine but I was getting horrific, horrific, horrific nightmares from it!" Her reply "that's not a side effect!" while she searched only to humble herself with "Oh!"...I learned something new moment..."I guess it does!"
So now skip ahead to today… I still have my not so good days which have continued to get worse. I ditched the quad cane a year ago and have been cruising around with a doctor prescribed Rollator walker...Yayyyyyyyyyy what a blessing!!!🥰
Since getting my new ride and after getting outta my own "people are staring at me" head, I do continue to have my staggering moments while telling the starers "no I'm not drunk" but have stopped falling into clothing racks in the stores because I got startled by another customer...talk about embarrassing. However, I'm still not able to keep up with my husband when he's walking because I can only stomp my feet so fast. I've learned to only wear soft soled shoes in the stores so I don't announce myself so much...Hey, ya gotta laugh right?
My next step is my follow-up appt in October so I can do the MS marathon of tests again.
PS, I have not had a lumbar puncture yet but am thinking of requesting one because on top of new symptoms joining the team I had a serious case of Mononucleosis when I was a young teen and in all of my "MS" researching over the years I have read many articles which suggest that there could be a direct connection between mono and multiple sclerosis. We shall see!
Lastly, I must let you know how blessed I feel to have crossed paths with you, a person who can understand completely what others cannot understand in my life. No we are NOT crazy but sometimes I wonder if the docs are trying really hard to make us crazy!!!
Stay strong and courageous my friend, stay safe during what I call "Ta-daaaa!" moments and NEVER lose your sense of humor!
God BlessI was recommended the same exact book! Read the reviews and the philosophy behind the book and I am absolutely against behavior modification therapy, so didn't end up getting it.
I requested an LP, but denied by the neurologist. I requested a referral for my optical symptoms and again denied. I requested an ANA for protein markers, and denied.
It's so frustrating. I've fell at work, fell at the store, fell in parking lots, and just get THE LOOK. I'm sure you know that look. The 'what's wrong with you look '.
I grew up in poverty, with Medicaid on again off again. So from a very young age had to adapt to not having consistent medical access and the bare minimum of care when accessible. So... now as an adult I have... anxiety when visiting doctors. And that makes it harder for me, but easier for them to write me off.
My first neurologist back in 2008 said he thought I had MS but I didn't have lesions on my brain at the time. And I was young, unfamiliar with the disease, and still functioning mostly fine. Also already diagnosed with the fibromyalgia, I just walked away and tucked it in the back of my mind.
Now in a new medical community, with a different set of criteria that they evaluate, every appointment I am asked about my emotional and psychological health. Am I stressed? Am I experiencing depression? Am I experiencing anxiety? Do I feel safe? ARE YOU SERIOUS?!?! Did you not pay attention to the appointment? I know if I say yes in any way the next step is referral to a therapist. But who isn't feeling anxiety in today's world? Especially when they are experiencing undiagnosed neurological symptoms that disrupt daily life. Who feels safe right now, especially when they're prone to falling over and experiencing new and unexplained neurological symptoms? Who doesn't feel stressed when experiencing this? Sometimes I just want to scream with all the hoops and formalities.
So I do my best to turn it around. I compliment the lab tech for getting my vein on the first stick. I offer granola bars to the nurses and receptionists. I thank everyone for their time because they don't have to give it to me. And I research, read, and go to my next appointment with knowledge. Because at the end of the day, all I can do is continue being the best me.
I love your sense of humor and the mental energy you bring in your writing. And I'm wishing you all the best! 💜
God bless you! Let us know how the appointment goes! (There's got to be someone out there who can see the forest for the trees! I guess the docs aren't listening to their nurses?)
- Thank you for your kind words! I, too, am blessed to find another who "gets it!" I'm not sure if my other message came through, but I accidentally logged in with a different email, so my replies are under two names. (Whoops. Blame brain fog??😂)
My local neuro tried to talk me out of getting the lumbar puncture, but thankfully, she ordered it anyway. Not a pleasant experience, but if yours turns up with the right bands, it could cinch that MS diagnosis for you. Unfortunately, all I got from mine was a definitive "NOPE" and a nasty headache that landed me in the ER! Speaking of following protocol, the ER docs WOULD NOT do the treatment we all knew would work (blood patch) without giving me the protocol (morphine) first. Oh, man! They didn't even give me the full dose of morphine, and I had the worst chest pain I'd ever had! I seriously wondered if that's what dying felt like. After the morphine ick wore off, they finally did the blood patch and I was on my way. Still don't get why morphine was the first step. (Insurance shenanigans?)
I'm with ya on the falling over and making a joke out of it. Hence my "I Do My Own Stunts," lol. I was recently in a play where I played a pirate, very similar to Captain Jack Sparrow. I fell twice during rehearsals! (They thought I might have broken a rib.) At least the character has a built-in wobbly walk!- I completely agree on the anxiety thing. Of COURSE we have anxiety! That local neuro I mentioned...at one follow up appointment, she comes in, and first thing says, "You're stressed out. I think you should see a counselor." I proceeded to tell her about the numbness in my limbs and other physical symptoms and she backpedaled pretty quickly! Last time I checked, my limbs don't go numb when I'm bummed. It's interesting to me how often the patient has to inform the doctor of something.
I LOVE how you compliment the staff working with you. Medical personnel have tough jobs! When you find a phlebotomist or nurse or MA who is congenial, kind, and has a sense of humor, they are worth their weight in gold! Thank you for going out of your way to encourage them! (I love to compliment the really good phlebotomists, lol. It can't be fun sticking needles into people all day. Sometimes I'll say, "That was it? Man, you're good!" Hopefully it brings them a smile.)
God bless!
As a former CNA, I will say that complimenting the staff is always welcomed. Feeling appreciated is always nice!🤗 "You get more bees with honey..."
Ok, so now there's three of us...maybe?... on this weird, magical, challenging, undiagnosed, "What the heck is going on in our body" ride? Sad but nice!
I must say that one of the most positive things I have found from this particular MS forum is, whether or not we have been diagnosed with multiple sclerosis yet, we have and are learning much about the many symptoms of MS which for myself I find to be most helpful. Why you ask? Because I feel I've been given the opportunity in having a better understanding as to why some of these weird neurological symptoms do occur within the body and how we all adjust in our own ways... most helpful in relieving that fear and anxiety I once had in the way past.
I've always had a passionate love for knowing how things work in allllll areas of life. Yes, I was and am still that kid "What are you doing? Why does it do that? How come?" and on and on. Just ask my hubby😂
(FYI: I'm also a follower of Dr Aaron Boster-YouTube and owner of MS Clinic) "I hope I'm not violating any rules by adding this😉"
Squirrel!!!
Back when all of this stuff began and continues to happen within my body (and Lord only knows it might've been going on longer than what I think) I vividly recall many of the moments of excruciating pains, buzzing body parts, embarrassing crashing stumbles, am I being electrocuted, having a heart attack, on and on to which I now have a chronological list of my "Weirdest and Scariest symptoms" (I sent to my new Neuro but yet to discuss it).
This forum has helped me have a better understanding to which I say a BIG Thankyou to all who are brave enough to share their life's challenging moments😘.
Lastly, I will forever remember the words my brother with PD says to me each time we speak on the phone..."It is what it is Doll!" Man, I Love him so very much🥰for no matter what life throws at him, he is an extremely positive man❣️
Until the next time:
Stay well, Stay positive, Keep on keeping on and God Bless!!!
"E"what a powerful and succinct message! I've been turning to this community for the last year, and it's a salve to my soul. Going through the appointments, seeing the judgement on people's faces, feeling all the feels with no real answers is hard. This community has allowed me to vent my fears, anger, frustration, acceptance, and everything in between with no judgement and no negativity.
And I feel that no matter what I'm experiencing or feeling, no matter how bad my day may be going... the people I interact with deserve to know that they mattered in my day. So I will always take the time to make sure they know I appreciate their actions and/or attitude even when I may not get what I'm hoping for. Because that's by and large a bigger scope than any individual.
Lastly, SAME! I am the how and why, I need to know the science and the connections and until I do I'm not satisfied. I deep dive research in my free time and memorize everything I can. I was on a (very late) track for a medical degree, I wanted to go into medical research. I find it fascinating. I derailed and left school for family, and ended up elsewhere. No regrets, but sometimes I wonder what would be different if I took the other path.
Anyway, I digress. Feeling a little stress tonight ahead of my next appointment and trying to just focus on the here and now. Thank you for your contribution and I appreciate you. Sending love 💜
