I’m asking as much as I get they tell me it’s MS occasionally I get a feeling of “what if it’s not?” Because I’ve only had symptoms and my MRI has spits but not the fingers on the scans. What if it’s something else and I take all these drugs for the wrong thing. I’m going to talk to my neurologist again on these thoughts but I’m looking for YOU the community of MSers to tell me do you get these thoughts? Especially if you never had the lumbar test? Do you feel in denial occasionally or are symptoms bad enough where you are like “nope it’s ms”. I get wanting a name for something and the need for wanting it to be something else but I always read how other diseases mirror MS but not MS.
Looking for thoughts 💭 from others…
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JMWCO
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I didn't have lumbar puncture I made my Dr show how I have M.S.. and went medication for it and I started a support group the group disbanded but we still keep in touch .That was twenty years ago I am fortunate I am doing good I workout and have a great doctor and a positive attitude. My advice is to ask your Dr and make him or her explain it to you I know that it can difficult to accept at first but don't forget that you can control some things don't ever give up .
I had a lumbar puncture and MRI. Both fully confirmed the diagnosis, which at that point was just a relief. I was tired of trying to figure out what was wrong!
Had one. It was negative. But I still have MS. Initial mri was inconclusive. My neuro observed my symptoms for ten months and called it MS and put me on meds. My next mri was ten years later and obviously MS. I’m glad I had ten years of early treatment.
I think 🤔 I’m having a moment of denial; as I also read:
Cerebrospinal Fluid Test (CSF) For this test, a few tablespoons of spinal fluid are drawn from between the lower vertebrae with a syringe. The spinal fluid of people with MS usually contains elevated levels of certain antibodies, as well as a group of proteins called oligoclonal bands, which indicate there’s inflammation in the CNS. There may also be certain proteins that are the breakdown products of myelin. Not all people with MS have these CSF abnormalities.
Perhaps 🤔 I’m just wanting a different outcome….🤷🏻♀️
After PCPs dismissed my descriptions of episodes for more than 20 years, I finally self referred to a neurologist at a major teaching hospital. She did a walking test, looked at my spine, ordered blood tests, full MRIs and a lumbar puncture to confirm. It took only long enough to do the tests to confirm MS: old lesions on my thoracic vertebrae, one active on my cervical, old lesions in my brain. It was my 70th birthday present. Like dear falalalala, I was glad to finally have an answer.
I did have a lumbar puncture and it confirmed what the neuro thought. My symptoms were so slight at that time, in comparison to what I had read and viewed, that I didn't want to believe it. Now its full blown advanced PPMS and I'm a believer. My suggestion is for you to be proactive not reactive. I wish there had been more I could have done from start. Hindsight is a cruel mistress.
Sadly it is cruel that any of us are living this way. I was diagnosed in 2018; the two years were ok but the past 2 I’ve seen and experienced either aging (not that old 40’s) or ms was was already damaged as I’m told by neurologist I’m on a highly effective medication (o) but I think 🤔 because of all the other things and life the past two years perhaps I wonder 💭 “what if they were wrong?” What if it’s nastier or different and I’m on a different course?
At the time I saw and was shown the few lesions before I had my neurologist appointment to confirm. I even sent them to another radiologist who discussed with a neurologist friend who specializes in MS- as I wrote this I find myself going YES YOU HAVE MS but why am I looking for it not to be true or different?
I agree with plenty of the comments here that said it’s good to get a diagnosis and initially it was….but now I’m like what now what to do now is this really it and if so besides getting my life together what all do I keep having to give up vs have?
Perhaps I just needed a moment to hope that a disease that has no definitive tests but a list of clinical criteria was wrong or inconclusive as there are so many diseases and other things that pop up but if it’s not MS is it worse?
Or perhaps 🤔 I needed to know or reassure that what has happened is the cruel joke life had for us. I get we are lucky to have treatments and to take care of ourselves for the best lives possible.
It’s the burden on my partner and kids. On not being able to work like I did or do things without paying for them physically.
I’m feeling sorry for myself and my loved ones- as ahh the realization that no test is gonna change what is.
I think I needed the moment of hope, to hear from others like me and to say what don’t I know…or am denying that is my truth.
Thank you all….just need to keep living a new normal which I don’t really want. ❤️🩹
I keep thinking Ocrveus has aged me, and I don’t mean just “chemo hair” 😒 How old are your kids? I pay the price all the time, but no longer have the reserve to deal with my choices, so my fam pays too 😭
I've had 2 lumbar punctures. One in the Italian medical system (I do not recommend that system at all. Didn't get any local anesthesia for it. The doctor threw a pillow at me and told me to hold that across my stomach with both arms crossed and bend over. Two nurses, one for each shoulder, then pushed really hard down on me. The doctor, with absolutely no warning, rammed that needle up my spine. OMG!!! PAINFUL!!! It took me almost 2 weeks to recover from that. Mostly due in part to trauma in how I was treated.)
The second one was done the American way and was much better. The doctor had me lay down, and gave me a local anesthesia, and explained everything she was going to do just before doing it. Felt nothing. Recovered enough to drive the 11 hours home within about 2 days. Had to get the second one done because the American military medical system couldn't accept the results from the Italians because none of the doctors or technicians had American certifications. HMPH!! Plus the so called "real doctors" were trying to prove a nurse practioner wrong. She called MS based on my symptoms alone from the start. Almost 5 years of of so many different tests and exams just to prove her right. The Italian doctors called my initial results "probable MS". What the frick does that mean? When I asked if it's not MS, what else could it be? Nothing, because you've tested negative for everything else. Thanks a lot for the non answer.
As long as local anesthesia is used and the doctors treat you with respect and dignity, a lumbar puncture isn't too big of a deal. Massive headache for a few days, just drink lots of water along with any pain meds they give you to help lesson the headache.
I for one was just glad to finally know what it was I was up against.
Sorry to hear abut your experience. When I had my lumbar puncture, a doctor that I knew told me load up with Mountain Dew because of the caffeine content it will reduce the headaches that occurs when you get a lumbar puncture. I was skeptical but it really helped. I did not get bad headaches.
The 3 test to tell you if you have MS. 1. Lessions on your brain MRI.2. Lessions in your Cervical Spine MRI.
3. A spinal tap is the only way to verify definitely that you have MS.
My nuerologist did not feel I had MS even though I had the first 2 symptoms so he ordered the spinal tap. If you have MS fluids in your spinal tap fluid you have MS. If they're no MS fluids in the tap you don't have MS but it could define some other disease.
You are right onThe lumbar being the only definitely hit there is no guarantee there is material to say yes - another one of those things where if you get it just right bonus and if you don’t have material can still have MS 🥺
While CSF is a key component in a lot of cases, The way the MS specialist told me that definitive diagnosis are made is per the McDonald criteria nationalmssociety.org/About...
Have not had any lumbar puncture. My doctor referred me to an MRI right after he pretty much diagnosed me based on symptoms. The MRI confirmed his diagnosis.
I thinkLike most medical conditions the person has to connect the dots with the various issues to get it close or right.
I’m looking forward to more machine assisted data learning so people don’t continue to try to memorize everything but support the focus in a persons health with less missed symptoms.
I feel like this a lot. Especially since I did have a lumbar puncture, and no bands. But my neurologist said this is not uncommon. I just keep getting more and more brain lesions in very short amounts of time. One thing the puncture can do is rule out mimics. Which is why I’m glad I gave the information. But yeah, I go on the thought train all the time, about… what if it’s something else. It’s hard to control it keeps me up at night like I’m some detective that’s going to figure it out. But then yeah I try to check facts which are that for the treatments that are available for MS are ones that I’m responding to. I don’t want to be on medications or have this at all but regardless of what it’s called, the treatments are working and so I try to focus on that. I try to focus on the fact that every time I go researching around that I’m putting my brain in a place that isn’t helpful too. I’m sorry that you are experiencing this too and I hope you can find some tactics that work for you as well to settle your mind.
I’m doing better but like you said we all can/could have moments like this. I certainly was abs my pcp thinks it’s a relapse…I see Neuro next week.
I go back to the beginning and have to remind myself I had my mri/tests looked at by my dr and my uncles friend who specializes in neurological radiologist and also confirmed my condition across the country.
I loved that you said “detective” and I never did the puncture to rule things out that mimic as I wasn’t given the option- they seemed really sure what my condition was but then left it up to me to figure out what drug to pick, read up on and decide - the guidance was here are the drug brochures choose what you want 🤦🏻♀️🤦🏻♀️🤦🏻♀️🤦🏻♀️🤦🏻♀️🤦🏻♀️
Hello you are the neurologist and I’m im the overwhelmed patient just tell me my most likely choices and outcomes.
Anyway; I’m pretty sure I’m having a relapse and trying a muscle relaxer as I’ve been in so much pain this past week - it’s like having whiplash from. Bad car accident but I didn’t have an accident. 🤷🏻♀️ Numbness in my face like I have a beard but I’m a women. Randomness tingles bug crawling in my arm/leg 🤷🏻♀️But nothing there just the effects of the tingles.
I’m going to ask for a full spine mri; they only seem to check my brain lately and I think 🤔 I need more answers. I’ll ask about the puncture but knowing it’s really only good for ruling out mimics since it doesn’t always show MS is also a good thjnh to discuss.
I had a lumbar puncture done it was one of the worst experiences I preferred giving birth over it and i was in bed for 2 weeks. The worst part was that it did not give me any more answers or show anything further than what I had known. I originally thought what if it is not ks but my dr did alot of bloodwork to rule out other diagnoses. I got 4 different opinions from doctors in 3 different states because I was in denial and they all said definitely ms due to amount and location of brain lesions. With time I have accepted it. Blessings
I feel you on the denial- ironically I was more accepting early in and more denial today….🤷🏻♀️ Perhaps it just too me this long and my zapped energy impacting my life/family is the triggers for denial?
I do not like the idea of it being worse than childbirth- bin there find that twice and the second time it was rough cause I had flashbacks to the pain from the first and my body was like F this and my sin was like hells no mom on my way out!!
MRIs + neuro evaluation + blood test + lumbar puncture.
Treatments for MS are expensive and can be well or not supported. I would leave no chance for misdiagnosis as you don't want to lose time to get the right treatment.
Many of the tests are done also to eliminate other diseases.
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