Hello. I am new here and have not been diagnosed with MS. I am going through tons of testing and not getting a lot of direction at this point. I am hoping maybe someone here can help me understand if my symptoms sound familiar or what path they took when not finding answers.
My symptoms started in Sept 2022 with leg and arm tingling and sensation of numbness combined with extreme dizziness - only at night. At that time, my primary doctor told me it was nothing and to just keep an eye on things.
In May 2023, I experienced what was "maybe" a mini-stroke (according to the ER doc). It was a hot day. I was driving and suddenly experienced a strange sensation, strong sensation of tingles and numbness in my right side, my right eye vision changed, I had troubles walking or talking. It passed and left me feeling scared and very tired. Husband brought me to the ER -brain and vein MRI came back "normal" and the doc suggested a mini-stroke.
Symptoms have continued to progress in frequency and intensity. All symptoms are to the right side. When an "episode" occurs, it feels like my brain is shutting down - like electrical shocks or waves going through my brain along with a gripping sensation on the right side scalp and face / eye area. At it's worst, I struggle to stay conscious.
Heat seems to be a big trigger.
To date, my MRI of the brain and spine are "normal." My EEG was "normal" but I did not have an episode during the EEG. My neurologist is not very helpful as he is very text book and says without lesions appearing in the MRI, that this cannot be MS.
This is a long story. I apologize. Just seeking to learn if anyone experienced anything similar and/or any guidance on what to push for in terms of next steps or treatment. Thank you!
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CaliGirl4141
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Hi! Welcome! The thing about ms is hard because not everyone has the same experience. I agree with dr about brain lesions as my brain is riddled with them. I am sorry I am not a big help. I am sorry for what is happening to you. I know all too well what it’s like not knowing what’s happening. I hope you get the answers you need & deserve. I hope they can figure it out and get you on a treatment soon!
Don't give up! It took me far more years than I'm going to tell you to get a diagnosis, because I never had brain lesions, either, until suddenly I did. I also went through a spell of having so many "idiopathic TIA's" that I wound up being hospitalized briefly. They couldn't find a thing wrong with me, but the neuro I found some years later thinks they were just a weird MS symptom.
It is often very difficult to get an accurate diagnosis, so keep finding new doctors and try to get retested *during* an episode (which I know is virtually impossible). Good luck!
Thank you for the response and encouragement. Over the years that you had no diagnosis, how did you manage through the episodes? I find it tough to "be myself" as I on edge waiting for something to happen. Thank you!
After a bit, you'll learn your triggers. For me, I had to stop going for long hikes during the summer, but for many years I was okay during the cooler months. Then I realized that I couldn't sit in the hot sun and needed shade and plenty of Gatorade. Amusement parks were out of the question unless they involved a lot of trees and/or water rides. Pool parties only worked if I spent most of my time IN the water or sitting in the shade.
I knew that there was something wrong with me, even if no one else did, so I just adapted to my changing needs as they came along. I learned how to plan ahead for all activities. If I was invited to something, I had to think about the weather, the activity involved, whatever other things might be triggers for me. Then I'd make the decision whether to accept or decline. A few people got mad. Some mocked me. Most were actually quite accepting when I would say something like "I get sick in hot sun" or "I'm sorry, but I can no longer walk long distances."
Before, during, and after diagnosis, YOU are your best advocate. Don't be afraid to stand up for yourself to get the care you need, particularly when other people are trying to push you into doing things that you know will have a negative effect on your health. Don't be afraid to sit down, take a nap, or call off work to stay in bed. If you have a partner or young children, things get a bit more complicated, but your family MUST learn to adapt also. MS isn't something that you caused or could prevent. The best you can do is just deal with the symptoms as they pop up in a way that works for you.
NorasMom - this is VERY helpful. You have no idea. Thank you. I am or used to be, a heat lover, hiking, etc - and now I have to sit them out. I appreciate you sharing as it makes things feel more normal, if that possible :-). Thank you!
NorasMom are you in mental health/medical profession? I can’t tell you how many times I find your responses reassuring and so helpful this one is a great example. Explaining that she has to be her best advocate and that a dx can take years and to learn and avoid her triggers. Are you taking new patients? Do you take my insurance? Seriously thank you
lol. What a wonderful boost to my ego! Thank you! No, but I was called "mom" by every group of friends from kindergarten on up, and then it continued through every job I had. I see myself as very quiet and reclusive, but I've been told repeatedly that I'm a good listener.
Hi CaliGirl. So sorry for all you are going through. M.S. can be very difficult to diagnose. I had years of symptoms before I finally got a positive diagnosis through a spinal tap. The best advice I can give you is do not give up. I know it's extremely frustrating. I had several doctors over a five year period tell me all sorts of reasons for my crazy symptoms, but they were all wrong. Many people on this site have stories to tell about their long journey to get diagnosed. Keep pushing through and eventually you will find a doctor who will help you and get you the answers you are looking for. Best of luck and keep us posted.
Thank you for the response and encouragement. It is very frustrating and hard to sit back and "relax" not knowing what it happening to your body. Def brings an appreciation to the good days. Thank you!
Welcome! Please don't feel that you need to apologize for asking questions.
What about your brain and neck arteries? Heat or dehydration can worsen a blood flow issue, to the point of being not able to use an arm for hours, or worse. In this case, the brain is freezing up because it can't get the nutrition it needs.
MS rule out wise, I think ophthalmologists should be looking at eyes.
Thank you for the feedback. The MRI of the brain and arteries both came back normal. I am meeting with my primary today to get a referral for Ophthalmologist. Thank you for the feedback.
You don't mention a lumbar puncture or blood testing. These are also included in MS diagnosis because they rule out or provide clues to other conditions and/or diseases. If you are not seeing a MS neurologist, perhaps that would be more helpful than a "by the textbook" neuro you have seen. My first MS symptoms were heat related but I wasn't diagnosed for another 25 years. I hope you find answers soon. We all know how hard this search for answers can be. I am thinking of you, wishing you the best.
Thank you for the feedback. Your comment of a "by the textbook" neuro is exactly where I am at. The neuro I am seeing is very much by the book and relatively cold. I am seeing my primary today to get referrals to an MS Neuro and Ophthalmologist. Thank you for the support!
Welcome my friend, I am sorry you are going through this ordeal and not getting the answer you need as well as treatment. Please don't give up, keep a journal of all your symptoms, maybe consider seeing a doctor who specializes in MS. Please keep us posted, and blessings to you. We are here for you! NeeC
Thank you for the support and encouragement. I have started a journal but find myself missing days so it is a good reminder to make it a daily habit. Thank you!
Welcome to the Forum, CaliGirl4141! I am so sorry you are having to go through this ordeal. Diagnosing MS still means ruling out everything else. I was diagnosed in 1980 or 81, I can't remember, I was as finally diagnosed with the results of a Lumbar Puncture. It took several months, but I think it was less than a year. Good luck, avoid the heat, no hot baths or showers, if you cook anything in a hot oven, have someone else take it out! That blast of hot air will do you in! Thinking of you, and wishing you the best.
As a heat lover, this breaks my heart but you are right. I have noticed that heat is a deal breaker for me. Thank you for the feedback and support. It means a lot!
As others mentioned additional work up would include a lumbar puncture with a blood draw at the same time to see if bands are in the spinal fluid and not the blood. Also, a visual evoked potential may pick up the vision issue.Glad the neuro did MRI of cervical and thoracic spine and not just brain.
MS sucks! I hope you are never diagnosed with it! The process involves suspecting you might have it, then ruling out any “mimic” ailments to end up with an MS result. I knew absolutely zero about MS prior to December 2022, after two decades of doctors missing the signs and symptoms. That’s two decades I could have been treated with DMTs but wasn’t. First advice, get to a Neuro that specializes in MS.
An “MRI” can show many conditions IF they are looking for it, likewise it can also miss them if you are not. First, they are rated in power with its resulting image resolution increasing dramatically. While a 1.5 Tesla MRI machine is common for diagnosis and works adequately for MS. A 3.0 Tesla MRI is preferred, not only higher resolution but with more and thinner slices per image. More importantly is the study requested. Did the MRI images looking for the “mini stroke” include “with and without contrast” imaging? T2/FLAIR images etc etc… don’t accept a brush off “it didn’t show on the MRI…”, especially if they weren’t looking for MS before the MRI. Finally on the MRI… you own the images. They are your property. Get copies. Make sure they include a reader program. By the way, that includes all your records. I take hard copies when ever I have to see a new doctor. Guess what… even the pros make mistakes. I have a challenged kidney and Tizanidine was suggested just last week. I reminded the PA of that. He thanked me and noted I’ll never be put on that med. This isn’t a broken finger or tonsillitis, you must advocate for yourself.
Lumbar Puncture! Advocate for it! The diagnostic protocol for MS resolves around the 2017 McDonald Criteria (sp?). (Correction after posting and review … you do need a lesion present) You most definitely can be diagnosed with MS without a positive MRI filled with lesions. Remind you current Neuro of this! If they brush it off RUN, don’t walk, to a Neuro that specializes in MS. If I had done this I would have been diagnosed 4 yrs earlier… and started treatment back when I could still walk unaided!
Finally, be careful of YouTube but MS Focus and MSAA can be trusted (no offense intended to other organizations…). Personally, I’ve learned everything to this point from watching both Dr Bower and Dr Ben Thrower MS videos. In this battle, the more knowledgeable you are is critical to getting proper care and treatment.
Ok my fingers tired from tapping the phone… as odd as it sounds, I hope they find your “mini stroke” and not MS.
Thank you for this level of detail. I had no idea on some these things related to the MRI so I will be digging into what was done and it how compares to the technical requirements noted here. I also haven't seen the actual images - just the report out - so great advice on getting the images too. I appreciate the recommendations for Dr. Bower and Dr. Ben Thrower - all of this is great as I start to educate myself. Thank you for your support and advice!
you sound a lot like me in the beginning. They did a spinal tap to finally get my MS diagnosis. Keep pushing for answers. See a neurologist. Medication helps to manage MS and it is important to get one the right one if it is MS. Good luck and stay strong.
Good morning. I was and maybe still am in a similar situation. I have a dx not of MS but I seem to have trust issues in doctors these days. I had and have some similar symptoms to you. I didnt see mention of a full spinal MRI. Lumbar Thoracic and cervical. If you did have this and I missed apologies. By vein, did you mean carotid arteries? You can also see a rheumatologist. Nothing to lose but a few $$ and a few hours. Well worth it if something comes from it. Read some reviews and try and find one that says they treat challenging cases. First thing.. get a new primary care doc!! My thinking is... I dont leave my health in the hands of a doctor. MY health.. MY body. I have to live with whatever decisions are made and doctors goals dont always line up with mine. Take it for what its worth. It highly likely you will find doctors that tell you that you are anxious or stressed. Pay no attention to this. I started to challenge these doctors, which didnt go over real well but made me feel better. "Can you show me a medical journal article that says stress causes xxxx? Or anxiety will elevate xxx blood marker?" "If your daughter/wife/mother called you from the ER and said she had trouble staying concious, dizzy blurry vision etc, would you tell her its nothing? The MS doc I challenged was like deer in the headlights. Very large egos are often involved. Find someone who does not have this, if possible. I am reading this and am coming off as hostile I guess. I have had very close to nonstop often times very intense pain for 2 1/2 years now with little to treat. Yes I am hostile.... Good luck. This board is a treasure trove of support and knowledge. Well wishes to you and all reading this.
Dan_NY - thank you for sharing this information. And, you don't sound hostile - you just sound tired! I Appreciate your willingness to share. I hope your pain subsides, I can understand your frustration!
If your full brain and spine MRIs have not shown any lesions then it is very unlikely that your symptoms are related to MS. Yes, there is the occasional story told about how some people have been eventually found to have MS after lesions did finally show up on scans after several years, but that doesn't necessarily mean they actually had MS when their early (and clear) scans were done. It's fairly simple, MS is a disease which produces lesions, no lesions found means MS is highly unlikely.
Maybe ask your docs about Functional Neurological Disorder. It is difficult to diagnose and like MS is a diagnosis of exclusion. One good description of it is that it's like a software problem with the brain rather than a hardware problem (which MS is).
Another factor which makes MS less likely and TIAs more likely is that, while you haven't specifically said so, it sounds as though your symptoms are fairly short-lasting - with MS they generally hang around for some time (like days and weeks without let-up), not last for a few minutes, or an hour or a few hours and then go away.
Unfortunately, your only option is to persist until you get some answers - good luck - sometimes it can be a long and very frustrating path.
Thank you for this great feedback and sites to check out. I appreciate all the information I can get at this point and would love a NON-MS diagnosis. thank you!
Ooops - I forgot to mention something important - around the various MS forums online and FB/Twitter or whatever pages etc you will that some people will tell you to demand a lumbar puncture because they claim that it is the "definitive" test for MS. There are two issues involved here which are misleading - firstly, whether we like it or not, Drs are the ones who decide what tests can/will/should be done, patients can only ask about or discuss test options, they cannot "demand" that certain tests be done, and certainly can't demand them on the say-so of people on various forms of social media.
Secondly, and maybe more importantly - a lumbar puncture test for oligoclonal bands in spinal fluid is not a definitive test for MS. As an invasive procedure it is done less often these days because other technologies have improved a lot, but it is still used when other tests such as MRI, evoked potentials, nerve conduction studies are inconclusive. Even then a positive test for oligoclonal bands can also indicate other conditions. And just to make it even more complicated, around 10 to 15% of people who are confirmed to have MS and have had a lumbar puncture will have a negative LP test - this is why it is NOT a definitive test for MS.
If you want to know more about how MS is diagnosed (from reputable sources) try some of the various MS organisation websites. Here's three good ones to get you started.
like Norasmom said, learn what your triggers and Adair. I too love the sun and heat, but they do not like me and cause my symptoms to exacerbate. I refuse to give up what I love, use a cooling vest, cool towels around your neck as well as a neck fan. My family is trained to find shade at ball games., picnics, at the pool, any outdoor activities. I also adjust my exercise so I have enough energy to do what we have planned, dinner out, etc. Hang in there you will figure this out. Life will still be good if that’s what you choose. Diff bug still good
I was misdiagnosed with mini strokes in 2011, then in 2019 I was on a jobsite and while talking with a customer I started slurring, I was afraid I was about to have a massive stroke. After my MRI, I learned it was actually MS. After mourning my old self for almost two years, I accepted the new me and started moving forward with my life. My wife has become my patient advocate and helps me all of my doctors visits.
I've learned about triggers and what mine are. The best thing you can do is to join sites like this and download the Bezzy MS app.
MS does suck as irhunter mentioned but you can have a relatively normal life. My wife was diagnosed in 1999 also without brain lesions and while not symptom free hers have been minor and she is still walking and has had a good life and back then the only drug was copaxone which she is still on. Please don’t be afraid the future is bright for the newly diagnosed. Best of luck.
Welcome CaliGirl4141! I'm so sorry you're having to endure such confusion & unknown. If you're located anywhere in CA(?) I'd recommend you request a referral & get yourself seen at Stanford University with an M.S specialist. They've seen so many varied presentations & have the absolute best in imaging tools/technology. I have lived with a diagnosis of "probable M.S" & "consistent with M.S" since 2002.I awoke one morning with numbness & tingling down one side, scalp, earlobe, etc. Vision disturbances, etc.. Stroke activity ruled out. MRI showed 4 small lesions. Have had flares in hot weather, too but I have more symptoms in Cold (I live on the Central Coast where Temps get up over 100° & down in the mid 30's) I've been shuffled around by Dr's & lived without any answers for way too long. Last year I was finally able to experience the incredible folks at Stanford & established care with a team...yes, a team of experts who take their time & LISTEN to you. You will absolutely feel seen & cared for. Do not settle for anything less than what you deserve. I sincerely hope you find the answers you seek.
I am sorry your journey took so long before you got answers. I appreciate the tip on Standford. I am in MN and am actively waiting to get scheduled at the Mayo which is probably on par with Standford - I am hopeful it will lead to a better understanding of what is happening.
CaliGirl4141, Many neurological diseases mimic each other symptoms in the beginning and it's hard to tell them apart. That is something most of us went through, and the only way to get a definitive answer about having MS is to do a spinal tap and look for a certain protein in the spinal fluid that indicates for sure you have MS. White lesions in the brain do show up on MRIs in MS, but usually, it's as your MS progresses or you discover your MS during a later phase of the disease. Anytime a doctor diagnoses that you might have had a mini-stroke you need to take it very seriously as that could be the warning sign of a bigger stroke to come. We are not medical doctors, so we can't give you medical advice. We can only share common experiences. The only way to truly rule out. MS in the beginning is to have a spinal tap done and a specific test run to look for a protein In the spinal tap fluid. When this protein is found you definitely have MS. With many diseases, there are certain triggers that make them worst period for many people with MS, heat is a big one that we have to be conscious of and keep our body from over heating. So as other people have suggested in the chat room. Remember the triggers that seem to make your body. Respond negatively and try to stay away from them.
Never, ever apologize for asking questions or seeking help. The only thing you have to apologize for is when you don't ask questions for fear of being thought of as inadequate or stupid! Please keep us informed and let us know what the doctors find out. Until we hear from you again, please take care. Fancy59.
So sorry to hear that you are going through this. I know how frustrating and frightening it is to be in a situation where doctors can't provide a clear diagnosis. Glad that you reached out for help.
Before doing research, I would have thought that it's not possible to have MS without lesions. But I found this info: "Paroxysmal symptoms are unusual manifestations of multiple sclerosis (MS). When presented as the first clinical manifestation, paroxysmal symptoms may easily be mistaken for transient ischemic attack (TIA). "
The publication also includes these statements:
* Paroxysmal symptoms in MS can be differentiated from TIA by their brevity (usually seconds to minutes), frequency (10–20 times per day up to a few hundred times per day), relatively long-clinical course (tend to continue in clusters for days up to a few months), and positive response to carbamazepine.
* Differential diagnosis of MS cases presented with paroxysmal symptoms from TIA is important for early diagnosis of MS and early initiation of the disease-modifying therapies.
Hope this info is useful to you. Wishing you the best on this journey.
Sure thing. It's an unfortunate truth, but we have to be our own advocates on this health journey. Doctors, even well-meaning ones, often have blind spots around things. We have to keep looking until we find doctors who listen to us and take our questions seriously.
If you get a diagnosis of MS and you're asked to choose a medication -- known as a DMT (disease modifying therapy) -- here are 2 tools from the UK that I've found useful. My neuro (in the US) just handed me brochures for meds and asked me to pick one without offering much guidance. It wasn't easy to compare the options without some kind of framework.
Both of these tools compare DMTs on the following factors so that you can identify what fits in best with your specific goals and preferences:
Hi CaliGirl4141, Welcome to a very informative group. You will learn a lot. I am sorry you are going through this. I never thought that losing my balance and dragging my right foot would lead me to being diagnosed with PPMS. MS treats everyone differently. I know it's hard not knowing what's going on with your body but don't give up. You will find out. Hang in there. 👍
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