First let me say that I have not been diagnosed with MS. I suspect that I have MS or some other autoimmune condition.
First, I have my first appointment with a neurologist in a few days. I thought I would bring a list of my symptoms/timelines over the last several years. Any advice or recommendations for this first appointment?
Second, I'm going to summarize my symptoms over the last year. Please let me know if you have experienced something similar. Back in April 2023 my left eye was visibly twitching for 3 weeks. That stopped but was replaced with a crawling sensation on the left side of my face (note, not crawling as in something was crawling on me, but like the tissues under my skin were moving). That lasted all summer-fall. In that time I experienced three different events that might have been mini seizures (example: feeling frozen in time for a couple of seconds or feeling a closing-in sensation in my brain and like I was about to lose consciousness). After the third episode in late November, the crawling sensation was slowly replaced with waves of pressure in my head (along with ringing ears) that got so bad I almost went to the emergency room. Went to urgent care instead and they told me my sinuses were inflamed and prescribed Flonase to bring down inflammation. While it helped a little, I am still dealing with pressure in my head and ringing ears. This has been going on for almost 3 months. Let me know if you experienced a similar progression or if you have experienced relief from inflammation by using natural vitamins/herbs. I started taking black seed nigella stevia.
Thank you.
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HMay13
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I haven't experienced what you describe myself - but "everyone is different" (You'll hear that a lot!) so maybe others have.
Taking a symptom timeline is a great idea. I'd suggest you also take a list of questions you'd like to ask and a pen and enough spare paper to note the answer and anything important the neuro says - or a device to record voice notes on. Don't be shy about asking questions - "better one question too many than one answer too few." And take a list of any medicines you take, for anything.
I find it useful to take something to do in the waiting room - I can't concentrate on reading in waiting rooms but I find a puzzle book useful. Also I take a water bottle and something to eat after the appointment - chocolate always helps.
I hope it goes OK - do come back and tell us what the outcome was.
Thank you very much! I didn't think of taking a list of questions. I will do that. If you have suggestions for questions let me. I'm early in my journey and I might not think to ask some important ones.
This is not really the time to be asking questions from a list. You want to be sure that the doctor gets a good medical history on you and you will need to be answering his/her questions. Ask for information about what you are asked, but don't be asking questions about MS or about how your symptoms fit. The symptoms that you mention are mostly sensory symptoms; have you had any physical symptoms like weakness, bowel or bladder problems, etc.? While eyelid twitching (fasciculations) occur in a lot of people with MS, they are so common in the general population that they are not really considered a symptom of MS.
My eye twitching is not my main concern. That's just where the issues on the left side of my face started. I've had other inflammatory episodes over the last few years, though they didn't last as long as this current episode. I also had an episode where it felt like my left leg went half asleep for no reason and my left arm followed about an hour later (not numb or paralyzed in any way - I actually still did my weight lifting workout). That lasted almost an entire day.And I won't ask my doc questions about MS. Just questions about my symptoms and what may help me. I will direct my MS/autoimmune questions to this community for now while the neurologist sends me in for appropriate tests. While I suspect MS based on my symptoms and the research I've done, I am not necessarily convinced I have MS. I do think it is likely I have some sort of autoimmune condition (won't go into all the reasons I think that, as there are many).
I guess the main questions at this stage are "What do you think it might be?" and "What happens next?" If it is MS you won't get a diagnosis without at least an MRI scan, probably a lumbar puncture, maybe blood tests, goodness knows what else if it's not MS, They say patience is a virtue, but it's more like a necessity!
Definitely a necessity! I expect it will take a while. I'm just glad I finally found a primary provider who is taking me seriously and referring me to a neurologist.
I agree with taking a list of all you are questioning. I hate to leave an appointment (with any doctor) and say, "crap, I forgot to ask...." I put my questions in my notes on my phone. It may not be MS questions at this point, but you obviously are wondering about things.
Sounds like you have a good approach to your first appointment, best wishes and although this is a great group, still hope you don't have to join
First appointment: Keep your list brief and to the point, with as few words as possible. "Eye twitching", "facial spasms", etc. If you hand the doctor a thesis, he's going to skim over the first few words and then shut down. You can discuss the list in more detail from your own lengthy notes, but don't ramble.
I would also recommend taking a close friend or relative, if you're comfortable with that. They may catch information that you don't hear or ask questions you haven't considered. After the fact, you can compare what you both got out of the appointment. Taking notes or remembering what the doctor said has never worked for me.
As far as the symptoms, I want to say that I've had all of them except the ringing in the ears. The pressure in my head was initially diagnosed as idiopathic TIA's, but my neuro later confirmed that he believes it was just yet another MS symptom.
Thank you! I will try not to ramble too much, but so much has been going on! Lol Will stick to the most concerning events. And I will also provide an update after my appointment.
Expect a neuro exam where they test reflexes, eye movements and much more. This will help determine if there is something amiss in your central nervous system. After the neuro performs the exam and gets a history of what's been happening they can narrow down some possibilities. That will lead to testing to help identify the disease, such as MS, seizure disorder, etc. There are so many neurologic disorders that have same or similar symptoms that it may take several tests to figure it out.
Don't expect any clear answers on the day. The most likely "outcome" will be referrals for tests such as full blood tests (to rule out problems such as a B12 deficiency, to look for auto-immune antibodies etc), probably an MRI, maybe evoked potentials and/or nerve conduction studies. It's likely that a lumbar puncture to get CSF for testing will not be considered until results of other tests are known - despite what some people like to proclaim, a lumbar puncture is not a definitive test for MS, it's just one test, and these days is not one of the first tests done and is more likely to be the last one done, and then only if all other tests are still inconclusive. (I'm not going to explain all these tests in detail - you can get good info about them on one of the reputable websites run by the many MS organisations around the world - one of the really good clear ones is MS Trust in UK - mstrust.org.uk/a-z )
While some people get a quick clear diagnosis, for others it can be a lengthy process - especially as it is a diagnosis of elimination of other conditions - there are many that mimic MS and need to be ruled out before a patient can be told "You have MS".
Thank you! I will check out those links. I'm glad to know a lumbar puncture is not one of the first tests. Question about the MRI. I had a basic MRI (no contrast) and nothing showed up. I've read some things about CT scans and how they can show more than MRI. Have you (or anyone reading this) had both? And did it make a difference in the findings?
No - CT scans are not used for MS diagnosis - if they did show more than MRIs do then they would be used - especially they are certainly a lot faster than MRI is - a whole-of-body CT scan can be done in a matter of minutes, and MRI of just a brain takes quite a lot longer than that so if you start to add in cervical and thoracic spine into an MRI you can easily be looking at spending an hour in the MRI machine - and in medicine time is money. Also, with MRI they do multiple scans of different types. This very very long article should help you understand MRI.
These days contrast is often not used with MRI scans - improved technology etc shows things more clearly. Contrast can help show if inflammation is current in lesions, but it's not necessary for it to be used for lesions to be seen. Reduced usage of contrast is also partly due to it being found that some contrast medium remains in the brain, and it's not sure what future impacts of this might be, so usage is now generally kept to only when it is really essential.
If the result of the MRI you have already had was that "nothing showed up" then it is unlikely that you have MS. No lesions generally means no MS - and contrast won't reveal lesions, it will only help indicate if they are active at the time that the scan was done. The symptoms you've said you have are all sensory one and above your shoulders so an MRI of any parts of your spine is unlikely to be done.
It's important that you don't thing of what you have as being any specific illness or condition - if you do this you run the risk of unintentionally not giving the neuro full and accurate answers to questions they may ask you - because (without doing so deliberately) you might downplay or ignore info about what you are experiencing if it doesn't fit with what you think you may have.
Good info on the MRI. Thank you. I will take a look at the link. The MRI I had (brain only) only lasted about 20 minutes. Hopefully they ran a full spectrum of images on me.
I've had other symptoms aside from the ones in my face and head. These are just the symptoms that finally got me referred to a neurologist. I'll share everything with the neuro and remain as objective as possible. Up until now my symptoms have been blown off as a result of anxiety and stress, and that's just BS, lol. Something is definitely wrong and it is not my mood. I suspect MS or other autoimmune disease based on my other symptoms over the last few years and own research but don't necessarily think I'm right.
That's good info. Next time I have an MRI I'm going to say no contrast. Because if they don't see new lesions then I wouldn't have needed the contrast for new active. So far I've been stable for several years.
Just posting an update here for those who are curious.
Had my neuro appointment this morning and went over my history and all my symptoms. He's perplexed! 😂 He is sending me in for another MRI with contrast, since the last one was without (and the facility I previously went to doesn't have a neuro trained radiologist, so they could have missed something). He said MRI with contrast is better at picking up areas of inflammation. I am also going to the eye doctor to have my nerves evaluated for inflammation. These tests will both happen in the next couple of weeks. Hoping for some answers...
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