People with MS commonly have visual issues that often makes reading large blocks of text difficult, if not impossible to read, so i'm re-submitting your post with spaces:
"Hi there! I am new here! I am a 21 year old female who has been having kind of weird symptoms since April 14th(just two weeks after my 21st birthday :'( ).
Firstly, I wan’t to apologize about how long this post is and I am sure there are other people who have posted these questions before, but I just really need some advice. So, It started with headaches that triggered migraines that made me go partially blind in my left eye(my doctor diagnosed me with Ophthalmic Migraines).
I had never had migraines before, so my doctor was concerned and I had an MRI done. Apparently it came back fine? I am not really sure because it took 2 weeks for anyone to call me about it, and all I was told was that I didn’t have a brain tumor lol… Anyway, a few weeks later I woke up and the left side of my body was numb.
I didn’t think much of it; I just thought maybe I slept wrong or something. While at work a coworker of mine told me that she suspected I had MS, but I didn’t really know what it was so I just brushed it off. Eventually, I saw an ENT doctor and he said everything was fine. But I was still getting new symptoms like everyday it seemed like.
It mostly started with cognitive issues; like memory loss, concentration, etc.. Typical brain fog symptoms. I brushed them off as migraine symptoms and my doctor scheduled me for blood work. They took 8 vials of blood and tested EVERYTHING. I am talking everything from a normal CBC to like my B12 and Lyme Disease. Everything came back normal, except all of my white blood cells were low. No one seemed concerned however, so I let it go. But I was still getting weird symptoms.
I now started experiencing physical symptoms at this point. And this is where I started to question whether or not I had MS or it was just stress. So, for example one night I was getting ready for bed after work and out of nowhere I started getting like this tingly feeling across my chest. It started in like my under arm area and then wrapped around the front of my chest.
I didn’t have any pain or tightness, and it was rather short. But it was weird. Later that night I had that same feeling on the center of my upper lip. Again it only lasted a few moments and then disappeared, but it was weird.
Every once in awhile I will go through like a period where my legs/arms are constantly falling asleep and/or tingling. One night at like 3AM I woke up and realized the center of my right hand was tingling, again weird.
I also woke up one morning a few weeks ago and I went to grab my phone next to me with my left hand and it literally felt like there was lead in my arm; it was SO heavy it just fell back down on my bed. I have also noticed that it is very difficult to walk in a straight line, I always have to pay attention to how I am walking or standing or else I am stumbling all over the place and falling down.
I have never been a very balanced person, but I at least could walk in a straight line. It’s like I’m telling myself something and my body is doing something completely different? Anyway, so back in July I ended up seeing a Neurologist. My first appointment went pretty smooth. He told me that my eyes were “unusually dilated” and “weren’t really reacting to light”, but didn’t go on to explain what that meant, idk if it is relevant or not?
He told me he was going to review my MRI again because he couldn’t believe it came back clear. Again, I heard nothing back. So, maybe it is okay after all? My next appointment he acted like we never met though, so?? But I have no idea(that’s why I am here haha). I had this MRI done in May though.
Fast forward to like the end or July/early August. I woke up one morning and I felt like I had been hit my a freight train. I was physically drained, and my body was burning in pain. I could barely move it hurt so bad. My lower back hurt so bad it took me forever to sit up. This lasted for about 2 weeks and slowly went away. I still had a lot of the fatigue though.
My last neurologist appointment I explained to him that I had also been experiencing this really intense burning pain in my left cheek bone and my jaw. This pain was excruciating! I ended up taking some of my emergency pain meds that I had never taken before to try and dull some of the pain. He basically explained that it appeared like I had Trigeminal Neuralgia(?) but it could just be caused by a viral infection… and then proceeded to ask me if I have herpes lol.
So, basically I have gotten no answers and I am going to Disney World for 14 days in December and I am terrified. I walked to and from work yesterday(It only takes about 15-20 minutes to walk there) and I kept waking up in the middle of the night in excruciating pain in my entire body. I could barely walk this morning.
I have been having the body pain for about 3 weeks straight now; it is more of a burning pain. Some days it’s a bit better, but other days it is debilitating. I also experience dizziness and lightheadedness. It gets worse in heat. My symptoms get 100x worse in heat tbh. I don’t know about cold yet though.
Thank you so much to anyone that actually reads all of this(haha), I know it is EXTREMELY long and I am very sorry about that! I just really could use some advice, that’s all. Thank you again!"
Hi and welcome,
What you have described is highly unlikely to be related to a neurological condition like MS....specifically because of the way damage from brain and or spinal cord lesions present and new symptoms develop over the years, conditions like MS basically can't cause symptoms to 'present' all over the body, move around or move from one side of the body to the other or move from upper body to lower or vice versa, be in all peripheral limbs, rapidly multiply in weeks or months, happen once for a few seconds, cause a new symptom every day etc
Which are some of what you have described has been happening to you, and would actually be pointing away from neurological conditions like MS from being the causation...
It's possible you've been focusing on one significant something being wrong with you to explain the different issues you've experienced and you've been connecting anything and everything together trying to make sense of it all, when these types of issues are much more likely to be migraine related and or additional yet separate unrelated medical issues that just coincidentally have all happened since you started experiencing migraines and gone through the different testings.....
Consider the more likely possibility of the common causes of the things that you've experienced eg 'waking up' with a numb side or arm or hand is typically just from prolonged compression of the nerves and disruption in blood flow by your sleeping position, the same thing can happen when sitting or laying down (awake or asleep) if you remain in a poor postural position for a prolonged period.
Basically the numbness-pins and needles-tingling feeling from postural positioning is only temporary and normal sensations soon return once you change position and the nerve and blood flow is no longer being compressed-disrupted.
Though keep in mind because you've additionally been experiencing back pain and keep waking up with pain for a few months IF it's not something you can associate with an accident or specific physical activity ie the gym, mopping floors, lifting something heavy etc etc etc it's actually possible the type of bed your sleeping on to be causing spinal problems.
btw Migraines (with or without ocular or pain) is a common mimic of neurological conditions like MS, stroke etc back issues can even cause Migraines. The Trigeminal Neuralgia symptoms could possibly be wisdom tooth related, which is more common in your age group. The same-similar symptoms of Trigeminal neuralgia in young adults are more typically TMJ,
Migraine headaches, Sinus related, Cervicogenic headaches etc
Dilated pupils and pupils not responding to light normally can actually be a side effect of different prescribed or over the counter medications as well as rec drugs, viruses, alcohol, sports injury related, it is also associated with ocular migraines and for about 20% of the population it's even normal.
I would suggest you go back to your general dr for a check up, explain you didn't get any answers from seeing the neurologist but more recently you've been waking up with a lot of back pain and finding it hard to move, and that you've also been feeling dizzy and lightheaded.
I hope that helps......JJ
re-submitted with spaces...
"Hi thank you for commenting! However, the first comment is not exactly accurate because you see, everyone with MS experiences it differently so you cannot really generalize it.
Also, I happened to check out your profile and would love to hear where you went to medical school? You see, if it wasn't neurological I would not have been A) referred to a Neurologist in the first place and B) continuously keep seeing my Neurologist every 6 to 8 weeks that costs me a $45 copay each visit.
A NEUROLOGIST could very easily tell if something was Neurological or not Neurological and would have referred me elsewhere by now. That being said I did not ask for you, or anyone, to basically tell me my Neurologist was wrong in diagnosing me with TN(I did NOT write this to be "diagnosed" with anything. I just wanted useful advise from people who actually had MS).
It is not caused by wisdom teeth pain because I have never actually had wisdom teeth(no one in my family does btw). And like I said in my original post, I have been to an ENT doctor and he told me there was nothing in my ears, nose or throat that would be causing my headaches/pain, so it isn't sinus related.
I also know for a fact that my back pain has not been caused by my bed because I just switched out my old mattress(last September) because it was very old. My back pain and muscle pain come and go, but I do not know specifically what is causing it. Hence, why I was asking for ADVICE.
I have had blood work done to check to see if it was something none Neurological first. They thought maybe I had Lyme Disease, but that test came back normal. In fact, everything came back normal except ALL of my white blood cells were low.
Thank you for your unsolicited "advice". I just wanted some harmless advice from people with REAL experience and instead I am getting some phony-bologna-I-know-it-all "diagnosis" from someone who does not even have MS nor a medical degree. I, just like most people, do not WANT to have anything be wrong with them.
However, I have been dealing wit this since April and I am desperate for answers. I know that something is wrong with me, but I am just trying to figure out what it could be. Everything else has been ruled out and this feels like my only other option now. I would rather be told I have MS than be told they don't know what is wrong with me and rule it out as "stress" because what the heck am I suppose to do with that?
Believe me when I say, I did not want to believe my coworker when she told me she thought I had MS. It took me until maybe a month or so ago to actually start researching this. I am desperate for answers because it is making it slowly more difficult to function in normal daily life. A year a ago, I used to be so energetic and basically a normal 20 year old. Now, I feel like I am an elderly woman with arthritis. I am in so much pain all the time, and I have no idea why. I just need answers, if you can understand.
P.S. I know a lot of these symptoms can just be written off as either stress or migraine symptoms but they happen when I am not stressed and I have not had a migraine in I don't know when because I am taking daily preventative medication. I do still get headaches every once in awhile, however, they don't usually change or trigger the other symptoms."
For the record, as you did not state you had been diagnosed with anything specific, you were 'only' provided with a few but not all of the different explanations that also cause the same and or similar symptoms for 'you to keep in mind as possible alternative explanations' whilst you are in medical limbo and looking for answers...
btw it's been many years and thousands of posts since i've updated anything about my own personal situation, you should never ever assume you know someones entire-complete story from what they've only chosen to disclosed online.
I 'respectfully' suggest you take a step back for a moment, take a calming deep breath and when you have a calmer and more open minded head space.....read what you wrote in your initial post and re-read the 'exact wording' of my response to the small amount of information you disclosed and hopefully you will then be able to see the response i gave is chalk and cheese from diagnosing anything.....
In regards to your understanding about MS, you said... "the first comment is not exactly accurate because you see, everyone with MS experiences it differently so you cannot really generalize it"...
You are absolutely correct that each MSers experience with this disease is unique, but it would be misguided to completely ignore or disregard basic condition facts trying to make what you've mentioned experiencing fit MS......Multiple Sclerosis literally means many scars and unfortunately or fortunately, depending on how you want to look at it, there are over 300 different types of neurological related conditions and a lot of symptoms, clinical signs and test evidence overlap, additionally because MS is a disease of the 'central nervous system' there are hundreds of other types of medical conditions that also cause a lot of the same-similar 'symptoms'.
There are a lot of MS red flags, to give you a basic idea see https://www.slideshare.net/AmrHasanNeuro/diagnosis-and-red-flags-in-multiple-sclerosis. OR https://books.google.com.au/books?id=vb84AAAAQBAJ&pg=PA44&lpg=PA44&dq=red+flags+symptoms+inconsistent+with+MS&source=bl&ots=NQWpV7_nFd&sig=GwHF0i8JMMUJY-D_RxTkamEUknQ&hl=en&sa=X&ved=2ahUKEwik46aFsvndAhVTUd4KHQvZDt4Q6AEwD3oECAEQAQ#v=onepage&q=red%20flags%20symptoms%20inconsistent%20with%20MS&f=false
note page 44 table 6.2 'red flags of MS symptoms and signs' lists some of the red flags you mention eg total body complaints, sudden ie seconds to minutes onset of symptoms, positional symptoms.
exerts: "Changes in cognition and effect are common in MS, although generally not as a presenting symptom...." "the most common, single presenting symptom in MS is Optic Neuritis which generally involves unilateral vision loss. 90% of patients present with pain moving the eye and often describe their vision loss as "like looking through a screen or petroleum jelly"..."
"Trigeminal neuralgia, in particular can be troubling for patients, and MS should certainly be considered as a potential cause in young female patients presenting with this condition, particularly if it is bilateral...but it is useful to have patients seen for dental evaluation to exclude Temporomandibular joint (TMJ)......"
"..complaints of total body pain, like total body weakness, are not typical of MS." "The symptoms help diagnose MS, How ever, the diagnosis of MS is not based on solely on symptoms as they may have many other causes."
Approximately 10-15 % of people are misdiagnosed with MS, misdiagnosis goes both ways, in 2017 Muliplesclerosis .net published research stating 42% of MSers in the US were initially misdiagnosed with something else before being dx with MS eg 25% dx with Depression, 16% Migraine, 14% Fibromyalgia, 13% some type of psychiatric disorder, 11% B12 deficientcy, 10% chronic fatigue...
There are typically MS suggestive-consistent symptoms, symptom patterns, as well as objective abnormal neurological clinical signs, specific diagnostic test evidence to corroborate demyelinating brain 'and or' spinal cord lesions (scars) causation and those that typically point away from neurological conditions like MS as a likely causation....MS maybe unique but MS caused symptoms will still 'present' and match what's typical of brain and or spinal cord lesion(s) damage physiology and symptoms need to be suggestive of CNS syndromes that occur in MS and if they're not like sensory or motor symptoms involving the entire body which is 'rarely' related to MS, MS would be an unlikely explanation.
Peace, and good luck finding your answer......JJ
Please note, personally attacking anyone online because you don't like the answer you sought is never a good idea...i did not and would not attempt to diagnose you or anyone, no one can diagnose you online, not even a neurologist so if that is what you assume i was doing then you are completely misunderstanding the information you were being provided with!