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Early Signs of MS? Advice? How should I Move Forward?

Hi Everyone,

I (25y/o Male) have had an interesting year so far. On May 15th 2021, I began to have cramps in my abdominal region and sides, almost to the equivalent of a hug or squeeze with random pulling/cramping. With that, the frequency in which I used the restroom increased to 8, 9 or 10 times a day (Urination). I also developed a mixture of diarrhea and constipation, as it almost felt like my insides were paralyzed. This continued for about a week, getting more and more intense. I thought it was diabetes, got that checked, negative. I felt a bit at ease. However, the pain amplified and on May 26th 2022 I was standing outside on our first hot day (81F, Sunny) and started to feel a little dizzy. Rushed back home and continued this feeling. Thought I was dehydrated or loopy. I then drove back home and went on a walk outside. Immediately, I became delirious and walked super slow. My friend (Who will be with me my whole journey during every episode), started to get nervous as this was the first time I had done this. I started to minorly slur my speech too. Once I cooled down, my symptoms decreased a bit (Mind you, abdominal squeeze does not go away during any of this). Once we are back in AC and I'm feeling *less delirious*, I go to bed. I wake up, go to walk to get breakfast before work (~8am) and I feel the same thing on this muggy hot morning. Immediately I start getting woozy, feeling disoriented, and slurring/stuttering my speech. I could read signs, but not say them aloud (Aphasia). We walk back and I immediately sit down in the hot back yard and fall to the ground. I was rushed to the ER, and they did a Chest X Ray and said I could have just been dehydrated and that is why my speech was going. Fair enough, even though I drank 5-6 bottles of water the day prior. Who knows? Anyway, the next day things get worse... I out of nowhere develop a limp. Its more apparent on my right side, but my left side is only slightly stronger. My speech declines, I cant critically think and my muscles hurt real bad. Out of nowhere, I can't swallow. I literally choked on water... so now my friend has to blend food up because I cannot eat properly. I go back to the ER at a better hospital and they suspect I had a stroke. Negative. They perform a Brain MRI to which they see, "Curvilinear enhancement within the right postcentral gyrus on the axial sequence (series 14 image 22), not appreciated on coronal sequence, may represent capillary telangiectasia. Right frontal centrum semiovale prominent perivascular space". Two lesions. They do a spinal MRI and say I have a straightening C Spine, but no signs of degenerative disease. They said "Since its not tumors or anything life threatening" they release me, and refer me to outpatient. Which is totally fine.. understandable and thats literally CDC protocol. Once I am released after 48 hours (June 4?), my symptoms stay stagnant for the next day or two. Then they slowly started fading away unti I reached almost complete normalcy on June 14. I visited my PCP on June 9, and we ruled out anything life threatening, Lyme test was Negative and we suspect its Hemiplegic Migraines... so he tells me to bring that up when you see a Neurologist next month.

Everything is all fine for about four weeks, until July 7. I woke up to the same abdominal cramps and diarrhea/constipation mix again. Great. I assume I had food poisoning and laughed it off. The next day muscle pains overtake my whole body. My neck and arms were literally burning, burning like I have never felt before. The pain was unbearable. I slowly lose my ability to walk by July 11. Its like my legs did not want to move and my muscles were on fire. My speech starts to go by July 13 and I am at my worst on July 15-17. The pain was constantly there, the muscle cramps were also there with other symptoms, but when I would go outside into the humidity... I would start perfusively sweating and my symptoms would get even worse to the point where I couldn't walk further. I would be drowning in sweat (It was only like 83F outside). At nights, I would feel delirious and not myself, almost as if I was on drugs. When I would fall asleep and be completely calm, my friend would feel me and say I was burning up. I had a 101 degree fever on the night of July 16 and had excruciating muscle pains. I then visited my Neurologist yesterday, and I was doing okay/able to manage pain, I drove there, and as soon I got out of the A/C car to the Humid outside, I was consumed in sweat. The three minute limp-walk was brutal.

When I get to the neurologist, after spending 15-20 minutes drying myself off and cooling down, I get sent back in. I am very brain fogged at this time, no idea what is really going on, not anxious at all. They take my B.P. and its 150/90. Which is normal for me. Somehow I have had high B.P. for almost 2 years on and off now. Never have been lower than 120/78. I don't have white coat either since I work in a related profession. The nurse thinks this is bizarre as she takes my information/symptoms down. However, the neurologist comes in and looks at my symptoms, MRIs, CT scans, etc. She says your symptoms rule out Hemiplegic Migraines since you have no headaches. Rules out ALS. Rules out pretty much everything. After she is done, she does like a very basic three minute check of my neurology. My reflexes were all 1s and 3s and 4s. Im limping horribly. Sweating prefusively. I am leaning over while she is talking to me, switching positions because the pain is that bad, and of course Im randomly tremoring. I'm muffling my words because its easier not to use my tongue too. She says my MRI lesions are normal and not too worry and everything checked out. Her head doctor came in and reassured me it was nothing major and made a comment along the lines of "Now could this be in your head?" ... I was struck. The doctor also said "You are too young to get X Y and Z" and basically my 15-20 minute visit was wrapping up with a "Try these medications to help you sleep and feel better". I am not syaing the neurologists were wrong, by any means, but some of the comments made me feel like they thought I was lying.

I brought this up to my 25 y/o cousin in residency in Medical School and she was lost for words. I gave her a snyposis of what happened and sent her my test results, including my MRI. She said that the two lesions I have are NOT normal and my doctors shouldn't be dismissing me like that. She consulted with her friends (Some of who are in Neurology) and they said, these are really early signs of MS. They asked me if my vision goes, I said randomly I get white spots in my vision that I can't clear. My eyes hurt to move them. And years ago I would randomly have twitches and muscle pain/eye pain for weeks at a time, for it to go away randomly.

Now I understand I only have two lesions that are possibly normal, and no spinal lesions, but a straightening C Spine, and a lot of other early signs of MS... the only condition they truly didn't rule out, but said I was too young to get. What should be my next step? Im coming down from this episode slowly and can't really critically think that well so I am confused. I'm hearing "Your too young to get X and Y, the lesions are normal and your symptoms could be in your head" from my neurologist, but I am also hearing "Dude, these lesions are not normal and you have very early signs of MS". I am only coming to this forum because I read a few case studies with near identical situations as me that turned out to be MS.

Has anyone had a similar experience? I am so confused on what to do? Should I get a second opinion or wait it out until down the road? I appreciate anyone with any advice during this time. I will post a complete list of symptoms below.

-Tightening/Squeeze/Pulling/Cramps/Sharp Pain on Abdominal Region and Sides. Tell tale sign.
-IBS symptoms. Frequent Urination and Constipation/Diarrhea.
-Eye Pain when move eyes, white blurry spots. Vision will become blurry too at times. Just very painful, no sensitivity to light.
-When I point my head downwards I get an AWFUL pain that goes throughout my body and absolutely horrid spinal pain.
-Body Aches, tremors, spasms, tightness and burning in muscles.
-Aphasia. Can read words, cannot repeat them.
-Slow, stuttered, and slurred speech. Occasionally muffled.
-Burning up sensation, accompanied by fever.
-My muscles give out, will drop glasses, fall down etc if use too much.
-Huge sensitivity to heat and humidity. Will sweat a LOT. Sympotms get worse in heat.
-Absolutely horrible spine pain.
-Delirium, brain fog and confusion.
-Whole body tremors.
-Limping/gait issues.
-Pins and needles
-Numbness very easily. (ie, my foot goes numb from my shoe when I walk)
-MRI: Showed two lesions (Capillary Ten. as a Curvolinear Enhancement and a Right frontal centrum semiovale prominent perivascular space), straightening of C Spine. No dark spots.
-Cold Sores on lip during these episodes, which I get sold sores almost every time my immune system is down (Colds, Flus, COVID, when I get bad cuts etc).

I appreciate everyone. I just want to say, I am not making these up. These symptoms are very real/in my head. I'm not limping and walking around with brain fog for fun. I would never do that and I really felt hurt when my neurologist said that. (Even though I failed every test...). It made me a little depressed last night, I am not even going to lie. My roommate and family/friends are beyond upset.

  1. Hi . Anyone can develop brain lesions for a number of different reasons -- head trauma, disease, stroke, MS -- but that doesn't make them normal. Your symptoms are clearly not in your head and you deserve answers. I am so sorry you are going through all this. Unfortunately, the brush-off you received from the neurologist is not uncommon for people with autoimmune diseases seeking a diagnosis. It can take a lot of patience, persistence and self-advocacy to finally get a diagnosis. Not all neurologists are equally familiar with MS. Someone who understands MS probably would have ordered a lumbar puncture after finding the lesions to look for proteins commonly found in the spinal fluid of people with MS. Have you considered getting a second opinion from an MS specialist? The National MS Society has a tool for finding one in your area. Here is a link: I hope you get some answers and some relief. In the meantime, know that we are here for you whenever you need support or a place to vent. Thinking of you. - Lori (Team Member)

    1. Thank you so much!!! I made an appointment with a doctor on that list CERTFIED in MS Care!! None of my neurologists were. I am bringing my friend to my appointment in October who has witnessed this all to back me up and give better insights, just in case.

      Also, quick question, what is the term for a nerve/muscle pain at the base of your neck/directly ON your spine that brings stabbing and throbbing pains throughout your whole body? Almost like a pulse of pain after you use those muscles?

    2. I am thrilled you got an appointment with an MS specialist, ! Is the wait long? I am not sure what to call that type of pain, but you could ask in the Forums section. Here is a link: I hope you get some real answers this time and some relief. Keep us posted if you are comfortable doing so. Very best of wishes! - Lori (Team Member)

  2. Hello - I'm sorry to hear you're going through such a hard time . Definitely good news that you found an MS specialist. That's key. Two quick things: 1) I'm not sure this is the spine issue you're referring to, but look up Lhermitte's sign. It's not exactly in line with what you're describing but I thought it was worth a mention. 2) Also heat definitely can be an issue for people with MS (including me). I remember reading somewhere that before modern medicine, they would diagnose MS by putting the patient in a hot bath and seeing if their symptoms got worse. I'm sure there are other diagnoses that are exacerbated by heat, but just another data point.

    I hope you get some answers and relief. If it is MS, there are medicines to help you. And if it's not, that answer will narrow the field, I'm sure. Good luck and keep us posted.

    1. Hi thank you everyone for your responses. Lhermitte's sign is what it was. That comes and goes. I am constantly brain fogged and delirious. Day 16 of this current episode, and I had another big flare up today with little loss of awareness, brain fog, walking abilities are decreased and increased heat sensitivity. Muscles are painful if I stand too long. I'm very tired/no energy.

      My appt is in October. I've tried at least 20 symptom trackers and MS mimics... and I have eliminated all of them. If it is not MS, I don't know what to do because I cannot deal with this anymore. Its been three months of two episodes, the second of which is worse....

      1. My first episode in May I ended up going to the ER and they assumed I was having a stroke. MRI only showed two small (Possibly normal???) lesions on my brain. They said this might be a one and done thing and sent me home. It took me two weeks to get better. I had NO Spinal Cord Lesions, note.

        Now on July 9 2022, my second episode started. The symptoms are a bit different and some are stronger than others this time around.. however, I have had excruciating back pain and AWFUL neck pain. It was unbearable. I started getting better a few days ago, but I plateaued. I 'stopped' getting better this time around.

        Some of the things that are still bothering me are on Day 20 of this episode are:
        1) If I swallow, eat or use my throat.. I get a pain at the intersection of my spine and back of my throat (Where they meet up). Almost like the muscle is mad. It decreased a little bit, but its still uncomfortable. I get heartburn or that awful acidic pain in my throat much more.
        2) IBS Continues.
        3) I can walk okay. But the more I go, the more I stumble. If its warm out or I am stressed out, it goes downhill faster.
        4) I went out to eat with my coworkers and had a single drink. I was basically drunk on a 16oz beer... it usually takes me 4-5 drinks to be drunk.
        5) Vision is oddly blurry now. It feels exactly like if you don't focus in on something, that is what I see. I have to try really hard to focus in on something. Almost like my eyes are constantly strained, but they aren't?

        So that begs my question... has anybody ever had anything similar to this?

        I am worried that my first episode lead me to those two 'potentially normal' lesions. And now, with this episode (Which NO doctor expected, they thought this was one and done in the ER), I might have another associated lesion. At this point, I will go to the neurologist and take detailed notes on my episodes. Maybe each episode will leave a lesion? Im not sure how it works... but I put all my symptoms into every symptom checker and the only result im getting for a strong match is MS. We ruled out almost all mimics.

      2. Hi . It is possible to have worsening symptoms with unchanged MRIs. It is also possible to have as many symptoms as someone with massive numbers of lesions when you have only a few. MS rarely behaves in ways we expect. Every case and every journey is different. That's why they call this the "snowflake disease." Your symptoms might be due to MS, but the only way to know for sure it through thorough testing and evaluation. I know the uncertainly is stressful. The best thing you can do right now is too keep busy and help the time pass before your appointment. Warmly, Lori (Team Member)

    2. I am so sorry that you are going through all of this. I am also in the process of diagnosis right now and the waiting and struggling through symptoms and thinking you are going crazy can be unbearable. I have many of the same symptoms you are having and an abnormal MRI in which MS is one of several possible diagnosis that the radiologist who read the scan listed. My symptoms don't fit most of the other possible diseases. I get so tired and muddled that I truly start to believe my accurate diagnosis will only be found during my autopsy. 😬😒 I am old enough to remember the days when they would put you in the hospital, keep you under observation and run a whole range of tests until they figured out what was going on. Not anymore. 🙄 I feel like a fish who was caught and thrown on the dock, and I am there flopping all around, and it's a crap shoot as to whether I will make it back into the water and live a happy fish life or.....not.

      Please keep us posted on your diagnosis journey. I hope you find someone who can give you answers and who can address and treat

      1. THank You Lori. Good luck in your search as well.

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