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.
-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.