Hello! I've been feeling progressively worse over the course of the year and feel like I'm losing my mind each time a test comes back "normal". Something is obviously not normal, and if you make it through my story, I'd love to hear some opinions - I'm hoping to ease my mind. I see a lot of people post similar stories without much activity on their threads. If this is something that is frowned upon on these boards, please let me know! I am just hoping for a little insight from those who have been though all the testing and waiting.
History... I am a 36 year old female with ulcerative colitis and a long history of migraines, along with chronic daily headache, and an essential tremor that's gotten worse lately. So fall all my tests are normal. I've had normal cbc, sed rate, hemoglobin a1c, basic metabolic panel, tsh, b12 (700), vitamin d, folate, MRI of brain and spine, MRA of brain, and EMG (which picked up peroneal neuropathy in my left leg, even though I am not having problems with my left leg, I'm guessing it's from a sprain I had a few years ago).
At first my neurologist suspected MS, but now that my MRIs are clear he says it's unlikely, though not out of the question. My symptoms certainly sound like they could be MS. He said it could take a long time to find out what exactly is happening... and I just feel very defeated right now. Could it be MS even though my MRIs look fine? Does it sound like something else? Maybe Lyme? I have mentioned that to my doctor and he thought it was unlikely, though I'm not sure why he hasn't tested for that yet so I'm going to mention it again.
Since April I've been having the sensation of hot water being poured on my right foot. That whole leg feels "tighter" and weaker than the other. Along with that I've had an increase in headaches, dizzyness, confusion, fatigue. The fatigue is not helped by having to pee many(!) times a night, and tremors in my muscles that make it hard to relax enough to sleep.
Not long ago I had a mild case of shingles. When that started my foot felt better for a while, with only a little tingling and some numbness in my little toes... I felt pretty good (besides the shingles!) for a week or two... But all my symptoms have come back. I have such severe fatigue, bone crushing want-to-die fatigue, and when this is happening I also notice these weird foot things happen more. It feels like my sensations are going crazy, tingly burny numby crawly weird stuff on my foot and up my leg. I'm so tired, but my head shakes when I lay down, like my neck won't relax / like it's strained. And floor feels like it's shaking! When I'm standing it feels like my knees are all wobbly, or vibrating. When I walk it feels like the floor is rubber. I feel SO nauseous all the time, from the shaking (or colitis or both). I get dizzy/nauseous often, nearly throwing up from movement (like in the car) or looking at things moving, like clouds moving or when looking at patterns. Headaches are more frequent/severe. Headache everyday. I feel like I'm losing my mind... I went to work without shoes one day. Forgot where I was on the expressway the other day - like had no idea where I was going for a few minutes. Can't focus.
Can't do activities like vacuuming, yardwork, exercise / can't do anything even slightly strenuous without getting lightheaded and out of breath and pounding heartbeat (bending over then standing up makes me really lightheaded). Pounding headaches and eye pressure when standing up from sitting/squatting/laying.
Other symptoms are joint pain (could be from my colitis). Frequent muscle cramps and twitching. I have a "fireworks" type popping feeling in my legs after I go for a walk (40 minutes or so of walking will do it) - this has been happening for a couple years though. Taking baths leaves me completely blurry eyed and now gives me headaches... I used to love baths, now they make me feel very weird, almost like I'm on drugs.
One other thing that sticks out... I was treated for migraines before - in my teens - and at one point during that time I started having these pains in my ribs - severe, sharp / ribs pulling apart / take my breath away type feelings - and was given an elastic rib belt type thing to wear when the pains would happen. I was told at that time that I "probably had some autoimmune disease that will show up later in life". Well I do have colitis, so I figured that was that. But now I've had that same rib pain twice recently (both times in the bath). After almost 20 years of not feeling it I had completely forgotten about them (the pains didn't go on for very long, less than I year I think), but feeling the pains again brought this whole memory back. Does that sound anything like the ms rib pain symptom?
Thank you for reading if you made it to the end! I hope I posted in the right place
History... I am a 36 year old female with ulcerative colitis and a long history of migraines, along with chronic daily headache, and an essential tremor that's gotten worse lately. So fall all my tests are normal. I've had normal cbc, sed rate, hemoglobin a1c, basic metabolic panel, tsh, b12 (700), vitamin d, folate, MRI of brain and spine, MRA of brain, and EMG (which picked up peroneal neuropathy in my left leg, even though I am not having problems with my left leg, I'm guessing it's from a sprain I had a few years ago).
At first my neurologist suspected MS, but now that my MRIs are clear he says it's unlikely, though not out of the question. My symptoms certainly sound like they could be MS. He said it could take a long time to find out what exactly is happening... and I just feel very defeated right now. Could it be MS even though my MRIs look fine? Does it sound like something else? Maybe Lyme? I have mentioned that to my doctor and he thought it was unlikely, though I'm not sure why he hasn't tested for that yet so I'm going to mention it again.
Since April I've been having the sensation of hot water being poured on my right foot. That whole leg feels "tighter" and weaker than the other. Along with that I've had an increase in headaches, dizzyness, confusion, fatigue. The fatigue is not helped by having to pee many(!) times a night, and tremors in my muscles that make it hard to relax enough to sleep.
Not long ago I had a mild case of shingles. When that started my foot felt better for a while, with only a little tingling and some numbness in my little toes... I felt pretty good (besides the shingles!) for a week or two... But all my symptoms have come back. I have such severe fatigue, bone crushing want-to-die fatigue, and when this is happening I also notice these weird foot things happen more. It feels like my sensations are going crazy, tingly burny numby crawly weird stuff on my foot and up my leg. I'm so tired, but my head shakes when I lay down, like my neck won't relax / like it's strained. And floor feels like it's shaking! When I'm standing it feels like my knees are all wobbly, or vibrating. When I walk it feels like the floor is rubber. I feel SO nauseous all the time, from the shaking (or colitis or both). I get dizzy/nauseous often, nearly throwing up from movement (like in the car) or looking at things moving, like clouds moving or when looking at patterns. Headaches are more frequent/severe. Headache everyday. I feel like I'm losing my mind... I went to work without shoes one day. Forgot where I was on the expressway the other day - like had no idea where I was going for a few minutes. Can't focus.
Can't do activities like vacuuming, yardwork, exercise / can't do anything even slightly strenuous without getting lightheaded and out of breath and pounding heartbeat (bending over then standing up makes me really lightheaded). Pounding headaches and eye pressure when standing up from sitting/squatting/laying.
Other symptoms are joint pain (could be from my colitis). Frequent muscle cramps and twitching. I have a "fireworks" type popping feeling in my legs after I go for a walk (40 minutes or so of walking will do it) - this has been happening for a couple years though. Taking baths leaves me completely blurry eyed and now gives me headaches... I used to love baths, now they make me feel very weird, almost like I'm on drugs.
One other thing that sticks out... I was treated for migraines before - in my teens - and at one point during that time I started having these pains in my ribs - severe, sharp / ribs pulling apart / take my breath away type feelings - and was given an elastic rib belt type thing to wear when the pains would happen. I was told at that time that I "probably had some autoimmune disease that will show up later in life". Well I do have colitis, so I figured that was that. But now I've had that same rib pain twice recently (both times in the bath). After almost 20 years of not feeling it I had completely forgotten about them (the pains didn't go on for very long, less than I year I think), but feeling the pains again brought this whole memory back. Does that sound anything like the ms rib pain symptom?
Thank you for reading if you made it to the end! I hope I posted in the right place
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