Hello everybody, I truly hope you’re doing alright. I thank you so much for your availability.
I truly apologize for writing this much, but really, my health anxiety is driving me insane.
I am an 19 year old white woman from Eastern Europe. I've recently been feeling slight tingling on my tongue that goes away. Also, l've been feeling tingling on my feet and on my toe. The tingling is not exactly pins and needles. It seems to be very subtle and sometimes, when I move, it stops, other times, when it’s very very subtle, it lasts for a long time. Just like right now, I’ve been feeling a weird subtle “blood flow” like sensation on my feet for 15 minutes now. I could easily ignore it if I wanted to. It's does not hurt. Other times, more rarely, the tingling is more intense. Rarely, it happens shortly in other areas. At times it feels like a lot of mini twitches that happen very fast all at once (this happens in my calf the most). Did not happen often until recently. I've started having it on my calf, then twice on my fourth toe. The toe one lasted a little longer. It felt weird. One time, my foot tingled and felt hot at the same time. Once, it even had a bizarre burning sensation. This tingling has started to be more and more common, especially since I started “obsessing” over it. All of this is happening to quickly, in a matter of days. Before this, I have been twitching for 2 months now and it gets better when I'm rested and stress-free. I went to a physiotherapist who tested my balance, my perception and looked at my feet. My perception is perfect, my balance is good. I can walk on my heels and toes. I can stay on my toes with one leg. I've had hammertoes since my entire life, but he said that they're good. it’s in my left leg that they’re more visible. I also have flat feet, the left one the most. When I fix it by putting something under, my tendon goes back to straight. My legs have been doing a c curve since forever.I've done plenty of sports and never had problems with my feet. I run fast. I recently tried to check the strength of my knees by doing single leg squats and it was difficult. For two days, my thighs hurt when I contracted them too much. No parent of mine has had any neurodegenerative disorders. I used to have scoliosis so I took a echocardiogram to check for Marfan syndrome. I am negative, the doctor did not notice anything else. It also happened that I got twitches on my tongue. It's rare but it happens. I at times, very rarely have little "flashes" of pain and cold that last a second on my body. The twitching I have came suddenly and is all over my body.I've always been healthy, but this year l've gotten many cystitis and many colds. I have asthma that sometimes gives me shortness of breath. Rarely. My knees sometimes give out. I don't fall. My legs are not weak. I don't think I have weakness. The only “weakness” I feel is when my left knee gives out sometimes. As I said, my physiotherapist tested the strength of my hands my fingers, my feet and toes and they're strong. At times I feel like my toes are cold. Cramps occur rarely. Sometimes in the calf, and sometimes under my foot. When it happened under my feet, that area hurts a lot and i have to massage it in order for it to get better.I went to a neurologist yesterday who checked me. All the physical tests (coordination, strength, perception,…) she did were negative. I told her about my ring finger which, when I move it to one side, starts shaking. She told me to keep an eye on it. She also noticed that when I march on the same place, one leg goes higher. She didn't comment negatively about it though. She said that I don't seem to have any peripheral neuropathy and I very very probably don't have ALS nor CMT. My sleep is also quite bad. I don’t sleep enough. She said I could take and MRI, but it would be a waste of money.I believe that the leg that goes lower (the left one) when I march is the one that I keep experiencing tingling on more and my knee gives out there more often. When I try to purposefully put weight on it, it doesn't give out. That same leg also, when I try to shake it up and down, does not go as fast as the right one. (I'm right hand dominant by the way), goes the same how my left hand (it’s not exactly as fast as the dominant one). In the past I struggled with iron deficiency and vitamin d deficiency and I have obsessive compulsive disorder which makes me beyond scared. A couple months ago I did leg press and never had tingling. Now that I started acknowledging it, I feel it after leg press. It lasts a couple seconds and then goes away if I change position. Sometimes though, even when I’m rested, I feel it for a long time. I am able to maintain 50 kg in leg press, and this was after months of not training anymore. While doing leg raises, I got slight cramps on my feet. While on the running machine, I walked for 20 minutes on 107m incline. My knee did not give out, but I felt like I slightly slightly (really, very slightly), lost my balance at times. Also I keep getting ear ringing on my left ear and my hair keeps falling out since 5 years. Getting back to the finger I was talking about, when I cross my fingers and try to lift my ring fingers, I can’t totally lift my left ring finger without lifting my other fingers, while I can do so with the right ring finger and as said before, when I move the left finger to the side, it shakes slightly. The tremor hasn’t gotten worse nor better in a month. My ck levels are 53, a month ago they were 51 (they’re in normal range)!My OCD won’t allow me to calm down because I keep being afraid I might have a neurodegenerative desease. I noticed that when I hold my hands still, and I lift my hand, my fingers don’t shake, but when I purposefully move them to one side, they start moving on their own. Also, when I cross my fingers and try to lift them without lifting the other fingers, I struggle to lift my left ring finger without lifting the others. This finger is the one I first noticed that would shake when I moved it to the side. Additionally, I feel like my left hand is weaker than the right one since I can’t tap my fingers as fast as the right one. I also feel a little bit of weakness on my knee and when I walk with my left foot, I feel that I put more weight one the side of my ankle and I don’t touch all my toes in the ground. I’ve had swollen lymph nodes for a month now. I got them checked by two doctors who did an ultrasound. They said they’re in normal range. I am just really, really scared.
Does anybody think I might have cmt or a neurodegenerative desease?
Devastated to learn son may have CMT
I think I'm in trouble...can anybody help?