Seeking Guidance
Hi All,
After months and months of weird bothersome symptoms, 4 neuro appts, various other appts, I'm here to pick your brain a bit. I've also received very little family/friend support during this time and feel pretty alone and isolated at this point. I'm sort of at a breaking point so I've come here for some direction. I apologize for the length in advance but didn't want to leave anything out, I've been ignoring or downplaying symptoms long enough.
I'm a 32 year old athletic female, muscular build. Never had health issues, impeccable blood tests, good diet, etc. First noticed a year to two years ago (honestly can't remember when) my left leg would get increasingly fatigued/achy just below the knee. I have horrible varicose veins so I always contributed it to them and never thought much about it. A few times I got the sensation that my leg was wet bleeding in that spot but when I check, nothing was there. Around this time I also was getting very stiff/numb/tingly hands after swimming and my feet would go numb during exercise (this might not be relevant but wanted to include everything). I would also get extreme urge incontinence while running and often wet myself, however, no bladder issues other than that. I also got a hive like rash after being in the sun all over my stomach that lasted over a month. The thing that freaked me out most was an episode of vertigo I had while sitting down where my vision tilted to one side for 10-15 seconds before tilting back. I didn't think much of it and people told me our brains just do weird things. A few months later I had another weird episode where the muscle in my ear fluttered for about a minute straight. Again, blew off most of these little things.
Then early this year I started noticing I was getting extremely fatigued during exercise classes that were never a problem for me. I would also feel dizzy and get pretty bad tension headaches and my ears would ring and be extra sensitive to sound. Again, I just assumed I was out of shape. I was getting random short vertigo attacks at home. It was until I got a vibrating sensation in my left thigh that I began to worry. It lasted about two weeks and was like a cell phone buzzing, on off, on off. This was during the winter, and when I'd be outside my muscles would get extremely stiff and sometimes my legs would tremor. I could barely move my fingers until I was inside for 10 minutes or so. I still had the ache in the left leg when standing or walking too long. My entire arms also started falling asleep at this point when I slept, regardless of what position I was in. I experienced a sudden increase in eye floaters as well as the sensation that my vision was pulsing at times.
I decided to see some docs about the buzzing sensation and general fatigue, I was either told nothing was wrong or that I had anxiety (never been a hypo or really anxious at all for that matter). I was put on anti depressants and anxiety meds for a month until I came to my senses and decided that wasn't my issue. During this time I experienced a ton of weird vision stuff (visual snow, after images, extreme light sensitivity, starbursts/halos, spacial distortion, DP/DR, vision shakes while walking), not sure if it was related to the drugs or not, but I still have it, and it hasn't gotten better. The buzzing also returned but this time in my feet, toes, and hands. I chalked it up to benzo withdrawal. However, months after the meds, things got worse, not better. I was getting tingling on my skin, scalp, and buzzing in my feet that would be activated by being in the cold ocean, exercise, hot showers, and also could be brought on my bending my neck or waist (is this Lhermette's?). Once I had a tingling patch that was activated by touch, I could basically turn it on or off by wiping my leg. I also had a weird headache on the top of my head that felt like a cold pressing sensation that lasted for two weeks. I also started noticing a twitch in my left ring finger, which would definitely be worse after hot showers. At night my pinky, ring fingers, and thumbs would always fall asleep. My left big toe was numb for a couple weeks and and then just left feeling weird. I was also getting very brief short sharp headaches all over. This is what brought me to yet another neuro. Did a pretty good workup. Cervical/Brain MRIs clean (other than some bulging discs, arthritis in neck). Brain EEG, VEP clean. Doppler relatively normal other than some slowing in my right PCA. Nerve test showed multiple axonal neuropathies in all extremities, some sensory neuropathy in right and left ulnar nerve. Slightly abnormal F wave, normal H reflexes and EMG. Neuro said I didn't have MS, just a dysfunctional brain and sent me away. Saw another neuro for a second opinion, also says he couldn't find anything wrong and says he doesn't believe the nerve test was done correctly by previous doc and that the twitching in my fingers (progressively worse at this point) is from doing too many art projects. Tells me to come back when it's worse.
Weeks later at my massage therapist was concerned that my entire left side was in a spasm and he could not get muscles to release. I told him about my doc experiences and he recommended I see his physiatrist. At this point I was starting to experience some muscle twitching. Mostly in legs (calves) but I also had hotspots, a place on my back, under my ribs. I was also getting this bubbly feeling in my toes. During the exam he noticed significant weakness on my left side compared to my right from the neck down to my toes (I am a lefty). The other parts of the exam were normal, gait, sensory, reflexes, etc. (although I have been noticing I am occasionally scuffing my feet when I walk and my balance on one foot, particularly my right is horrid). He was perplexed after looking at my test results and sends me for a lyme test. Test comes back negative and he says unfortunately he would have to send me to another neuro. Went to one he recommended, of course she finds no weakness cause she barely touches me, re does part of the nerve test and says that the responses are slow, but they are all slow so she isn't concerned, maybe that's just me. She doesn't think it's worth checking the other extremities. She says maybe I have metal toxicity or myasthenia gravis (I don't feel like I have either).
I return to the physiatrist who is of course appalled at the way the visit with his neuro went. My ring and pinky fingers are now starting to claw on my left hand which he notices and finds alarming. I show him that I'm now starting to get the twitch in my right hand and my thumbs are difficult to move. He says to give him time to think about it. My muscle twitches are now constant and everywhere (feet, butt, stomach, back, arms, legs, even face). I follow up with him the next week and say I'm concerned with what looks like noticeable atrophy in my left forearm, he confirms it and says he also sees it in my hands, particularly below my thumbs (something I hadn't noticed). He recommends I try craniosacral therapy and acupuncture and he wants to repeat the MRIs in December.
So this is where I stand now, no answers and no direction. In two months left hand has gone from a slight finger twitch to a partial claw. I have very noticeable atrophy in hands, forearms, feet, ankles, and parts of my right leg just below the knee. I can also see the tendons in my neck and ribs in my back and front which I never recall seeing before (I just thought I was getting skinny). The muscle twitching is 24/7. My big toe on the right side is now wiggling on its own and my right leg also jerking on its own. I've been trying to go to the gym but it's kinda scared me. The other day I lifted about half of what I normally would (trying to go easy) and my upper left arm was trembling afterwards. Also lifting myself up or being in the pushup position makes my arms tremble like crazy.
Some other random symptoms that I don't know if could be related are constant mucous in my throat that I get little air bubbles stuck in, sometimes my voice feels like it's vibrating. When I twist my torso a weird noise comes out of my mouth and it feels like something is pushing on my diaphragm. I feel like the vibration sense in my hands and feet has actually increased, (I feel my voice in my hands, if I'm near a fridge, I feel the hum in my feet). Extreme lightheadedness when standing up. One of my eyes sees a completely different shade of color when I'm in bright light. My pupils also seems to contract randomly on their own sometimes (will look like the someone is playing with a dimmer switch). This happened a few times in the shower, so initially I thought MS. I have a blurry spot in my left eye. The right side of my face will often cramp up, if I close my right eye my face will start trembling. Sometimes the skin on my hands will feel really weird and dry and my finger tips will feel numb. All of my joints hurt, especially in my left arm (wrist and elbow), and knees will get sharp pain I'm guessing maybe because of muscle weakness. My weight hasn't changed much, although I'm not as trim and have definitely added fat from the stress. Only things bloodtests have caught were low Iodine and slightly high AST and slightly low T3. C-reactive, ESR very low. Creatinine, Vitamin D, and albumin mid-range.
For anyone who read all this, God bless you, I thank you and greatly appreciate it. I myself am stumped, for a while I thought it I was experiencing classic MS symptoms, possibly progressive MS. When a friend of mine said that my symptoms sound like "some kind of ALS ****" I immediately dismissed it. But now with all this twitching and muscle atrophy I wonder if I should bring up the possibility of ALS to docs and have a repeat EMG. Can atrophy and twitching be contributed to MS as well? Or maybe get a IGeneX lyme test, my symptoms seem all over the map, definitely atypical. Any thoughts? It appears that I am completely on my own navigating through all this. I'm just worried that if this is going to continue to rapidly progress, I don't want to wait around forever and would like to prepare for any obstacles in the future. Any thoughts or recommendations are greatly appreciated.
Thank You.
After months and months of weird bothersome symptoms, 4 neuro appts, various other appts, I'm here to pick your brain a bit. I've also received very little family/friend support during this time and feel pretty alone and isolated at this point. I'm sort of at a breaking point so I've come here for some direction. I apologize for the length in advance but didn't want to leave anything out, I've been ignoring or downplaying symptoms long enough.
I'm a 32 year old athletic female, muscular build. Never had health issues, impeccable blood tests, good diet, etc. First noticed a year to two years ago (honestly can't remember when) my left leg would get increasingly fatigued/achy just below the knee. I have horrible varicose veins so I always contributed it to them and never thought much about it. A few times I got the sensation that my leg was wet bleeding in that spot but when I check, nothing was there. Around this time I also was getting very stiff/numb/tingly hands after swimming and my feet would go numb during exercise (this might not be relevant but wanted to include everything). I would also get extreme urge incontinence while running and often wet myself, however, no bladder issues other than that. I also got a hive like rash after being in the sun all over my stomach that lasted over a month. The thing that freaked me out most was an episode of vertigo I had while sitting down where my vision tilted to one side for 10-15 seconds before tilting back. I didn't think much of it and people told me our brains just do weird things. A few months later I had another weird episode where the muscle in my ear fluttered for about a minute straight. Again, blew off most of these little things.
Then early this year I started noticing I was getting extremely fatigued during exercise classes that were never a problem for me. I would also feel dizzy and get pretty bad tension headaches and my ears would ring and be extra sensitive to sound. Again, I just assumed I was out of shape. I was getting random short vertigo attacks at home. It was until I got a vibrating sensation in my left thigh that I began to worry. It lasted about two weeks and was like a cell phone buzzing, on off, on off. This was during the winter, and when I'd be outside my muscles would get extremely stiff and sometimes my legs would tremor. I could barely move my fingers until I was inside for 10 minutes or so. I still had the ache in the left leg when standing or walking too long. My entire arms also started falling asleep at this point when I slept, regardless of what position I was in. I experienced a sudden increase in eye floaters as well as the sensation that my vision was pulsing at times.
I decided to see some docs about the buzzing sensation and general fatigue, I was either told nothing was wrong or that I had anxiety (never been a hypo or really anxious at all for that matter). I was put on anti depressants and anxiety meds for a month until I came to my senses and decided that wasn't my issue. During this time I experienced a ton of weird vision stuff (visual snow, after images, extreme light sensitivity, starbursts/halos, spacial distortion, DP/DR, vision shakes while walking), not sure if it was related to the drugs or not, but I still have it, and it hasn't gotten better. The buzzing also returned but this time in my feet, toes, and hands. I chalked it up to benzo withdrawal. However, months after the meds, things got worse, not better. I was getting tingling on my skin, scalp, and buzzing in my feet that would be activated by being in the cold ocean, exercise, hot showers, and also could be brought on my bending my neck or waist (is this Lhermette's?). Once I had a tingling patch that was activated by touch, I could basically turn it on or off by wiping my leg. I also had a weird headache on the top of my head that felt like a cold pressing sensation that lasted for two weeks. I also started noticing a twitch in my left ring finger, which would definitely be worse after hot showers. At night my pinky, ring fingers, and thumbs would always fall asleep. My left big toe was numb for a couple weeks and and then just left feeling weird. I was also getting very brief short sharp headaches all over. This is what brought me to yet another neuro. Did a pretty good workup. Cervical/Brain MRIs clean (other than some bulging discs, arthritis in neck). Brain EEG, VEP clean. Doppler relatively normal other than some slowing in my right PCA. Nerve test showed multiple axonal neuropathies in all extremities, some sensory neuropathy in right and left ulnar nerve. Slightly abnormal F wave, normal H reflexes and EMG. Neuro said I didn't have MS, just a dysfunctional brain and sent me away. Saw another neuro for a second opinion, also says he couldn't find anything wrong and says he doesn't believe the nerve test was done correctly by previous doc and that the twitching in my fingers (progressively worse at this point) is from doing too many art projects. Tells me to come back when it's worse.
Weeks later at my massage therapist was concerned that my entire left side was in a spasm and he could not get muscles to release. I told him about my doc experiences and he recommended I see his physiatrist. At this point I was starting to experience some muscle twitching. Mostly in legs (calves) but I also had hotspots, a place on my back, under my ribs. I was also getting this bubbly feeling in my toes. During the exam he noticed significant weakness on my left side compared to my right from the neck down to my toes (I am a lefty). The other parts of the exam were normal, gait, sensory, reflexes, etc. (although I have been noticing I am occasionally scuffing my feet when I walk and my balance on one foot, particularly my right is horrid). He was perplexed after looking at my test results and sends me for a lyme test. Test comes back negative and he says unfortunately he would have to send me to another neuro. Went to one he recommended, of course she finds no weakness cause she barely touches me, re does part of the nerve test and says that the responses are slow, but they are all slow so she isn't concerned, maybe that's just me. She doesn't think it's worth checking the other extremities. She says maybe I have metal toxicity or myasthenia gravis (I don't feel like I have either).
I return to the physiatrist who is of course appalled at the way the visit with his neuro went. My ring and pinky fingers are now starting to claw on my left hand which he notices and finds alarming. I show him that I'm now starting to get the twitch in my right hand and my thumbs are difficult to move. He says to give him time to think about it. My muscle twitches are now constant and everywhere (feet, butt, stomach, back, arms, legs, even face). I follow up with him the next week and say I'm concerned with what looks like noticeable atrophy in my left forearm, he confirms it and says he also sees it in my hands, particularly below my thumbs (something I hadn't noticed). He recommends I try craniosacral therapy and acupuncture and he wants to repeat the MRIs in December.
So this is where I stand now, no answers and no direction. In two months left hand has gone from a slight finger twitch to a partial claw. I have very noticeable atrophy in hands, forearms, feet, ankles, and parts of my right leg just below the knee. I can also see the tendons in my neck and ribs in my back and front which I never recall seeing before (I just thought I was getting skinny). The muscle twitching is 24/7. My big toe on the right side is now wiggling on its own and my right leg also jerking on its own. I've been trying to go to the gym but it's kinda scared me. The other day I lifted about half of what I normally would (trying to go easy) and my upper left arm was trembling afterwards. Also lifting myself up or being in the pushup position makes my arms tremble like crazy.
Some other random symptoms that I don't know if could be related are constant mucous in my throat that I get little air bubbles stuck in, sometimes my voice feels like it's vibrating. When I twist my torso a weird noise comes out of my mouth and it feels like something is pushing on my diaphragm. I feel like the vibration sense in my hands and feet has actually increased, (I feel my voice in my hands, if I'm near a fridge, I feel the hum in my feet). Extreme lightheadedness when standing up. One of my eyes sees a completely different shade of color when I'm in bright light. My pupils also seems to contract randomly on their own sometimes (will look like the someone is playing with a dimmer switch). This happened a few times in the shower, so initially I thought MS. I have a blurry spot in my left eye. The right side of my face will often cramp up, if I close my right eye my face will start trembling. Sometimes the skin on my hands will feel really weird and dry and my finger tips will feel numb. All of my joints hurt, especially in my left arm (wrist and elbow), and knees will get sharp pain I'm guessing maybe because of muscle weakness. My weight hasn't changed much, although I'm not as trim and have definitely added fat from the stress. Only things bloodtests have caught were low Iodine and slightly high AST and slightly low T3. C-reactive, ESR very low. Creatinine, Vitamin D, and albumin mid-range.
For anyone who read all this, God bless you, I thank you and greatly appreciate it. I myself am stumped, for a while I thought it I was experiencing classic MS symptoms, possibly progressive MS. When a friend of mine said that my symptoms sound like "some kind of ALS ****" I immediately dismissed it. But now with all this twitching and muscle atrophy I wonder if I should bring up the possibility of ALS to docs and have a repeat EMG. Can atrophy and twitching be contributed to MS as well? Or maybe get a IGeneX lyme test, my symptoms seem all over the map, definitely atypical. Any thoughts? It appears that I am completely on my own navigating through all this. I'm just worried that if this is going to continue to rapidly progress, I don't want to wait around forever and would like to prepare for any obstacles in the future. Any thoughts or recommendations are greatly appreciated.
Thank You.
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