justink15
21-05-14, 03:24
Hello, my name is Justin, I am a 28 year old male and I guess you can say my life altering symptoms first started a few months after my 27th birthday. I have always had really bad exercise intolerance ever since I was in middle school, which back then had seemed to improve the more I did it. This exercise intolerance just got worse over time causing me to quit basketball in high school, the running and looking for a ball made me lightheaded and nauseous. I was always hesitant to go full force to prevent this feeling, I turned to weight lifting in college which did not give me the same feeling but after college there were times I had to drop to one knee because of chest tightness and trouble breathing with heart palpitations. I eventually gave up weight lifting as well. I then experienced recurring chest tightness and sudden blocked nose when going out, and developed eye floaters. I went to the ER and had chest X-rays and EKGs which were both normal on a number of occasions.
June 20th 2013 - Two years after stopping going to the gym, I got hit with mild nauseousness, fatigue/‘weak’ jelly legs with a lump sensation on the left side of my neck and a 17 pound weight loss. I put quotes around weak because of the whole perceived versus real weakness argument. Anyways, I went to the doctor and he suspected a thyroid issue. I had all kinds of blood tests done and an ultrasound of my thyroid. Everything came back normal except for H.Pylori findings in blood and a small insignificant sized nodule on thyroid that was reported as a normal abnormality, size 6 mm. I took a breath test for H.Pyrlori and it came back negative but a GI doctor treated it with antibiotics just in case because it had never been treated. First thyroid results - TSH w/ reflex to FT4 Result 3.13 Normal Range 0.40-4.50, Normal. Second thyroid results - TSH Result 1.70 Normal Range 0.30-4.5. My CBC was all normal except for a minor elevated level of Albumin 5.4 which was considered insignificant.
I was referred to the same GI that gave me antibiotics for H.Pylori for an Endoscopy w/ biopsy. Celiac runs in my family but I was negative with no evidence of sprue, parasitic infestation or Whipple’s disease. I was diagnosed with chronic astral gastritis with focal activity. I also had active esophagitis which was moderately severe.
I also had further ultrasounds of bladder, prostrate, kidneys, gallbladder, bile ducts and liver, all normal. I also had no blood in stool verified with stool samples. By this point I am also having really strange digestive issues with no known cause. Very loose stools, sometimes together but loose together almost like its hairy. Yellow in color often but not always. (Sorry if this is too descriptive.)
I also saw an ear nose and throat doctor who was puzzled, I had recurring tonsil stones, throat irritation, and mild reflex laryngitis. Had blood work that showed past Epstein-Barr virus.
I was then referred to a neurologist, by this time i was experiencing trouble doing things I could do in the past such as twirling pencil (which has since got better). I also had twitching, fatigue in legs, burning pain in legs, burning pain down arms when I sneezed, a lot of weird sensations as if I was drunk standing with dim vision and in someone else's body. I had normal tests of my brain and neck via MRI as well as a normal EMG with what they told me was BFS (was very early on when symptoms were not nearly as bad as they are now.) There was no evidence of myopathy, polyneuropathy or polyradiculopathy. I was only poked a few times with needle, the shock part seemed thorough to me but the needle part did not hurt or seem thorough to me. My blood tests there were normal except for Low Testosterone.
I went to an Endocrinologist specialist for the Low Testosterone and he retested me early in the morning and said I was fine and that can happen late at night. He also said he believes I am sick by just looking at my hands and feet, they tend to be pale, with purple fingernails and ice cold to the touch. He told me I am sorry but you need to go to Mass General Hospital to a genius and that “Bad things happen to good people”.
I took his advice and after a long waiting period I was accepted as a patient to MGH in their neurology department by a team. I was tested for chronic lyme using the normal methods as well as the western blot, all normal. I had another MRI of an area of the spine that was missed and that was normal as well with minor vertebrae findings ruled insignificant. I also had a tilt table test which came back with borderline POTS. I also had a skin biopsy which came back as borderline small fiber neuropathy 13% tile when 3 or 5% or less is needed for diagnosis. My symptoms are so bad now I am on medical leave from work. I also developed active tremor that are slowly becoming worse. I wake up with my arms, legs and shoulders feeling so fatigued and strange.
May 20, 2014 - Todays list of recurring / 24/7 symptoms - Fatigue, weakness in arms, hands and legs, occasional dull sense of touch, occasional nausea, diarrhea, early morning shoulder fatigue and tight forearms and paresthesias in fingers, cold hands and feet, body wide twitching, occasional burning sensation in forearms, knees and palms, occasional difficulty chewing and swallowing, dry mouth, eye floaters, enlarged optic nerve, loss of appetite, weight loss, exercise intolerance (nausea, tremors, chest reactions), occasional depersonalization (body does not move as well or as precise as it should), occasional pain under armpits, frequent lump sensation on left side of neck, twice shock sensation on left throat that sends numbness down left arm, infrequent shocks on top of feet and ankles, fast onset of blocked nose causing difficulty breathing, infrequent sternum pain, dry cough, face rash after emg that has let up. Waves of feeling sick, general malaise like the flu, accompanied by stiffness in the limbs. Have to think when I walk from the jelly like feeling in legs. Concentration and attention span reduced. I have also developed waking up with my ring and pinky fingers numb and curled over (ulnar nerve symptom) on both hands. Todays new symptom is a numb left pinky toe. Making more typing mistakes when on computer. I also think I have sleep apnea because I wake up gasping for air, my heart rate is also really low when I wake up from sleep below 60 bpm (bradycardia?), I also jolt sometimes when dozing off causing me to stay awake. Hair thinning, overall muscle shrinking, think from no longer working out, not noticeable clinically.
If you have read this far, I thank you so much, I know this is lengthy. My appointments are so far apart and there is nothing I can do but wait it seems. I am looking for a good support system and if anyone has any ideas of what this can be please help, I can provide more test results and also answer if I had something looked at yet. I also have anxiety from all of these symptoms, it has caused me to look up things like Parkinsons, ALS, MS, and other scary medical issues.
Thank you,
Justin
June 20th 2013 - Two years after stopping going to the gym, I got hit with mild nauseousness, fatigue/‘weak’ jelly legs with a lump sensation on the left side of my neck and a 17 pound weight loss. I put quotes around weak because of the whole perceived versus real weakness argument. Anyways, I went to the doctor and he suspected a thyroid issue. I had all kinds of blood tests done and an ultrasound of my thyroid. Everything came back normal except for H.Pylori findings in blood and a small insignificant sized nodule on thyroid that was reported as a normal abnormality, size 6 mm. I took a breath test for H.Pyrlori and it came back negative but a GI doctor treated it with antibiotics just in case because it had never been treated. First thyroid results - TSH w/ reflex to FT4 Result 3.13 Normal Range 0.40-4.50, Normal. Second thyroid results - TSH Result 1.70 Normal Range 0.30-4.5. My CBC was all normal except for a minor elevated level of Albumin 5.4 which was considered insignificant.
I was referred to the same GI that gave me antibiotics for H.Pylori for an Endoscopy w/ biopsy. Celiac runs in my family but I was negative with no evidence of sprue, parasitic infestation or Whipple’s disease. I was diagnosed with chronic astral gastritis with focal activity. I also had active esophagitis which was moderately severe.
I also had further ultrasounds of bladder, prostrate, kidneys, gallbladder, bile ducts and liver, all normal. I also had no blood in stool verified with stool samples. By this point I am also having really strange digestive issues with no known cause. Very loose stools, sometimes together but loose together almost like its hairy. Yellow in color often but not always. (Sorry if this is too descriptive.)
I also saw an ear nose and throat doctor who was puzzled, I had recurring tonsil stones, throat irritation, and mild reflex laryngitis. Had blood work that showed past Epstein-Barr virus.
I was then referred to a neurologist, by this time i was experiencing trouble doing things I could do in the past such as twirling pencil (which has since got better). I also had twitching, fatigue in legs, burning pain in legs, burning pain down arms when I sneezed, a lot of weird sensations as if I was drunk standing with dim vision and in someone else's body. I had normal tests of my brain and neck via MRI as well as a normal EMG with what they told me was BFS (was very early on when symptoms were not nearly as bad as they are now.) There was no evidence of myopathy, polyneuropathy or polyradiculopathy. I was only poked a few times with needle, the shock part seemed thorough to me but the needle part did not hurt or seem thorough to me. My blood tests there were normal except for Low Testosterone.
I went to an Endocrinologist specialist for the Low Testosterone and he retested me early in the morning and said I was fine and that can happen late at night. He also said he believes I am sick by just looking at my hands and feet, they tend to be pale, with purple fingernails and ice cold to the touch. He told me I am sorry but you need to go to Mass General Hospital to a genius and that “Bad things happen to good people”.
I took his advice and after a long waiting period I was accepted as a patient to MGH in their neurology department by a team. I was tested for chronic lyme using the normal methods as well as the western blot, all normal. I had another MRI of an area of the spine that was missed and that was normal as well with minor vertebrae findings ruled insignificant. I also had a tilt table test which came back with borderline POTS. I also had a skin biopsy which came back as borderline small fiber neuropathy 13% tile when 3 or 5% or less is needed for diagnosis. My symptoms are so bad now I am on medical leave from work. I also developed active tremor that are slowly becoming worse. I wake up with my arms, legs and shoulders feeling so fatigued and strange.
May 20, 2014 - Todays list of recurring / 24/7 symptoms - Fatigue, weakness in arms, hands and legs, occasional dull sense of touch, occasional nausea, diarrhea, early morning shoulder fatigue and tight forearms and paresthesias in fingers, cold hands and feet, body wide twitching, occasional burning sensation in forearms, knees and palms, occasional difficulty chewing and swallowing, dry mouth, eye floaters, enlarged optic nerve, loss of appetite, weight loss, exercise intolerance (nausea, tremors, chest reactions), occasional depersonalization (body does not move as well or as precise as it should), occasional pain under armpits, frequent lump sensation on left side of neck, twice shock sensation on left throat that sends numbness down left arm, infrequent shocks on top of feet and ankles, fast onset of blocked nose causing difficulty breathing, infrequent sternum pain, dry cough, face rash after emg that has let up. Waves of feeling sick, general malaise like the flu, accompanied by stiffness in the limbs. Have to think when I walk from the jelly like feeling in legs. Concentration and attention span reduced. I have also developed waking up with my ring and pinky fingers numb and curled over (ulnar nerve symptom) on both hands. Todays new symptom is a numb left pinky toe. Making more typing mistakes when on computer. I also think I have sleep apnea because I wake up gasping for air, my heart rate is also really low when I wake up from sleep below 60 bpm (bradycardia?), I also jolt sometimes when dozing off causing me to stay awake. Hair thinning, overall muscle shrinking, think from no longer working out, not noticeable clinically.
If you have read this far, I thank you so much, I know this is lengthy. My appointments are so far apart and there is nothing I can do but wait it seems. I am looking for a good support system and if anyone has any ideas of what this can be please help, I can provide more test results and also answer if I had something looked at yet. I also have anxiety from all of these symptoms, it has caused me to look up things like Parkinsons, ALS, MS, and other scary medical issues.
Thank you,
Justin