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i added this top half to see if this relates to everything i discuss in the bottom, if there is any correlation, felt it was necessary to add this to know my wider past, and can possibly connect to everything going on lately. If anything in the past may have caused all this. OR, you can skip/scroll to the other half where i title it ---- BIG BEGINNING.
Here is some history and I do not know if this correlates to everything that is happening to me now: I am 22 years old. About 4 years ago(2015), I had an uncontrollable itch on my testicles and penile area. It all started when my ex girlfriend had caught mononucleosis and performed oral sex on me, which a few days later caused itching down there, and I got mono from that. Everything was good health wise before this, but I did have back pain due to scoliosis since middle school and got worse doing heavy physical activities knowing I had it.
To begin, around 2016 I had a strange cough that lasted a month, that was almost like someone with bronchitis, I had coughing that would last long. It went away a month later but when I would talk loud or fast, I would have a cough attack. I would also feel everything I ate and drank going down my throat and esophagus. Bread was the toughest thing to eat because it felt as if it would get stuck in my chest and felt how I imagined a heart attack would feel. It was painful. I Also had a long period of white coating on my tongue and nasty mouth taste. Saliva was becoming an issue, and I began getting random lock jaw. Stabbing pain on my rib,( happened in sleep once ) and couldn’t breath hard because it felt like it would only get worse, and went away slowly in a couple minutes! This pain happened 4 times in the past couple years would only last a couple minutes. On my rib 3 times then once on my thigh. I also had shoulder pain every so offen since highschool, even by a sneeze. I would start choking on my salvia around this time. Every once in a while rarely I would choke on my saliva talking or just randomly watching TV or just doing nothing, never in my sleep. Happened about 5 times in the past 3 years. I also had bad lower back pain since high-school due to minor scoliosis which felt like my spine wanted to fall from my buttock, but the pain would hit hard randomly but very rarely.
It was mid 2018, I still had the damn itch, and I was tired of it because it was so annoying and hoped it was not herpes. Test come back I tested positive for HSV 1. Was p****d but continued with life as it was super common, just didn’t know if I got it penile(most likely) or oral.
A month later around July 2018, my buttocks and testicles began getting a tingling sensation which was very annoying that happened almost daily(still going on)along with the itch which calmed down eventually.
All these past couple of years I have been super stressed with the itch and college, felt like it ruined my life.
Mid 2018, I also began feeling vertigo and light headed when I got up quick, but it was so temporary. I had days where I would feel like a blob, but I blame that on my terrible diet. I began running and man I would feel more tired than usual( used to run) but felt good also as I continued. One day, i was stretching very hard and long and I over-stretched my foot muscle, felt as if pulled it and got stuck. It hurt but I continued running on it only to make it worse. I had shin splits for the first time as well. The pulled muscle on my foot ruined running for me and walking would hurt sometimes. My achilles would feel sprained occasionally as well for no reason.
I began running slowly and got used to the pulled muscle. I noticed I would get that cramp on my rib faster than usual or pain when running which sucked. I would get tired faster but it got better slowly. However, the cramp on foot, would stop me from running longer periods. While running, I started taking my dog, and noticed my fingers would hurt and would feel locked while holding onto the leash for long periods of time. Also noticed my muscles looked greater than ever. Weighed 180 which I have been for months, and i noticed the veins in my hand were a lot more prominent. Muscles looked great, however, i always felt like i would tear a tendon on my hand or wrist when lifting heavy objects. NEW SYMTPOMS: Around November, i began getting a Web sensation feeling in my arms and legs which was odd that would come and go. I also had a ticklish tingling sensation running down my right arm.
2019 BIG BEGINNING
2019 comes: still have itching on penile, and tingling there as well as buttocks. I began waking up with a cramp on the foot that i pulled the year before from stretching. I began
having that sprained achilles ankle feeling a lot too. My hand would cramp up easy as well, but this has been happening since 2017, just more pain on the fingers.
SOMETHING NEW OCCURS, which was frightening, I would wake up with chills really bad all over my body to the point where it would wake me up as if I am freezing!
This happened several times and I would wake up sweaty sometimes too!
February came, and it continued. I developed a throat infection and ear infection that lasted a week or so, and and i took Theraflu for it. The moment that went away is when everything went CRAZY.
Feb 21, I woke up with chills which felt like the new normal, was excited for school and went to shower then peed right after the shower. Laid down on my bed for a bit after changing and felt like I had to pee again very bad. Only drips would come out, but I still felt like I had to go very bad! I also had a really bad diarrhea that I never had, just watery and dark. I peed at least 55 times that day and 60 times the next day and about 40 times the following days. I went to see my PCP 3 days later and he referred me to a Urologist who I got lucky to a day later( BTW, I have not slept at all due to having to pee). When i saw him I had a random weakness that hit both of my legs that moment, and he said he never met anyone my age that peed that many times in a day. He prescribed me Myrbetriq which i took only for one day. Urine came out clean, except I always had +1 or +2 Ketones. Days went by and life was difficult due to urination and weak feeling legs. I could not sleep due to the urination and the numbing feeling of my legs which felt like they were vibrating. I did not sleep for 6 days until my body finally crashed which felt insane. 7 hrs of sleep and woke up, still had urination issues and weak feeling leg issues then no sleep again for the following 2 days. Within a 9day span, I only slept 8 and a half hrs. Took several naps. My brain felt very weird like I was crazy. I went to the ER because I thought I was having a heart attack but it was only a panic attack.. saw a urologist, prescribed me Doxycycline. Peeing didn’t get better for a month period, but I began sleeping 4-6 hrs a day and would also have a day a week of no sleep sometimes due to urination or leg feeling. Got a penile yeast infection, never had! But according to Urologist was not a known side effect to Doxy. So i began taking Cipro, and antifungal cream. I also had constant burping and heart burn which both got very annoying and lasted till late April.
Mid March, I began getting bad abdominal pain like it was being stretching and felt numb and cold at the same time as if it was wet. Did a CT scan, everything was normal except I did have Untraceable fluid... this continued but I had terrible bowel movement, then randomly began passing stool every morning and it would come out great everyday for a month, and every time i wiped, the paper was clean...
Keep in mind I have been having terrible sleep, so my mind felt weird, its hard to explain. I began having very bad upper back pain and the numbness went all the way to my arms and it felt weak. I was limping and felt like I was going to die! NEW SYMPTOM, joint pain with tingling and numbness in all limbs including head(head tingling goes away).A very sharp headache my head, one I never felt, as if a needle went through the roof of my mouth and out the top of my brain. I went to the ER because of the weakness and I had pain on the right side of my rib, urination issues, painful hand movement, difficulty with fingers, overall joint-pain, numbness, and bad headache. NEW SYMPTOM, very emotional. Got an MRI of my whole spine, my head, CT of brain and everything was normal. Something interesting, while in the tube of the MRI, certain sounds or vibrations caused pain to my rib muscle and lower abdomin, which caused a vibration in itself that would decrease... found that interesting. Anyway, there Neurologist there said I was negative for lyme, MS, thyroid issues, blood test, it was all very clean. The headache lasted 2 weeks but died down. I felt brain dead it was strange, like shut off and not normal. I still had abdominal pain going into the final week of March,but my peeing issue kind of went away. NEW SYMPTOM, felt something in my throat like a flake of cereal was stuck on the side of my throat but nothing was there. I was referred to a neurologist after all this who reviewed my clean MRI but saw that I was still having trouble with headaches and walking normal and weakness. I was scheduled for an EEG and EMG in the last couple days of March. NEW SYMPTOM, fasciculation on my calf and right side of ribs on the day of my EMG. EMG came out clean. But still, I felt weak and numbness everywhere including my face which was frightening and would feel pain when I ate sour foods. I lost 10 pounds without trying. All this gave me so much anxiety and made me think I had all possible illnesses and it drove me nuts inside. Even overthought to the point that I somehow had AIDS!
NEW SYMPTOMS, this started late last year but got really bad early April 2019, my tongue would get tired very fast when talking or eating. It would cramp up. I had numbness everywhere for short periods of time that came and went.
NEW SYMPTOM, very sharp pains on random spots of my body randomly. Like a tightening feeling that was very sharp.
April 6, went to Cedar Sinai ER for weakness, breathing difficulty, fasciculations, pain and cramps, tongue tiredness. Saw the neurologist there and got checked for GBS, MS, Myasthenia gravis( Due to headaches, and also had eye pain, blurry vision)All clean, done a spinal tap, breathing test, Swallow study. Met the in house psychologist and told me to look into FND, or Conversion Disorder. She told me to start taking anxiety pills and said to see a psychologist and psychiatrist. I took the pills only for a couple days because it only made me tired and feel like crap. It did not help. I accepted the FND diagnosis, and tried to live normal. I felt weak but continued, but the pain I was feeling and fasciculations were too much to believe that it was FND. I then had bad anxiety due to all this stress. Around April 15, my left side of my body felt very off and did not know why, and an hour later I felt that I was normal in everything again. I road my skateboard then my knees hurt bad and had the sprained ankle feeling right away and my happiness died. A day later, i met with another Neurologist in Cedar Sinai and I explained everything to her, especially the fasciculations, which was more internal now as well as the tight pain. She simply said its nothing other than a psychological imbalance and to see a psychiatrist.. NEW SYMPTOM, brain fog!!! Forgot things within seconds, plus I still had everything. Around April 25, I woke up with the whole right side of my body completely numb and weak. NEW SYMPTOM, very bad swallowing and weakness on my right side if body. A day later I saw another Cedar Sinai Neurologist. Who really did not take me serious, and blew me off and just agreed with the past neurologist that it was psychological and FND. Btw all these Neurologist I’m seeing are the highest rated neurologist in Los Angeles. Sad but no help. A day later I see an ENT to do an exam and found everything normal, said it could just be my muscles or GERD due to my burping history and heart burn. I went later to my main Neurologist who had performed the EMG on me and told him everything and he simply agreed with the past neurologist: FND. I didn’t have anything clinically to suggest anything serious.
May came and I had everything muscle related at once, fasciculations, pain, breathing, and swallowing difficulties. My brothers found an emergency psychiatrist for me but that did not help. Using CBD products, but they would not help. Late May, my legs began to feel very weak than usual and odd, very scary. My gait was really bad and i felt off balance physically. I saw i that my weight also went all the way down to 163! I panicked very bad.
June, I had everything as I did May just worse GAIT yet if i focus, I can walk normal. My muscles felt painful and I saw that on both my legs, on the right sides, I had a dent, however a lot of people have it so no one took it serious, I just never had it. I also saw that my knee cap was more prominent and had less muscle surround it. My tendons under my knees were visible now as well. My biceps tendon is out too and it all scares me. I felt I was losing muscle or having atrophy because I had lines on them as well. I get scared and meet another Neurologist( best, and most caring of all ) tell him my problem, and he agreed the strength tests are not a good way to check for anything progressive. Also, I gained weight to 175. He suggested he can perform a repeat EMG which i had done again in June 16. At the end of the EMG, Everything came out CLEAN AGAIN! But i know I am losing muscle. He said maybe I just never noticed till now and I am just seeing it and it was already there, or it can still be early to tell if it is something serious. However, he said it is highly unlikely if I have all these symptoms already and everything is clean.
Claiming and really knowing I am losing muscle, he understood my pain and struggle and agreed that only the patient really knows if they truly are losing muscle, difficult to find clinically, he referred me to a Neuromuscular Neurologist in UCLA. My legs felt like they were ripping internally and the fasciculations throughout my whole body was more intense than ever. NEW SYMPTOM, water feeling! I began to feel like water was running down my legs! I went on vacation late June with the okay of my new neurologist, but it was difficult. My legs burned and felt like water was rolling down. My breathing sucked and my fingers would hurt and felt hard to move! My face began twitching a lot as well as my tongue, lips, and gums were vibrating. During June and July, all the muscle related issues have been 2x worse and progressive. Yesterday is always better than the following day. I finally see the Neuromuscular Neurologist mid July, and he believed that my brain went crazy and has difficulty communicating with my muscles throughout my body and suggested only with time it can resolve and can go away. I also gained weight to 183. Based off the Mid June EMG, past clean Blood work, and his clinical examination, I am clean from anything serious. He requested extra extensive blood work that no one has checked and even redoing some blood work do find false negatives on things that can be causing all this. All came out clean!!!! Did a PFT which came back normal due to 10 attempts of trying to reach a certain level.. got diagnosed with dyspnea. I told him I had atrophy and showed him all the locations i suspect and see it, and he said it looked normal. He works at an ALS and Neuromuscular Disorder Clinic so he knows how atrophy looks when he sees it. Later August, I went for a second opinion to UCI’s ALS and Neuromuscular Disorder Clinic to see another Neuromuscular Neurologist. This Neuromuscular Neurologist reviewed my records, performed a clinical examination and told me I do not even have a muscle disorder of disease at all. Nothing alerts him and I showed and told him I had atrophy, lose of bulk, all my tendons being more noticeable, and he examined and disagreed. I mean he is a Muscle Disorder/Disease specialist at the clinic so i accepted in confusion.... September came, I went back to my first Neuromuscular Neurologist in UCLA and explained everything going on still and how it has progressed, he clinically examines me and does not suggest a repeat EMG because he said there is no red flags that suggest anything serious. I gained weight to 193. I told complained to him the second EMG only examined my right side, not my whole body, my neck is the worse! However, he said it did not matter because it would be the same everywhere if it was something serious. Knowing things got worse fast the past 2 months after my EMG i requested another one but he denied its only because he really feels its unnecessary because he deals with ALS and neuromuscular disorders daily, and sees nothing alarming physically. The plan is to return in 3 month, and see if an EMG is necessary later down the line. After all that, he finally gave me a diagnosis. My chief complaints were :
1.) Sensation of water rolling down my whole body not just my legs anymore which is the worse!
2.) Fasciculations everywhere in my body, I literally mean Everywhere. I had a fasciculations every square inch. A sneeze would cause my upper abdomin to twitch.
3.) Tongue movement and Difficulty Swallowing
4.) Weakness throughout
5.) Muscle atrophy, even tho he disagrees..
6.) Muscle Pain, especially lower back.
7.) Breathing Difficulty
8.) Brain Fog, bad memory and over emotional.
9.) Anxiety of being misdiagnosed.
10.) Joint pain especially with fingers.
11.) Back pain and numbness( internal sunburn feeling).
I told him everything listed above, my whole history plus the chief complaints and he gave me a diagnosis:
- Myalgic encephalomyelitis
- Autonomic dysfunction
- Benign Fasciculation Syndrome
- Central Sensitization.
- Exertion DIFFICULTY
i still don't trust this diagnosis, especially ME, because I'm not fatigued which is primary to it. I can carry things longer like before or squat longer. Apparently it counts as fatigued because I burn out easier and can't exert my muscles when i perform like before.
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Ricky whats up man. I had my visit with the Neuromuscular doc this past week. I still dont have a definitive diagnosis. What she did say was that its still not motor neuron or ALS. She doesnt think I have chronic fatigue or Fibro because chronic fatigue she said is given when docs have no clue whats wrong and she doesnt think i have fibro at all. She has written papers on ALS and has practiced Neuro muscular for 30 years basically almost as long as ive been alive. She still feels very certain its not ALS and told me its been 11 months i would have had some failure by now. I took a video of the twitching and showed her so she doesnt think im making it up cause every time i visit her the twitching decides to never show up. She wants to rule out something called issacs syndrome which can be genetic or aquired. She said sometimes it can be aquired from an illness like EBV (epstein barr) or from paraneoplasti syndrome. She took a blood sample to test. She also wants to repeat another EMG in a month or so. She never once mentioned BFS period. This doc is really smart. I still have the twitching, just like you i can sneeze and activate twitching. She said my nervous system is really hyper right now ans my muscles have delayed relaxtion and stiffness. Im fatiging really fast still too and she said my neuro exam was perfect. She said out the 3 times shes seen me (every 3 month visit) this exam is better and im not worse. Idk bro, my story is very similar to yours. She mentioned issacs possible and hyper excitability etc. She might try to treat me for issacs and see if some meds or a couple sessions of plasma exchange. Issacs is a combo of findings by her and some findings on EMG possibly. Personally, its so rare i dont think i have it but it is what it is.
great to hear bud. Sorry that you don't have a diagnosis yet but atleast you have reassurance its not a neuron disease. Yeah so many syndromes exist to cause these things; it is difficult to find the diagnosis. I wish you luck and will get back to you next week.
good day, Just came back from the neuromuscular center. Everything is clear for me once again. No need to follow up according to my neurologist. Good luck man.
what you mean everything is clear? you still have symptoms right? what did they tell you? Whats your final diagnosis? the same things you already said earlier? so are you just to symptom manage rest of your life?
i do have the symptoms, but im clear from muscle diseases. Final diagnosis is same as before. yup just have to manage and live with it.
Did your neuro prescribe you anything? I have stiffness in lower back and it goes down to lower left leg. Its almost as if my back is always having a spasm so it effects upward and downward. What are you taking for the pain/cramps?
nope. He offered to prescribe me medication for it but I said no, also offered muscle relaxant therapy. I am just going to deal with it and find an exercise, change my diet etc.
thats good Ricky. I wish you the best man. Its awesome you found the right mentality to approach this with. I wish i was more like you in that sense. As long as its not fatal and or horrible you can remain strong mentality and try to get your body to heal itself. I am 10 months in. I will try to shape my mind more like you man. At the end of the day, whatever i have could be worse and today i am still alive. Thanks for all your replies bro.
hi , i hope you are doing well , after reading your symptoms i find out that I have the exact same problem like you expect the urinating problem , and till now I did tow emg ant both was clear so if you can tell me how are doing now and if there is anything new about your diagnosis .
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