Hi I am so sorry to hear about your suffering but I came across your story and your similiar age to my daughter I wanted to connect similar problems to my daughters own symptoms and problems that just started. We have not recieved any firm diagnosis. My daughter was a migraine suffering before im not sure if you were as well but hers is genetic from her father side. Have you ever heard of Lymes disease? We are researching into this but I am not sure of that is possible from where you live. I hope your are feeling better.
My daughter is now having behavioral changes and memory problems and is not herself anymore this seems to be a later stage shes is experiencing after all the physical and horrible symptoms the previous 2 years. If you could go through her symptoms and let me know I would appreciate it greatly. My daughter was a previous healthy girl as you said you were, a strong vibrant girl started complaining of sudden symptoms she is know 27 and they started when she was 25.
For the past 2 years sudden symptoms she begun and continued to progress and decline with no firm diagnosis. It began with severe fatigue and rash on her chest but drs said it was an allergic reaction with flu like symptoms and joint pain. Then slight depression suddenly for no reason or change in lifestyle pace. She complained she started to feel stiffened and slowed movements with trouble intiating movements. Then stiffness hit her neck and was worse than any stiff neck she ever had during a flu. This lasted for 1 year and half. The drs did blood work extensively including Lyme disease( which is hard to detect correctly through blood)and autoimmune diseases like lupus or MS and MRI of brain neck and spine and ct scans with contrast but all were normal.
Then her vision started to get blurry which she wasn't alarmed because She has had migraine history. But these vision changes were more doubling with heavy weakened eyelids that were difficult to keep open and focusing problems, this forced her to take a leave from her career. She complains her eyes feel so heavy even after rest. She will sleep for 16 hours and up and still feels the same. Her muscles twitch and her arms and legs are ery weak she cant stand for long periods of time.Then the last stage currently was neurological symptoms that have changed her personality and seems mild dementia is beginning. Having trouble with memory, slowly getting confused in familiar places and struggling to recognize people and objects she is complaining severly about. The drs have reassess and redid the MRI if brain neck and spine and EEG with more blood work and a nueropsch test for memory with reasoning questions, She scored average which to me wasn't impressive for a honor graduate in from ivey league college. She has severe bouts with dizziness making walking very hard because she is very off balance and can't stand straight for long. She has just had a VNG test which the dr said has confirmed dizziness from her brain not her ears or eyes.
I really don't know where to go from here she is now having psychosis it seems. Shes having hallucinations and keeps sayins she doesn't feel real, and having severe nightmares. Her speech is becoming off and personality very isolated, and cannot be in public places no longer because she is to disoriented. She is completely different girl and I'm very worried, some type of medical illness the drs have not diagnosed yet is causing severe psychosis or if a movement disorder can cause this type of perdonality detoriation. We have a movement disorder dr we are going to next and dont know where to go from there. Her career she worked so hard took a huge loss. She has never traveled out of country and need advice on how to get answers from this point. *I'm so confused and discouraged. It seems to have begun with physical symptoms and has developed into deteriorating neurological symptoms. Could a movement disorder cause dementia so young?
I have never posted online before but ill give it my best shot and hopefully some of you might have something helpfull to say back. so thank you for taking the time to read this and offer any advice. it is greatly apreciated as i am becoming more confused and worried as time progresses.
almost a year ago i had several things happen at once and it is dificult to know what caused what.
I woke up and within a couple hours my leg began to feel numb. i allso felt extreemly tired. massive migraine. and swolen lymph notes. i thought i was getting the flu except for the wierd leg numbness. i felt i could still walk ( even though i felt like shite) and it was nessasary for me to make a day trip home from where i was. by the end of the 7 hour trip i was in so much pain i was trying not to scream. i walked in my house and fell asleep for 30 hours. woke up tried to go pee. blacked out from pain and dizzyness while on the loo. came too slouched against the wall in the dark and desided to call for help. i waited at the emergency clinic for two hours before seeing a doctor who listend as i cried about the pain i was in and out of frustration for the long painfull wait for help. and after giving me a disbelieveing look took my temperature and turned white when it read 108.
I had lost all the reflexes in my lower body. it had caused my bladder to hold in and become infected wich cause toxins to build up in my body and go into toxic shock ( wich i found out after the tests was due to the fact i had got strep throught simultanously)..
I was on antibiotics for the infections and painmeds for what the doctor deemed 'a siatic nerve flair up' for the next month.
during wich time the dizzyness began.
the first scary time this happend i haped to be in the middle of a driving lesson from my dad. i had to pull over and he had to drive home it was so bad. i felt dizzy to a lesser extent for days.
some time in the next few months i noticed the begining twitches. wich have never stoped since and grown more intence and visable.
the twitches happen allover , but certain spots in each location are favorites.
the inside of my right knee, a few inches up the back of my arm. in certain places across my back or trunk. in my biceps. face. neck. feet. even my but and breasts. infact just as i am writing this i am geting an odd vibrating or fluttering contraction of muscles happeing just above my peck muscle and neer my armpit.
sometimes i experiance it for just a quick second. sometimes it will last intencely through a workout wich targets the mussle ( my effots to get my leg to stop)
but other strang things have me more worried. the vertigo returned about 3 times since. last time most severe had me lay on the bed afraid to move incase i was physicly sick for almost a hour.
during finals last semester my hands became "nonfuntional' and i had to try and turn the pages of my textbook with the sides of my hands in a cupping motion. neadless to say i became frustrated and emotional because whatever was causing my symptoms was now becoming a problem in my dayley life. even if i wanted to keep ignoring it all i couldnt.
spasms in leg while driving worry me. numbness in my face worries me.
when myhands shake so much at school i cant write or at restruaunts i drop things i get imbarised and it worries me.
when i move my arms in backwards circles at any spead it causes my face to go prickily and for my lip to jump upwards like elvis even when i try and bite it diwn- then it spasms more severly.
I experiance extreme fatigue wich grips me withing hours with no warning and i can sleep for 16- 28- 30 hour inturvils if allowed to without inturuption when this occurs.
weakness periodicly bothers me. some days it feels like it takes allot more effort to lift things. making the bed feels near imposible. and i loose some dexterity. such as buttons and shoelaces and texting become dificult.
i have noticed slured speach randomly lasting a mintute or two- enought o look stupid or drunk before snapping back to normal.
visual disturbances. auditory feedback disturbances ( hearing noises not there or misinterpreting noises which are)
sensations of intence pain in targeted locations boath of nerve pain and rash like prickiling sensations.
i wont go into anything psychological because thats another story. and my intent was never to write for so long.
i dont know if this matters to a posible diagnosis or in aims towards getting one.
but i recently discoverd my father and his father experiance the muscle spasms visably and frequently. with my father to the point that it looks like alians wiggling constantly in his legs.
i feel that at the rait the spasms are increesing that it wont take me till i am 50 to look like that.
at first i thought it was nothing. then i thought it was a back injury or siatic nerve. then i thought it was MS or BFS or something neurological because MS can be caused by an auto immune disorder and the body atacking its own brain fats. then i thought it was MS because stenosis of the Vena Cava and cerival veins has been shown to cause MS symptoms such as twitching.
but i think it would be strang that if it were MS it would be in my grampa, father and me and be so 'over-hereditary'? is that a thing?
and allso i dont know if a motorneuron desease or autoimunedeficincy or any of that sort of thing it would not cause a coincidal twitch in my face when i moved my arms a certain way? or would it? i dont know..
any one think they could help organise my symptoms? i would like to have a theroy to take to my doctor. because i dont feel like in most cases they care or have the time to actually listen. which is what i need somone to do in this case if they want to actually help. because i feel like there is something going wrong on a deep levil. and i dont want to be blown off as ' oh its just stress'
thank you so much for your time if you are still reading this.
my love and good vibrations go out to everyone who is out there experiancing worries and health concerns.
-Love & Consciousness.