MRI, EEG, EKG, 1 lesion, all over sporadic twitching, tingling, HELP

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So this has been progressively worse over the course of 8 years. Started with eye twitching then mouth (was told hemifacial spasms disease at first). Over the course of 3 years it is all over sporadic rythmic visable twitching one in particular below my cheek bone lasting 3 solid weeks. I also experience numbness and tingling on my legs, my toes go numb if Im walking more than 10 minutes, numbness over my scalp and cramp like pain from my elbows down predominantly in my left arm but can also be right. Im now noticing Im getting sick all the time, colds become chest infections, I had one cold that gave me an eye infection thats now ulcerated infront of my cornea and generally just always run down my childs immune system is (Thankfully) better than mine but Im only 29!. I have had nearly all the standardised test apart from a Lumbar and all they have found is a pingpong ball sized lesion on my front left temporal lobe. I have had no answers, nothing even put on the table for consideration and seems that my neuro is just playing the "Wait and see if it gets worse" game but frustratingly it is and they arent giving me any answers. If anyone has any ideas or experiencing anything similar please let me know as I understand it can take a long time for things to present themselves but its just getting worse with nothing to go on. Should I ask for a new Neuro? Thanks for your time guys

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  • Posted

    Hi Ally, so sorry to hear about your situation. I'm 63 years old and live in Southern California USA. I've seen a ton of different Neurologists and yes I would definitely recommend seeing a new neurologist. I had multiple strokes, diagnosed with Complex Partial Seizure Disorder and Simple Partial Seizure Disorder, White Brain Matter Disease. I had one neurologist tell me my conditions were due to migraine headaches. You have to find the right one you can trust. What my wife did was take a video of when I was having my seizures, because at the time it was difficult to explain what I had been experiencing. Once my new neurologist saw the video he said that's a seizure and He admitted me to the hospital, ran the correct test and that's how I was diagnosed with Complex and Simple Partial Seizure Disorder. Some doctors don't have a clue and don't even take the time to look at all your MRI & CT brain scans. So again, take a video if necessary and find a new neurologist, one you feel comfortable with and trust. I went through 5 different Neurologists until I found one that cared. Good luck.

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    • Posted

      Thank you so much for taking the time to respond! I think I will see a new neuro then, hes seen the twitching first hand and I sent my neuro videos of the twitching and especially the jaw/cheek twitching as it went on so long the cramp I was getting was awful that was a year ago and hes said nothing about them to me. He is a nice person and he is respectful but I feel 8 years is a long time to watch something get worse and do nothing with it. They wont even answer me as to what type of lesion it is but one GP told me "Dont worry its not like its a tumor!" so I can assume its not. I hope your okay from across the pond friend and thank you again for voicing your thoughts :-)

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  • Posted

    Hello. Sound like bartonella. Have you been tested for lyme?  Baronella is a coinfection of lyme. Your symptoms i have experienced. No fun. I eventually went numb from waist down. Lab testing for lyme is terrible. in California is the pnly one that caught it

    [b]Moderator comment: I have removed reference to individual private clinics which are not supported by UK doctors[b]

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  • Posted

    Find am llmd. I had to neuros misdiagnosis it as ms 
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    • Posted

      Hello! Il definitely mention it, Im in the UK so there is even less coverage or information on Lymes but we are slowly catching up. Im not sure if Lymes would show in blood work or not so not sure if it was already considered but something Il most certainly mention. Thanks for your thoughts it really is appriciated, being in Limbo is so frustrating.
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    • Posted

      There is a lab in california. You can go to ILADS .org. They might know of an llmd (lyme literate dr). I the uk. Try gluten free and sugar free and no milk.   I went 8 years undiagnosed and then misdiagnosed as many things such as chronic fatigue, fyromyagia, and then MS. Started ms med. which was horrible. 

      [b]Moderator comment: I have removed reference to individual private clinics which are not supported by UK doctors[b]

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    • Posted

      Thank you so much for your comments. Im going to have a call with my GP today and try and establish what exactally I have been tested for. The communication between Neuro and myself has been pretty terrible, they knew I had a lesion in 2012 but I didnt know until the middle of last year. I was told it was a MRI "Blip" by a technician after the scan which I believed until I was shown my results. Ive lost a bit of faith in the whole process since then. I understand compared to so many im really fortunate but its only getting gradually worse and at this rate Im a little worried what Im going to be like a few more years down the line if I dont get any answers.

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  • Posted

    Well had my phone call with my GP although didn't get very far at all. Said my symptoms have gotten worse since I last spoke to neuro and I would like to find out how to go about getting a second opinion. Didnt even get a chance to say what my symptoms were and I was told that I would have to discuss everything with my Neuro and he will forward a letter to him to let him know. When I asked again for my options regarding a second opinion he just repeated he will speak to my CURRENT neuro and if there was anything else I wanted :-(. Does everyone else hit brick walls like this? I understand its not something they can just click their fingers and get a diagnosis but they always make me feel like I shouldn't have bothered them at all. I just want things to move forward, think its best I try and save up for a private consultation. If anyone has had good or bad experiences on going private feel free to let me know as I have absolutely no idea what to expect! Thanks guys :-)

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    • Posted

      Most lyme patients go thru this. Terrible. Just remember you are the customer. Dont be afaid to speak up. You have to be your own advocate. 300,000 people contract lyme each year in the US.  And the mass majority go undiagnosed. So sad. Good luck on your travels down this road. Not fun. 
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    • Posted

      its so sad to realise how often people are fobbed off when they have legitimate concerns that turn out to be founded. Thanks for your advice its something Im definitely going to ask about if my Neuro see's me. Im thinking of going private now as i feel like Im at the end of the road with my own neuro but il keep posted on here and maybe it will help someone going through something similar . Best of health and luck to you :-)

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  • Posted

    So update time, still no word from my neuro and my Docs just refer me to Neuro whenever I ask anything. Over the last few days my painfree but annoying twitching has become quite painful. Not sure whats going on but even my skin hurt and the pains in my arms and thighs can be horrible, still twitching but instead of it feeling just like movement it feels like a deep dull bruise like pain. Also have a lot of pain coming from behind my eyes, my neck and a crazy dizzy/headache going on. Only thing that helps is ibroprofen but I dont want to be taking the max dose indefinitely just to feel a bit normal. Nothing bad enough to stop me in my tracks but I feel like crap. Any Neuros out there scouring these posts feel free to contact me or anyone with ideas for that matter it would be really appriciated. Thanks everyone :-)
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  • Posted

    ANy  chance of getting a dr to prescribe some doxy for you?    To see if it starts to help
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