I recant had a 3 week episode of extreme confusion where I couldn’t compute basic information, W specially watching the tv, images would remain for a few seconds after they were gone, lost hearing by 40% in one ear and blurred vision. I had an MRI and they said there was a small lesion at the back on my brain but they said they weren’t to concerned about it. I had another MRI but waiting results for that. symptoms have eased by 80% but still poor hearing, and I have recent had a few weeks of constant itching and pains and needles all over which really was a struggle.
Any ideas what is going on? Very frightened.
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Walt46
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I'm sorry about these symptoms. I hope you are seeing a good neurologist, particularly one who specializes in MS. Sometimes, different doctors interpret results differently, but a good neurologist should be able to pull all these tests and clinical exam together. It is isn't necessarily definitive, but have you had a lumbar puncture to study your cerebrospinal fluid? That can be very telling along with other test results. MS can mimic so many other diseases, although the symptoms you describe can fit in with MS. Once you get an accurate diagnosis, you could start appropriate treatment and have some peace of mind that you know what's going on.
Please keep us informed about how you're doing and about your tests results.
I will do and thank you. I hope he is a good neurologist too. I feel like a a spinal tap is the next port of call for me. Everything take so long these days.
By the way, it took a 3t mri machine to reveal all my lesions requested by a MS specialist. The 1.5t mri machine requested by neurologist did not show all the damage and he brushed it off as white matter disease of advanced age. Find MS specialist who uses best machines.
I would like to help you. Really. I had in the beginning neuritis, otitis, my right hand was without movement, and after 2004/5/6 I had hard things in my left leg. After 2007 I hadn’t problems until now 2020,
I have MS since 1998. I have a normal live. But for me is very important not to have stress with people or any situation.
The stress can let my right leg not very bad, but as a memory when my right leg was bad is 2006/7/8 . Now I have a normal live, with bicycle 🚲
Many thanks that’s kind and good info. I have lots of horrible symptoms but the 3 weeks of crazy images and sounds was freaky beyond belief and I’m praying that part never returns.
Maybe coincidence or maybe not. I went to the gym for 2 hours a day for a month and I did feel better. I feel like this slows blood to flow and my nerves open up and allows for thing to work in a normal capacity - I might be wrong but they what I tell myself and that science would make sense to me.
I also had tinitus like I’ve never had before and have it 24/7 with 30% sudden loss of hearing in right ear only. This drives me crazy!!!
I’m glad you are doing ok and I like your positivity!
If you've already been diagnosed with MS please don't be frightened. It may simply be your MS acting up. It's okay to be concerned, so do check this out, but fear only makes everything worse.
I too have lingering images. as well as sounds (spooky, yes, and makes me feel as if I've lost my mind and descended into madness) but when I told my neuro, her response was "hmmm, never heard of that." I should have snapped back, well, now you have, But I always think of a good retort days after I've nursed my grievance. I'm no doc, but the damage to my optic nerves has caused many odd symptoms (flashes of light within my eyes, floaters that come and go, sensitivity to bright light, almost constant eye pain). Fortunately my ophthalmologist specializes in neuro-ophthalmology and has seen and heard of these symptoms before. There is no damage to my eyes, just the big optic nerve, so I assume that nerve damage deep within my brain explains the odd lingering sound phenomena as well.
Others here have described the torment of constant itching,and sensations ranging from ants crawling up an arm or cold water dripping on a leg -- a whole array of MS expressions that plague us. Maybe neurologists should monitor this forum so they can hear of these.
Many thanks. It’s so true in what you are saying. I really feel like it’s all nerve problems that affect the eyes and ears, which makes me think it’s very difficult to treat and is different and unique to each patient. I’m going with the healthy eating and exercise and will see where that takes me what I wait months for a consultant.
As someone who experiences these bizarre symptoms, I have learned that I have to trust my knowledge of who I am and what I experience. Many in the medical community are dismissive of what they do not understand or haven't learned about. Not all MRIs are powerful enough to see deep into the brain and not all lesions can be revealed. Just because a doctor cannot see it, or doesn't trust a patient's experience, doesn't mean the symptom or experience doesn't exist.
As others have already said, these may be symptoms of MS, but could be symptoms of other things as well. I've not had the ghost sounds or images, but do have a tendency to mishear what people say. I also have cognitive and memory issues and those can be scary and frustrating, which in turn raise stress levels, which worsen the symptoms. It's a vicious cycle. Try to stay calm and wait for all the test results. But don't allow the doctor to dismiss your feelings about your symptoms. They don't have to live with the symptoms. Take a trusted family member or friend with you to the appointments to help you remember what was said and bring up issues that need to be discussed. They can also help you call out the doctor if he/she is dismissive about your feelings of your symptoms.
I am going on a month now of having problems with my speech, vision, pain and walking. They only found a tiny lesion to "not worry about". After changing my meds around with still no improvement I am now starting a high dosage steroids. I really hope it works. I feel your pain and hope you recover 100%.
Manu thanks, and I really hope things get better for you too. I’m sure their will be a few more advancements in the years to come, we just need to hang in there.
I underestand that most MRIs don't record lesions in the brain's grey matter(?) and that lesions in the grey matter can result in significant MS issues.
I am sorry to hear about your symptoms. I hope they disappear soon. Cutting out sugar, dairy and gluten may make a huge difference. Just ignore my post if you are already doing this. Feel better!
If you are feeling uncomfortable with what your neurologist is telling you then you can go see another neurologist and get a second opinion. Some neurologists are not as familiar with MS as others are. I changed my neurologist after a year because he questioned me when I questioned him. And he was an MS specialist.
Just an update - I had an appointment today with a leading neurologist and they have signed me off their register as MRI scan and bloods have all come back fine and they can’t find anything to treat.
I don’t understand why I had all these symptoms or why I have tingling head to toe but seems I need to explore another avenue such as liver issues or blood cancers that can cause the suntoms I’ve been having.
I will have to keep exploring and will still update on here. Thank you all for your support and I will pray for you.
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MRI still on for tomorrow, gccj4?
Dx with RRMS but always have symptoms
how do you manage the symptoms when your having hot flashes?
Still having fun
