MS without brain lesions???
Hello all!
I do not have a formal diagnosis of MS, however I have several doctors who have been highly suspicious of it with my symptoms. Unfortunately most of my symptoms didn't come on until after a car accident and that seems to by why there is so much hesitation in ordering tests etc. To my knowledge all the other mimics have been ruled out via lab work. I'll list my symptoms as to not make this post a million years long:
Chronic persistent headaches
Neck and back pain
Tremors
Severe weakness in right leg causing altered gait
Dizziness/imbalance
Tingling in face and extremities
Vision changes
Hyperreflexia on knee jerk
Abnormal pupillary reaction in left eye
(35 yo female btw)
As ive mentioned I have had several doctors who were pretty insistent clinically that I have MS, but were not comfortable making the call bc I dont have lesions on brain MRI. This has led me to be pushed around from doctor to doctor with no answers.
Have any of you been diagnosed regardless of having a "normal" MRI?
(I put normal in quotes, bc I do have a Chiari malformation of 6mm, but was told time after time that it wouldnt cause all the symptoms I'm having.)
I'm scheduled for another lower extremity EMG this week, but I was told to push for a spinal tap/lumbar puncture. Would this be the correct course of action at this point??
I'm sorry; I just saw this. You are correct in your plans. Yes, you can have MS without lesions being seen on an MRI if the MRI is not sensitive enough to pick them up. Here is an article about that you might find interesting. https://multiplesclerosis.net/diagnosis/
Hopefully, by now you talked the doctors into the other testing but if not maybe this information can be used on your next appointment. We have more information available about MS if you have additional questions. Best wishes. Donna Steigleder, Moderator, Multiple Sclerosis, multiple sclerosis.net
You can have spinal lesions.
A proper MRI for should include your spine and be on a MRI of
the highest Tesla power you can get, 3T machines are more common now and they do make some 7 Tesla machines.
Some people are diagnosed with MS who do not have MRIs showing lesions.I also don't have a diagnosis but have recently had my MRIs of brain and spine. I was really struggling with the intense symptoms I was experiencing in July but couldn't get an appt with the Neuro til October so my GP referred me to another specialist who visits my local practice so I could be sent for the MRI. He is an endocrinologist. He doesn't think my symptoms sound like MS and believed I would only have symptoms in multiple places if I was in the later stages of the disease. He called me yesterday to tell me that everything was fine on the MRI... No signs of MS, nor of any scarring from my childhood encephalitis (which was there previously). I got the vibe he just thinks I am an overly anxious person and it is likely in my head.
I am so frustrated at not having answers.
My symptoms have included:
Tingling (started with right hand a few years back) in hands, feet, and sometimes other places including my face, lips, lower legs (esp right)Pin prick, electric or pulsing sensations/burning sensations
Electric shock sensation on my tongue (this has to be the weirdest one) sometimes followed by burning
Spasms/jerkiness
Sensitivity to noise. (years now)
Sometimes sensitivity to light, touch
Tinnitus
Joint pain (had this for years)
Muscle tightness
Floaters in my eyes
Tiredness
Memory and brain foggyness
During the 5 weeks that were really intense my memory and brain fog was really bad (though have had issues with this for years). I was also having trouble with my speech
I do always bump into things as well.
The link above about diagnosis was really helpful and I know from being on this and one other forum that you can have MS and not have lesions in your MRI.
I see the neurologist on the 12th of October. She is a specialist in MS and Epilepsy (which I have) so I really hope that she will recognize that I do have symptoms that warrant further investigation. I hope she will do the evoked potentials testing and the lumbar puncture.
While my symtpoms have calmed down they are still there, particularly the tingling and spasms. I really want some answers.
I need to say to her that even since things have calmed down there are still days that aren't great. I recall one day my hand tingling was so bad I cried because I was afraid it was going to stay exactly like that and my sense of touch was never going to be normal again. Thankfully, it has been better, but I think the point is we know our bodies and we know when something isn't right.
In 2012 I had a huge seizure that latest anywhere up to an hour. Prior to that year I had 7 years of experiencing what I called 'weird feelings' - during which time I had two different GPs. I always wondered if they could be a type of seizure. My first Dr thought it was breathing related. The second thought it was hormonal as I experienced them most months around my period time, on and off during a day. They never considered they could be seizures.
Before I had the seizure in 2012 I had the weird feelings for 2 days. After the seizure I was put on another medication and I haven't had them since so the neurologist confirmed they were seizures. I had looked them up over the years - they were symptoms of the autonomic system and simple partial seizures. At the end of the day my gut feeling was they were seizures. My gut tells me something is definitely wrong and my instinct is that my symptoms reflect MS. They could also be brcauee of disc herniation on the c5 and c6 of my spine but the specialist said in the phone he didn't think that would be causing my symtpoms. Argh.
Cannot wait to see the Neuro!
Thanks for your post. Don't feel so alone in this long wait for answers!Was your huge seizure in July 2012?
Hi Sez,
I read your post and it feels eerily similar to my experience. I too have Epilepsy (partial focal temporal lobe) but seem under control.
My "MS" like symptoms started with right foot burn, then left, them shins, then balance and coordination issues. My MRI of Cervical and Brain were lesion free (T2 w/Contrast)My symptoms have now progressed to include massive brain fog, tinnitus, and I am easily startled by noises. My head/ears feels like someone turned the sensitivity nob up 10 notches. I have twitching muscles all the time, all different body parts...no rhyme or reason. I also suffer from hypnogogic jerks, where I struggle to fall asleep because I "jerk" every time I begin to.
Anyway, long story medium, I'm stuck in limbo being told to wait it out by two Neurologists here in Boston. Have you had any luck getting your neuros to take explore some other possibilities?
Sez81 - Oh my goodness, I'm sorry that you weren't able to see a MS neurologist, but sending you to an endocrinologist makes no sense. MS isn't hormone-related! It looks like you have had your appointment so please let us know how it went. I hope you had your list of questions to ask.
