Aa
Multiple sclerosis at 18????
Hello! I am an 18 year old female and I am quite concerned.
I started having seizures, so I went to the doctors and was prescribed a blood test and an MRI. The results were sent to a neurologist who looked at them and told me that the blood test was fine, but the MRI had a quite a few lesions. He said he was slightly concerned because they resembled what MS looks like on imaging. Next week I will be getting an additional blood test, an MRI with contrast, a Lumbar Puncture and an EEG.
I don’t understand how I could even have this problem. I don’t think I’ve experienced any symptoms before and I am super healthy. I eat healthy, I drink only water, I exercise regularly, I am not overweight at all, I have no mental or cognitive impairments and I perform very well in school. How could something like this even affect someone like me? There are literally 330 MILLION Americans and only 400,000 have this. I don’t understand how I could even be apart of this small population.
Now for the tough stuff for me: if I do have this, am I going to die young? What is the life expectancy for someone that is diagnosed at 18? Will I inevitably end up in a wheel chair because I lose my ability to walk? Will I have to be on anti-seizure medication for the rest of my life? Is this going to make stupid or cause mental impairment? Will I be able to get married and have my own children? Is epilepsy common in those with MS?
Please be honest with me. No sugarcoating.
I started having seizures, so I went to the doctors and was prescribed a blood test and an MRI. The results were sent to a neurologist who looked at them and told me that the blood test was fine, but the MRI had a quite a few lesions. He said he was slightly concerned because they resembled what MS looks like on imaging. Next week I will be getting an additional blood test, an MRI with contrast, a Lumbar Puncture and an EEG.
I don’t understand how I could even have this problem. I don’t think I’ve experienced any symptoms before and I am super healthy. I eat healthy, I drink only water, I exercise regularly, I am not overweight at all, I have no mental or cognitive impairments and I perform very well in school. How could something like this even affect someone like me? There are literally 330 MILLION Americans and only 400,000 have this. I don’t understand how I could even be apart of this small population.
Now for the tough stuff for me: if I do have this, am I going to die young? What is the life expectancy for someone that is diagnosed at 18? Will I inevitably end up in a wheel chair because I lose my ability to walk? Will I have to be on anti-seizure medication for the rest of my life? Is this going to make stupid or cause mental impairment? Will I be able to get married and have my own children? Is epilepsy common in those with MS?
Please be honest with me. No sugarcoating.
Also does th Lumbar Puncture hurt? I am very very very worried about that!
COMMUNITY LEADER
Hi and welcome,
Q: " if I do have this, am I going to die young?"
A: The most inportant word in this question is 'if' and even IF you do end up being diagnosed with a neurological condition like MS, the answer would be No, because MS is not that type of medical condition.
Q: "What is the life expectancy for someone that is diagnosed at 18?"
A: It's imposible to say how long anyone's will be, its kind of a how long is a peice of string type of question because you don't have a diagnosis and anything can happen between now and 70 years from now...
Q: "Will I inevitably end up in a wheel chair because I lose my ability to walk?"
A: I went to write no but your question states 'because i lose my ability to walk' which is a leading question, cause IF you lost the abilty to walk getting around in a wheelchair would one of the most common mobility aides.
Q: "Is this going to make stupid or cause mental impairment? "
A: ?? not sure if you realise how incredibly offensive this question is!
Q: "Will I be able to get married and have my own children?"
A: Yes IF you want to get married and can have children
Q: "Will I have to be on anti-seizure medication for the rest of my life? "
A: Its actually really uncommon for MS to cause seizures, so depending on what type of seizures, causation etc etc will determine the best treatment for your specific situation.
Life is a very long time considering you haven't been diagnosed so probably not something you should even be thinking about.
Try to keep an open mind and not assume anything, you honestly may not have MS or require anti seizure medication, once you've gone through the tests you'll have a better idea on what this could be so until you know and have been officially diagnosed, its in your best interest to be open minded.
Hope that helps........JJ
Q: " if I do have this, am I going to die young?"
A: The most inportant word in this question is 'if' and even IF you do end up being diagnosed with a neurological condition like MS, the answer would be No, because MS is not that type of medical condition.
Q: "What is the life expectancy for someone that is diagnosed at 18?"
A: It's imposible to say how long anyone's will be, its kind of a how long is a peice of string type of question because you don't have a diagnosis and anything can happen between now and 70 years from now...
Q: "Will I inevitably end up in a wheel chair because I lose my ability to walk?"
A: I went to write no but your question states 'because i lose my ability to walk' which is a leading question, cause IF you lost the abilty to walk getting around in a wheelchair would one of the most common mobility aides.
Q: "Is this going to make stupid or cause mental impairment? "
A: ?? not sure if you realise how incredibly offensive this question is!
Q: "Will I be able to get married and have my own children?"
A: Yes IF you want to get married and can have children
Q: "Will I have to be on anti-seizure medication for the rest of my life? "
A: Its actually really uncommon for MS to cause seizures, so depending on what type of seizures, causation etc etc will determine the best treatment for your specific situation.
Life is a very long time considering you haven't been diagnosed so probably not something you should even be thinking about.
Try to keep an open mind and not assume anything, you honestly may not have MS or require anti seizure medication, once you've gone through the tests you'll have a better idea on what this could be so until you know and have been officially diagnosed, its in your best interest to be open minded.
Hope that helps........JJ
9 Comments
LOL sorry for being offensive. I just have never heard of this before and I let my mind get ahead of itself sometimes. Thank you very much for your comment, it’s greatly appreciated :). I’ll just have to wait to see what the future holds.
I have a history of seizures, including an instance of so of status epilepticus, so it could be scarring from that, I suppose. But I think that is unlikely. I have absolutely no idea what could cause so many lesions as I’ve never had an infection of the brain or had a brain injury.
I’m just worried and don’t handle stuff like this well. I have a pretty intense fear of doctor’s appointments and anything medical-related.
I have a history of seizures, including an instance of so of status epilepticus, so it could be scarring from that, I suppose. But I think that is unlikely. I have absolutely no idea what could cause so many lesions as I’ve never had an infection of the brain or had a brain injury.
I’m just worried and don’t handle stuff like this well. I have a pretty intense fear of doctor’s appointments and anything medical-related.
"I have a history of seizures, including an instance of so of status epilepticus"
This history of seizures, are you meaning you are already diagnosed with a seizure disorder before this time you are refering too...."I started having seizures, so I went to the doctors and was prescribed a blood test and an MRI."..?
This history of seizures, are you meaning you are already diagnosed with a seizure disorder before this time you are refering too...."I started having seizures, so I went to the doctors and was prescribed a blood test and an MRI."..?
Yes, I had seizures as a child. Howvever, I went years and years without any problems, so it was assumed that I outgrew them.
It is unclear whether the ones that started a few months ago are related. That is why I was given a blood test and MRI just to be safe. Nobody expected any abnormalities on the MRI.
It is unclear whether the ones that started a few months ago are related. That is why I was given a blood test and MRI just to be safe. Nobody expected any abnormalities on the MRI.
keep in mind that if you had seizures as a child, and a childhood history would typically be more likely to be related in adults seizures, you are just more likely going to find that this latest episode and your MRI results in your very early adulthood is in some way going to be related....
Apparently what was found is probably a ‘radiologically isolated syndrome’. Still completely asymptomatic, but will be keeping an eye on the situation through occasional MRIs and by making sure I am aware of the symptoms that are indicative of MS. It feels like a terrible waiting game...
I would strongly suggest you get a second opinion with an MS specialising neurologist and consider getting a second opinion from an Epilepsy specialising neurologist before you accept a 'wait and see' treatment plan with your diagnosing neurologist!
Seizures are a very uncommon symptom of MS, it does happen but because it's something like only 2-5% of MSer's experiencing seizures and it's usually associated with the abruptly stopping of some medications, fever or infections, seizures as a symptom of MS are classed as rare....
You've also been diagnosed with Radiologically Isolated Syndrome (RIS) which can be a pretty controversial diagnosis in the world of MS, neurologists seem to be divided on if it's a subtype of MS or not, treat or not....from what i understand it's got a lower conversion rate to MS than Optic Neuritis and CIS, RIS is something like 10% within 4 years and these people also have specific details eg also spinal cord lesion(s) etc etc.
Also to be diagnosed with RIS there has to be"no historical
accounts of remitting clinical symptoms suggestive of neurological dysfunction" and whist rare your seizure history 'might' represent unusual clinical symptoms of MS which could change the diagnosis, so it makes sense to get another set of eyes from an MS specialising neurologist so you can be confident in your diagnosis and what it means for you.
Hope that helps........JJ
Seizures are a very uncommon symptom of MS, it does happen but because it's something like only 2-5% of MSer's experiencing seizures and it's usually associated with the abruptly stopping of some medications, fever or infections, seizures as a symptom of MS are classed as rare....
You've also been diagnosed with Radiologically Isolated Syndrome (RIS) which can be a pretty controversial diagnosis in the world of MS, neurologists seem to be divided on if it's a subtype of MS or not, treat or not....from what i understand it's got a lower conversion rate to MS than Optic Neuritis and CIS, RIS is something like 10% within 4 years and these people also have specific details eg also spinal cord lesion(s) etc etc.
Also to be diagnosed with RIS there has to be"no historical
accounts of remitting clinical symptoms suggestive of neurological dysfunction" and whist rare your seizure history 'might' represent unusual clinical symptoms of MS which could change the diagnosis, so it makes sense to get another set of eyes from an MS specialising neurologist so you can be confident in your diagnosis and what it means for you.
Hope that helps........JJ
Yes, I was never really diagnosed with anything, more just a suspicion as it is similar to RIS in nature. I was told that the seizures are likely unrelated to the abnormal MRI findings, but it is not something that can be said definitively, especially since I already have a lower seizure threshold. I was also told that there is a correlation between seizures in MS and having it onset on the younger side of things, so it is hard to tell. Another slight misfortune is that I was never given an MRI as a kid... but rather we assumed everything was normal in the brain due to the type of seizures, the fact that I only had a few, my perfect response to the antiepileptic medication and normal bloodwork (plus, I was too scared to do the MRI and was told it was okay to just wait and see what happens before forcing it). However, this means I have nothing to compare these recent results to and have no idea how long these lesions have existed. They did another MRI, this time with contrast, about a month after the first one and there were no changes and nothing enhanced. I was told by another doctor that the lesion pattern isn’t 100% typical in MS, but it is still radiologically indicative (I believe there were three hyperintensities, not symmetric and not confluent). They also did many, many blood tests for different conditions that may cause lookalikes (such as Lyme, Vitamin B12, etc.) and everything came back excellent.
I think waiting might be the only option I have at this point, but I do appreciate your responses. The neurologist just told me not to worry too much and if things happen, then we’ll figure out how to best handle it.
I think waiting might be the only option I have at this point, but I do appreciate your responses. The neurologist just told me not to worry too much and if things happen, then we’ll figure out how to best handle it.
What type of seizures were you dx'ed with as a young child?
Focal mostly, but also secondarily generalized. Very few luckily. As of July, I am still well.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
