Aa
could this be MS
. Hi my name is Carol i think i might have MS because im getting crazy symtoms like i start to get a hot flash like im sweating but im not blurry vision body shaking loss of balance and hearing loss or ringing bells all while standing kneeling or sitting and i went to a eye specialist and he told me that i have black spots in the back of my eyes from all the spells this started back in 1996 than in 2001 the spells got worse then in 2007 i seen a ms doc.he strongly told me to go to his ms semiar and said I need to go to this semiar. but the mri came back before the semiar and he did a mri of my brain and it came out normal the doctors wont do a mri of my spine or lp they ruled out seizures and diabetes and lupis.and iv been diagnosis with oab,ibs ,acid reflex d and fibro.and my cousin has ms and my 3rd cousin has it and my moms sister getting tested for ms because it runs in the family to. and they told me that i have ms but i just have to have it confirm im just scared because i dont know whats going on w me.now i get numdness tingling tremers weakness off balance and iv been getting alot of charlie horses and always tired and stiffness and my feet is cold too and in my feet it feel like im walking on glass and lately I've been getting like this electrical shock feeling in my neck and shoulder. can someone please tell me what is wrong with me because i dont know does anybody know what it could be i ve been going though this sense i was 18yrs.old its just getting worse.on 10/18/13 i had a strange ep one morning I woke up and sat up in bed started walking to the bathroom and walking sideways like I was drunk and I was lightheaded and my leg wanted to give out so I started walking back to the bedroom same thing happen if my bed was not there I would've fell right in to the corner of my dresser this has never happen before my right side did not feel right for a while after that lasted for a couple days.i went to so many doctors and said it was panic attacks and they wanted to stuff drugs down my throut
COMMUNITY LEADER
Take a step back and for the moment......focus on what you factually know to be true about your medical situation and how it 'may' relate to MS.
Firstly, there is a lot of misinformation online and in general about MS......'basically' Multiple Sclerosis means Many Scars, and these scars (lesions) are located in the brain and or spinal cord. There are numerous medical conditions that can also cause lesions, but unlike the demyelinating conditions, these lesions are not caused by the hosts immune system attacking the meylin sheath that surrounds certain nerve axons, which negatively effects the central nervous system.
Relapsing Remitting Multiple Sclerosis (RRMS) is the most common type, with approximately 80% of diagnosed MSers experiencing the relapsing and remitting pattern of symptoms (sx's). There is a plethora of symptoms (sx's) associated with MS but they are also associated with many other conditions too, which are typically a lot more common than MS is.
The behavioural pattern of a person's sx's, can often be more relevant in regards to causation eg sx's that are all over the body, moving around, rapidly change, multiply, spread, in all peripherals etc are generally red flags leading away from conditions like MS, simply because MS can't cause sx's to behave like that.
What's more significant in the possibility of a person's sx's being caused by a neurological condition like MS, are their 'clinical signs' of neurological damage. Sx's are completely different and shouldn't be confused with the more suggestive objective evidence of a persons clinical signs. eg Optic Neuritis (ON), adult acquired Nystagmus, Romberg sign, intention tremor, Dysmetria, Ataxia, Babinski sign, unilateral Hyper-reflexia etc etc etc
You haven't actually mentioned any abnormal clinical signs or MRI findings suggestive of a neurological causation for what you've experienced. Your latest MRI "mri on my brain and they found a cyst in my sinuses cavity that is blocking the passage and I had mri's of my c spine and t spine and they found blood vessel tumors in my t spine" whilst it is objective evidence of what might be going on, it's not actually related to MS at all.
Unfortunately the sx's you have mentioned experiencing from 1996 to the more recent, don't really help narrow down potential causes because they are fairly generic and not particularly suggestive of anything i know of to mention getting checked out for. Some are definitely not associated with MS, or if they are loosely associated, they're more due to medication side effects, secondary injury's etc and not directly caused by their MS.
Please keep in mind that whilst it's totally understandable to have some level of anxiety, when you don't know what is medically wrong but if anxiety levels get too high, you can end up fearfully focusing on the medical conditions that worry you the most, which in turn inadvertently fuels the anxiety and spins your thoughts out of your control......IF you think you may need additional help and support, please be proactive about your mental health and seriously consider speaking to your doctor!
I hope collectively the information you've received, will help explain MS a little and get you thinking...........personally, I genuinely don't believe you've mentioned a history or diagnostic evidence (sx type/pattern, clinical, test etc) that would be consistent or suggestive of a diagnosis of MS.
Hugs..........JJ
PS. I know very little about ALS, but apart from objective muscle weakness that ess mentioned, another basic fact is an average life expectancy of 2-5 years, which wouldn't be consistent with what you have mentioned and probably not something you should be very concerned about.
Firstly, there is a lot of misinformation online and in general about MS......'basically' Multiple Sclerosis means Many Scars, and these scars (lesions) are located in the brain and or spinal cord. There are numerous medical conditions that can also cause lesions, but unlike the demyelinating conditions, these lesions are not caused by the hosts immune system attacking the meylin sheath that surrounds certain nerve axons, which negatively effects the central nervous system.
Relapsing Remitting Multiple Sclerosis (RRMS) is the most common type, with approximately 80% of diagnosed MSers experiencing the relapsing and remitting pattern of symptoms (sx's). There is a plethora of symptoms (sx's) associated with MS but they are also associated with many other conditions too, which are typically a lot more common than MS is.
The behavioural pattern of a person's sx's, can often be more relevant in regards to causation eg sx's that are all over the body, moving around, rapidly change, multiply, spread, in all peripherals etc are generally red flags leading away from conditions like MS, simply because MS can't cause sx's to behave like that.
What's more significant in the possibility of a person's sx's being caused by a neurological condition like MS, are their 'clinical signs' of neurological damage. Sx's are completely different and shouldn't be confused with the more suggestive objective evidence of a persons clinical signs. eg Optic Neuritis (ON), adult acquired Nystagmus, Romberg sign, intention tremor, Dysmetria, Ataxia, Babinski sign, unilateral Hyper-reflexia etc etc etc
You haven't actually mentioned any abnormal clinical signs or MRI findings suggestive of a neurological causation for what you've experienced. Your latest MRI "mri on my brain and they found a cyst in my sinuses cavity that is blocking the passage and I had mri's of my c spine and t spine and they found blood vessel tumors in my t spine" whilst it is objective evidence of what might be going on, it's not actually related to MS at all.
Unfortunately the sx's you have mentioned experiencing from 1996 to the more recent, don't really help narrow down potential causes because they are fairly generic and not particularly suggestive of anything i know of to mention getting checked out for. Some are definitely not associated with MS, or if they are loosely associated, they're more due to medication side effects, secondary injury's etc and not directly caused by their MS.
Please keep in mind that whilst it's totally understandable to have some level of anxiety, when you don't know what is medically wrong but if anxiety levels get too high, you can end up fearfully focusing on the medical conditions that worry you the most, which in turn inadvertently fuels the anxiety and spins your thoughts out of your control......IF you think you may need additional help and support, please be proactive about your mental health and seriously consider speaking to your doctor!
I hope collectively the information you've received, will help explain MS a little and get you thinking...........personally, I genuinely don't believe you've mentioned a history or diagnostic evidence (sx type/pattern, clinical, test etc) that would be consistent or suggestive of a diagnosis of MS.
Hugs..........JJ
PS. I know very little about ALS, but apart from objective muscle weakness that ess mentioned, another basic fact is an average life expectancy of 2-5 years, which wouldn't be consistent with what you have mentioned and probably not something you should be very concerned about.
no I have a quack as a neuro but the one I seen on Friday he did different test on me and he measure my legs and why did he do that? because my left leg and hip was in so much pain and I have to use a cane to walk for the past 5-6 days I've been in so much pain my left leg & hip I have to walk with a cane now I have good days and bad days I'm not getting better im getting worse. I don't know what to do. my attacks gets worse in summer than winter. thanks carol
I have a tangle of blood vessels in or more accurately at my spine, extending the entire length of the thoracic spine. This is called a hemangioma, and is common and quite benign.
I have sometimes wondered if it could be masking MS lesions, but probably not. In any case, the radiologist reading the MRI can easily tell the difference between a hemangioma and an MS issue.
I do have diagnosed MS, not on the basis of spine stuff but because of brain lesions, in conjunction with other tests.
You almost certainly don't have ALS, which is characterized by muscle weakness and not by the symptoms you describe. And if your MRIs show no lesions, the probability that you have MS is 5% or less, especially if this is true over time. Please don't try to give yourself a diagnosis of anything. That's a recipe for bad anxiety and worry that is nearly always needless.
Good wishes,
ess
I have sometimes wondered if it could be masking MS lesions, but probably not. In any case, the radiologist reading the MRI can easily tell the difference between a hemangioma and an MS issue.
I do have diagnosed MS, not on the basis of spine stuff but because of brain lesions, in conjunction with other tests.
You almost certainly don't have ALS, which is characterized by muscle weakness and not by the symptoms you describe. And if your MRIs show no lesions, the probability that you have MS is 5% or less, especially if this is true over time. Please don't try to give yourself a diagnosis of anything. That's a recipe for bad anxiety and worry that is nearly always needless.
Good wishes,
ess
invisible lesions are usually seen in people with MS who previously had lesions that attempted to heal themselves.
Have you asked your doctors what these blood vessel tumors mean and their cause/results?
MS lesions in the spine are very difficult to see. I am fortunate that I have a neuro who can see them. I spent almost 30 years before I got a diagnosis. Many of the lesions found in my first MRI are now "invisible", so always save your MRI or ask for a copy of the disc.
You've gotten some excellent advice from my fellow MS patients and cousins having MS gives you probably less than 1% of having it. I think the last statistic I found, was that my children had less than a 2% chance of inheriting it.
There are over 20 mimic diseases of MS, so be patient, and keep a timeline; this will help most any doctor working with you.
Have you asked your doctors what these blood vessel tumors mean and their cause/results?
MS lesions in the spine are very difficult to see. I am fortunate that I have a neuro who can see them. I spent almost 30 years before I got a diagnosis. Many of the lesions found in my first MRI are now "invisible", so always save your MRI or ask for a copy of the disc.
You've gotten some excellent advice from my fellow MS patients and cousins having MS gives you probably less than 1% of having it. I think the last statistic I found, was that my children had less than a 2% chance of inheriting it.
There are over 20 mimic diseases of MS, so be patient, and keep a timeline; this will help most any doctor working with you.
Hi Shorty -
Take a deep breath and try and relax. You have something going on and stress/anxiety will likely make it seem worse.
MS is a relatively rare diagnosis. ALS is even more rare. Both of these are complex diagnoses. My sister is a nurse and based on the questions she's aked me since my diagnosis, she knows next to nothing about MS.
I can't think of a reason that anyone would tell you you had blood vessel tumors if they really thought you had MS lesions. Radiologists can surely tell the difference between nerves and blood vessels and MS has nothing to di with blood vessels.
Is your neuro an MS specialist?
Kyle
Take a deep breath and try and relax. You have something going on and stress/anxiety will likely make it seem worse.
MS is a relatively rare diagnosis. ALS is even more rare. Both of these are complex diagnoses. My sister is a nurse and based on the questions she's aked me since my diagnosis, she knows next to nothing about MS.
I can't think of a reason that anyone would tell you you had blood vessel tumors if they really thought you had MS lesions. Radiologists can surely tell the difference between nerves and blood vessels and MS has nothing to di with blood vessels.
Is your neuro an MS specialist?
Kyle
hi I know something is going on with me but I don't know what I have all the symtoms of ms. they just did a mri on my brain and they found a cyst in my sinuses cavity that is blocking the passage and I had mri's of my c spine and t spine and they found blood vessel tumors in my t spine now could they be ms lesions and their just saying it's blood vessel tumors,as soon as I find out whats going on with me I could go on meds.to help me.my cousin is a r nurse and she said that it's ms or als and i rather have ms then als because I seen my uncle die from als it's horrable site with als I don't want to have als I just need some one to talk to. thanks carol
COMMUNITY LEADER
Yes i have heard of invisible lesions hmmmmm could you possibly be mistaken about "no lesions at all"? IF your friend who's been dx with MS, does in fact have 'zero' brain and or spinal cord lesions over a period of many years, he or she wouldn't actually meet the Mcdonald diagnostic criteria for MS, so it would be extremely unusual for an MS neurologist to dx MS with out any MRI evidence at all, definitely an exception than what's typical for an MS diagnosis.....
I am assuming your neuro also did some other standard clinical neurological testing as well, with those mentioned standing out because they were new to you, but if that was all he/she did you need a better neuro! It would probably be really helpful you, to know if you did have any abnormal clinical results at all, for a neurological causation to be a potential cause there needs to be some neurological abnormality, otherwise if you do have normal clinical and MRI findings after all this time, neurological conditions like MS would be very low on your list of possible causation.
MS does have many conditions that mimic and if there isn't any consistent MS evidence, usually it's one of the mimics a person is dealing with instead, so it's in your best interest to get a hold of your prior test results and consider getting a second MS opinion and more current MRI's.
Cheers.......JJ
I am assuming your neuro also did some other standard clinical neurological testing as well, with those mentioned standing out because they were new to you, but if that was all he/she did you need a better neuro! It would probably be really helpful you, to know if you did have any abnormal clinical results at all, for a neurological causation to be a potential cause there needs to be some neurological abnormality, otherwise if you do have normal clinical and MRI findings after all this time, neurological conditions like MS would be very low on your list of possible causation.
MS does have many conditions that mimic and if there isn't any consistent MS evidence, usually it's one of the mimics a person is dealing with instead, so it's in your best interest to get a hold of your prior test results and consider getting a second MS opinion and more current MRI's.
Cheers.......JJ
hi I just seen a neuro on Friday because I couldn't walk I was in so much pain and I had to walk with a cane and the doc. gave me some math test and some other test and he measure my legs I never had that before I'm getting worse not better have u ever heard of invisible lesions.i have a friend that has ms but no lesions at all my attacks are worse in summer then winter. thanks carol
COMMUNITY LEADER
Hi and welcome,
Generally it's not unusual for autoimmune conditions to run in families but with MS, it's actually much more common to be the only person in the family to be diagnosed (dx-d) with MS. Statistically the further removed you are genetically, the less significant a family member's dx is to you, there is a slighter increase but twin studies indicate genetics are not the only potential factor at play. So with your cousin and 3rd cousin being dx-d with MS and your aunt possibly having MS too, technically it shouldn't be a significant factor in if MS is what you are dealing with......
If your time line is correct and this started when you were 18 (1996), it would be highly unusual if you were dealing with MS, for the MRI ordered by an MS specialising neurologist in 2007 (11 years later) to have not found any brain lesions and still be totally normal over that long a period. Still if your clinical neurological exams actually show abnormal results, your MS neuro should of scheduled follow up neuro exams, MRI's etc but if 'all' your diagnostic tests were also normal, without having anything neurologically abnormal or suggestive, it would be understandable for MS to be a less likely possible cause.
I'm not sure how panic attack came out of that one off episode in 2013, possibly from high levels of obvious anxiety you may have displayed after the event, but it actually could of been a number of things unrelated to mental health (eg low blood sugar (hypoglycemia)) even if nothing showed up abnormal during blood tests. If it's not happened again since, it's probably going to stay an unknown and will only be significant if it does return.
All I can suggest is for you to consider getting a second MS opinion, especially if after now going on 20 years you are still in limbo and MS is still a genuine concern to you, though keep in mind that it may not actually be MS if you still have normal neurological (clinical signs) findings and normal MRI's.
Cheers........JJ
Generally it's not unusual for autoimmune conditions to run in families but with MS, it's actually much more common to be the only person in the family to be diagnosed (dx-d) with MS. Statistically the further removed you are genetically, the less significant a family member's dx is to you, there is a slighter increase but twin studies indicate genetics are not the only potential factor at play. So with your cousin and 3rd cousin being dx-d with MS and your aunt possibly having MS too, technically it shouldn't be a significant factor in if MS is what you are dealing with......
If your time line is correct and this started when you were 18 (1996), it would be highly unusual if you were dealing with MS, for the MRI ordered by an MS specialising neurologist in 2007 (11 years later) to have not found any brain lesions and still be totally normal over that long a period. Still if your clinical neurological exams actually show abnormal results, your MS neuro should of scheduled follow up neuro exams, MRI's etc but if 'all' your diagnostic tests were also normal, without having anything neurologically abnormal or suggestive, it would be understandable for MS to be a less likely possible cause.
I'm not sure how panic attack came out of that one off episode in 2013, possibly from high levels of obvious anxiety you may have displayed after the event, but it actually could of been a number of things unrelated to mental health (eg low blood sugar (hypoglycemia)) even if nothing showed up abnormal during blood tests. If it's not happened again since, it's probably going to stay an unknown and will only be significant if it does return.
All I can suggest is for you to consider getting a second MS opinion, especially if after now going on 20 years you are still in limbo and MS is still a genuine concern to you, though keep in mind that it may not actually be MS if you still have normal neurological (clinical signs) findings and normal MRI's.
Cheers........JJ
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