Aa
New to MS
(I'll apologize a head of time for the long essay but I have a lot on my mind and questions to ask)
Hi I'm a 23 year old female and am new to this forum. I have recently been undergoing medical tests to determine if I have MS. I have had three MS like attacks. Back in 2005 I had my first MRI done to rule out MS and the MRI came out clean and they did no follow up. Just recently I had another attack similar to the last episode except it was more intense and instead of lasting a month it has lasted two months. I have seen a different neurologists this time and was told that just because lesions did not show up on the MRI does not mean that I am clear from having MS. I recently got a new MRI done and they have found that I have three lesions in the back of my brain now. They still can not diagnose me with MS because I was told you need nine lesions.I was once again told that MS still can not be ruled out, that it could just be a beginning stage and not full blown MS yet. I also had a spinal tap done that came out negative for MS. Again they said that even though it came out negative I could have MS.It's seems like an endless process to get a diagnosis.
They are now wanting me to get an MRI done of my spinal cord to see if there are any lesions there. I think if they find lesions they might be able to diagnose me and start treatment. I have done some research on treatment and have found that the treatment options are injections. Are there any other treatment options that do not involve needles? I really do not like all the poking but I guess if that is the only option I better get use to it. I heard the injection treatment options consist of either injections every day, 2 to 3 times a week, or once a week. I have also heard of people with MS taking the holistic route and they are doing fine. What route would you suggest, holistic or traditional western medicine? What are the side affects of injectables?
I'm also curious what other peoples symptoms are and what methods they use to avoid attacks. Does anyone have any theories on what causes MS? I have heard from doctors that the virus involving Mono might be connected to MS. I had Mono at age 14 and I have also had Spinal Meningitis (viral) at age 19.
My first MS attack was at 19. I got complete double vision, fatigue and dizziness that lasted for two weeks. My second attack at age 20 lasted a month I had complete double vision, numbness in my arms and legs (especially on my left side), fatigue, weakness in my legs and difficulty walking. My third most recent episode has lasted two months. My symptoms once again were complete double vision,fatigue, numbness in my limbs and weakness in my legs and difficulty walking. I also had bobbling vision (where my vision will shake), extreme sore eyes and pressure in my eyes and in my head between my eyes. It was so bad that I would lay down with an ice pack on my eyes and I would wake up from sleep in pain. I have also started having this strange feeling in my head off and on like a bobbling rocking motion, almost like having the shivers but in my brain.Does anyone else have similar symptoms? What causes these sensations?
I have also been diagnosed with Dermagraphism last year. In August 2007 I started experience swelling and redness to my skin every time it gets scratched or pressure to it. The swelling and redness will appear and go away in like 30 minutes.You can literally write your name on my skin if you scratch me.It sometimes itches too. I was told that I probably had this all my life but I swear I never had it before. Could this be a misdiagnoses and some other kind of disease that could be related to these MS like symptoms? Does anyone know of any suggestions?
I have also experienced what I believe to be pixelated vision or snow vision ever since I was a child and always thought that it was normal. I see billions of little bright dots that make up everything.They look like static from a T.V. that are light colored like looking into a light bulb (except not quite as bright). They move and are more intense in darker settings. I also see halos or auras around people and objects and trails when things move ever since I can remember. I did some research and discovered that snow vision can be a symptom of MS but would this be related to MS even though I experienced it as a child. I would think if I had MS that far back that I would have a lot more lesions in my brain then I do now.
I have also had a history of what I think to be night terrors and sleep paralysis. As a child I would go in these trances like I was half awake and half asleep, my eyes would be open and I would hallucinate really scary things and start to freak out and scream and my parents would try to snap me out of it by shaking me but it was as though I was somewhere unreachable. As I got older sometimes when I would try to awake from sleep I would get stuck between being awake and a sleep and feel completely paralyzed and heavy and then would experience hallucination's in my room of things that were always trying to hurt me. Is this related or a symptom of something else? It's probably not but I'm curious if there might be a connection.
Does anyone know of any other medical reasons that I could be having these problems other then MS? Or do I sound like a classic case? The mystery continues.... Hopefully answers will come soon.
Hi I'm a 23 year old female and am new to this forum. I have recently been undergoing medical tests to determine if I have MS. I have had three MS like attacks. Back in 2005 I had my first MRI done to rule out MS and the MRI came out clean and they did no follow up. Just recently I had another attack similar to the last episode except it was more intense and instead of lasting a month it has lasted two months. I have seen a different neurologists this time and was told that just because lesions did not show up on the MRI does not mean that I am clear from having MS. I recently got a new MRI done and they have found that I have three lesions in the back of my brain now. They still can not diagnose me with MS because I was told you need nine lesions.I was once again told that MS still can not be ruled out, that it could just be a beginning stage and not full blown MS yet. I also had a spinal tap done that came out negative for MS. Again they said that even though it came out negative I could have MS.It's seems like an endless process to get a diagnosis.
They are now wanting me to get an MRI done of my spinal cord to see if there are any lesions there. I think if they find lesions they might be able to diagnose me and start treatment. I have done some research on treatment and have found that the treatment options are injections. Are there any other treatment options that do not involve needles? I really do not like all the poking but I guess if that is the only option I better get use to it. I heard the injection treatment options consist of either injections every day, 2 to 3 times a week, or once a week. I have also heard of people with MS taking the holistic route and they are doing fine. What route would you suggest, holistic or traditional western medicine? What are the side affects of injectables?
I'm also curious what other peoples symptoms are and what methods they use to avoid attacks. Does anyone have any theories on what causes MS? I have heard from doctors that the virus involving Mono might be connected to MS. I had Mono at age 14 and I have also had Spinal Meningitis (viral) at age 19.
My first MS attack was at 19. I got complete double vision, fatigue and dizziness that lasted for two weeks. My second attack at age 20 lasted a month I had complete double vision, numbness in my arms and legs (especially on my left side), fatigue, weakness in my legs and difficulty walking. My third most recent episode has lasted two months. My symptoms once again were complete double vision,fatigue, numbness in my limbs and weakness in my legs and difficulty walking. I also had bobbling vision (where my vision will shake), extreme sore eyes and pressure in my eyes and in my head between my eyes. It was so bad that I would lay down with an ice pack on my eyes and I would wake up from sleep in pain. I have also started having this strange feeling in my head off and on like a bobbling rocking motion, almost like having the shivers but in my brain.Does anyone else have similar symptoms? What causes these sensations?
I have also been diagnosed with Dermagraphism last year. In August 2007 I started experience swelling and redness to my skin every time it gets scratched or pressure to it. The swelling and redness will appear and go away in like 30 minutes.You can literally write your name on my skin if you scratch me.It sometimes itches too. I was told that I probably had this all my life but I swear I never had it before. Could this be a misdiagnoses and some other kind of disease that could be related to these MS like symptoms? Does anyone know of any suggestions?
I have also experienced what I believe to be pixelated vision or snow vision ever since I was a child and always thought that it was normal. I see billions of little bright dots that make up everything.They look like static from a T.V. that are light colored like looking into a light bulb (except not quite as bright). They move and are more intense in darker settings. I also see halos or auras around people and objects and trails when things move ever since I can remember. I did some research and discovered that snow vision can be a symptom of MS but would this be related to MS even though I experienced it as a child. I would think if I had MS that far back that I would have a lot more lesions in my brain then I do now.
I have also had a history of what I think to be night terrors and sleep paralysis. As a child I would go in these trances like I was half awake and half asleep, my eyes would be open and I would hallucinate really scary things and start to freak out and scream and my parents would try to snap me out of it by shaking me but it was as though I was somewhere unreachable. As I got older sometimes when I would try to awake from sleep I would get stuck between being awake and a sleep and feel completely paralyzed and heavy and then would experience hallucination's in my room of things that were always trying to hurt me. Is this related or a symptom of something else? It's probably not but I'm curious if there might be a connection.
Does anyone know of any other medical reasons that I could be having these problems other then MS? Or do I sound like a classic case? The mystery continues.... Hopefully answers will come soon.
Welcome to the forum, hbomb!
If you're diagnosed with MS, then I definitely think you should be taking a drug to slow down progression. However, they're all injectables - there isn't an oral medication for MS yet. Believe me, when they come out for one, I'll be the first one on it - I can't stand injecting myself. However, the alternative is worse! I slacked off from taking my injections - one every other day, instead of one every day - for about two months. I had a flare last month. So i started up again.
I'm on Copaxone, which has few side effects. Mainly site reactions like welting and lipoatrophy. Betaseron supposedly has flu-like side effects.
Problems with the eyes are caused by nerve damage leading from the optic nerve to the point in the brain where it receives information from the nerve - so the damage could be along any point. Many times the optic nerve gets a lesion, as it's white matter, and susceptible to MS damage.
Numbness, weakness, and shakiness are all problems with the nerves leading to the muscles and skin. Sometimes one set of receptors - usually fine touch - are disrupted, while rough touch and temperature are unaffected. Muscles can become weak from cerebellar damage, or from spinal damage.
Vertigo and dizziness are common MS symptoms. One of my first real warning signs was persistent vertigo. At first it was intermittent, then it was all the time, and soon I had trouble walking in a straight line - I kept turning too far to the right. The doc says this was because of the lesion in my cerebellum.
For more information about your symptoms, check out the Health Pages, which are pretty good, and very readable.
If you're diagnosed with MS, then I definitely think you should be taking a drug to slow down progression. However, they're all injectables - there isn't an oral medication for MS yet. Believe me, when they come out for one, I'll be the first one on it - I can't stand injecting myself. However, the alternative is worse! I slacked off from taking my injections - one every other day, instead of one every day - for about two months. I had a flare last month. So i started up again.
I'm on Copaxone, which has few side effects. Mainly site reactions like welting and lipoatrophy. Betaseron supposedly has flu-like side effects.
Problems with the eyes are caused by nerve damage leading from the optic nerve to the point in the brain where it receives information from the nerve - so the damage could be along any point. Many times the optic nerve gets a lesion, as it's white matter, and susceptible to MS damage.
Numbness, weakness, and shakiness are all problems with the nerves leading to the muscles and skin. Sometimes one set of receptors - usually fine touch - are disrupted, while rough touch and temperature are unaffected. Muscles can become weak from cerebellar damage, or from spinal damage.
Vertigo and dizziness are common MS symptoms. One of my first real warning signs was persistent vertigo. At first it was intermittent, then it was all the time, and soon I had trouble walking in a straight line - I kept turning too far to the right. The doc says this was because of the lesion in my cerebellum.
For more information about your symptoms, check out the Health Pages, which are pretty good, and very readable.
I haven't sent you my welcome to the forum yet so....WELCOME!!!!
I had a problem with this back years and years ago, I just thought it was nerves and stress that caused it. This is very interesting.
Again, welcome, we are all glad you are here with us to share all that you have learned both during your experience of being dx and since your dx.
doni
I had a problem with this back years and years ago, I just thought it was nerves and stress that caused it. This is very interesting.
Again, welcome, we are all glad you are here with us to share all that you have learned both during your experience of being dx and since your dx.
doni
Okay, this is the first time I have considered that the "skin writing" may be associated with MS. Appx 2 mos ago, I started having hives. They occurred in areas that my skin made contact with other surfaces i.e. around my belt, on my arms after carrying in groc. with my arms wrapped around the bag, etc. I called my GP. He gave me two choices, go straight to the ER or come to the clinic. I went to the clinic. He reviewed my medications, changes in diet, soap, lotions etc. He finally said he wasn't sure what was causing my hives but he didn't think they were related to my meds. He RXd Claritin 10mg 1xdaily. He said the hives might be due to stress and sometimes the reason was never known. I took the Claritin for abt a month. Then decided I probably didn't need it anymore. Within days they were back. The first week I did some research on hives. I thought mine were weird considering the catylist. I found some web sites on skin writing. I knew this was what I had because I had traced my name on my arm and within mins the welts had risen spelling my name. As long as I take the meds I don't have whelps but I do have some annoying itching. Anyways, I never thought of it in regards to MS. I find that interesting and if I remember I will mention to my doctor the next appt. Last I have had the skin writing several times throughout my life, I thought they were a part of seasonal allergies. I guess not.
Hi there, I am nearly 25 and was diagnosed with MS 2 years ago. I'm thought to have had MS all of my life. I can't believe reading your commentary, for a minute I thought maybe I had made the post at some other time. In 1996 I began getting these welts all over my body. I was diagnosed then with Dermagraphism, and have never heard of anyone else with it. It is really obnoxious, and everyone is constantly asking what I did to myself or who scratched me. It's so annoying. I have been on Zyrtec since the age of 12, and have also experienced the same night terrors that you speak of on multiple occasions. In mine, my eyes are open, and they feel almost as if they are rolling back in my head, and I am always trying to call out for help, but can't. It is amazing to hear of smoeone else who has experienced all of these the same as me. I'm beginning to believe that dermagraphism is caused by MS, as MS is an autoimmune disease, it makes you susceptible to some strange phenomena. I initially looked up MS and dermagraphism, because on another site I read that itchiness is a symptom of MS. I was like, I am ALWAYS itchy!Please feel free to e-mail me directly at ***@****, and we can compare more.
It looks like you got some great info from Heather. I am a Limbo-Lander--my dr thinks early MS--but my MRI and LP were negative. I just wanted to post about your "snow vision." That's exactly how I described it to my neuro and she had heard it before. I can see--but there's a shadowy "tv snow" field over everything--making things look like they are moving when they aren't. This lovely sx came on in January for me--started off as episodic--now is all the time.
Good luck and keep us posted.
Good luck and keep us posted.
I think the best advice on treatment is to use both holistic and disease modifying drugs. Yes, neeles are the main way of receiving drugs for treating MS.
Also, I am not sure if anyone has suggested LDN to you. You might consider this apprach.
Also, I am not sure if anyone has suggested LDN to you. You might consider this apprach.
Paragraph one (1): First of all, I don’t know where your doctor gets his criteria for diagnosising MS. No where have I seen it written in what is called the “McDonald Criteria for diagnosising MS” where it says that you MUST have “9 lesions” to get a diagnosis.
I suspect that you are in the early stages of MS. Notice I said suspect. I am not a doctor, only a person diagnosed with MS for over a decade. It is also not unusual for you to have a negative spinal tap at this point.
Paragraph two (2): You are correct. If they find lesions in the spinal cord, they may indeed be able to diagnose you from their findings on physical exam; the total exclusion of other causes that mimic MS and positive MRI findings with clear relapses and remissions.
To date, all the disease modifying drugs for MS are injectable drugs. There is great hope for a new drug that will be taken by mouth somewhere towards the end of 2009. It claims to have a 70-80% chance of preventing further relapses and lesions, compared to the 30-40% we can expect from the injectable drugs we have available today.
Whether you take a medical approach to preventing further relapses or holistic approach is a decision only you can make. So I cannot suggest either to you. I am taking the medical approach. In my case, it gives me more promising hopes for remissions. Please keep in mind that this is my personal choice.
Paragraph three (3): There are many “theories” about what causes MS. Some believe is has to do with living in a colder climate before the age of 15. Some believe it’s triggered by an over active immune response to Epstein-Barr Virus. To date, no one has come up with the actual cause of MS. If they did, I believe that we would have a cure by now.
Paragraph four (4): The vision problems, the fatigue, the numbness and weakness and even the difficulty walking are all very familiar to me. If I have any pain in my eye from an attack, it is confined to one eye and it’s called Optic Neuritis. Commonly known as O.N. on the Forum. The pain and pressure you have between both eyes, may be a separate problem all together and may actually be from your sinuses. I have also heard about mini-tremors in the head, like a bobble head.
Paragraph five (5): I have not heard that Dremagraphism is related to MS. I really have no realistic answer to this, because I simply do not know.
Paragraph six (6): I have also never heard of these kinds of vision problems in MS, but that doesn’t mean that they aren’t. It will take one of our other members with more knowledge about this, to answer it for you. Your last sentence, “I would think if I had MS that far back that I would have a lot more lesions in my brain then I do now.” It takes time in the early stages of MS to show lesions on the brain or spinal cord. In my case, had MRI been available when I was a little child (I am now 54, I believe that they may have seen lesions way back then. I did not have an MRI until I was almost 41 years old.)
Paragraph seven (7): This also is a new symptom I have never heard about. This too may be a separate problem from MS, that only your doctor can sort out. This must be scary as all get out. I can only imagine.
Paragraph eight (8): There are many things you speak of that sound like classic MS. I must admit that I think you have a couple of other things going on, for which I have no answers. What your spinal MRI reveals may be very informative to your doctor. Hopefully it will be done on MRI equipment that has the power of what is known as a “3T” and done with and without contrast dye. The spine can be very hard to imagine. The stronger the MRI the better and contrast dye is always important when looking for lesions.
I hope that a couple of things I have said, make sense to you. I look forward to other members chiming in with their thoughts and ideas, about some of this.
Welcome again. We are glad that you decided to join us.
Heather
I suspect that you are in the early stages of MS. Notice I said suspect. I am not a doctor, only a person diagnosed with MS for over a decade. It is also not unusual for you to have a negative spinal tap at this point.
Paragraph two (2): You are correct. If they find lesions in the spinal cord, they may indeed be able to diagnose you from their findings on physical exam; the total exclusion of other causes that mimic MS and positive MRI findings with clear relapses and remissions.
To date, all the disease modifying drugs for MS are injectable drugs. There is great hope for a new drug that will be taken by mouth somewhere towards the end of 2009. It claims to have a 70-80% chance of preventing further relapses and lesions, compared to the 30-40% we can expect from the injectable drugs we have available today.
Whether you take a medical approach to preventing further relapses or holistic approach is a decision only you can make. So I cannot suggest either to you. I am taking the medical approach. In my case, it gives me more promising hopes for remissions. Please keep in mind that this is my personal choice.
Paragraph three (3): There are many “theories” about what causes MS. Some believe is has to do with living in a colder climate before the age of 15. Some believe it’s triggered by an over active immune response to Epstein-Barr Virus. To date, no one has come up with the actual cause of MS. If they did, I believe that we would have a cure by now.
Paragraph four (4): The vision problems, the fatigue, the numbness and weakness and even the difficulty walking are all very familiar to me. If I have any pain in my eye from an attack, it is confined to one eye and it’s called Optic Neuritis. Commonly known as O.N. on the Forum. The pain and pressure you have between both eyes, may be a separate problem all together and may actually be from your sinuses. I have also heard about mini-tremors in the head, like a bobble head.
Paragraph five (5): I have not heard that Dremagraphism is related to MS. I really have no realistic answer to this, because I simply do not know.
Paragraph six (6): I have also never heard of these kinds of vision problems in MS, but that doesn’t mean that they aren’t. It will take one of our other members with more knowledge about this, to answer it for you. Your last sentence, “I would think if I had MS that far back that I would have a lot more lesions in my brain then I do now.” It takes time in the early stages of MS to show lesions on the brain or spinal cord. In my case, had MRI been available when I was a little child (I am now 54, I believe that they may have seen lesions way back then. I did not have an MRI until I was almost 41 years old.)
Paragraph seven (7): This also is a new symptom I have never heard about. This too may be a separate problem from MS, that only your doctor can sort out. This must be scary as all get out. I can only imagine.
Paragraph eight (8): There are many things you speak of that sound like classic MS. I must admit that I think you have a couple of other things going on, for which I have no answers. What your spinal MRI reveals may be very informative to your doctor. Hopefully it will be done on MRI equipment that has the power of what is known as a “3T” and done with and without contrast dye. The spine can be very hard to imagine. The stronger the MRI the better and contrast dye is always important when looking for lesions.
I hope that a couple of things I have said, make sense to you. I look forward to other members chiming in with their thoughts and ideas, about some of this.
Welcome again. We are glad that you decided to join us.
Heather
What I have done is to print out your post and I am going to try and go through it paragraph by paragraph and see if I can give you some insight about the things you speak of.
It might take me a little time, but wanted to let you know that I am working on it. When I am finished, I will post it here.
I didn't want you to think that I was ignoring you...so give me a little time to work on this...okay? Sometimes I can be a little slow. But I want to see if I can help.
Welcome again (since I already left you a personal note) to the MS Forum. We will do everything we can, to try and help. Every member here has some great advice to offer with their experiences of being undiagnosed and diagnosed.
Hang in there...will be back shortly,
Heather
It might take me a little time, but wanted to let you know that I am working on it. When I am finished, I will post it here.
I didn't want you to think that I was ignoring you...so give me a little time to work on this...okay? Sometimes I can be a little slow. But I want to see if I can help.
Welcome again (since I already left you a personal note) to the MS Forum. We will do everything we can, to try and help. Every member here has some great advice to offer with their experiences of being undiagnosed and diagnosed.
Hang in there...will be back shortly,
Heather
I think your "essay" comes down to three key questions.
Symptoms -- Is it MS? I had unexplained symptoms 10 years ahead of my diagnosis ... it's very frustrating to have doctors just shrug their shoulders. Your vision, fatigue, dizziness, numbness, and sleep problem issues are all too familiar. I will say I wouldn't be inclined to think swelling and redness in the skin is related to MS, but I don't know anything about dermographism.
Treatment? I can only speak for traditional western medicine. It seems to work for me, but I certainly can't prove it. I'm aware that it doesn't work as well, or at all, for others. And others are more susceptible to side effects than I am. I do the once-a-week injection, usually a self-injection, and I hate it. Four years later, with probably several more years to go, I still do it because I hate MS exacerbations so much more. And for that reason, I would encourage anyone to treat MS aggressively. Incidentally, when oral medicines do come around, there's no knowing that their side effects won't be worse.
Causes? I've heard the theories about viruses such as those that cause mono, etc. ... but I have no idea. Could be a gene, could be lack of sun exposure (as MS is apparently more common farther from the equator). I don't think more lesions or larger lesions have ever been correlated with more serious or more frequent symptoms.
When my own "essay" is done I'm not sure I've provided any answers. But we'll never stop trying to find them. It's scary in limboland (I was strangely a little relieved to finally get a diagnosis that I knew was coming), but as pennst8r says, you will find comfort, understanding, and support here. Keep asking questions.
Symptoms -- Is it MS? I had unexplained symptoms 10 years ahead of my diagnosis ... it's very frustrating to have doctors just shrug their shoulders. Your vision, fatigue, dizziness, numbness, and sleep problem issues are all too familiar. I will say I wouldn't be inclined to think swelling and redness in the skin is related to MS, but I don't know anything about dermographism.
Treatment? I can only speak for traditional western medicine. It seems to work for me, but I certainly can't prove it. I'm aware that it doesn't work as well, or at all, for others. And others are more susceptible to side effects than I am. I do the once-a-week injection, usually a self-injection, and I hate it. Four years later, with probably several more years to go, I still do it because I hate MS exacerbations so much more. And for that reason, I would encourage anyone to treat MS aggressively. Incidentally, when oral medicines do come around, there's no knowing that their side effects won't be worse.
Causes? I've heard the theories about viruses such as those that cause mono, etc. ... but I have no idea. Could be a gene, could be lack of sun exposure (as MS is apparently more common farther from the equator). I don't think more lesions or larger lesions have ever been correlated with more serious or more frequent symptoms.
When my own "essay" is done I'm not sure I've provided any answers. But we'll never stop trying to find them. It's scary in limboland (I was strangely a little relieved to finally get a diagnosis that I knew was coming), but as pennst8r says, you will find comfort, understanding, and support here. Keep asking questions.
I wanted to welcome you to the forum. I am sorry that you are going through this. I know that you will find comfort, understanding and support here, in addition to some answers.I am not diagnosed and am also looking for answers. Which means I can't really answer yours. I just wanted to welcome you and tell you that we have some VERY knowledgeable members who will be along to help...maybe not till tomorrow, as they might be asleep.
Take care.
Penn
Take care.
Penn
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