Hello - this is my first time on the forum, since I just discovered this site.
I'm wondering if anyone out there has both narcolepsy and multiple sclerosis.
I've had narcolepsy for about 8 years, and just this past week was also diagnosed with
multiple sclerosis. I'm am fascinated about the idea that they might be connected somehow.
Any thoughts on this?
Thanks so much, Jan Schluter (New Orleans)
p.s. I am 48 and there's no history of either disease in my family.
Anyone With Narcolepsy And Ms?
Started by
janschluter
, Jan 24 2011 01:10 AM
13 replies to this topic
#2
magpie
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Posted 24 January 2011 - 08:54 AM
Sorry to hear about your diagnosis. Your fascination shows that you are handling it all quite well. I don't know if they are connected, but I did just read that provigil is sometimes used off-label to treat MS. So maybe they are related to each other.
http://jnnp.bmj.com/.../2/179.abstract
Good luck
http://jnnp.bmj.com/.../2/179.abstract
Good luck
#3
kiragrace
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Posted 24 January 2011 - 04:03 PM
Hi, Jan,
Welcome! Sorry to hear about your diagnosis. I'm not sure if narcolepsy and MS are related, but apparently they are both autoimmune diseases.
I have possible narcolepsy (idiopathic hypersomnia) and have been diagnosed with Lyme, EBV......Based on crazy symptoms I have sometimes, I have a secret fear of developing MS.......(also because there is some hypotheses that people with high ebv titers, low vitamin d, etc etc) have a tendency to sometimes develop ms.)
Can I ask what your symptoms for MS were and how you were diagnosed?
Hope you are doing well.
Welcome! Sorry to hear about your diagnosis. I'm not sure if narcolepsy and MS are related, but apparently they are both autoimmune diseases.
I have possible narcolepsy (idiopathic hypersomnia) and have been diagnosed with Lyme, EBV......Based on crazy symptoms I have sometimes, I have a secret fear of developing MS.......(also because there is some hypotheses that people with high ebv titers, low vitamin d, etc etc) have a tendency to sometimes develop ms.)
Can I ask what your symptoms for MS were and how you were diagnosed?
Hope you are doing well.
#4
janschluter
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Posted 24 January 2011 - 05:34 PM
Thanks for your quick responses.
Magpie - Interesting about the Provigil. I tried Provigil, but it did not help my sleepiness as much as Ritalin, which is what I've been taking since I was diagnosed with Narcolepsy.
kiragrace - my symptoms for MS went like this - two years ago I lost part of my vision - it was like a blank spot in my left eye, which turned out to really be in both eyes. I went to the eye doctor, and they sent me immediately to get an MRI. The MRI showed lesions on my optic nerve which resembled the types of lesions in an MS patient. But it also could have been from high blood pressure, diabetes, or a stroke. So I went to a neurologist and had tons of tests and bloodwork. I came to learn that MS is really hard to diagnose. At the time I didn't have any other symptoms of MS - no muscle weakness or fatigue (other than my usual fatigue from N), and my sight returned to normal. So the neurologist said we'd lay low until I had any other symptoms. I was fine until this past November, when my vision went out again. This time it was in the right eye, but again testing showed it was in both eyes. Another MRI showed no more new lesions, but the old ones were still there. Apparently the de-myelinated nerves can become irritated or inflamed, and you have an "episode" where your vision isn't normal.
This time I went to a new neurologist who is an MS specialist. She had me do a spinal tap a couple weeks ago, and there was a protein that shows up in most MS patients. It is still not conclusive, but the spinal tap, put together with the MRI and the vision impairment seems to be about as positive of a diagnosis as you can get.
What is EBV?
The vitamin D thing is also interesting, as I am having to take a Vitamin D supplement since my levels were low.
Oh, one other important test that I had was an MRI on my spine to make sure there were no lesions there, and there were none. I guess that's why my eyes are affected and not my muscles. I also had something called a "visual evoked response," but haven't gotten the results yet.
Try not to worry about getting MS - you have enough on your plate already! Most of the time it's a very slow-moving process, and they are making new discoveries about treatment all the time.
Best of luck to both of you,
Jan
Magpie - Interesting about the Provigil. I tried Provigil, but it did not help my sleepiness as much as Ritalin, which is what I've been taking since I was diagnosed with Narcolepsy.
kiragrace - my symptoms for MS went like this - two years ago I lost part of my vision - it was like a blank spot in my left eye, which turned out to really be in both eyes. I went to the eye doctor, and they sent me immediately to get an MRI. The MRI showed lesions on my optic nerve which resembled the types of lesions in an MS patient. But it also could have been from high blood pressure, diabetes, or a stroke. So I went to a neurologist and had tons of tests and bloodwork. I came to learn that MS is really hard to diagnose. At the time I didn't have any other symptoms of MS - no muscle weakness or fatigue (other than my usual fatigue from N), and my sight returned to normal. So the neurologist said we'd lay low until I had any other symptoms. I was fine until this past November, when my vision went out again. This time it was in the right eye, but again testing showed it was in both eyes. Another MRI showed no more new lesions, but the old ones were still there. Apparently the de-myelinated nerves can become irritated or inflamed, and you have an "episode" where your vision isn't normal.
This time I went to a new neurologist who is an MS specialist. She had me do a spinal tap a couple weeks ago, and there was a protein that shows up in most MS patients. It is still not conclusive, but the spinal tap, put together with the MRI and the vision impairment seems to be about as positive of a diagnosis as you can get.
What is EBV?
The vitamin D thing is also interesting, as I am having to take a Vitamin D supplement since my levels were low.
Oh, one other important test that I had was an MRI on my spine to make sure there were no lesions there, and there were none. I guess that's why my eyes are affected and not my muscles. I also had something called a "visual evoked response," but haven't gotten the results yet.
Try not to worry about getting MS - you have enough on your plate already! Most of the time it's a very slow-moving process, and they are making new discoveries about treatment all the time.
Best of luck to both of you,
Jan
#5
Saraiah
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Posted 25 January 2011 - 08:18 PM
Hi Jan,
There is indeed a connection between MS and narcolepsy, and other sleep disorders. Here are a couple of excerpts from a very recent medical chapter on the subject (Ferini-Strambi, L. (2011). Sleep disorders in multiple sclerosis. Handbook of Clinical Neurology, 99, 1139-46.).
"Sleep disorders are common, although clinically under-recognized, in patients with multiple sclerosis (MS). Approximately half of all patients with MS report sleep-related problems (Tachibana et al., 1994; Figved et al., 2005). Some physical and psychological factors such as pain, anxiety and mood disorders, sleep disordered breathing, and nocturnal discomfort may all contribute to sleep disturbances. Common sleep disorders in patients with MS include insomnia, sleep apnea, restless legs syndrome (RLS), narcolepsy, and rapid eye movement (REM)-sleep behavior disorder (RBD)." (p. 1139)
"Narcoleptic symptoms have long been recognized in patients with MS. Studies published in the first half of the 20th century reported cases of MS associated with sleep attacks termed "narcolepsy" (Jacobson, 1926; Guillain and Alajouanine, 1928). Symptoms of narcolepsy may appear before or after other symptoms of MS (Bonduelle and Degos, 1976).
There is a coincidence of genetic susceptibility between narcolepsy and MS (Schrader et al., 1980)... The susceptibility to MS is coded by genes within or close to the HLA-DR-DQ subregion...The finding that both narcolepsy and MS are strongly linked to similar HLA expression, a hallmark of most autoimmune diseases, suggests that similar autoimmune factors may play a role in the development of both diseases and may be partially responsible for similar symptoms of fatigue and somnolence...
...The symptoms of narcolepsy can occur during the course of several neurological conditions (i.e., symptomatic or secondary narcolepsy).... ...hypothalamic MS plaques have been shown to cause hypersomnia and narcolpetic symptoms in the context of low CSF hypocretin-1 (orexin A) levels (Iseki et al., 2002). Additionally, preliminary data demonstrate abnormally low levels of hypocretin-1 (orexin A) in patients with MS when hypothalamic plaques are present. Therefore, it is possible for CNS inflammation and demyelination, in this area, to cause somnolence by altering CSF hypocretin-1 (orexin A) levels (Kato et al., 2003)." (pp. 1142-1143)
I'm neither a neurologist nor an expert on the subject, but my understanding of all the techno-speak above is this: Most people who have narcolepsy with cataplexy get it when an autoimmune process attacks and kills a particular group of cells in the brain. Those cells are called hypocretin or orexin cells (two different names for exactly the same thing). The hypocretin cells are in charge of the coordination and timing of all sorts of neurological and physiological processes, including all of the various processes involved in sleeping well, and then in staying awake and alert. Once they're almost or completely gone, one gets all of the symptoms of narcolepsy with cataplexy.
When a person has MS, those same hypocretin cells can sometimes get damaged through a different process. But when MS affects those hypocretin cells, it sounds like the outcome can be just the same in terms of having the symptoms of narcolepsy. Different disease process, same result.
Welcome to the message board! I'm sorry that you've got to deal with all of this crap too, but glad to have you as part of the community.
Saraiah
There is indeed a connection between MS and narcolepsy, and other sleep disorders. Here are a couple of excerpts from a very recent medical chapter on the subject (Ferini-Strambi, L. (2011). Sleep disorders in multiple sclerosis. Handbook of Clinical Neurology, 99, 1139-46.).
"Sleep disorders are common, although clinically under-recognized, in patients with multiple sclerosis (MS). Approximately half of all patients with MS report sleep-related problems (Tachibana et al., 1994; Figved et al., 2005). Some physical and psychological factors such as pain, anxiety and mood disorders, sleep disordered breathing, and nocturnal discomfort may all contribute to sleep disturbances. Common sleep disorders in patients with MS include insomnia, sleep apnea, restless legs syndrome (RLS), narcolepsy, and rapid eye movement (REM)-sleep behavior disorder (RBD)." (p. 1139)
"Narcoleptic symptoms have long been recognized in patients with MS. Studies published in the first half of the 20th century reported cases of MS associated with sleep attacks termed "narcolepsy" (Jacobson, 1926; Guillain and Alajouanine, 1928). Symptoms of narcolepsy may appear before or after other symptoms of MS (Bonduelle and Degos, 1976).
There is a coincidence of genetic susceptibility between narcolepsy and MS (Schrader et al., 1980)... The susceptibility to MS is coded by genes within or close to the HLA-DR-DQ subregion...The finding that both narcolepsy and MS are strongly linked to similar HLA expression, a hallmark of most autoimmune diseases, suggests that similar autoimmune factors may play a role in the development of both diseases and may be partially responsible for similar symptoms of fatigue and somnolence...
...The symptoms of narcolepsy can occur during the course of several neurological conditions (i.e., symptomatic or secondary narcolepsy).... ...hypothalamic MS plaques have been shown to cause hypersomnia and narcolpetic symptoms in the context of low CSF hypocretin-1 (orexin A) levels (Iseki et al., 2002). Additionally, preliminary data demonstrate abnormally low levels of hypocretin-1 (orexin A) in patients with MS when hypothalamic plaques are present. Therefore, it is possible for CNS inflammation and demyelination, in this area, to cause somnolence by altering CSF hypocretin-1 (orexin A) levels (Kato et al., 2003)." (pp. 1142-1143)
I'm neither a neurologist nor an expert on the subject, but my understanding of all the techno-speak above is this: Most people who have narcolepsy with cataplexy get it when an autoimmune process attacks and kills a particular group of cells in the brain. Those cells are called hypocretin or orexin cells (two different names for exactly the same thing). The hypocretin cells are in charge of the coordination and timing of all sorts of neurological and physiological processes, including all of the various processes involved in sleeping well, and then in staying awake and alert. Once they're almost or completely gone, one gets all of the symptoms of narcolepsy with cataplexy.
When a person has MS, those same hypocretin cells can sometimes get damaged through a different process. But when MS affects those hypocretin cells, it sounds like the outcome can be just the same in terms of having the symptoms of narcolepsy. Different disease process, same result.
Welcome to the message board! I'm sorry that you've got to deal with all of this crap too, but glad to have you as part of the community.
Saraiah
#6
janschluter
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Posted 27 January 2011 - 11:40 AM
Dear Saraiah,
THANK YOU sooooo much for posting the information about narcolepsy and multiple sclerosis.
Where did you find it? Had you known about the connection before I posted, or did you look it up after
you saw my post?
I suspected that there had to be a connection somehow, because it is just so bizarre that I would end
up with both neurological issues, when neither disease has ever been in my family. But I didn't know the details
that are present in the article you sent.
Do you think that most neurologists are aware of the connection? I am going to tell my doctor about it, because
I wonder if it might make a difference in how they treat me for both diseases. I also have toyed with the idea of
trying to go somewhere like the Mayo, where a team of doctors might be able to put the puzzle pieces together
more quickly.... maybe there are other patients out there like me. I do love my doctor, though, and feel like I
have great medical facilities here, as I am in New Orleans with Ochsner Hospital.
Anyway, I'm rambling. I just wanted to say thanks a thousand times - I probably wouldn't have stumbled upon this
if you hadn't helped.
Sincerely, Jan
THANK YOU sooooo much for posting the information about narcolepsy and multiple sclerosis.
Where did you find it? Had you known about the connection before I posted, or did you look it up after
you saw my post?
I suspected that there had to be a connection somehow, because it is just so bizarre that I would end
up with both neurological issues, when neither disease has ever been in my family. But I didn't know the details
that are present in the article you sent.
Do you think that most neurologists are aware of the connection? I am going to tell my doctor about it, because
I wonder if it might make a difference in how they treat me for both diseases. I also have toyed with the idea of
trying to go somewhere like the Mayo, where a team of doctors might be able to put the puzzle pieces together
more quickly.... maybe there are other patients out there like me. I do love my doctor, though, and feel like I
have great medical facilities here, as I am in New Orleans with Ochsner Hospital.
Anyway, I'm rambling. I just wanted to say thanks a thousand times - I probably wouldn't have stumbled upon this
if you hadn't helped.
Sincerely, Jan
#7
Saraiah
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Posted 27 January 2011 - 12:16 PM
Hey Jan -
You're quite welcome. I'm a geeky person who enjoys learning about narcolepsy and idiopathic hypersomnia in all of their manifestations. When I saw your post, I remembered that I'd recently seen that chapter on MS and sleep disorders, so went to look at it more closely.
My hunch based on that chapter is that some neurologists won't be aware of the connections between MS and narcolepsy - since the author noted that sleep disorders in MS are "clinically under-recognized." But other than that, I don't know.
If one handles it with tact and appreciation, it seems to me that a good doctor will welcome the chance to have you go to a top expert in the field for a consultation. And I know that for particularly complicated cases, some of those top experts can sometimes then consult with your home doctor to help in managing a difficult condition. But of course it's going to depend on the particulars of one's own case, one's home doc, and the capabilities of the outside experts one sees.
Good luck!! I'll keep my eye out for anything else on the connection between MS and narcolepsy. I plod along fairly slowly in my researching, though, just to warn you. But you know the old folk tale - the turtle gets to the finish line, eventually...
Saraiah
You're quite welcome. I'm a geeky person who enjoys learning about narcolepsy and idiopathic hypersomnia in all of their manifestations. When I saw your post, I remembered that I'd recently seen that chapter on MS and sleep disorders, so went to look at it more closely.
My hunch based on that chapter is that some neurologists won't be aware of the connections between MS and narcolepsy - since the author noted that sleep disorders in MS are "clinically under-recognized." But other than that, I don't know.
If one handles it with tact and appreciation, it seems to me that a good doctor will welcome the chance to have you go to a top expert in the field for a consultation. And I know that for particularly complicated cases, some of those top experts can sometimes then consult with your home doctor to help in managing a difficult condition. But of course it's going to depend on the particulars of one's own case, one's home doc, and the capabilities of the outside experts one sees.
Good luck!! I'll keep my eye out for anything else on the connection between MS and narcolepsy. I plod along fairly slowly in my researching, though, just to warn you. But you know the old folk tale - the turtle gets to the finish line, eventually...
Saraiah
#8
RAB
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Posted 16 August 2011 - 11:19 AM
Hi, Jan. My boyfriend sent me the link to your post today, so I joined the site in order to reply. I was 21 years old when I was diagnosed with MS. I had been diagnosed with narcolepsy only a few years before that. (I do not have cataplexy.) I have also suffered from migraines since I was 8 years old, but due to misconceptions about childhood headaches in that era, I was not diagnosed until age 18 years. I am now 29 years old and have been dealing with these issues for some time. (Thank G-d, my symptoms from MS have not been severe.) I too had often wondered about the connection between MS and narcolepsy. I started wondering even more when I was diagnosed with PCOS (polycystic ovarian syndrome) only 2 years after the MS diagnosis. It too is an autoimmune-type illness. No one in my family has/had narcolepsy, MS, or PCOS. Plenty of them have migraines. In any case, I was particularly interested in your post because I also live in New Orleans. I like my current neurologist, but I do not feel that she is on-top of my MS diagnosis. Do you feel that your neurologist at Ochsner is well-versed in MS?
Thanks,
RAB
Thanks,
RAB
#9
janschluter
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Posted 16 August 2011 - 08:21 PM
Thanks for writing and adding your knowledge to the topic.
I do really love my neurologist. She is Bridget Bagert. I first read about her when she was with LSU Medical Center, but she moved to Ochsner-Baptist on Napoleon a couple of years ago. She is very attentive and not rushed, and she refers to herself as an MS specialist. She also encourages me to be pro-active about reading and learning about MS, and using the resources available (for instance, the drug company for Rebif has a phone line called MS Lifelines, and they have nurses on duty 24/7 to answer questions, and they'll also pair you with another MS patient for moral support - she has really encouraged me to take advantage of their help and their literature).
How did you first realize you had narcolepsy? I have never experienced a migraine, but I have close friends who have them, so I know it's awful. It's interesting about the PCOS. I had a great deal of trouble getting pregnant, and once I did, miscarried three pregnancies. They never said it was PCOS, but they thought it was my immune system not recognizing the fetus and attacking it as if it were a tumor. I've also wondered if that is tied into whatever is wrong with me.
I think you would feel lots of confidence with Dr. Bagert. She is young and positive and definitely has a nice "bedside manner." Be sure to write back and keep me posted on how you are.
All the best, Jan
I do really love my neurologist. She is Bridget Bagert. I first read about her when she was with LSU Medical Center, but she moved to Ochsner-Baptist on Napoleon a couple of years ago. She is very attentive and not rushed, and she refers to herself as an MS specialist. She also encourages me to be pro-active about reading and learning about MS, and using the resources available (for instance, the drug company for Rebif has a phone line called MS Lifelines, and they have nurses on duty 24/7 to answer questions, and they'll also pair you with another MS patient for moral support - she has really encouraged me to take advantage of their help and their literature).
How did you first realize you had narcolepsy? I have never experienced a migraine, but I have close friends who have them, so I know it's awful. It's interesting about the PCOS. I had a great deal of trouble getting pregnant, and once I did, miscarried three pregnancies. They never said it was PCOS, but they thought it was my immune system not recognizing the fetus and attacking it as if it were a tumor. I've also wondered if that is tied into whatever is wrong with me.
I think you would feel lots of confidence with Dr. Bagert. She is young and positive and definitely has a nice "bedside manner." Be sure to write back and keep me posted on how you are.
All the best, Jan
#10
RAB
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Posted 29 August 2011 - 09:46 PM
Sorry it had taken me awhile to write back. I appreciated your response. I'm so sorry to hear about your difficulties with pregnancy. That sounds like it must have been very frustrating, on top of bring emotionally distressing. I've not tried to get pregnant yet. I pray that when I'm ready, it will be possible...
To answer your question about the narcolepsy diagnosis, I started having sleep paralysis episodes, along with the hypnogoic & hypnopompic hallucinations surrounding my sleep onset & waking. They were terrifying. I went to my neurologist thinking it must be some type of seizure. He (at the time, a he) did an EEG initially. Later I had a sleep study. I remember the techs saying that my time from onset of sleep to REM cycle sleep was the fastest they'd ever seen, less than 30 seconds. Crazy! Anyway, they also did a blood test, but I never got the results. At the time I doubted the diagnosis, so I didn't bother checking. (I was young.) Anyway, I was diagnosed with narcolepsy.
I dont know if you ever get the sleep paralysis. Mine are always accompanied by a sense of impending doom. The surrounding hallucinations feed into that. I've since learned that this is a fairly common phenomenon. Now it happens less often,. & I'm better able to calm myself, since I know what is happening.
Anyway, I hope you are doing well.
Take care,
RAB
To answer your question about the narcolepsy diagnosis, I started having sleep paralysis episodes, along with the hypnogoic & hypnopompic hallucinations surrounding my sleep onset & waking. They were terrifying. I went to my neurologist thinking it must be some type of seizure. He (at the time, a he) did an EEG initially. Later I had a sleep study. I remember the techs saying that my time from onset of sleep to REM cycle sleep was the fastest they'd ever seen, less than 30 seconds. Crazy! Anyway, they also did a blood test, but I never got the results. At the time I doubted the diagnosis, so I didn't bother checking. (I was young.) Anyway, I was diagnosed with narcolepsy.
I dont know if you ever get the sleep paralysis. Mine are always accompanied by a sense of impending doom. The surrounding hallucinations feed into that. I've since learned that this is a fairly common phenomenon. Now it happens less often,. & I'm better able to calm myself, since I know what is happening.
Anyway, I hope you are doing well.
Take care,
RAB
#11
3:33AM
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Posted 24 January 2012 - 08:49 PM
This is amazing! I'm so glad this topic is out here! I was diagnosed with Narcolepsy with Cataplexy in July of 2010. I have discussed other symptoms and concerns with my doctor, but they were never really given too much attention. I assumed they must be separate issues, for example, almost constant buzzing (ringing) in my head, shooting pains in my back, numbness and tingling in my feet, slurred speech, forgetting or transposing written and spoken words, vision problems, concentration problems, etc.
This past summer, I had my husband take me to the emergency room because of extreme tingling in my legs face and left arm. I felt electric! - like my body parts had fallen asleep, but 10 times stronger! I was tested for a possible blood clot, since I was really concerned about the tense feeling in my neck at the time. It felt like a muscle cramp or blockage of some kind. I tested negative for blood clots, so I was released to go home.
The next day, I had another extreme "electric episode". It was so bad, I felt like my whole left side was plugged into an electrical socket. I went to the ER at a different hospital this time. The tingling in my face became so intense, it almost felt like it became paralyzed. I thought I was having a stroke! A neurologist came in and asked, "have you been diagnosed with Multiple Sclerosis or does anyone in your family have a history of MS?" I told them 'no', but I had been diagnosed with Narcolepsy and had a bulging disc in my lower back. (The pain I was having in my back that day and the day before seemed to be coming from my upper back and neck area. I didn't remember injuring my back or over-exerting myself.) He prescribed some muscle relaxers and ordered an MRI with/without contrast. The results came back negative for any other bulging or herniated discs. The doctor suspected I had just injured myself doing something strenuous or turning the wrong way.
I kept thing about the MS question he asked me in the ER, so I started researching it. I started to see a lot of MS/Narcolepsy similarities. When I saw this "electric sensation" listed as a symptom of MS, it really caught my attention. I'm going to set up an appointment with my sleep doctor to discuss this and see what he says. Either way, I need to be tested. There are just too many other symptoms that fall under the MS category. It can't be a coincidence. Believe me, it's not as if I WANT to be diagnosed with MS, but I just know there is something more to my symptoms that are beyond the Narcolepsy diagnosis/description.
Sorry for the long post, but I thought it might be helpful to someone else.
Thank you all for posting your stories to this forum.
It helps me so much to know I'm not alone and to be able to talk to someone.
~Lou~
This past summer, I had my husband take me to the emergency room because of extreme tingling in my legs face and left arm. I felt electric! - like my body parts had fallen asleep, but 10 times stronger! I was tested for a possible blood clot, since I was really concerned about the tense feeling in my neck at the time. It felt like a muscle cramp or blockage of some kind. I tested negative for blood clots, so I was released to go home.
The next day, I had another extreme "electric episode". It was so bad, I felt like my whole left side was plugged into an electrical socket. I went to the ER at a different hospital this time. The tingling in my face became so intense, it almost felt like it became paralyzed. I thought I was having a stroke! A neurologist came in and asked, "have you been diagnosed with Multiple Sclerosis or does anyone in your family have a history of MS?" I told them 'no', but I had been diagnosed with Narcolepsy and had a bulging disc in my lower back. (The pain I was having in my back that day and the day before seemed to be coming from my upper back and neck area. I didn't remember injuring my back or over-exerting myself.) He prescribed some muscle relaxers and ordered an MRI with/without contrast. The results came back negative for any other bulging or herniated discs. The doctor suspected I had just injured myself doing something strenuous or turning the wrong way.
I kept thing about the MS question he asked me in the ER, so I started researching it. I started to see a lot of MS/Narcolepsy similarities. When I saw this "electric sensation" listed as a symptom of MS, it really caught my attention. I'm going to set up an appointment with my sleep doctor to discuss this and see what he says. Either way, I need to be tested. There are just too many other symptoms that fall under the MS category. It can't be a coincidence. Believe me, it's not as if I WANT to be diagnosed with MS, but I just know there is something more to my symptoms that are beyond the Narcolepsy diagnosis/description.
Sorry for the long post, but I thought it might be helpful to someone else.
Thank you all for posting your stories to this forum.
It helps me so much to know I'm not alone and to be able to talk to someone.
~Lou~
#12
corey91386
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Posted 27 January 2012 - 01:20 PM
I was reading your post and was wondering if you got a diagnosis of MS or not. I have been diagnosed with Narcolepsy as well but have been having some weird side effects aswell. I have really fatigued or weak limbs, constant uncomfortableness in my head and neck, and I also have muscle twitches from time to time, not very often though. I know being tired can do some crazy stuff to the body but I am messed up all day every day. I am spaced out and dizzy from time to time.This is amazing! I'm so glad this topic is out here! I was diagnosed with Narcolepsy with Cataplexy in July of 2010. I have discussed other symptoms and concerns with my doctor, but they were never really given too much attention. I assumed they must be separate issues, for example, almost constant buzzing (ringing) in my head, shooting pains in my back, numbness and tingling in my feet, slurred speech, forgetting or transposing written and spoken words, vision problems, concentration problems, etc.
This past summer, I had my husband take me to the emergency room because of extreme tingling in my legs face and left arm. I felt electric! - like my body parts had fallen asleep, but 10 times stronger! I was tested for a possible blood clot, since I was really concerned about the tense feeling in my neck at the time. It felt like a muscle cramp or blockage of some kind. I tested negative for blood clots, so I was released to go home.
The next day, I had another extreme "electric episode". It was so bad, I felt like my whole left side was plugged into an electrical socket. I went to the ER at a different hospital this time. The tingling in my face became so intense, it almost felt like it became paralyzed. I thought I was having a stroke! A neurologist came in and asked, "have you been diagnosed with Multiple Sclerosis or does anyone in your family have a history of MS?" I told them 'no', but I had been diagnosed with Narcolepsy and had a bulging disc in my lower back. (The pain I was having in my back that day and the day before seemed to be coming from my upper back and neck area. I didn't remember injuring my back or over-exerting myself.) He prescribed some muscle relaxers and ordered an MRI with/without contrast. The results came back negative for any other bulging or herniated discs. The doctor suspected I had just injured myself doing something strenuous or turning the wrong way.
I kept thing about the MS question he asked me in the ER, so I started researching it. I started to see a lot of MS/Narcolepsy similarities. When I saw this "electric sensation" listed as a symptom of MS, it really caught my attention. I'm going to set up an appointment with my sleep doctor to discuss this and see what he says. Either way, I need to be tested. There are just too many other symptoms that fall under the MS category. It can't be a coincidence. Believe me, it's not as if I WANT to be diagnosed with MS, but I just know there is something more to my symptoms that are beyond the Narcolepsy diagnosis/description.
Sorry for the long post, but I thought it might be helpful to someone else.
Thank you all for posting your stories to this forum.
It helps me so much to know I'm not alone and to be able to talk to someone.
~Lou~
#13
Heidi L
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- Members
- 51 posts
Member
- Gender:Not Telling
- Location:Seattle WA
- Interests:Narcolepsy Research. I have now been in remission for over five years and am going to make sure all of you will be too.
Posted 27 January 2012 - 05:59 PM
Looks like we have a couple serious researchers out there.
Please visit my website for the known research on orexin and narcolepsy.
I also have some speculation on MS.
They do have symptoms in common and seem to occasionally occur in the same people, but the processes are different.
Narcolepsy is associated with gluten intolerance and strep infection.
MS is associated with Epstein Barr Virus and gluten intolerance.
here, new study:
Research Demonstrating Link Between Virus and MS Could Point the Way to Treatment and Prevention
Please visit my website for the known research on orexin and narcolepsy.
I also have some speculation on MS.
They do have symptoms in common and seem to occasionally occur in the same people, but the processes are different.
Narcolepsy is associated with gluten intolerance and strep infection.
MS is associated with Epstein Barr Virus and gluten intolerance.
here, new study:
Research Demonstrating Link Between Virus and MS Could Point the Way to Treatment and Prevention
#14
3:33AM
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- Members
- 6 posts
Member
- Gender:Female
- Location:Ohio
Posted 04 June 2012 - 09:10 PM
Sorry it has taken me this long to post a response. I had an MRI done, and thankfully, I don't have MS. I may have a Vitamin B deficiency, also known as Pernicious Anemia. I was previously diagnosed with Iron-Deficiency Anemia, which I have probably had for years! I remember trying to donate blood for several years and my iron was always too low. Everyone told me it was probably due to my period being around the same time or I didn't eat foods high enough in iron. I wasn't diagnosed with the iron deficiency until I went to my sleep doctor, who also diagnosed me with Narcolepsy with Cataplexy.
Anyway, back to the Vitamin B deficiency. If you read about it, it's amazing how similar the symptoms are to Narcolepsy and Multiple Sclerosis! Here's a link to check out: Pernicious Anemia
I have a follow up appointment soon with the neurologist who ordered my MRI to check for MS and blood work to check for this vitamin deficiency. I'll let you all know how it turns out. It makes me wonder...if I have his type of anemia, do I really have narcolepsy at all?...or is THIS the cause of all of my problems?
Anyway, back to the Vitamin B deficiency. If you read about it, it's amazing how similar the symptoms are to Narcolepsy and Multiple Sclerosis! Here's a link to check out: Pernicious Anemia
I have a follow up appointment soon with the neurologist who ordered my MRI to check for MS and blood work to check for this vitamin deficiency. I'll let you all know how it turns out. It makes me wonder...if I have his type of anemia, do I really have narcolepsy at all?...or is THIS the cause of all of my problems?
