Aa
MS?
Hi Quixotic1!
I have been reading through alot of your posts lately, as I have plaguing questions that I am trying to find some answers to :) I will try not to overwhelm you with information, so here I go.
Birthday: 2/21/1981
Family History:
- Sister has Neurofibromotosis NF-1 (Tumor on her optic nerve) since she was 3. She is now 24 years old. It is not growing.
- Great Aunt has Epilepsy, and re-ocurring Bell's Palsy
- Mom's First Cousin has Progressive MS
Up until August 2007, I was fairly healthy. I had successful jaw surgery in 2005 (No Side Effects). I had a torn esophogus lining in 2006, which was resolved with a few weeks of nexium. I had unknown migraine, chronic headaches and still have them and sometimes wake up with them in the morning.
In August of 2007, my wife and I just returned from vacation from Seattle, WA. I was starting an masters level accounting course in my first year of my masters program. I have a full time job, am married, have a dog, but do not have any children. At the time, I was under alot of stress.
In mid august, 1-2 weeks after coming back home from vacation, I began to experience revolving diarehha / constipation (Uncontrollable). I had SEVERE back pain, to the point I could not sit in my chair. I also felt extremely fatigued constantly, 24 hours a day, 7 days a week. Sleeping did not help me.
My doctor ran multiple blood tests, urinalysis tests, verified i did not have HIV, STDs, etc. They determined I did not have gluten allergies, or any abnormalities within my digestive system.
My diarehha finally subsided, and it turned into chronic constipation, although i do not think i would clasify it as constipation. I would clasify it more as the innability to have a normal bowel movement. I would eventually go if I waited long enough, but it was almost like my muscle(s) down there would not release, and this is one of my problems up until today.
My primary care referred me to a GI specialist. The GI doctor performed a sigmoidnoscopy (sp?), and an upper endoscopy. Both of those tests were negative for any digestive or stomach problems.
They diagnosed me with IBS - Because they did not have an answer for me :) They told me I am under alot of stress and I need to learn how to relax, and not work so much. I went through college, worked a full time job, and i never had any health problems. So I was a little clueless to why I had IBS, but I just went with the flow.
From April - June 30 of this year my body was in the same routine. Every morning I get up I had a lot of gas because my body could not go to the bathroom normally the night before, so it was just a continuing pattern.
On the 4th of July, my wife's family had a cookout (We live in the upper midwest), and it was extremely hot out (in the 90's). We were playing football outside, running around, and sitting out in the sun. I got a HORRIFIC headache that night, and the next day my body went into shock. All of a sudden my muscles started twitching by themselves, i started feeling pins and needles in my feet, legs, thighs, back, hands. My back started to ache heavily and I was EXTREMELY FATIGUED. I had (and still have) shooting pains in my shoulders, down my back from my spine, and in my feet. I had to take off work the following week for 3 days because my body did not recover to the point where i could walk for 72 hours.
The following weekend, I went out jogging in our development, and it was hot out that day as well. 24 hours later I felt exactly as I did on the 4th of July.
Also, i would like to note in mid july my face went completely numb for 1 hour, and my lip started bouncing up and down like Elvis.
Since the 4th of July, the muscle twitching, pins and needles, back pain, and my shooting and throbbing pain has not deteriorated at all. My feet and legs are constantly throbbing, and the pins and needles annoy me so much that it makes me scratch them when they happen to make them go away. Almost like a misquito is biting me.
My Neurologist ordered a cervical MRI and thoratic MRI and MRI of the brain w/and w/o contrast. The results were negative, normal.
My question: Does it seem plausible this is the beginning of MS given that I have lost control of my ability to go to the washroom properly? I am not constipated, and I am not under stress. Does the reaction to the heat and these new neurological symptoms over the past month and a half indicate any concern? Is it too early for lesions to show up on an MRI?
I am sorry I made this so long, I am trying to lay everything out best as I can.
Thank you for your help!!!!!!! :)
I have been reading through alot of your posts lately, as I have plaguing questions that I am trying to find some answers to :) I will try not to overwhelm you with information, so here I go.
Birthday: 2/21/1981
Family History:
- Sister has Neurofibromotosis NF-1 (Tumor on her optic nerve) since she was 3. She is now 24 years old. It is not growing.
- Great Aunt has Epilepsy, and re-ocurring Bell's Palsy
- Mom's First Cousin has Progressive MS
Up until August 2007, I was fairly healthy. I had successful jaw surgery in 2005 (No Side Effects). I had a torn esophogus lining in 2006, which was resolved with a few weeks of nexium. I had unknown migraine, chronic headaches and still have them and sometimes wake up with them in the morning.
In August of 2007, my wife and I just returned from vacation from Seattle, WA. I was starting an masters level accounting course in my first year of my masters program. I have a full time job, am married, have a dog, but do not have any children. At the time, I was under alot of stress.
In mid august, 1-2 weeks after coming back home from vacation, I began to experience revolving diarehha / constipation (Uncontrollable). I had SEVERE back pain, to the point I could not sit in my chair. I also felt extremely fatigued constantly, 24 hours a day, 7 days a week. Sleeping did not help me.
My doctor ran multiple blood tests, urinalysis tests, verified i did not have HIV, STDs, etc. They determined I did not have gluten allergies, or any abnormalities within my digestive system.
My diarehha finally subsided, and it turned into chronic constipation, although i do not think i would clasify it as constipation. I would clasify it more as the innability to have a normal bowel movement. I would eventually go if I waited long enough, but it was almost like my muscle(s) down there would not release, and this is one of my problems up until today.
My primary care referred me to a GI specialist. The GI doctor performed a sigmoidnoscopy (sp?), and an upper endoscopy. Both of those tests were negative for any digestive or stomach problems.
They diagnosed me with IBS - Because they did not have an answer for me :) They told me I am under alot of stress and I need to learn how to relax, and not work so much. I went through college, worked a full time job, and i never had any health problems. So I was a little clueless to why I had IBS, but I just went with the flow.
From April - June 30 of this year my body was in the same routine. Every morning I get up I had a lot of gas because my body could not go to the bathroom normally the night before, so it was just a continuing pattern.
On the 4th of July, my wife's family had a cookout (We live in the upper midwest), and it was extremely hot out (in the 90's). We were playing football outside, running around, and sitting out in the sun. I got a HORRIFIC headache that night, and the next day my body went into shock. All of a sudden my muscles started twitching by themselves, i started feeling pins and needles in my feet, legs, thighs, back, hands. My back started to ache heavily and I was EXTREMELY FATIGUED. I had (and still have) shooting pains in my shoulders, down my back from my spine, and in my feet. I had to take off work the following week for 3 days because my body did not recover to the point where i could walk for 72 hours.
The following weekend, I went out jogging in our development, and it was hot out that day as well. 24 hours later I felt exactly as I did on the 4th of July.
Also, i would like to note in mid july my face went completely numb for 1 hour, and my lip started bouncing up and down like Elvis.
Since the 4th of July, the muscle twitching, pins and needles, back pain, and my shooting and throbbing pain has not deteriorated at all. My feet and legs are constantly throbbing, and the pins and needles annoy me so much that it makes me scratch them when they happen to make them go away. Almost like a misquito is biting me.
My Neurologist ordered a cervical MRI and thoratic MRI and MRI of the brain w/and w/o contrast. The results were negative, normal.
My question: Does it seem plausible this is the beginning of MS given that I have lost control of my ability to go to the washroom properly? I am not constipated, and I am not under stress. Does the reaction to the heat and these new neurological symptoms over the past month and a half indicate any concern? Is it too early for lesions to show up on an MRI?
I am sorry I made this so long, I am trying to lay everything out best as I can.
Thank you for your help!!!!!!! :)
Hi, Welcome to a great place for information. Sounds like you'e been lurking and reading some. You seem to have already figured out who I am, so I'll dive into what I can say about your story.
The sudden bowel irritability sounds like you had some sort of bowel infection during your vacation. Did you camp at all? Did your doctors run any tests for bowel infection or parasites? There are several that can cause what you describe.
But, then it seems like you settled into what feels for you like the inability to empty your rectum properly. Do you feel like you have to go, but don't get the pressure to go? Or is it that you have the pressure inside, but can't push it out? Did the GI doctor measure the tone in the rectal muscle (it's a test called rectal manometry)? That would tell us if the rectal muscle is in spasm.
Okay, now I'll try to talk about what you told us in the context of MS. Could this be the presentation of MS? Yes, it could, but would be somewhat atypical. The fatigue and heat tolerance are not exclusive to MS, though they are very, very common in it. An the onset of severe problems after (what sounded like) an infection would be a common pattern. It sounds to me like you developed severe heat exhaustion on the 4th of July. This alone would account for the 3 days of severe debility. It would also account for the muscle twitching and abnormal sensations (pins and needles) all over. Trying to exercise again within the week just redid the whole thing.
I'm not saying that the whole episode couldn't be abnormal heat intolerance because of MS, but heat exhaustion would account for those symptoms. If the muscle twitching has continued, that is not at all uncommon. Once there is a little insult to the muscles all over (like from heat or a viral infection) the twitching (known as benign fasciculations) can continue for months.
I can't speak much to the very brief episode of your face being numb or your lip twitching. This is consistent with something like hyperventilation, but not much like MS. Because MS shows its symptoms due to actual nerve damage, the symptoms last much longer than an hour. In order to "qualify for MS" a symptom must last a minimum of 24 hours OR be repeatedly present in the same spot during a 24 hour period.
Now, since the two episodes in early July, you have had pain, throbbing, pins and needles, have been constant. What makes me think that this is not MS is that it is occurring in both legs, back and both feet. That suggests a diffuse problem, like an infection (for example Lyme disease) or a metabolic problem (like B12 deficiency) or a toxin or diffuse insult (like becoming severely overheated). MS more typically presents more asymmetrically, here and there.
Do you have any weakness in your legs? Can you climb stairs normally or continue to jog? Can you walk on your toes and on your heels?
Finally, you have a 4th degree relative with MS. That is a fairly distant relationship and would not increase your risk of MS dramatically. In fact the increase is so marginal, that when they study the genetics of MS and the risk of having a close relative with it, they stop at third degree relatives.
I'm not pleased with the sudden assessment of IBS. As you have noted, why would you all of a sudden develop all of these problems when you have handled stress well before?
With the negative MRIs your chance of having MS is lessened, but, IMO it does not go away. As was mentioned above, lesions can be missed in a variety of ways - the most important way being that they are too small to be picked up by the machine. I would ask your neurologist to see if there are ways to measure the pressures inside your rectum and at the sphincter muscle to see if they appear to be normal.
What kind of follow up did the neurologist suggest after seeing the normal MRIs?
Well, those are my preliminary thoughts and questions. I hope they help.
Quix
The sudden bowel irritability sounds like you had some sort of bowel infection during your vacation. Did you camp at all? Did your doctors run any tests for bowel infection or parasites? There are several that can cause what you describe.
But, then it seems like you settled into what feels for you like the inability to empty your rectum properly. Do you feel like you have to go, but don't get the pressure to go? Or is it that you have the pressure inside, but can't push it out? Did the GI doctor measure the tone in the rectal muscle (it's a test called rectal manometry)? That would tell us if the rectal muscle is in spasm.
Okay, now I'll try to talk about what you told us in the context of MS. Could this be the presentation of MS? Yes, it could, but would be somewhat atypical. The fatigue and heat tolerance are not exclusive to MS, though they are very, very common in it. An the onset of severe problems after (what sounded like) an infection would be a common pattern. It sounds to me like you developed severe heat exhaustion on the 4th of July. This alone would account for the 3 days of severe debility. It would also account for the muscle twitching and abnormal sensations (pins and needles) all over. Trying to exercise again within the week just redid the whole thing.
I'm not saying that the whole episode couldn't be abnormal heat intolerance because of MS, but heat exhaustion would account for those symptoms. If the muscle twitching has continued, that is not at all uncommon. Once there is a little insult to the muscles all over (like from heat or a viral infection) the twitching (known as benign fasciculations) can continue for months.
I can't speak much to the very brief episode of your face being numb or your lip twitching. This is consistent with something like hyperventilation, but not much like MS. Because MS shows its symptoms due to actual nerve damage, the symptoms last much longer than an hour. In order to "qualify for MS" a symptom must last a minimum of 24 hours OR be repeatedly present in the same spot during a 24 hour period.
Now, since the two episodes in early July, you have had pain, throbbing, pins and needles, have been constant. What makes me think that this is not MS is that it is occurring in both legs, back and both feet. That suggests a diffuse problem, like an infection (for example Lyme disease) or a metabolic problem (like B12 deficiency) or a toxin or diffuse insult (like becoming severely overheated). MS more typically presents more asymmetrically, here and there.
Do you have any weakness in your legs? Can you climb stairs normally or continue to jog? Can you walk on your toes and on your heels?
Finally, you have a 4th degree relative with MS. That is a fairly distant relationship and would not increase your risk of MS dramatically. In fact the increase is so marginal, that when they study the genetics of MS and the risk of having a close relative with it, they stop at third degree relatives.
I'm not pleased with the sudden assessment of IBS. As you have noted, why would you all of a sudden develop all of these problems when you have handled stress well before?
With the negative MRIs your chance of having MS is lessened, but, IMO it does not go away. As was mentioned above, lesions can be missed in a variety of ways - the most important way being that they are too small to be picked up by the machine. I would ask your neurologist to see if there are ways to measure the pressures inside your rectum and at the sphincter muscle to see if they appear to be normal.
What kind of follow up did the neurologist suggest after seeing the normal MRIs?
Well, those are my preliminary thoughts and questions. I hope they help.
Quix
I wanted to echo what Shelly said. Bowel problems are common in MS. For me, it alternates between constipation and bowel urgency. I have been diagnosed with MS, but the lesions that show up on my MRI are not where you would typically find lesions that cause these problems which would be on the spinal cord or brain stem. However, my doctor suspects that I probably do have brain stem lesions.
He told me that he's had patients in the past with normal MRI's with MS-like symptoms and on autopsy after death had brain lesions. There is such a thing as as "invisible lesions". See also the Health Pages in the top right corner. Quix mentions this in several pages. One that may answer your question right away is "How can a person with MS have a negative MRI?"
What strength MRI machine was it? Quix mentions that the older 1.5T machines are as good as 3T machines at picking up lesions (25% less good she mentions). I would suspect that early on in the disease that the lesions may be smaller and harder to detect.
But smaller doesn't mean that it's less serious. My sister, who has MS also, has many small lesions on her brain stem (which by the way didn't show up at all when she saw a neurologist the first time). She is not able to walk because of drop foot (which hopefully changes soon). Her condition, because of where the lesions are, is worse than mine because she can't walk. My lesions are big and very typical looking for MS, but I'm walking.
Often times the road to diagnosis for MSers is a long and twisting road. You found the right forum for support, first-hand experiences with similar problems, and just great friendship. I'm glad that you found the forum and hope to be hearing from you again.
Deb
He told me that he's had patients in the past with normal MRI's with MS-like symptoms and on autopsy after death had brain lesions. There is such a thing as as "invisible lesions". See also the Health Pages in the top right corner. Quix mentions this in several pages. One that may answer your question right away is "How can a person with MS have a negative MRI?"
What strength MRI machine was it? Quix mentions that the older 1.5T machines are as good as 3T machines at picking up lesions (25% less good she mentions). I would suspect that early on in the disease that the lesions may be smaller and harder to detect.
But smaller doesn't mean that it's less serious. My sister, who has MS also, has many small lesions on her brain stem (which by the way didn't show up at all when she saw a neurologist the first time). She is not able to walk because of drop foot (which hopefully changes soon). Her condition, because of where the lesions are, is worse than mine because she can't walk. My lesions are big and very typical looking for MS, but I'm walking.
Often times the road to diagnosis for MSers is a long and twisting road. You found the right forum for support, first-hand experiences with similar problems, and just great friendship. I'm glad that you found the forum and hope to be hearing from you again.
Deb
Hi John,
I'm not Quix, and hope you don't mind me commenting. We have so many folks here that I'm sure would like to help out. I'm Shelly, and was dx'd with MS last year. I have had a lot of bowel problems but primarily spasms int that area that seemed to cause constipation.
What I learned is that with MS, when there is demyelination in the brain or spinal cord it can affect nerve transmission which we all need and count on to "go" in good order. Also, MSers due to fatigue, spasticity and what have you are not as physically active, and this too can affect the bowel. Sometimes it's just a variety of reasons, but our sphincter (gosh I hate that word) is under the control of our spinal cord and when there is damage in there things do not often occur as they should.
Sorry this isn't an extremely technical answer, but wanted to say hello, and get you started.
Thanks for coming our way, hope you get feeling better soon.
-Shelly
I'm not Quix, and hope you don't mind me commenting. We have so many folks here that I'm sure would like to help out. I'm Shelly, and was dx'd with MS last year. I have had a lot of bowel problems but primarily spasms int that area that seemed to cause constipation.
What I learned is that with MS, when there is demyelination in the brain or spinal cord it can affect nerve transmission which we all need and count on to "go" in good order. Also, MSers due to fatigue, spasticity and what have you are not as physically active, and this too can affect the bowel. Sometimes it's just a variety of reasons, but our sphincter (gosh I hate that word) is under the control of our spinal cord and when there is damage in there things do not often occur as they should.
Sorry this isn't an extremely technical answer, but wanted to say hello, and get you started.
Thanks for coming our way, hope you get feeling better soon.
-Shelly
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