Lesions were a surprise, can colon issues be an MS symptom?

[MomOf4Kids2Dogs]

I have been in the care of a neurologist for about 7 years for severe migraines but had never had an MRI. Last week, I learned through an MRI intended to confirm osteoarthritis in my neck (which was thought to be making my migraines worse) that I had a C4 lesion. Two days later an MRI with contrast showed a cluster of bright lesions on my brain in an early Dawson Finger pattern that I have read can be characteristic of MS. I was told that demyelinating disease had been confirmed by the MRI and that I should do a spinal tap to narrow it down to MS.

I didn't feel I had any symptoms of MS. I have had severe migraines since infancy, circulatory issues in my hands all my life, and diverticulitis since my late 20's (I am now 48) that abscessed last year. Maybe I feel a little tired but I was in the hospital for a couple months at this time last year for a temporary colostomy so fatigue didn't seem surprising. I have lead a healthy lifestyle since learning about my colon issues -- exercise, proper weight, best diet my colon could tolerate, acupuncture, chiropractic care, etc. My migraines have been a little worse lately but that's not unexpected with menopause.

Has anyone been surprised when told about lesions? That is, I was not so much surprised to be told that I had an autoimmune issue (my mother has RA), or that there is some larger issue than just the colon, but I always thought that MS symptoms would be evident with lesions. Or is there a link between severe colon/digestive issues (I also have reflux) and MS? My doc said that my years of pregnancy may have served as a protective veil. I am new to this forum today and have not found any information about a colon link. I am just learning the abbreviations so I may need help understanding what I read.

Also any advice about whether to consider myself diagnosed with MS if I have lesions but not typical symptoms? My motor functions and reflexes all seemed normal. Thank you.

[lyndacarol]

I have been in the care of a neurologist for about 7 years for severe migraines but had never had an MRI. Last week, I learned through an MRI intended to confirm osteoarthritis in my neck (which was thought to be making my migraines worse) that I had a C4 lesion. Two days later an MRI with contrast showed a cluster of bright lesions on my brain in an early Dawson Finger pattern that I have read can be characteristic of MS. I was told that demyelinating disease had been confirmed by the MRI and that I should do a spinal tap to narrow it down to MS.

I didn't feel I had any symptoms of MS. I have had severe migraines since infancy, circulatory issues in my hands all my life, and diverticulitis since my late 20's (I am now 48) that abscessed last year. Maybe I feel a little tired but I was in the hospital for a couple months at this time last year for a temporary colostomy so fatigue didn't seem surprising. I have lead a healthy lifestyle since learning about my colon issues -- exercise, proper weight, best diet my colon could tolerate, acupuncture, chiropractic care, etc. My migraines have been a little worse lately but that's not unexpected with menopause.

Has anyone been surprised when told about lesions? That is, I was not so much surprised to be told that I had an autoimmune issue (my mother has RA), or that there is some larger issue than just the colon, but I always thought that MS symptoms would be evident with lesions. Or is there a link between severe colon/digestive issues (I also have reflux) and MS? My doc said that my years of pregnancy may have served as a protective veil. I am new to this forum today and have not found any information about a colon link. I am just learning the abbreviations so I may need help understanding what I read.

Also any advice about whether to consider myself diagnosed with MS if I have lesions but not typical symptoms? My motor functions and reflexes all seemed normal. Thank you.

Welcome to ThisIsMS, MomOf4Kids2Dogs.

I am unclear about whether you have definitely been diagnosed with MS, which is a diagnosis of exclusion. It is made after other more likely possibilities have been ruled out first. There is no test or symptom specific to MS; in fact, there are people with MS symptoms and diagnosis who do not have lesions at all. The symptoms of MS are common to many other conditions, such as migraines, B12 deficiency, gluten sensitivity, and others.

You mention "circulatory issues in my hands" which I interpret to mean cold, numb, or tingling hands. This is peripheral neuropathy and the University of Chicago recommends the following investigation:

http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Note that the list begins with screening for a B12 deficiency (neurological lesions can be a symptom of this, as can migraines, GI problems, etc.). Has your neurologist or GP ruled out a possible B12 deficiency? If a spinal tap is done, B12 levels can be measured in the cerebral spinal fluid (CSF). Any person at any age can develop a deficiency.

Gluten sensitivity (even in the extreme form of celiac disease) can manifest with the symptoms you described. In fact, there is an atypical form of gluten sensitivity that does not have any of the digestive problems one would expect.

12/2/2013 Dr. Amy Myers, M.D., & gluten sensitivity:
http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases

Recent study showed that 56% of people with migraines had gluten sensitivity; gluten-free diet resolved the migraine problem.

2/18/14 Dr. Amy Myers, M.D., & 5 signs of gluten sensitivity (weight gain; irregular bowels; joint pain; skin rash, a.k.a. chicken skin or keratosis pilaris; other food sensitivities - dairy, corn, soy):
http://www.doctoroz.com/episode/5-hidde ... y#comments

I think there needs to be more investigation before you settle on the diagnosis of MS. To answer your question, "is there a link between severe colon/digestive issues and MS?" – It is possible. Bowel/bladder issues are common to many people with MS; but not necessary to a diagnosis.

[MomOf4Kids2Dogs]

I'm sorry I didn't know what information to provide. I have had very recent complete blood work since having my sigmoid colon removed. I remain at normal levels for B12, D, glucose, organ function etc. I am negative for parasites and disease markers. I have had about every digestive test in the book (two endoscopies with biopsies to check for celiac, numerous colonoscopies with biopsies, tests for dairy intolerance and H.Pylori) which were negative. The doctors were always surprised that my colon was getting so much worse and my age was relatively young. I never had a good explanation for all my GI issues.

My circulatory issues were always described as Reynauds by my doctors. Since childhood my fingers would get red then purple then white with temperature changes especially between seasons. However the issues with my fingers have been worse in the past few years, they would get numb after turning white.

My neurologist said that the spinal tap this week would either confirm MS or launch additional blood work for metal poisoning or Lyme, so I thought the spinal tap would give me the answer. But when I was reading this forum I learned that there is no definitive test to confirm MS. My biggest confusion is that I have had symptoms for many years that could be considered less common symptoms of MS (migraines and circulatory in fingers), but that just seemed to be how I was wired, and I did not go into the MRI expecting anything other than age-typical arthritis.

So how do I know if I am diagnosed with MS? On this forum it seems like many people feel they may have symptoms but have not been given a diagnosis of MS which they suspect is what they have. My neurologist has said that if the spinal tap this week confirms the MRI results then they will call it MS. So I feel like maybe I am about to be given an MS diagnosis but am not sure that I am having symptoms, unless the colon and Reynauds and migraines count. I think I have checked all the items on the list above. I am not sure if there is a test for partial gluten sensitivity so I guess that is a possibility but there is very little gluten in my diet. I am reluctant to accept an MS diagnosis without feeling like I have symptoms. Hope this makes sense. If they tell me C4 and brain lesions that are not tumors mean I have MS, even without typical symptoms, should I believe them? Is it possible that I discovered lesions by lucky accident before they wreaked havoc? Did my healthy lifestyle post diverticulitis diagnosis mask something?

Thank you.

[NHE]

My neurologist said that the spinal tap this week would either confirm MS or launch additional blood work for metal poisoning or Lyme

Lyme disease should probably be tested independent of any other tests. It's one of the conditions which can mimic MS and needs to be excluded.

[euphoniaa]

I'm sorry I didn't know what information to provide. I have had very recent complete blood work since having my sigmoid colon removed. I remain at normal levels for B12, D, glucose, organ function etc. I am negative for parasites and disease markers.

My circulatory issues were always described as Reynauds by my doctors. Since childhood my fingers would get red then purple then white with temperature changes especially between seasons. However the issues with my fingers have been worse in the past few years, they would get numb after turning white.

My neurologist said that the spinal tap this week would either confirm MS or launch additional blood work for metal poisoning or Lyme, so I thought the spinal tap would give me the answer.

So how do I know if I am diagnosed with MS?

If they tell me C4 and brain lesions that are not tumors mean I have MS, even without typical symptoms, should I believe them?

Is it possible that I discovered lesions by lucky accident before they wreaked havoc?

Did my healthy lifestyle post diverticulitis diagnosis mask something?

Thank you.

Hi Mom and welcome! I'm sorry you're dealing with so many serious medical issues & now MS as well! I wrote you quite a long note last night, which disappeared somehow when I accidentally hit the wrong button. So, I’ll try to address your handful of specific questions again.

I also have to note that no, you are NOT required to produce all your lab data to post on here!!! Although some of our more zealous posters will immediately address their favorite theories and request that of you… Listen to your doctors instead. We here at TiMS are amateurs. With brain damage, no less.

So, yes, you CAN be diagnosed with MS without showing obvious symptoms – especially when you have many other medical maladies like you (and I) do. Many of the rest of us here have additional problems along with MS, so no matter which condition you ask about, someone here will have that same issue – even if it’s unlikely to have anything to do with their MS.

I’m going to make a few notes to address your individual questions here:

***I was also given an ‘instant diagnosis’ of MS after my first MRIs showed my brain was jammed full of MS specific lesions – periventricular ones, Dawson’s Fingers, black holes, etc., etc., that must have been accumulating for at least 30 years. At the time, I was feeling healthier than I had in many, many years, and my only complaint was a slight tremor in one finger. Brain & spinal lesions often show very unique differences due to their causes, and those can be recognized by the experts.

The physiatrist that diagnosed me (not a neuro) had noticed minor issues in my reflexes, etc., and suspected Central Nervous System involvement -- after he had already discovered (thru EMGs) that I likely have HNPP like my dad, a HEREDITARY peripheral neuropathy where my peripheral nerves are demyelinating just like my central nerves (brain & spinal cord). He also notes that my legs show "multiple pinched nerves."

***And yes, your “healthy lifestyle” over the years could have made a big difference – just like mine did.

***How to get diagnosed? Although MS is supposed to be a ‘diagnosis of exclusion,’ if you immediately meet the main criteria they check, it can also be fast. I got mine by my very first MRIs (the most important test), ordered by a physiatrist, not a neuro, and then it was confirmed by the spinal tap, and the “evoked potentials” eyes, & legs. I passed ALL the tests immediately for MS. When you see so many new posters here waiting for a diagnosis, it’s often because they have weird symptoms but their MRIs show no lesions, or they haven’t even been tested yet. In your case, your MRIs show very specific MS-type lesions. Like mine did.

***I would NEVER accept an MS diagnosis that was made from my symptoms only!

***MS brain lesions & their location do not 'necessarily' correlate with specific symptoms, relapses, progression, or anything else since the brain is so plastic it can work around them. Spinal lesions are often more disabling, however, due to the narrow space they're in.

***Yes, I, too, have an abundance of brain lesions that were “discovered by lucky accident.” Your spinal lesion is yet another big clue. I don’t have spinal lesions, although my neuro points out that my spinal MRIs (Cervical, Thoracic, & Lumbar) show that ALL my current leg problems -- that are multiplying as I age -- could be due to a herniated disc and other degenerative issues ---NOT from MS.

***Raynauds syndrome is NOT affiliated with MS and is common in the general population. Also, it is NOT a peripheral neuropathy issue, but a circulatory problem. Mine is a recognized side effect of Tenormin that I take for my high blood pressure, and fluctuates when my dosage is raised or lowered.

***Your ”colon & Raynaud’s & migraines” are not specific MS symptoms, although I’m sure having MS doesn’t help and may make almost anything feel a bit worse. Some day in the future scientists may add some symptoms to the MS list, but in the meantime, they don’t really know for sure what MS is anyway!!

***Although it’s good to monitor your vitamin levels, etc., I always urge caution about bombarding yourself with vitamins & supplements, which are NOT without their own side effects. I’ve had worse problems from vitamins & supplements than anything MS has done to me. Also, the labwork can be expensive; the bloodwork I got early this year cost me almost $1,000.00 since I hadn’t met my deductible. I'll be paying it off for months...

***Heads Up: None of us are true experts here, but many have a singular focus of interest and will chime in on their pet theories. Theories. Theories.

***I told my story here at this link, and added some of my MRIs: http://www.thisisms.com/forum/general-d ... 16335.html
ALL my docs agree with me that there’s no way to identify which symptom goes with which of my diagnoses. And that it doesn’t much matter anyway. My neuro and I usually have to explain HNPP to a visiting neuro student at my visits, since I go to a major teaching hospital. HNPP can manifest with almost the same symptoms of MS.

So, feel free to continue asking questions. Just remember that we’re not really experts, and that you may get varying degrees of information that you’ll need to weigh against your other research.

Good luck to you!

[MomOf4Kids2Dogs]

Thanks euphoniaa, you have no idea how much relief I feel hearing that you were given a quick diagnosis. I was in tears yesterday because I hadn't heard of even one person who got a fast diagnosis without years of searching. Just to know one person like you had a possibly similar experience makes me feel less alone. It's weird but I think of myself as healthy, although on paper there is a lot going on that I need to manage so maybe I do fit the profile of many of the nice people on this site. Thanks so much. I will read your story. I see that you don't take meds and I want to find out more about that because I accept meds very rarely.

NHE, thanks also for your advice, my region has many cases of Lyme, one son had it in middle school, my dog has had it -- I am watchful but of course I have been bit by deer ticks like most of my neighbors. Although the regular blood work has come back negative for Lyme, I guess there is something in the spinal tap that will look deeper? My biggest worry was about accepting an MS diagnosis that seemed so out of nowhere, so surprising, then accepting the IV steroids which could shut down my immune system when Lyme could be there.

I guess maybe if I have MS and have a textbook pattern of lesions, I was lucky to have been in the right place at the right time to find out.

[AAA7353]

I have been in the care of a neurologist for about 7 years for severe migraines but had never had an MRI. Last week, I learned through an MRI intended to confirm osteoarthritis in my neck (which was thought to be making my migraines worse) that I had a C4 lesion. Two days later an MRI with contrast showed a cluster of bright lesions on my brain in an early Dawson Finger pattern that I have read can be characteristic of MS. I was told that demyelinating disease had been confirmed by the MRI and that I should do a spinal tap to narrow it down to MS.

I didn't feel I had any symptoms of MS. I have had severe migraines since infancy, circulatory issues in my hands all my life, and diverticulitis since my late 20's (I am now 48) that abscessed last year. Maybe I feel a little tired but I was in the hospital for a couple months at this time last year for a temporary colostomy so fatigue didn't seem surprising. I have lead a healthy lifestyle since learning about my colon issues -- exercise, proper weight, best diet my colon could tolerate, acupuncture, chiropractic care, etc. My migraines have been a little worse lately but that's not unexpected with menopause.

Has anyone been surprised when told about lesions? That is, I was not so much surprised to be told that I had an autoimmune issue (my mother has RA), or that there is some larger issue than just the colon, but I always thought that MS symptoms would be evident with lesions. Or is there a link between severe colon/digestive issues (I also have reflux) and MS? My doc said that my years of pregnancy may have served as a protective veil. I am new to this forum today and have not found any information about a colon link. I am just learning the abbreviations so I may need help understanding what I read.

Also any advice about whether to consider myself diagnosed with MS if I have lesions but not typical symptoms? My motor functions and reflexes all seemed normal. Thank you.

I'm so sorry for all your health problems. I have similar issues without the migraines. I have diverticulosis too. My mom had it. I've been hospitalized and got away with the surgery as I insisted on antibiotic treatment due to my MS. My MS has been "stable" as my doctor says. I am 61 now and was diagnosed at 38. I have now developed problems in my feet. I've had an arthritic spine since my thirties from my neck all the way down to the lumbar section. It was so bad in my thirties and a disk ruptured. I was like a cripple. It fused and I am doing well with that. As for you, get your diagnosis and get on a Copaxone inject. It's not bad. I'm on it for 12 years and it has definitely slowed down the MS. I wish I had this medication in 1992 when I was diagnosed but there were no meds for MS at that time. When Betaseron was approved then Copaxone my neurologist at that time said he didn't want to make a guinea pig out of me. Not smart. I do suffer from damage before the Copaxone therapy. Now as far as I know for the past 12 years there's been no new lesions on my brain or spinal cord. Thank God.
Get your dx and good luck. Get on a disease modifying drug. I like the non-interferons like Copaxone and I do not like the oral drugs as they have too many side effects. The Copaxone for me is a small nuisance as it has worked well for me. Once again, good luck to you. Let us know how you're doing.

[cheerleader]

You are not alone, Mom.
My husband was dx with MS right away after one MRI....lots (over 20) of enhancing and older lesions. He's doing great now, almost 8 years later---but diagnosis was a scary time. As fas as theories, many of the old timers on here have found stability thru one means or another. You'll find your way.

I'd like to encourage you to look at nutrition, exercise and the vascular connection to MS. Sounds like you have the vascular and circulatory issues to warrent following a heart healthy lifestyle? Might help.
Also--the protein zonulin, which is found in gluten containing products, is known to disrupt blood vessels throughout the body. Maybe consider removing all gluten. Some compelling research coming from Dr. Fasano at the Un. of Maryland linking a leaky gut to a leaky blood brain barrier, via endothelial permeability. So, yes--some researchers consider this a link between digestion and the brain.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2570116/
But lots of things can disrupt the endothelium...not just zonulin. This is my family's theory. Worked well for husband...he's still jogging, working full days. http://ccsvi.org/index.php/helping-myse ... ial-health

Hang in there! Take it a day at a time--keep learning, and take care of yourself.
all best,
cheer

[Celeste485]

The answer is yes, the colon can be the first thing to show symptoms.

[euphoniaa]

The answer is yes, the colon can be the first thing to show symptoms.

Okay, Celeste, is your answer above included in your disclaimer on another thread, where you stated:

"Before I proceed, I would like to make a disclaimer that everything I write on this board are my personal opinions and I am not a healthcare professional. These are just my opinions and my opinions only. If you decide to pursue anything you are doing it at your own risk"

.

I just wanted to clarify your statement.

[MomOf4Kids2Dogs]

Thanks you guys, I am getting a feel for how this works, and I really appreciate all the opinions. I appreciate all the different points of view.

AAA7353 -- I appreciate your comments about meds because my doc was saying that I could slow down the cognitive issues by starting early intervention as soon as my diagnosis is confirmed. I am lucky to be in a time when there are so many more options. Thanks for the encouragement.

cheerleader -- one of the joys of my life is running so it really makes me happy to know that your husband is still out there jogging because I hope to be doing 5K's with my grandkids some day. I was a vegan until my hospitalization last year, now I eat seafood again, but there is still gluten in my diet so I need to think about steering myself more toward the ancient grains, etc. Any other suggestions about the vascular connection to MS are most appreciated, and especially I do wish there were a way to go back to being vegan -- it'd been over 30 years since I've had most meats and I don't know if I can handle much more than seafood.

I appreciate your comment, Celeste.

[mmpetunia]

I was in tears yesterday because I hadn't heard of even one person who got a fast diagnosis without years of searching. Just to know one person like you had a possibly similar experience makes me feel less alone...My biggest worry was about accepting an MS diagnosis that seemed so out of nowhere, so surprising

I too received a very surprising Dx of MS about 3 years ago. I know that there are many people who are feeling so badly they wish for a Dx and I don't want to minimize that struggle at all. But to think that you are completely (mostly) fine and then be told that you are in fact chronically, incurably ill. it's devastating! it's so, so incredibly hard to go through that! Dx was absolutely one of my all-time most traumatic moments in my life. and it has taken a very long time and a lot of support to accept and move past it.

The way I see it you have 2 major silver linings here: 1) you aren't relegated to an agonizing search for Dx; 2) historically and presently you are doing very well! Even if it's MS you have no reason to think that you will not do well in the future.

big hugs.

[MomOf4Kids2Dogs]

Thank you mmpetunia for that story, I am still processing the shock I got last week while I wait for spinal tap results to most likely confirm the two MRI session results. The spinal tap was 10/30 so hoping I will get news soon. I am also waiting for the blood patch to finish settling my spinal headache, so far testing is no walk in the park and all very surprising. I appreciate hearing another story like mine. I worry I am going to start overreacting to pins and needles I'd always chalked up to poor circulation.

[MomOf4Kids2Dogs]

OK to close out this thread, I have been given a diagnosis of MS this morning based on the results of the spinal tap. I have also been asked to make sure that I don't have lupus because I had several miscarriages in my 30's and apparently those could have been a lupus symptom, but they are pretty confident that I have MS based on results of the two MRI's and spinal fluid so I go tomorrow to learn about treatment with IV steroids. I'm sure I will have more questions for the forum at that point, thanks again for all the advice.

[cheerleader]

I'm sorry the spinal tap was positive, Mom. Hang in there.
One more thing to check before "closing it down"
Recurrent miscarriages are linked to a common MS differential diagnosis, antiphospholipid antibody syndrome (also known as Hughes Disease)--which we've only known about since 1983, so it gets missed a lot. It's also linked to migraine and circulatory issues. http://www.ncbi.nlm.nih.gov/pubmed/10670410

Here's an interesting article on the discovery of this disease, by Dr. Hughes
http://www.telegraph.co.uk/news/1525231 ... of-MS.html

Multiple sclerosis: In a recent patient survey, 32% of aPL-positive patients in our clinic had had a previous possible diagnosis of MS considered.4 This finding raises important issues. Firstly, differential diagnosis can be difficult. Secondly, we have seen APS patients in whom borderline aPL readings were dismissed as epiphenomena and yet in whom anticoagulation resulted in sustained clinical improvement.

http://www.the-rheumatologist.org/detai ... Radar.html

This is a different test than the Lupus ANA. Make sure your docs rule this out, especially before beginning any MS disease modifying drugs.
It's an easy blood test, can be done by a rheumatologist. We did it for my husband, but he was negative.
https://www.rheumatology.org/Practice/C ... _Syndrome/
http://www.mayoclinic.org/diseases-cond ... n-20028805

and the most common treatment is a daily, low dose aspirin--which, if your doctor agrees, you can try on your own and see if there is any improvement.
all best,
cheer