Help with MRI results

[heathertrent]

Good morning. Can someone please help me with my MRI results? Since it says they are nonspecific, does that mean it is not MS? Thank you for your help.

FINDINGS: The ventricles are of normal size and configuration.
There is no acute hemorrhage, mass, or mass effect. There is no
evidence of acute ischemia. There are a few foci of abnormal
hyperintense signal in the periventricular white matter
demonstrated on the T2-weighted and FLAIR sequences. The most
prominent lesions are located on the right side and likely
correspond to the previous reported findings. These are
nonspecific.

[ElliotB]

What does your Doctor say?

[heathertrent]

He said lesions are normal, everyone has them. He said they show to some degree in pretty much every MRI. He also told my friend he was healthy but he switched to a different neurologist who found significant brain injuries.

[ElliotB]

Did you see a neurologist? If so, was kind of neuro is he? (FWIW, my first neurologist mis-diagnosed me!)

[heathertrent]

Did you see a neurologist? If so, was kind of neuro is he? (FWIW, my first neurologist mis-diagnosed me!)

It was a general neurologist. He didn't seem to be sure of much when we were talking. He kept saying things like "I really don't know what to make of this, what do you think?" and "I'm not sure which medication, if any, would mist benefit you. What do you think?" I felt like he was clueless to be honest. He said I probably just gave fibromyalgia.

[lyndacarol]

He said lesions are normal, everyone has them. He said they show to some degree in pretty much every MRI. He also told my friend he was healthy but he switched to a different neurologist who found significant brain injuries.

Welcome to ThisIsMS, Heather.

I don't think I would use the word "normal" , but your neurologist is correct in saying that brain lesions are nonspecific (in other words, they can be symptoms of many conditions, such as migraines, vitamin B12 deficiency, and LOTS of others). MS is the last possibility to be considered after the others have been ruled out. There is no definitive test for MS.

It is not uncommon for people with MS symptoms to have clear MRIs (showing NO lesions). On the other hand, people who have had no MS symptoms during their lifetime have been found (upon autopsy for other reasons) to have many brain lesions.

Since nutrient deficiencies manifest with MS-like, neurological symptoms, I urge you to start your investigation of symptoms by asking your GP, neurologist, or any doctor to order a vitamin D test (a.k.a. 25-hydroxy D3 test). Testing should also be done to rule out a possible vitamin B12 deficiency. Then, a magnesium test; a zinc test. Also, request your own copy of any test results – it is important to have the actual test number results.

[ElliotB]

You may want to seek out the advise of a specialist - since you seem to suspect MS, you might want to find a neurologist that specializes in MS...

[heathertrent]

He said lesions are normal, everyone has them. He said they show to some degree in pretty much every MRI. He also told my friend he was healthy but he switched to a different neurologist who found significant brain injuries.

Welcome to ThisIsMS, Heather.

I don't think I would use the word "normal" , but your neurologist is correct in saying that brain lesions are nonspecific (in other words, they can be symptoms of many conditions, such as migraines, vitamin B12 deficiency, and LOTS of others). MS is the last possibility to be considered after the others have been ruled out. There is no definitive test for MS.

It is not uncommon for people with MS symptoms to have clear MRIs (showing NO lesions). On the other hand, people who have had no MS symptoms during their lifetime have been found (upon autopsy for other reasons) to have many brain lesions.

Since nutrient deficiencies manifest with MS-like, neurological symptoms, I urge you to start your investigation of symptoms by asking your GP, neurologist, or any doctor to order a vitamin D test (a.k.a. 25-hydroxy D3 test). Testing should also be done to rule out a possible vitamin B12 deficiency. Then, a magnesium test; a zinc test. Also, request your own copy of any test results – it is important to have the actual test number results.

I have been trying to get answers for over 6 years. I have been to several specialists including a cardiologist, neurologist, endocrinologist, gastrointestinal doctor, and even have been sent to a blood specialist. I just had 16 tubes of blood taken in January, 14 in February, and I am scheduled for more April 13. I have corrected many issues we found including low cortisol, low zinc, low magnesium, hypothyroidism is now optimal, and my vitamins B6, B12, and D were all off. We also discovered I am heterozygous for C677T and negative for A1298C MTHFR gene mutations.

All my tests showed I have improved and fall into optimal range, not just within normal range. I'm not feeling any better however, I am getting much worse. I did the 23 and me genetic testing and discovered I have several mutations that put me at an increased risk for MS. My neurologist said it is probably fibromyalgia since my general practitioner had already diagnosed me with that. I'm just not convinced.

I am now having so much trouble walking. I have been barely moving the past couple of weeks. I can't get around my house without a cane. If I am on my feet more than 5-10 minutes my legs start to tremble and I can't hardly hold myself up. I had to sit in a desk chair to fix Easter dinner. I used my cane to push off from the cabinets or refrigerator to get myself across the kitchen.

My legs feel so heavy, like they are weighed down or I am walking under water. Sometimes it is hard to pick my feet up and I can only get my foot of the ground a little bit. It makes it difficult to get around but it is also extremely exhausting.

I get tremors (I call it the shakes) so badly I can barely do anything. We thought it was hypoglycemia but I have been checking my glucose when it happens and it has been normal every time. I also have a lot of muscle spasms in my legs, mostly on the right side.

I have a lot of pain in my right eye. I had lasik eye surgery a few years ago and my vision was 20/20. Now my vision gets extremely blurry with my right eye. I recently had an eye exam and my right eye is now 20/30.

I feel like I am barely living. I can't concentrate and my memory is pretty much nonexistent. Sometimes when I am really exhausted I have trouble talking. I will either use the wrong word, such as calling the library the Bible, or I will stutter. I will often forget what I am saying in the middle of a sentence, not even remembering the subject.

I had an MRI several years ago that showed multiple lesions and then another one in 2014 that I posted the findings for in my original post. The radiologist couldn't find the images from my first scan so he compared that MRI to the report from the first one.

I feel like I could definitely have MS. Does that fit with my symptoms? Sorry for the long post, thank you for taking time to read it.

God bless,
Michelle

[ElliotB]

Since there are about 400 illness that mimic the symptoms of MS, it could be MS or not.

What type of diet are you following? Are you gluten free? Do you exercise regularly?

[heathertrent]

Since there are about 400 illness that mimic the symptoms of MS, it could be MS or not.

What type of diet are you following? Are you gluten free? Do you exercise regularly?

I have been gluten free for a while now. I try to eat as healthy as I can. I used to walk/run over an hour or get on the elliptical for an hour 5-6 times a week. I have not been exercising lately because it is just too much. I am struggling with simple tasks now.

[ElliotB]

Sounds like you are taking good care of yourself. A few suggestions:

- persist with using doctors to get a diagnosis
- even though it is difficult, try to exercise daily. A little bit is better than nothing.
- follow a MS diet. there are many to choose from

May I also suggest a couple of books that you may find helpful:

The Wahls Protocol
Grain Brain

[heathertrent]

Sounds like you are taking good care of yourself. A few suggestions:

- persist with using doctors to get a diagnosis
- even though it is difficult, try to exercise daily. A little bit is better than nothing.
- follow a MS diet. there are many to choose from

May I also suggest a couple of books that you may find helpful:

The Wahls Protocol
Grain Brain

I will check the library for these. I am going to talk to my integrative doctor when I see her in two weeks. She has helped me much more than all the specialists combined. We gave eliminated a lot of stuff. I really feel like this might be the answer. In your opinion, do you think it would fit with my symptoms and MRI? Thank you for your help.

[lyndacarol]

I have been trying to get answers for over 6 years. I have been to several specialists including a cardiologist, neurologist, endocrinologist, gastrointestinal doctor, and even have been sent to a blood specialist. I just had 16 tubes of blood taken in January, 14 in February, and I am scheduled for more April 13. I have corrected many issues we found including low cortisol, low zinc, low magnesium, hypothyroidism is now optimal, and my vitamins B6, B12, and D were all off. We also discovered I am heterozygous for C677T and negative for A1298C MTHFR gene mutations.

All my tests showed I have improved and fall into optimal range, not just within normal range. I'm not feeling any better however, I am getting much worse. I did the 23 and me genetic testing and discovered I have several mutations that put me at an increased risk for MS. My neurologist said it is probably fibromyalgia since my general practitioner had already diagnosed me with that. I'm just not convinced.

I am now having so much trouble walking. I have been barely moving the past couple of weeks. I can't get around my house without a cane. If I am on my feet more than 5-10 minutes my legs start to tremble and I can't hardly hold myself up. I had to sit in a desk chair to fix Easter dinner. I used my cane to push off from the cabinets or refrigerator to get myself across the kitchen.

My legs feel so heavy, like they are weighed down or I am walking under water. Sometimes it is hard to pick my feet up and I can only get my foot of the ground a little bit. It makes it difficult to get around but it is also extremely exhausting.

I get tremors (I call it the shakes) so badly I can barely do anything. We thought it was hypoglycemia but I have been checking my glucose when it happens and it has been normal every time. I also have a lot of muscle spasms in my legs, mostly on the right side.

I have a lot of pain in my right eye. I had lasik eye surgery a few years ago and my vision was 20/20. Now my vision gets extremely blurry with my right eye. I recently had an eye exam and my right eye is now 20/30.

I feel like I am barely living. I can't concentrate and my memory is pretty much nonexistent. Sometimes when I am really exhausted I have trouble talking. I will either use the wrong word, such as calling the library the Bible, or I will stutter. I will often forget what I am saying in the middle of a sentence, not even remembering the subject.

I had an MRI several years ago that showed multiple lesions and then another one in 2014 that I posted the findings for in my original post. The radiologist couldn't find the images from my first scan so he compared that MRI to the report from the first one.

I feel like I could definitely have MS. Does that fit with my symptoms? Sorry for the long post, thank you for taking time to read it.

God bless,
Michelle

Thank you for more details about your medical journey, Michelle – we had no idea of everything you have been through, and you have been through a lot already.

Having a particular interest in vitamin D (probably the most common deficiency) and vitamin B12 (it is estimated that 40% of the American population has suboptimal B12 levels), at this time, I am curious to know the actual number results of your D and B12 testing ("were all off "is not enough information). Since you have been dealing with this for a long time, I'm sure you know that vitamins D and B12 are needed in the tissues; raising the levels in the blood does not correct a functional deficiency in the cells immediately – it simply takes a while. And, there is the additional complication that many experts believe that the reference ranges (or target levels) are set too low.

For example, most US labs consider 30-100 ng/mL to be a fine range for vitamin D. The GrassrootsHealth organization in California (www.GrassrootsHealth.net) advocates 40-60 ng/mL; and there are neurologists who recommends 80-100 for people with neurological symptoms.

Generally, US labs consider a vitamin B12 deficiency to be below approximately 200 pg/mL – in Japan, any value below 500 pg/mL is considered a deficiency and is treated.

And since your neurologist has mentioned "fibromyalgia" (and GP diagnosed), I refer you to the following short video with James E Dowd, M.D. and author of the book The Vitamin D Cure:

Misdiagnosed Vitamin D Deficiency with James E. Dowd, MD (9 min.):

Interviewer: Because of what you said where a lot of doctors still aren't seeing this as a need to get tested for, vitamin D deficiency is probably still misdiagnosed as a number of other things… Is that correct?
Dowd: Yes, it probably is overlooked in a number of different diseases. Chronic pain, something that's rising significantly in the United States right now. There was a study that was done looking at chronic pain and they found that patients who had low vitamin D levels, below normal, were using twice as much pain medication as the patients in the pain clinic who had normal vitamin D levels. So there's a correlation there with how much pain you experience among patients with chronic pain.
@0:55 Another example of a disorder that is sometimes misdiagnosed and is vitamin D deficient is fibromyalgia, which is one of these chronic pain disorders….
@1:25 I'm not saying that everybody with fibromyalgia has vitamin D deficiency, but probably 70% do because 70% of the population is deficient
@1:43 There are occasional patients with fibromyalgia where that is the primary driver of their pain and fatigue and misery; and when you correct that they get dramatically better.…
Interviewer: Could a person be deficient and not really know it? And is there any harm in that?
Dowd: In fact, most patients who have vitamin D deficiency don't know it - either don't know it because they don't know what symptoms are associated with deficiency, or they don't know it because they just feel fine and they've never measured… Symptoms unfortunately are often a fairly late sign in any disease process or deficiency or imbalance. Just because you don't have any symptoms doesn't mean that you're not at risk.


Dr. Robert P Heaney, M.D., at Creighton University, Omaha, Nebraska, has several YouTube videos out there also. He often explains that all tissues need all nutrients, and that shortages impair the functioning of all body systems; the particular system depends on genetic variables in the individual.

Be aware that your symptoms can be due to a vitamin D deficiency (especially hypothyroidism comes to my mind because D is crucial to thyroid function!). To answer your last question… Your symptoms are consistent with MS, but the other more likely possibilities must be excluded first.

I have no medical background, but I think that the probability of a nutritional deficiency in the tissues is the better bet. MS symptoms are unique to every individual; we may not all experience every one of yours, but we understand your situation and your frustration – you have friends here willing to share our ideas . We are good listeners too, when you just need to vent!

[heathertrent]

My integrative doctor likes to see vitamin D between 90-100, mine has been been in the 90s for just over a year now thanks to vitamin D supplements taken with vitamin k to help with absorption. She wants my vitamin b12 above 800, mine has been for about a year. It has been a long road to get my blood work to all be first within range (most of it wasn't close) to finally optimal. She tests everything at each visit to make sure my levels are holding. She said that helps to rule those things out if she can be certain they are optimal and stable. She has questioned the diagnosis of fibromyalgia and said she may ask me to see a different neurologist. I have been seeing the current one since before I started seeing her.

I'm so completely overwhelmed. It is causing me problems in every area of my life. I can't soak in the bathtub anymore because I can't get in and out by myself. When I take a shower I have to hold on to the bar on the side of the tub to keep from falling. This is made even more difficult because I was born missing my left arm from about two inches below my elbow. I have a small tear in my rotator cuff on the right side so using my cane kills my shoulder. I am not able to do things with my children anymore. My daughter keeps asking me to have a girls day and go shopping and out to eat but I can't. I can't be on my feet that long because my legs will simply not tolerate it. I don't know what to do. I am only 37 years old I can't enjoy life at all anymore. Thank you for your help.

[lyndacarol]

My integrative doctor likes to see vitamin D between 90-100, mine has been been in the 90s for just over a year now thanks to vitamin D supplements taken with vitamin k to help with absorption. She wants my vitamin b12 above 800, mine has been for about a year. It has been a long road to get my blood work to all be first within range (most of it wasn't close) to finally optimal. She tests everything at each visit to make sure my levels are holding. She said that helps to rule those things out if she can be certain they are optimal and stable. She has questioned the diagnosis of fibromyalgia and said she may ask me to see a different neurologist. I have been seeing the current one since before I started seeing her.

I'm so completely overwhelmed. It is causing me problems in every area of my life. I can't soak in the bathtub anymore because I can't get in and out by myself. When I take a shower I have to hold on to the bar on the side of the tub to keep from falling. This is made even more difficult because I was born missing my left arm from about two inches below my elbow. I have a small tear in my rotator cuff on the right side so using my cane kills my shoulder. I am not able to do things with my children anymore. My daughter keeps asking me to have a girls day and go shopping and out to eat but I can't. I can't be on my feet that long because my legs will simply not tolerate it. I don't know what to do. I am only 37 years old I can't enjoy life at all anymore. Thank you for your help.

It sounds like you have found a good medical team partner in your integrative doctor – she is definitely "a keeper!"

A vitamin D level "between 90-100" sounds good to me (remember: I have no medical background). And maintaining that level for over a year would also seem to be good. However, your vitamin D level was probably very low for a very long time (maybe even from before birth, in utero – vitamin D affects almost 3000 genes; deficiency during pregnancy can result in skeletal deformities… Maybe it is even involved in your MTHFR gene mutations. Like B12, which is involved in synthesis of DNA, red blood cells, and the myelin sheath around nerve cells, vitamin D is IMPORTANT.)

Vitamin D Status during Pregnancy and Risk of Multiple Sclerosis in Offspring of Women in the Finnish Maternity Cohort, March 2016
http://archneur.jamanetwork.com/article ... id=2499458
"Conclusions and Relevance: Insufficient maternal 25(OH)D during pregnancy may increase the risk of MS in offspring."

Even with very high doses of vitamin D, patients, treated by the Brazilian neurologist, Dr. Cicero Galli Coimbra, and determined by him to be "vitamin D resistant," require very long-term, if not lifelong, regimens of vitamin D. (See the Coimbra High-Dose Vitamin D Protocol sub forum here: http://www.thisisms.com/forum/coimbra-h ... tocol-f57/)

Vitamin D expert, Dr. John Cannell, of the Vitamin D Council (http://www.vitamindcouncil.org/) has even described something called "substrate starvation" which means that vitamin D coming into the body is not stored in muscles and tissues as it should be. I have read that it takes at least 2-3 years to replenish this.

My heart goes out to you, Michelle. I can only encourage you – I feel you are on the right track with correcting nutrient deficiencies; it will not be an overnight fix. I sense that you will persevere; you have endured so much. Physical activities with your children may not be possible at the moment, but you set an example for them, and for all of us, to follow: your courage to deal with this adversity, your obvious intelligence and attitude to educate yourself about so many aspects of health, your understanding of their problems because of dealing with your own.

You are in my thoughts and prayers, Michelle. I am optimistic for you because I see your inner strength.