20 y/o, abnormal mri, lp next month

[murrays14]

So, from going to the ent on the recommendation of my gp for ringing in my ears it's now a few months later and after some testing and getting a referral to a neuro, my neurologist seems to think it's ms. My mri showed "a few scattered t2/flair hyperintense lesions present in both the superficial and deep subcortical white matter" and that, along with all the symptoms that honestly i'm too tired type out right now, makes my neuro think that ms is likely. I'm not going to say I definitely have it just yet since we still have a little bit of testing yet, but I'm going to go off my neuro's assumption and how much everything matches ms. So i know ms isn't fatal and supposedly doesn't decrease your life expectancy years wise, what's the prognosis of someone being diagnosed at 20 (well, 21 since the lp is after my birthday)? Should I be worried about completing my last year of college? How do you know if you are having a flare up/relapse or if your usual symptoms are just being a bit worse than usual? How much should I be worried about the exacerbation of symptoms since I have a sleep disorder that won't ever go away (delayed sleep phase disorder)? Do glasses help with visual problems like blurry or double vision? I know these questions aren't really all that related, but it's simpler than typing out multiple topics about them.

[lyndacarol]

So, from going to the ent on the recommendation of my gp for ringing in my ears it's now a few months later and after some testing and getting a referral to a neuro, my neurologist seems to think it's ms. My mri showed "a few scattered t2/flair hyperintense lesions present in both the superficial and deep subcortical white matter" and that, along with all the symptoms that honestly i'm too tired type out right now, makes my neuro think that ms is likely. I'm not going to say I definitely have it just yet since we still have a little bit of testing yet, but I'm going to go off my neuro's assumption and how much everything matches ms. So i know ms isn't fatal and supposedly doesn't decrease your life expectancy years wise, what's the prognosis of someone being diagnosed at 20 (well, 21 since the lp is after my birthday)? Should I be worried about completing my last year of college? How do you know if you are having a flare up/relapse or if your usual symptoms are just being a bit worse than usual? How much should I be worried about the exacerbation of symptoms since I have a sleep disorder that won't ever go away (delayed sleep phase disorder)? Do glasses help with visual problems like blurry or double vision? I know these questions aren't really all that related, but it's simpler than typing out multiple topics about them.

Welcome to ThisIsMS, murrays14.

Lesions are not unique to MS. Lesions are also a symptom of vitamin B12 deficiency, celiac disease, and many other conditions. In the "little bit of testing" that remains to be done, I hope the following problem areas will have been ruled out:

Vitamin B12 and folate levels, vitamin D3 level
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

By the way, it is a good idea to request and keep your own copy of any test results. I am curious to know what your vitamin B12 and vitamin D levels were; "normal" or "fine" is not adequate – you need to have the actual number results.

[nesquikii]

Hello, im sorry i dont really have any advice but im also very curious to read the answers to all your questions since u want to know everything i want to know. Waiting on my neurologist's appointment and trying to stay positive ^^
Hope the best for you!

[murrays14]

As far as I know I haven't had those tests, but I don't know if my neuro doesn't see those as necessary or if he plans on those and just didn't mention it during my one initial appointment I've had. The testing I mentioned that I had left was the lumbar puncture, since that is what I have scheduled and what my neuro mentioned I should have done. I think he went right to ms after looking at the lesions on my mri, asking about the symptoms, and performing what I just now realized was some neurological and reflex testing. I don't know what symptoms other than the lesions come with the conditions you mentioned, but I can explain my symptoms a bit since I was too tired to when I first posted.


I've had migraines for about 12 years (since fourth grade/2004) that usually get more numerous/worse in the heat, fatigue especially when it is hot or when my body or joints/muscles get warmer, ringing in my ears for about a year and a half, balance problems (going down stairs, looking straight up, in other situation) for as long as I can remember, visual snow for as long as I can remember, double vision and blurry vision for just the past couple months (along with my night vision getting worse and seeing flashes/spots more often which are already often because of the visual snow), forgetting things a lot (what something is called, what i just said halfway through a sentence, what i was going to say next, why i entered a room, if/what i ate that day, etc, etc), tingling in my hands and feet on and off, numbness in my hands, feet, and legs that don't really spontaneously go numb but just go numb more easily, ankles and knees sort of lock up after walking a while or after they warm up and stop wanting to bend, temp in hands and feet go from really cold to really hot quickly and frequently, constant back and neck pain and stiffness and needing to crack my back and neck probably dozens of times a day, needing to crack most of my joints often (ankles, knees, toes, fingers), difficulty swallowing (though i don't know to what extent that's caused by medicines causing dry mouth or from something else), for a while i had really sharp stabbing pain near my cheekbone and just above my eyebrow (not at the same time) that has since gone away.

i think that's it. some of it has been just the last couple months, like the vision stuff and the tingling difficulty swallowing and stabbing pain, some of it has been there a while.

[murrays14]

Oh, and a lot of muscle spasms- some like individual muscles like near my eyes or in my back that seem to vibrate for a minute then go away and some in my legs that cause my leg to twitch and a lot of ear pain. not sure if that is from my wisdom teeth coming in, but it doesn't seem like that is completely the cause of it because even when they aren't coming in or aren't coming in or causing issues on that side there's still a lot of pain.

[lyndacarol]

I think that a specialist (like your neuro) often looks for causes of symptoms ONLY within his specialty. You might take a written list of all your symptoms, which you can hand to your neuro (or better yet, to your GP) and discuss thoroughly ALL possible causes.

Numbness/tingling in the legs and arms is a common symptom in many conditions and is the textbook definition of "peripheral neuropathy." In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

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

Please note that the first blood tests the U of Chicago suggests are for vitamin B12. (Thorough, initial testing requires these 4 tests: 1) serum B12 test, 2) RBC folate test, 3) a serum homocysteine test, and 4) a methylmalonic acid test – either as a blood test or urinary test). Be sure to request your own copy of any test results.

There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.


I highly recommend this 52-minute documentary featuring Sally M. Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their second book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)

@1:23 "The neurological manifestations well precede the hematological manifestations."

I think you will find ALL your symptoms listed in this video – "ringing in the ears" is known as tinnitus; "tingling/numbness in hands and feet" is peripheral neuropathy; "difficulty swallowing" is dysphasia.

Any person at any age (even 20 y/o) can develop a B12 deficiency.

In addition to B12, request additional nutrient testing. Deficiency in vitamin D3 is very common – estimates are 50% of the general population worldwide is deficient in D3; I have read this can be as much as 70% in young people (The sun has been demonized; sunscreen use is everywhere and sunscreen interferes with vitamin D absorption.) Please ask your GP (or even your neuro) for a vitamin D3 test, a.k.a. 25hydroxyvitaminD.