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147426 tn?1317269232
Can You Can Have MS without MRI Lesions?
I know we have covered this before, and I really should spend more time on the National MS Society site, but this is a quote from the NMSS Sourcebook on MRI's.  It says everything so much more succinctly than I do when I'm "winging it."

"Diagnosis
Because MRI is particularly useful in detecting central nervous system demyelination, it is a powerful tool in helping to establish the diagnosis of MS. It should be remembered, however, that approximately 5% of patients with clinically definite MS do not show lesions on MRI, and the absence of demyelination on MRI does not rule out MS. Also, since many lesions seen on MRI may be in so-called "silent" areas of the brain, it is not always possible to make a specific correlation between what is seen on the MRI scan and the patient's clinical signs and symptoms. In addition, with advancing age (probably over age 50), there are often small areas seen on MRI in healthy people that resemble MS but are actually related to the aging process, and are of no clinical significance."

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIB_sourcebook_mri

Guys, not to restate the obvious but this is 1 out of every 20!!!  I'll keep looking, but even my MS Neuro, whom I consider very smart, felt that MS was ruled out by normal MRI's.  I need to understand whether the 5% got diagnosed because they presented so classically - maybe with Optic Neuritis, more than one clear attack, a very positive LP, and a tatoo on their forehead that says, "I have MS!"

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I am 59, and I  have MS without visible lesions. I was diagnosed, on 11/09/2011,  struggling for 6 years.

In 2008, my former Neuro dx'd me with MS but theretractedcd thDCDX because he didn't want to "label me, because it was for the rest of my life."
Duh. No kidding. My 2nd cousi, Erv, lived with MS for 18 years, before he died in 2008.

I was fortunate enough to have been referred to a wonderful Spine Specialist to a top MS Specialist. She doesn't take patients that have not been diagnosed, but he spoke with her personally, and she agreed to see me.

My D.O.'s nurse prepared me for the appt. She told me to make a list of every symtpom, and not disregard it because I thought it was insignificant, because it could be significant to her.

My symptoms actually started in 1998. But they became very severe in 2005, and I spent two years on the couch with such severe nerve pain in my couldn'tI coudn't sit, stand or walk for very long.

My MS Specialist told me the most important paperwork that I broSTt to my 1st appt. was my symptoms list.

I tried Copaxone-was allergic to it.

After several weeks of blood tests to make sure it hadn't done any damage, I began Rebif. Due to my size 5'2, 74#s, I can only tolerate 22 mcgs.

Sheila
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Where is the official page in this source book that I can print out to show to my doctors? The MS doc I saw refuses to admit that I could have MS even with no signs of lesions on my MRI, and no O-bands in my LP. I tried to explain that it was too soon to say that it is not MS, but she dismissed me. I'd like to have an official page printed out on my next visits to any specialists. Thanx.
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My husband was diagnosed with MS in Jan 2012. It first started with Optic Neuritis w/o lesions in 2009. No diagnosis given b.c no lesions on MRI anywhere. Then 2.5 years later a flareup with numbing in neck and arm with 2 spinal lesions, still no brain lesions. We had two Neruo's (Stanford VA and Michigan VA  (UofM MS Specialist) tell us it is very abnormal to not have lesions on the brain, but were never the less diagnosed after spinal lesions.
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Hello
I am having some problems. I feel like sometimes I can barely get out of bed. Sometimes especially over the last few months by neck pain and discomfort is so bad I can't function. Usually these symptoms come with a headache or migraine.I feel like I am in a fog. sometimes I have random joint pain too. I saw a dr for my neck pain and after a MRI of the cervical spine was told I just had some bulging discs. Then just about 2 months ago I noticed tingling and numbness in the toes, finger tips, face and weakness. I saw my neuro who I see once a year for migraines and she sent me for a brain MRI that she said was normal. Since then the symptoms are still coming on and off but now I have difficulty swallowing. Sorry to be gross, but it feels like I have mucus stuck in my throat but, I'm not sick. Also every so often over the last year I'd get some symptoms consistent with panic attacks. I get the difficulty swallowing followed by headache and weakness but then it goes away within minutes.Mind you I agree with My PCP, I have reasons to have panic attacks and stress if thats it. I mean I work full time at a busy call center in a very stressful job. I also am the mom a a 7 year old autistic boy who is my world and I very beyond involved however this time my symptoms of difficulty swallowing haven't lasted 20 min like what my dr said were most likely panic attacks.This has been non stop for three days. I cant even fall asleep. I feel like I cant breathe from how uncomfortable my throat feels. I really cant help to wonder if all these symptoms are related to each other especially since the numbness and tingling was just one month ago. I really just want to feel good! HELP
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by the way I am 34, Since I didn't mentioned that. Thanks!
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wow I keep remembering things now. Also having some pain or discomfort
( on my bad foggy days) like behind my eyes, really I think my left eye. I appreciate any suggestions...
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can i have the number to your neurologist please i have been suffering for yrs and my neuro believes it has to come positive with lesions for you to have MS, i have twitching pins n needlies in legs get very stiff trembling in hands migraines and def shut down before weather changes, it gets so bad i cant get off the couch and am in tears almost everyday
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Please make sure you get checked out for Lyme Disease by an LLMD, a Lyme Literate Medical Doctor.  You will want to get tested at IGeneX, as many other labs produce way too many false negatives.  Lyme can mimic MS and a negative test does not exclude it, as in my case. You'll want to do this before you take any immune suppressing medications for possible MS, as steroids can make an infection much worse.
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I believe you should get a second and third opinion. It wouldn't hurt.
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You might want a neuro to check for seizures.  Good luck!
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B6 TOXICITY - mimics the symptoms of MS.  In every way.  I was going crazy, convinced I had it.  The tingling turned into weakness and inability to walk, or hold things.  

It turned out to be B6 toxicity.  Everyone should look into that.  It is not a common diagnosis.  Those vitamins need to have a serious warming label on them.  
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http://www.livestrong.com/article/317889-vitamin-b6-toxicity-symptoms/
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I am at my wits end and am just about done with the horrible Medical field. I was told by 3 Cardiologists there was nothing wrong with my heart- 4th GOOD Cardiologist at May (who REALLY listened to me) spent some real time on my case, found a rare anomaly and repaired it. He told me I was within weeks to a month of dying.
Then, same story on unexplained abd/testicle pain, everyone said nothing's wrong. Wonderful Surgeon at FSU believed in me, did rarely approved exploratory- Small bowel resection and scar tissue removal. Pain resolved.
But my symptoms of anorexia, chronic nausea, and now visual disturbances, balance problems, swallowing difficulty (thin liquids), visual disturbances, loss of muscle mass not due to anorexia (I eat high calorie food, lots of Boost, etc), and intermittent tremors, numbness and "body" zaps like I'm being shocked ( but not painful). Memory lapses, and extreme heat intolerance (heat NEVER bothered me in past)... PMD thinks maybe MS, but I cannot have MRI. Neurologist (horrible little Pakistani man, horrible) asked me my meds, belittled me for using walking aid, and had me squeeze thumbs, touched each knee (do you feel this), had me walk 10 ft., and even though he witnessed my tremor of left hand, states "You don't have a neurological problem, you don't have MS".. He had not even read any of my charts or history. I walked out on him and scolded him that "yeah, I left a Nursing job making $80k/yr, and was always active (very physically fit and in better shape than most 30 yr olds) just so I could sit at home and draw $1500 SS, and he says back "some people simply want to have an illness".
How do you fight that? I'm slowly withering to nothing, have absolutely no life, and cannot even shave/shower without having to lie down afterward.
Maybe it's just horrible healthcare in Florida, but I need to find out what's wrong. I want my life back. Many live full lives with MS.
But what else can I do?
On a bright note, my new PMD (I fired mine from last 3 yrs) found I have no testosterone in my system, so that will help many symptoms I'm sure. But low "T" doesn't explain most of my symptoms.
I forgot to add that I "piddle" and have to wear diaper, but cannot void unless I have at least 500 cc of urine, and even if I void at 11pm, drink no water during the night, I have at least 800 cc's of urine at 5am, often 1100-1300cc's, yet do not even feel like I have to pee.
Never even got to tell Neurologist that.
I do have Morphine pump that goes directly into my spine (emaciated and bedridden for 2 yrs, 155lbs down to 109lbs caused severe spinal stenosis (inoperable) and didnt want to take oral pain meds, thus the pump.
Neurologist first question to me was what meds I was on, and as soon as he heard morphine pump, that's when he apparently concluded I was a druggie and malingerer.
People who know me know that is not me. I want nothing more than to get my old life back. The good job, the money, the active lifestyle...
Any advice, information, or referrals to outstanding Neurologists in the Central Florida area would so very much appreciated!
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I am 38 year old female. Almost 2 years ago after th birth of my 3rd child, I had a headache for 4 months. I have always had headaches. I also had neck pain. The dr thought maybe it was a spinal leak from epidural. Sent me to neurologist who did MRI. Came back I had 4 ruptured discs in neck. Met a pain mngt dr who suggested injections. Got a round in June 2011. Felt pretty good for almost a year. June 2012 noticed severe neck and head pain. Had shoulder pain and tingling in neck. Did another round of injections but they didn't seem to work.  2 months later i was miserable. August 2012 saw neurologist again. Pain in head, neck, shoulder. Blurry right eye and some pain. Pins and needle feeling in both hands and feet. Weakness in arms and legs. Joint pain at elbows and knees. Extreme Fatigue. Body feels so tired and weak. Had 3 MRI's with and three MRI's without contrast. No lesions. No active dymelinating disease. Saw ophthalmologist. Optic nerve looked fine. No problems. Currently neurologist wants me to complete more blood work, have a spinal tap, see a rheumatoid specialist in case there is an autoimmune disease present that is mimicking MS. I am seeing a neurosurgeon next week for the neck stuff. I also need to schedule VER test. I feel my neurologist is on top of this and she deals with a lot of patients with MS. It is hard to be patient when u r so miserable. I want answers but realize the process of elimination has to be done until there is a definite diagnosis. I feel my neurologist believes it is still MS. If my spinal tap comes back ok and the VER test is negative for MS ... What th heck could it be? Is there anyone who has had all of these tests come back negative and still have a diagnosis of MS? Michele
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Not sure whatever happened with your condition, but Dr. David Mattson is an excellent neuro.  Look him up!  Indiana.
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I asked for help  which I believed to be on the same forum as this one, yet comments stopped in 2009. I don't know if you have access to that or if I have to repost. Please let me know.
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1831849 tn?1383231992
Hi-  This is a rather old thread. It was started in 2007. Quix, our former resident MD, has moved on to other things and is no longer participating on the board. You might want to post a new question. While there are no doctors, there are lots of really smart folks here :-)

Kyle
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In 2009 I got my first flu vaccine (H1N1) and a few days after that I developed symptoms in my feet and legs, and worked their way up to my hands and face. Got IVIG treatment, and got better. I retained some numbness in my left palm, but it wasn't present all the time. I went back to my workout routine which my doctor approved. In August 2010 symptoms returned, and as treatment was not immediate (docs seemed to be puzzled,) I started experiencing more nasty things: muscle twitches and cramps, heavy legs, inner tremors in my hands. Eventually, they put me on another IVIG treatment in late November, but it didn't do the magic of the previous one. I also saw a homeopathic doc around the same time,so when I finally got better again I wasn't sure which treatment kicked in. In 2011 I was Ok for a while, and then worse again, but didn't seek medical help as I wanted to avoid the unpleasant experience I had with them. I took Lorazepam 0.5 mg when needed, and marched on. Every time I got better I was tempted to do things as before, walk more, l
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I must have pushed the wrong button, so I'll go on with my story. I never really was the same as before. What triggered my symptoms was physical exertion and longer showers or hot baths. My neuropathy was all overmy body, scalp included. I worked around those issues and 2012 was altogether a better year. Encouraged, I started working out again (but nothing compared to my healthy years,) and by late September symptoms came back with a vengeance. I developed a stubborn twitch under my left eye, iritis, more numbness, a knot in the throat, itching, insomnia, and the list goes on. I am seeing a different neurologist, and she believes that bases on my symptoms I might have MS. My MRI , EMG test, and neuro exam were fine. I'm scheduled for LP next week. Blood tests showed nothing spectacular aside from an elevated platelet count (650 for a max. Of 400, ) which I've been having from 2004. The doc believes that an old inflammation in my body was excited by the vaccine and caused all this. I did some reading, and found no instance of vaccination triggering MS. I need a fresh eye, a look outside the box. When more complex things develop, doctors have a tendency to sent you from one specialty to another, but none is willing to look at it in a comprehensible way. An input would be much appreciated.
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Thank you, Kyle, for being so quick to respond. I've read posts before, but I've never participated in any. I guess I'm just tired of telling my story again and again. I've seen my share of doctors, even wrote down for them a chronological recount of my symptoms, and I still don't have a Dx., hence no treatment. I barely feel my legs, and when I do it's mostly burning pain. Hands are getting there as well. For this day and age,to say nothing about the research done in this country alone, I (and many others) shouldn't be sitting numb without a Dx. for such a long time. My question for Quix was pretty targeted : has anyone been diagnosed with MS after a flu shot? All hell came lose after my H1N1 vaccination in 2009. I particularly seem sensitive to physical exercise and hot water. My doc says the hot water strongly suggest MS, but do the muscle twitches do too? I read somewhere that in spite of being an autoimmune disease, MS does not respond to IVIG treatment. My initial treatment with it worked. I'd like to make sense of all this.
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My first reaction was after the MRI dye gadolinium. It can be toxic if the chelate breaks and apart of often does. There are a few tests to see how much Gd you have retained. Most Drs will not so them. Maybe these tests are causing MS like symptoms.
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Yes, I too am a 47 year old male. I have these symptoms plus many, many others that come and go. The Dr.'s and Nero. all have done many tests including spinal tap and MRIs but still tell me nothing is wrong. Yesterday and today I could not go to work, tingling hands, electrical impulses in feet and hands, dropping things, hands jerk, facial numbness and tingling and swaggering in walk and difficulty walking...mind foggy. Still Dr's unsure what is wrong...
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Sounds familiar. Been 2 years of the exact same things. Dr's don't want to make a diagnosis. The last 46 yrs I have been fine and working hard and many hours, and now I can't function even in my own home. Easier to blame the patient I guess.
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I signed up b/c of your post...what is the name of your doctor?
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5112396 tn?1378021583
Hi there.

This post is kind of a golden oldie. Patti hasn't actually posted on MedHelp since 2008.

There are lots of currently active members though, so if you'd like to start a fresh thread and post a bit about yourself, I'm sure you'll get lots of feedback. Alternatively, if that's a bit intimidating to start (though we're pussycats, I swear) have a look at our extremely helpful Health Pages. http://www.medhelp.org/health_pages/list?cid=36
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From what you have described this sounds like a clear case of CCSVI.
The neuros won't accept the vascular connection in MS but it's link has been studied since the first discovery of MS.
The auto immune theory has never been proved and is still just a theory.
Venous issues and neurological problems are being linked more and more by researchers (who are not funded by the drugs companies)
Alzheimer's and Parkinsons and MS are ALL part of the same problem its just that the venous bloodflow is restricted in different areas.
Please google CCSVI and parkinsons or go to CCSVI.org.
Also look on facebook, there are many CCSVI groups world wide trying to bring recognition to this condition.
There are lots of people going out of their way to disprove this discovery (due to pharmaceutical revenues) but please believe me, this is the truth, i have felt it.
PS also look up inclined bed therapy, costs nothing and has helped many people with said issues.
Just because you dont have ms does not mean you don't have CCSVI.
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1831849 tn?1383231992
Hi YA-

Welcome to our little chat. CCSVI is indeed a much discussed topic in MS Land. More and more research is being done in this area. It does seem as those most of the findings can't establish a link between CCSVI and MS. Here is a summary of an article published earlier this month.

Kyle

Mult Scler. 2013 Jul 4. [Epub ahead of print]
Chronic cerebrospinal venous insufficiency: masked multimodal imaging assessment.
Brod SA, Kramer LA, Cohen AM, Barreto AD, Bui TT, Jemelka JR, Ton K, Lindsey JW, Nelson F, Narayana PA, Wolinsky JS.
Source
Department of Neurology, University of Texas Health Science Center at Houston, USA.

Abstract
BACKGROUND:
Chronic cerebrospinal venous insufficiency (CCSVI) was implicated in the pathophysiology of multiple sclerosis (MS).

OBJECTIVE:
We evaluated neurosonography (NS), magnetic resonance venography (MRV), and transluminal venography (TLV) in subsets of MS patients drawn from a single-center, prospective, case-control study of 206 MS and 70 non-MS volunteers.

METHODS:
As previously reported, findings on high-resolution B-mode NS imaging with color and spectral Doppler of the extracranial and intracranial venous drainage consistent with CCSVI were similar among MS and non-MS volunteers (3.88% vs 7.14%; p = 0.266). Ninety-nine MS participants consented to intravascular contrast-enhanced 3D MRV to assess their major systemic and intracranial venous circulation, and 40 advanced to TLV that included pressure measurements of the superior vena cava, internal jugular, brachiocephalic, and azygous veins.

RESULTS:
NS findings and MRV patterns were discrepant for 26/98 evaluable subjects, including four with abnormal findings on NS that had normal venous anatomy by MRV. In no instance were TLV pressure gradients indicative of clinically significant functional stenosis encountered. The three imaging approaches provided generally consistent data with discrepancies referable to inherent technique properties.

CONCLUSIONS:
Our findings lend no support for altered venous outflow dynamics as common among MS patients, nor do they likely contribute to the disease process.
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im 34 years old me and my wife have been batteling this for 2 years now i have gone threw all the test this makes my secound time i have to walk on crutches now im used to doing things my self now i have to ask for help drives me crazy but i have to do it now im use to it they said ill be in a chair in a year my family keeps me going ill prove them wrong .
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Hi, I am 43 and have very similar problems.  tingling and burning in arms legs, right side of face and my scalp.  Cannot distinguish the difference in hot and cold water.  But I also have joint pain in hips, wrists and elbows.  I have a burning tongue also.  I have seen two neuros, rheumatologist, switched gps.  I'm so tired of this.  I had a nerve conduction study and they said I have polyneurophathy and mri showed protusion of c5-c6, and c6-c7.  I have been told in the past I have fibro and I take Cymbalta and Lyrica but obviously that isn't helping because I have been on them for over 4 years.  I have had shingles and have b-12 deficiency but shots didn't help that either.  Could I have ms or lupus?  I do not have lesions on the brain.
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5112396 tn?1378021583
It doesn't sound like MS would be the most likely candidate for what you're going through, and I'm so sorry you haven't found relief in the medications you're on.

Did your doctor speak with you about your cervical spine issues and if the sensations you're experiencing are characteristic of those protrusions? Have you seen a rheumatologist? (as you mention a lot of joint pain and a firbo diagnosis in the past). I'm thinking shingles could account for the polyneuropathy, perhaps.

If you start a new thread of your own you may get a little more response. This thread is kind of a 'golden oldie' and people may skip over it as they look on the front page of the forum, not realising there's a concerned new member asking questions.
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Who was your neuro?   My MRI only shows two small white spots and no lesions on the spine.  Yet I have burning leg pain, Right eye pain all the time at a level 4-5 and sporadic rib pain that sends me into tears.  I need to see someone that understands this and not just want the typical symptoms to make their job easier.
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My wife was diagnosed in 2005 her doctor died in 07. the records are nowhere to be found.  Here's our problem, she had a major exasperation in August and could not walk unassisted so I took her to Piedmont Hospital in Atlanta. The MS doctor on call ( he has a MS Center a couple of miles away)  gave her five days of Solu-Medrol treatments and her vision got better then was transferred  to Shepherd MS clinic next door after 20 days of rehabilitation she is now in a power wheelchair.   When we went back for a follow up it seemed like the director of the ms clinic at Shepherd  dismissed her saying he could not say it was ms related because her mri showed no lesions.
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If you have previous MRIs, the hospital where they were done would have copies.  
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My husband started having weakness and numbness in his left leg and left arm then gets lightheaded like he is going to pass out last for about 15min then he is ok again then has another spell off and on. He has like 4 or 5 spells a day for a few days then none for a couple days then more spells again. He has had all work ups and not heart related. He just had a Mri but looked normal only one small 3milameter spot on left side so dr said not ms but is referring us to neurologist have to wait 6 weeks to get in. These spells are hard to work in factory with. Just worried
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I have been having symptoms now for about a year.  I have legs burning, tingling, back pain (hugs) like someone is squeezing the air out from me from my back.  I have nerve damage from my toes to my finger tips, I was told I have O.N in my left eye but today was told by another doctor that I don't but something is wrong with me and they just don't know what it is.  standing still I topple over, walking I trip, I can't think straight, I'm forgetting so much, and my vision is decreasing quickly.  I work at a hospital and am finding it difficult to perform my duties!  I have a uncle and cousin whom have MS, my MRI on brain and spine came back negative, had a nerve conduction test, not peripheral, so its sensorial, blood work came back all ok..I want a spinal tap but my neurologist doesn't think anything is wrong!  Im loosing my mind...thanks for listening-Lauri
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Hi there

I wondered if anyone can help me I've been diagnosed with optic neuritis with Holmes adie pupil and vermiform iris.   I have been having pain in my eye, blurring, black spots and going partially blind...dizzy spells, fainting episodes headaches and nausea. My pmh includes IBS and ?TiA as I had numbness and tingling in my hands arms and face. I am waiting on an appointment with an eye surgeon, but the symptoms are just getting worse, if I go to the hospital they just send me home again....not sure what to do!

Any advise would be greatly appreciated
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12832842 tn?1448732401
Hi,
My name is andrea. In my research I see you on many threads. You seem very informed and helpful.
I was just diagnosed with MS a couple of days ago. I'm still trying to let it resignate.
I seem to be on the mild side of things. I'm no stranger to headaches/ hormonal migraines. What set things off was that in addition to a case of optical neuritis, fatigue, sometimes my toes curling, occasional twitches, light headedness.
I'm not one to run to the doc whenever I don't feel well, but this seemed different and I felt something was going on. I was under a lot of stress with a funeral, and tried to push it off to stress. However , the suggestion of an MRI was given by my Opthomologist. So.. I did. Through my GP. Showed "scattered lesions" and I think demylation . One lesion enhanced.So off I went to an MS neurologist.
I have a dr.  as a MS neurologist . Excellent credentials. He ran Another brain MRI with the spinal MRI. Using the T3 . Compared 1 st MRI of the brain. Showed an additional ( albeit small) enhanced lesion. Spinal was negative.
First of all.. Could it be anything else? (Prob not. ) What terrifies me are the meds. I can't do it. It gives me such anxiety to put such brutal drugs in me that have such awful side effects. I feel fine except occasionally fatigued.  I just today noticed a little numbness in my right finger. But pretty much gone now?! Weird since I don't have spinal lesions right? The brain doesn't control the arms/ legs/ torso? Being things are so mild, and I'm turning 46 this year,
I want to manage this with a paleo type diet/ vitamins/ excercise/ stress reduction. Isn't it possible with reducing food items that can cause inflamation prevent progression as well? Has there been any success stories with a more natural approach?
I'm really struggling and I meet with the neurologist in 2 weeks. He of course wants to treat. He's very sweet, but I know he's pro drugs. Like most doctors.
Any advise?
Thx so much.
- andi
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5112396 tn?1378021583
Hi Andi! This is a very old thread. Quix isn't very active in the community anymore (though as you state, her wisdom and helpfulness are still VERY apparent here). It's very possible that you will get more response if you copy and paste exactly what you've written here as a brand new thread/question.

First of all, I'm sorry you've joined our club. The time immediately post-diagnosis is frenetic and not a time I personally look back on with any fondness. But it gets better! You're probably absolutely hoovering up information right now, and it can take a while to be able to discern the good from the bad, the trustworthy from the bunk.

To that end, a healthy diet is a great thing for anyone with MS. In fact, it's a great thing for anyone period. However, there is zero evidence that it will alter the disease course itself. Stress-reduction, exercise, eating right... these are all wonderful and things we should all aim for in the interest of our overall well-being. But again, none of the above will change the course of the disease.

The use of disease modifying drugs is a highly personal choice, but one best made on factual information not fear. All drugs have side effects. If a drug has an effect, it will have a potential side-effect. In the interest of patient information, all side-effects reported prior to a drug's approval must be listed. This can provide a very skewed image of what the side effects will be for the average person.

There are over 10 approved DMDs, along with drugs currently being trialled, and a couple of off-label options that are evidence and science-based. In other words, a patient is not stuck with one they try and don't respond well to.

I guess it comes down to a gamble. Do you bet that a drug's theoretical side effects are worse than the disease continuing unchecked. It's probably already obvious, but I quickly opted for combating my MS after I was diagnosed 4.5 years ago. Whatever my disease looks like in 10 years, I won't have to live with any 'if only I'd...'
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Hi. Quix has not been active here for some years, so I doubt she'll see your post.

I do have some comments, though. I believe you really need to study up on MS, and there's a lot to know, a lot to read. But it's your health you're. dealing with, so it's worth all the effort you put into it. I suggest you start with the web site of the National MS Society for accurate, clear information. 'Sister' sites in Canada, the UK, Australia and other countries also provide facts you can count on to be true. There are also other web sites maintained by highly regarded medical and research organizations that will not steer you wrong.

These are in contrast to sites that claim cures, are not backed with scientific data, consist merely of anecdotes, or are trying to sell you something. Avoid those like the plague--they're bogus.

Eating well, exercising to the extent you can, and generally sticking to good health habits are always recommended, for MSers and everyone else. Beyond this, there are no 'natural' remedies or diets that have been demonstrated to affect MS. None. No foods to avoid, no herbs to take, etc. There is simply no data to suggest this. If there were, all MSers would go that route.

As to the various MS treatments, there are now 11 to choose among. The earliest ones were all injectable, and carried the possibility of side effects. Not everyone experienced these, however, and there are ways to minimize them for the vast majority of patients. Now there are several meds in pill form. I'm on one, Tecfidera. I had a rough break-in period (some stomach issues), but when my system got used to it, things were fine. I now have zero side effects from Tec. If I did have intolerable effects, though, I'd switch to one of the many others.

There's absolutely no reason to be 'terrified' at the thought of MS meds. What is much more terrifying is the harm MS can do. Personally I'm willing to do a lot to minimize my chances of becoming severely incapacitated. No guarantees, but I go with the data that proves these meds help. Just because one's symptoms are mild now does not mean that a catastrophic event will not occur at any time. That could still happen to me, but at least I will have done my best to prevent it. That's all I can do.

As to your question about the brain controlling arms and legs---Well, yes, it plays a big role, if not the only role. I have a brain full of lesions, with none ever identified in my spine, yet I have muscle weakness, brisk reflexes, bladder issues, sensory problems, etc., mostly in my right leg, but elsewhere too. My neuro says my brain has caused all of his.

Once again, I urge you to get the real facts about MS and its treatment. Then you will be in a position to make informed decisions that will affect the rest of your life.

ess
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987762 tn?1331031553
Hi Andrea and welcome to our little MS community,

I'm sorry but quix hasn't been active on Medhelp for a number of years, so it's unlikely she will be able to respond to your questions.....

I am sorry for the reason behind you finding your way here, it's a club no one wants to be a member of *Hugs* I feel the need to address your aversion to the disease modifying drugs (DMD's) and clear up any misconceptions you may be having.

Firstly try to get out of you head, any ideas of doctors being pro meds because they are doctors, the actual reason MS neuro's are prescribing DMD's is simply because of the decades of MS research that unquestionably supports treating the disease reduces the number of relapses, disability rates, quality of life etc

You only need to look at MS research of 20+ years ago to understand why DMD's are better than doing nothing, before DMD's became standard treatment MSers had higher disability rates, poorer quality of life etc etc and today's MSers lives are chalk and cheese in comparison. DMD's are the very thing that directly effects the course of the disease, DMD's pro-actively provide long term and positive outcomes for today's MSers.....

I often feel it can be extremely difficult to accept DMD's, if your symptoms have only been mild or non disabling when diagnosed with MS. Its scary to be considering DMD's, to basically try to prevent becoming disabled when you haven't the personal experience of truly understanding what MS specifically mean to you 10, 15, 20 years from now. I am admittedly pro DMD's and i fully believe in being proactive, and that means utilising all the various disease and symptom treatments options you have available to you, the alternative is simply gambling 'it won't happen to you' with odds already established to not be in your favour.    

Unfortunately there is no scientific evidence to prove that any of the diets, vitamin/herbal programs, stress or exercise programs will directly alter or positively effect the disease its self. There are thousands of 'cure' stories out there but they can't actually be true despite what they claim, they just can't of had MS to begin with for the 'cure' to of worked.

Reducing stress, taking Vit D and being involved in an appropriate exercise or physiotherapy program have all been researched and proven to be very beneficial to people with MS but keep in mind, that they still won't slow down your MS or prevent disability. It's always your choice in what you do or don't but why not start out doing both the recommended DMD and the alternatives, be as proactive as possible now and save making the decision to not do a DMD when you've had time and experience to make a more informed choice with no regrets.

Hugs...........JJ

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12832842 tn?1448732401
Hello all..
Thank you for such detailed and quick responses. Yes.. I'm absolutely hoovering  info. Like crazy. It's very difficult because I seem to be on the mild side of this. I wonder.. Can I progress very slowly with no real big changes? Is there such a thing? Have any of you read " wheelchairkamikaze.com"?  He is a blogger I think. He was speaking of a new drug  Tecfidera. I see that's what you are on essdipidy.. Seems the least of side effects.
But back to some thoughts on diet. My husbands friend is a man with ms. He was bed ridden with all the awful effects. Such as loss of bowels, not walking, ect ect. About 2 yrs. He changed his diet and is now walking, riding bikes, and seems to me really healthy with no relapses. I THINK he was taking Meds but not feeking they were working. So with just an increase in vitamin D ect and diet much like the paleo diet, he's doing so much better and is i
Off all meds.
Ann Romney. Another case. She was taking meds but because of the awful side effects, she stopped and is using alternative therapies of a natural course. Reflexology, acupuncture, equine therapy, diet...( article on healthline)
This is so awful to me because I think in literal terms. This disease seems to have no exacts. Maybe/ maybe not..
There are more indications of diet related stories on YouTube. Doesn't it make sense if we eat foods that reduce inflamation it can at least slow progression/damage. Arent the drugs saying the same thing? Won't cure.. But will help slow it down.. 2 camps saying the same thing??
And I thought only spine lesions cause certain symptoms.  Apparently not.
I'm not very " Techy" but I'll try your suggestion copy/paste to a new thread. I so appreciate the advise/help!!!
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I am newly diagnosed (2 months) with primary progressive MS.  My MRI showed areas that are now void or fliud filled.  They were refered to as "retired leasions" . Have you heard of this?  I am 58.  
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I am newly diagnosed (2 months) with primary progressive MS.  My MRI showed areas that are now void or fliud filled.  They were refered to as "retired leasions" . Have you heard of this?  I am 58.  
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I am newly diagnosed (2 months) with primary progressive MS.  My MRI showed areas that are now void or fliud filled.  They were refered to as "retired leasions" . Have you heard of this?  I am 58.  
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667078 tn?1316004535
I have heard of black holes from old lesions. That would be common in PPMS. I have PPMS and have them.

Alex
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I have had the same issues . I have had the optical neuritis and gone a few days with slurred speech . I have had stinging and the buzzing feeling in my legs. A mild gait . I am always falling and the heat will have me disoriented to the point where if I do not get into a/c I will pass out and repeat weird and odd sentences over and over and temor.
I was diagnosed with MS . When I moved to a military base they refused to keep the diagnosis that my former neuro gave me and said I had fibromyaligia . I went one whole week with complete paralysis and my husband had to bath and dress me .
None of my MRI have shown lesions or other tests have proved MS , my previous neuro who also is a well known Doctor insists it is.
May I ask what state you live in. Who you Doctor is . I am desperate for someone that understands me. I am on disability FOR MS.
Thank you !
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This is me too ! I had the optical neuritis as well and I had ONE neuro tell me that I had it , he found that I had optical neuritis and upon my office visit noticed my gait upon many other things as I had visited him in the months to come . However my MRI's showed nothing . All tests seemed inconclusive. But he was a well known MS expert and without a doubt was sure that this indeed was MS . I also was diagnosed prior at an army base a prior year ( they were unsure of a " relapse " that I had where I was completely paralyzed and weak from the neck down . I suffered tremors from the heat after grocery shopping and dropped all my food after trying to lift my foot over the threshold of my home) they concluded this due to pain in my legs and my back because I , at the time was having arthitic pain in my lower back , which they said was causing possible ( they didnt know more about Fibro then either by the way , it was " an all in your head type thing" back then ) pinched nerves possible and it was being over stimulated in my brain and causing me to think my whole body was in shut down mode and I couldnt move.
HA!! right.
I spent two weeks being bathed , clothed .. not being able to drive and yes even being able to lift my feet over a threshold of a door , they sent me to a pain specialist where they injected my back full of steriods , beta blockers , cortisone ... it was a mess.
But back to what I was saying , when I went back to Maine from where I am now ( back in the same situation... ) The doctor there took me seriously and found the optical neurits reported it , put me on rebif . The rebif was scary and it made me feel worse the next day . I did take myself off. I had two babies I had to take care of and the day after taking the shot I felt horrible I could  take care of my motherly duties.
fast forward now , I am back on a base where I am being told again , it is in my head , so to speak .... they will not EVEN look at the paper work from my speicalist in Maine . The poor man who listened to me and treated me like a person , passed away.
so now I am stuck in limbo and now my newest threat from this disease has taken away my speech. I sound like I am drunk most days. I slur and I pause before I talk. my lips are are left alomost like they have no muscle in them and my tongue flops around in my mouth . I am actively searching for someone that will take the time with me . ... and that has good bed side manner.
The doctor as San Antonio Medical , told me It was a mental conditon. He told me that I needed to get off Tramadol for my back and my legs. WHich was very funny , because after that I explained that I just had my back operated on .
I had 6 , four inch screws put in my back and a 7 inch rod put in my back . I was told by the service that I only had arthitiis . That tramadol , was the least amount offered to me by the gentlemen OUTSIDE of the service that I had a second opinion do my back. That if I didnt have my back done that the effects of my back could have left me hunched over by the age of 70 and that the leg pain ( not the numbness and buzzing ) but the stabbing and throbbing had been caused by bone on bone from my vertebrea and the nerves that were almost severed .
What I am saying to all of you ,  DO NOT take on physicians advice , do not let on Doctor tell you that THIS is what it is . Do not let them make you believe it is in your head . IT is your body and you know when something is wrong . You just do . Your family KNOWS you .... let them go to the office meetins with you , dont go it alone. I tried to be tough and do it all by myself. I didnt want to be burden , I felt like I was enough of one at home. I honestly have had enough . Our  bodies are all so unique and different and not all wave "hello , this is whats wrong with me !" on tests . Each day and every hour doctors are learning ... they are being presented with new machines and new ways to find things and interpert tests . The brain , The body and all these autoimmune diseases are soo complex . I believe when a doctor truly doesnt know what the answer is , the best answer is : its your emotions , causing you to believe you are ill . You are coaxing your body into a state of physical illness.
It is wrong. It is wrong when there is NOTHING going on in that persons life to say that to them . If they were eratic and losing their home , their wife/ husband had drinking issues .. mental issues ... its a possibility .  
I had postpartum with my son . My son is 12 .
Only stressor I have and still have is when I have something take over my body I cant control . BUT only then is WHEN I stress . I am sure that this has hit home with many of you .
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Hi Quixotic1

Thanks for your thorough explanation of MS. I have been having some weird sensations for the past year or so. It all started after a very stressful month of  program releases(I am an IT guy). We went to Barnes and Nobles one day and felt a sense of Vertigo and some sort of confusion. I thought i was having a heart racing affair ended up in ER and they did a blood test and EKG and then let me go home. MS was a distant thought for me at that time. But the vertigo, muscle twitches and funny foot sensations kept continuing. I got checked out by Optician,Heart specialist, ENT for BPPV all in the attempt to find the source of Vertigo. ENT also referred me to a Brain MRI with contrast. They found no lesions but that does not stop my erratic twitching or the blurry vision on the left eye that required me to wear glasses. Now to think about it..it may have been caused by MS. Now waiting to see a Neurologist. I am simply freaked out and mentally tired at this point. Hope find the real thing and start a treatment.
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Hi Quixotic1

Thanks for your thorough explanation of MS. I have been having some weird sensations for the past year or so. It all started after a very stressful month of  program releases(I am an IT guy). We went to Barnes and Nobles one day and felt a sense of Vertigo and some sort of confusion. I thought i was having a heart racing affair ended up in ER and they did a blood test and EKG and then let me go home. MS was a distant thought for me at that time. But the vertigo, muscle twitches and funny foot sensations kept continuing. I got checked out by Optician,Heart specialist, ENT for BPPV all in the attempt to find the source of Vertigo. ENT also referred me to a Brain MRI with contrast. They found no lesions but that does not stop my erratic twitching or the blurry vision on the left eye that required me to wear glasses. Now to think about it..it may have been caused by MS. Now waiting to see a Neurologist. I am simply freaked out and mentally tired at this point. Hope find the real thing and start a treatment.
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667078 tn?1316004535
I am sorry for your symptoms. Sometimes it can take time to figure out what is going on. Neurologists like to study thing themselves. They want to see for themselves if symptoms change or stay the same. Many of us were sent to different doctors. It took me two years and a few neurologists to get a diagnosis.

Also it helps us if you break up your writing. We have eye preoblems.

Alex
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