Hello, I am a 29/M. In October I started having red/teary eye with sinus pain. PCP thought sinusitis. Later - tingling in left arm and leg, foggy state, headache on each side of
headHead and face reconstruction
Head injury
Head lice
Indications of head injury
Radial head injury. After many CTs and MRIs and many other doctors - everything OK. Did B1, B6, B12, sinus CT,
headHead and face reconstruction
Head injury
Head lice
Indications of head injury
Radial head injury CT, brain MRI in December, ENG in February - all negative. Finally did another MRI in March with some alarming news. Now I am freaking out because I've been referred to the MS center at UCSF. Here is the summary:
Findings:
The ventricals are
normalNormal saline flush in size and symmetric in the midline
without evidence of mass effect or shift. Cortical sulci and subarachanoid spaces are symmtric and
normalNormal saline flush. There are two tiny white matter lesions adjacent to the trigone of the right lateral
ventricleUltrasound, normal fetus - ventricles of brain
Ultrasound, normal fetus- ventricles of brain, seen only on the coronal FLAIR sequence. There is no contrast enhancement of these small lesions and no other contrast enhancing lesions are identified. No other abnormal foci of increased or decreased signal intensity are seen anywhere intracranially.
NormalNormal saline flush gray/white matter differentiation.
Impression:
1. Two tiny white matter lesions adjacent to the trigone of the right lateral ventricle without evidence of surrounding edema or mass effect and not demonstrating contrast enhancement. The largest of these measures about 4 mm in size and the second measures 2 mm. These lesions are nonspecific and could represent some chronis gliosis or scarring. Early demyelinating disease cannot be entirely excluded.
2. Otherwise normal appearing magnetic resonance imaging study of the brain.
Any ideas? Thank you!
One thing that I have learned with diagnoses and illness is that pathology/pathogenesis is most important. Know your past, know the present and keep track of it. Such pathology and doctor/patient communication leads to a thorough diagnosis.
I think that jumping to MS is a bit out of bounds here. These lesions are non-specific and could be caused by a number of variables. These variables can also cause the same symptoms that you describe.
There is, of course, the infamous and unpopular Lyme disease. There is Vasculitis, Syphilis -all of which are commonly undetected. It would be worthwhile to look into other options.
I am 28/M. I had many lesions on both sides of the brain and in the c-spine. All round and ovoid and some which enhanced. Doc said, "YOU HAVE MS!" Well--after a nervous breakdown, and a ton of my own research-I found that I in fact had LYME DISEASE. But, in my opinion, much to be argued I am sure-Lyme is MS. So, I am now, after losing my ability to walk and over 83 symptoms ASYMPTOMATIC.
You may want to do a couple of things: 1. Google "LDN" or "Low Dose Naltrexone."
2. Go to www.lymenet.org and do some research.
3. Do not marry a diagnosis and do not let it own or consume you.
4. Remember that you are in charge and that doctors are here to help you-they do not seal the case.
5. Stand up for yourself and learn everything you can until a true diagnoses is confirmed and substantiated.
I want to make it clear that I walk now. I am as I was before with only 1 slightly annoying symptom (internal vibrating). I was numb, I was tired, I wasn't walking, I was dizzy, I was burry, malaise was my life. I had myclonus and clonus general---to name a few!
A positive outlook and being very strong and fighting for myself too helped in my healing.
You can e-mail me anytime if you want to talk about this stuff. I can tell you about my pathology system (63 pages) and how Yale upheld my self made diagnosis. It may help you out.
My peace.
In Oct. MRI showed 1 lesion.......Had follow-up MRI in Jan., it showed a total of 5 hyperintense lesions, (that was almost 3 months ago, for all I know there could be more by now)
I also have severe headaches, but what I would like to know is.......Does the headache cause the lesions or do the lesions cause the headache????????
All my other tests were basically normal, initially Neuro was thinking MS, now he says he doesn't know what it is, I have been tested for basically everything, and nothing has really shown up. Possibly Microangiopathy?
Bottom line: Try not to get all worked up over the MRI results......when I first heard that I had lesions, I almost wigged!
But after reading online, especially here, I've learned that it's not that uncommon.....apparently there are lots of us with lesions on the brain..
I'm not saying it's normal, just that there seems to be a lot of people in the same boat.......similar non-specific symptoms, with no definite diagnosis.
Hang in there!
If the lesions have anything to do with the headaches, then, the headache is the cause of the lesion or the lesion is caused by a condition where a symptom is headache. Hard to tell.
I have read many studies that say that so-called MS lesions are found in ats of many dead patients who never had symptoms or a disease of the CNS. Lesions are always torally non-specific. For example; what I have learned in MS is that though they are suspicious for MS plaques, space and time, is a really big deal. They watch how they progress, what they do-and not uncommonly MS diagnoses are removed. This has happened more than a few times per MS specialist.
Hope I helped.
I will also agree that Lyme is becoming more commonplace even though it is STILL difficult to diagnose and I agree that it should never be overlooked as a possibility when looking for a name to be attached to a condition. I will even agree that if left untreated, Lyme can advance and become devastating to your body. But if precautions are taken before and after possible exposure, Lyme may be avoided all together.
I wish I could say the same thing about MS. If there was something that I could have avoided to prevent my MS, I would have. But we (MSers) do whatever we can to lead as normal a life as possible. It is NOT a death sentence.
All that being said Tsarrio, the lesions should not be swept aside. And there is a reason for the symptoms you are having. Despite the frustration I am sure you will suffer before that reason is found, don't give up looking for the answers you need. Regardless of the diagnosis, once it is made, it is a relief. Only then can the treatments you need to cure/manage/cope begin. Good Luck finding the answers you are looking for!!
Now, go back, and read what I wrote.
First and foremost-I am sorry that you have MS. I went thru the terror of it myself. We have differing views.
Point in fact: most people do not know that they have Lyme when it is acute and therefore it progresses to "Late Stage." Thus-MS (which as you know is a variable term in concrete medicine).
Point in fact: More and more studies are showing that MS is enviro and that supressing the immune system is stupid in its case. Check out LDN and Montel Williams..he is basically asymptomatic, and many many more.
Point in fact: A Lyme diagnosis is almost never concrete. So, I could have true MS, if, there is such a thing.
Please, do not, be hurt by my opinion. It is not to discredit people, and, I am not telling TESSARIO to ignore the lesions. I am telling him not to have a nervous breakdown.
MSers, as you say, as well as Lymies, as we say, do have a tendency to marry the dx. This is not mentally healthy-at all.
We must all fight together. We must have our own opinions. We must make educated guesses.
Please, don't we this way. You and I both are waiting on a powderkeg for cures.
Peace.
John.
In your dreams. Montel talked about going from power squatting huge amounts of weight during military training to having pain while doing so. Shin and leg pain. Pain which kept growing. Finally it got so bad, he accidentally burned his legs severely because he could not tell the pain from a nearby heater which scared his legs. He went to a lot of doctors for almost two decades, I think he said, with symptoms. He now says even percocet does not kill the pain of his MS and he uses marijuana for pain control.
I would hardly call him asymptomatic, he's suffered a great deal. Just because he is a very driven personality who happens to have a regular TV show by his natural nature of being an alpha type personality it does not mean he is asymptomatic. A lot of us have symptoms and standing next to me you might think not a thing is wrong with me.
JFK had a lot of symptoms, too, and hid them very very well. Different disease, similar strategy.
I vibrate internally and have paresthesias of the hands-SO-I know what it is like to have my symptoms unnoticed. I also was in a wheelchair.
I am fine now and have been for a long long time.
BRAIN WITH & W/O CONTRAST
2/15/06
INDICATION:
Evaluate for MS. Parethesias, weakness, and visual changes.
TECHNIQUE:
Multiplanar T1, T2 weighted and FLAIR sequences were obtained prior to intravenous contrast. After intravenous Omniscan, T1 images were obtained.
FINDINGS:
There is no MRI evidence of midline shift or mass effect. Multiple round to ovoid foci of increased T2 weighted signal are noted in the periventricular and deep white matter of both cerebral hemispheres. Some foci within the centrum semi-ovale are oriented perpendicular to the plane of the corpus callosum and cingulate gyrus, suspicious for MS plaques. More ill-defined increased T2 weighted signal is noted in the periventricular white matter. Faint nodular areas of increased T2 weighted signal are noted within the corpus callosum. A small, 3-4 mm ovoid focus of increased T2 weighted signal is seen within the posterior aspect of the left middle cerebellar peduncle.
After IV contrast, at least five of the presumed plaques appear to enhance, the largest seen in the right frontal white matter, measuring 8 mm in maximum AP dimension.
Normal signal void is demonstrated in the major vasculature at the base of the brain. Visualized paranasal sinuses appear clear.
IMPRESSION:
Multiple round to ovoid foci of increased T2 weighted signal in the periventricular and deep white matter of both cerebral hemispheres, as well as within the left middle cerebellar peduncle and corpus callosum. Several lesions appear to enhance after IV contrast. Findings are non-specific, but are suspicious for MS plaques. Other etiologies, such as Vasculitis or Lyme disease, could produce similar findings. Clinical correlation advised.
--
CERVICAL SPINE WITH & W/O GADOLINIUM
4/05/06
HISTORY:
Chronic posterior neck pain and stiffness w/ hand parethesias.
TECHNIQUE:
Multiplanar T1 and T2 weighted sequences were obtained before and after intravenous gadolinium administration.
FINDINGS:
The bone marrow signal appears well maintained. There is reversal of normal cervical lordosis. Disc space heights appear well maintained. Not acute verterbral body compression fracture is demonstrated. The carniocervical junction appears unremarkable.
Saggital STIR sequence shows extensive signal abnormality within the cervical spinal cord, throughout the entire cervical spine. No cord compression is demonstrated. The neural canal regions appear ample in size.
Gladolinium-enhanced imaging shows no abnormal enhancement.
IMPRESSION:
Extensive areas of hyperintense signal abnormality within the cervical spinal cord, most consistent with a demyelinating process. No enhancement was demonstrated. Please see report from MRI of the brain.
Thanks all
Migraines are really impacting on one's life, that is a big problem with them, and like other problems, it matters how frequently, how bad and what the associated symptoms are--different for each person, just as MS or Lyme, where not every case is debilitating, and medications can really help. It might be helpful to remember that people don't usually die from these problems, but there are plenty of awful things out there that take out a beautiful life without much warning, from illness to car accident.
One more thing on the migraine: I wonder if maybe the reason for the hyper intensities is micro-strokes from a patent foramen ovale (PFO). This is a "hole in the heart" that we all have at birth, and it closes in most people, but about 1 in 4 of us it doesn't close, and its been in the news that 65% of migraineurs have the hole, and postulated that tiny emboli are formed and cause some blockages up in the brain. Plus, migraineurs are more likely to have strokes. Interesting...what does it mean for what to do? I can think it means do your best at modifying behavior to cut down all stroke risk factors possible--good weight, avoid hypertension, good diet, good exercise, & avoid migraine triggers--here's a thought: maybe its changes in the heart rhythms that certain triggers cause and then the migraine follows. I have also wondered about daily aspirin as a help, and fish oil plus calcium for good blood vessels.
Migraines are really impacting on one's life, that is a big problem with them, and like other problems, it matters how frequently, how bad and what the associated symptoms are--different for each person, just as MS or Lyme, where not every case is debilitating, and medications can really help. It might be helpful to remember that people don't usually die from these problems, but there are plenty of awful things out there that take out a beautiful life without much warning, from illness to car accident.
One more thing on the migraine: I wonder if maybe the reason for the hyper intensities is micro-strokes from a patent foramen ovale (PFO). This is a "hole in the heart" that we all have at birth, and it closes in most people, but about 1 in 4 of us it doesn't close, and its been in the news that 65% of migraineurs have the hole, and postulated that tiny emboli are formed and cause some blockages up in the brain. Plus, migraineurs are more likely to have strokes. Interesting...what does it mean for what to do? I can think it means do your best at modifying behavior to cut down all stroke risk factors possible--good weight, avoid hypertension, good diet, good exercise, & avoid migraine triggers--here's a thought: maybe its changes in the heart rhythms that certain triggers cause and then the migraine follows. I have also wondered about daily aspirin as a help, and fish oil plus calcium for good blood vessels.
Well, they're sure now. More and bigger lesions. Worsened symptoms Now, instead of Avonex, it's Refib. I got the Refib suitcase info pack from my doctor. That is daunting in and of itself.
I'm just scared. Scared and very, very exhausted. I'm also mad as hell, too. I am so afraid this will keep me from the things I love the most. I'm physically fit and enjoy horses and exercising. As of late, I can barely ride for 30 minutes without getting tired - I know my horse must be grateful because he gets groomed for doing little work.
Just scared. I'm new to this. I have no flippin idea what to expect and until my insurance pre-cert comes back, I don't even know if I can afford this Refib. There is absolutely no cost information that I can find online about this drug. What gives????
I don't guess I have questions. I just feel very much in shock and when I'm not in shock I'm either grieving or pissed off. I also have lupus and antiphospholipid syndrome so don't have "just" ms, as if that wouldn't be enough by itself, huh??? See? I'm pissed. How do you quit being pissed off?