I'm new w/ test result questions.....

[tonyad]

Hello, My name is Tonya and I am new to this Forum. I wanted to add that you folks are a great bunch of people. You are so helpful to one another and that is so nice.
OK, now for a little history on me........
I am currently dx with;
Sarcoiosis (dx through lymph node biopsy)
Idiopathic Gastro Paresis
fibromyalgia (possibly secondary to the Sarcoidosis)
Probable MS (whatever that means)
I have had a few years now with sx of;
numbeness in limbs and left side of face, as well as fingers,
tingling,
bouts of stumbling and falling down,
internal shaking (tremors) ?,
headaches,
extreme fatigue where I miss work and in bed for a week or two at a time,
extreme weekness,(arms and legs)
dizziness,
cognitive problems, memory problems (pose a severe problem in my line of work)
Anyhow, have been to (2) neuro's and (1) MS neuro.
Have had all blood work from cbc, lyme, lupus, hep a,b,c, vitamin deficiencies, sed rates,
and some other off the wall, never heard of tests. All is good! none came back bad.
Now for the MRI's:
12/07/08
Findings; (w/wo contrast)
The study suggests that there are minimal areas of altered brain parenchymal signal intensity. the most definite appears to be a small punctate area of cystic change in the white matter of the left frontal lobe. This measures 2mm in dimension.
More questionably, there is a slight prominence to perivascular spaces or small linear areas of altered signal intensity within the white matter of the left and right parietal lobes. Additionally, inversion recovery sequences suggest that there may be several poorly- defined vague areas of slightly increased signal intensity in the white matter just deep to the corticomedullary junction of the left frontal and left and right parietal lobes.
It is conceivable that multiple sclerosis could produce this appearance. The etiology of these areas are not normal for a patient of this age.
Impression;
findings suggests that there may be several areas of altered signal intensity within the brain parenchymal of both cerebral hemispheres.

Second MRI
04/01/08
Findings;
There are a few, punctate-to-small foci of abnormal signal intensity within the left and right corona radiata adjacent to the atria and posterior body of the lateral ventricles.
Impression;
A demyelinating process cannot be excluded.

Thank you in advance for all who reply with your thoughts ;)
And Quix, I can not wait to hear your thoughts.........

[cat1203]

i get shots in the head for the pain, i have a tumor in my head and i have MS and MG, I don't have much of an immune system and my body rebels against me.  The shots in my head and in my back make me able to walk and it helps the pain.  They are steriods and nerve blocks.

I don't really know so many things can mask other things.  yes, if your sed rate is not up sometimes it shows negative it doesn't mean it is not there it just hides for a while until the next time.  

The mri can show lesions sometimes then the next they seem to disappear.  The contrast mris are better if you can take the contrast.  They can detect the lesions better for spotting MS.  They can also show temporal arteritis and vasculitis.  Your brain is a funny little creature it can tell just about everything wrong with us.  Did you know the average human only uses about 10% of his brain functions.  So much more if only we could harness the brain's capabilities.  We could heal ourselves.  Wouldn't that be wonderful?

[tonyad]

Thanks so much hun for the concern.  Yes, the IV steroids ar amazing in how they helped me out.
Cat, thanks again for the response.  Shots in the head?? Are you kidding.....do you really get shots in your head ? If so what for.
A quick question for you....if you just had IV steroids an are supposed to be getiing a LP will the steroids effect the results of the LP. I also heard that if you are not in an active flair, you may get a false negative...Any truth to that??
Thanks dear,
~T

[cat1203]

I didn't know what was going on with you, i am sorry, i hope you feel better aren't steriods great you feel like you can climb a mountain and eat one too.  be careful though they can have bad side affects but i think they are worth it, i am not in a wheel chair now i walk even with the pain.  

i don't like the shots in the head though.  i say again, i am glad you feel better.

[tonyad]

Bump... hope that is OK.
I answered the questioned I was aked and just thought I would throw this back out there. Hope this is OK ....

Thanks,
~Tonya

[tonyad]

Thanks everyone for responding today.
I actually just got out of the hospital on Friday evening. I was admitted on Wednesday for the pain in legs along with the weakness and feeling soooo heavy. I also could not do much of anything except for nap, nap, nap. The pain radiated up to my lower back and around my ribs.

Along with the pain in legs, low back, and ribs, I had this strange sensation of tightning?.. around my torso (tib) area. My left arm was also hurting and very weak. They gave me IV steroids and WOW!!!  It helped out I would say 60 - 70 %. I got so much relief in my legs and ribs...:)

Believe me when I say that I have had similiar flairs before but none where to this extreme. They did yet another MRI of head, c-spine, and T-spine. along with more blood work. The head MRI showed the same lessions perhaps a few more as the one done a couple months ago. The one that I had a couple months ago was in a Tesla3, the one I just had was a Tesla 1.5 which is not nearly as powerful and therefore does not show as much. I did have contrast for head but no contrast with c-spine, or t-spine. Should they have used contrast for the spine?  Reprt on that says "no bulging disk noted, normal MRI for spine". HUH??? Blood work was ok also.


Lala; No, I am 37. From the reading I have done I am not even a suggestive candidate for ischemic changes. I do not nor have ever had high B/P, not a diabetic, my cholesterol is low, I am not overweight.........My guess Is that they throw this ischemic **** out to everyone (limbolanders).
I mean is it that  common that SOOOO many people have this ischemic stuff. I would think not!  At your age 47 (from what I have read) you should not have all these lessions in your head! That is not normal.

Ollie; Thank you so much for your prayers :) You are so kind.

AMO; They did try and go the route on neurosarcoid because it can mimic MS a great deal, but said that my blood work was not indicitive of neurosarcoid.
I go back to another neuro this Friday.

Thanks again everyone for posting. You all are GREAT!
hugs,
~Tonya

[AMO]

hi tonya,

i hope today you have felt somewh at bettter.

With your hisotry of sarcoidosis, have they not intertained thte dx's of NEUROsarcoidosis??
I  am certainllly  not doctor, but inless they can say it does not fit aaat all, i would be thinking that was high in the list.

i wish you well and finding your answers soon. amo

[sllowe]

Hi lala47!

Welcome!  Can you copy what you've posted here, and go the the main page and "post a question" it will be so much easier for all of us to give you a big welcome and provide our thoughts!

Let us know if you have a problem ...we'll walk you through it - k?
ttys,
Shelly

[OllieO]

I am absolutely amazed that doctors can sit there and listen to you talk about all your scary symptoms and then say it is nothing.  I would think that the combination of symptoms and the lesions would lead them to give you a diagnosis!!  I know the medical world is extremely complicated, but you obviously have something!  I am sorry you have gone through so much!  My prayers are with you.

OllieO

[lala47]

I hope you don;t mind me asking your age.  I'm just curious.  My neuro. said that my lesions were prob normal changes for age.  I am 47.  I have had and cont to have some simular symptoms.

Thanks,
lala47

[tonyad]

First off, Thank you very much for taking the time to look over my MRI report.
OK, let's see if I can put this in some kind of order. The very first time I remember having anything weird (unexplained) happen to me was in my 20's. The skin on my arms escpecially left, was over sensitive, meaning that whenever wind blew on it or when water touched it it had a terrrible sensation. Kind of like burned or just real sensitive or like I said over exaggerated (sp). I mentioned it to DR but he brushed me off. It lasted for about maybe 3-4 weeks?

A couple years went by then I was unsteady with walking and EXTREMELY dizzy. Tingling in hands. Burning in feet.. Fatigue, not just tired but exhausted! DR dismissed once again as nothing.

Then in mid to late 20's Balance way off, tripping, Dizzy to the point I had to crawl on floor and would even tip while crawling (this was NO fun and quite scary)! Doctor put me in hospital for a couple of days and did alot of blood work NO MRI, NO CT. Did cardio work up........blah, blah, blah, all came up good and went home. Oh ya, did find MVP(Mitral Valve Prolapse)  which I know is VERY common in women and never had to medicate for it.

About a year later, The lymph nodes in my neck where extremely swollen. Went to Doc had a CT done and the ******* radiologist had the nerve to come out and tell me that I had Lymphoma! WHAT ??? Needless to say after a biopsy, turned out to be Sarcoidosis in lungs and lymph nodes. Never had a problem since. Had a MRI of brain w/o contrast all looked good. No lessions :) Also around this time dx Fibromyalgia.

Fast forward...to early 30's All the sx started to hit me......Fatigue, numbness. tingling, dizziness,sharp shooting pains ( that had also taken place before) some kind of shaking that only I can feel on the inside of my body (internal tremors?), muscle twithching, Spasticity ( has gotten progressively worse) and then comes the cognitive stuff. like I said, I am on extended FMLA because of the mistakes I was making at work. The kind of work that I do I have to be at my best and alert at all times or it could pose a serious problem!

Got the first MRI which I posted, and now have some lessions. this was done due to a sever (flair) or whatever it was. I was down and out with fatigue, pain, numbness, tingling,,weekness. It took me about 2 1/2 months to get better.. All blood work from CBC, vitamin def, Lyme, lupus, Hep A,B,C, Syphlis, HIV, and about 10,000 other blood test (ok so I am exaggerating), Also had TB test (have to have that anyway every 6 months at work anyhow).

Then had 2nd MRI which I also posted and have lessions. This was done because of lingering sx from the (flair) or whatever it was that I had a few months prior.

Let me add that I DO NOT have high bp and have never had high bp. It's actually on the lower side. I am not diabetic, do not have high cholesterol (also on the lower end of the average range). I have always been an active person, eat good, do not smoke or drink.

So, here goes.....the neuro says "your MRI looks good, it is probably from ischemic insults or something like that."  We see these spots as we get older everyone has them"... WHAT?????  Are you kidding????  From what I have read I do not fit the criteria for this to be labeled ischemic (age related) lessions.

Please do not get me wrong...I am not saying that I have MS. Nor do I want it, but I feel like I need some answers.
The neuro will not rule it out even though he is saying this is just probably ishemic changes, will not release me back to work because he is not ruled out MS. I would like an answer though about these lessions......I mean could they really be normal?   Ischemic - lack of blood flow due to obstruction of the in flow of arterial blood??  
The other test I just had done was when they take a doppler and look at the arteries in my neck (corotid duplex scan) it was negative. I also had Transcranial doppler looking at multiple depths of the anterior, middle and posterior cerebral arteries.

FINDINGS: vertebral arteries and basilar artery were within normal limits.
IMPRESSION: The intracranial arterial tree is unremarkable, no evidence of vertebral basilar stenosis.

Doesn't all of that testing as well as my low risk factors rule out Ischemic changes?
I hope I did not bore you to death. I tried to make it as short as I could. I guess I am worried that if this is ischmic changes (which again i do not fir the criteria for) am I now at a high risk for stroke or something......even though I do not have the risk factors..

All of this has just exhausted me mentally... I hope that you or someone can give me some advise. I know I could see yet another doctor but one problem with that is i have used all my annual time, vacation time, and leave time from work and now I have no money coming in and my insurance (BC/BS) is dropped.
Thanks again in advance for all thoughts,
Medications given to me are;
provigil
baclofen
amitryptiline
lyrica (I do not take)
alprazolam
Right now I am dealing with TERRIBLE leg pain and tightness, as well with this tight feeling around ribs and ribs are kinda sore like I excercised to much when this happens. And I guess because of the constriction and tightness in my thighs perhaps that is why I am having low back pain???? I don't know.
Thanks again,

~Tonya

[Quixotic1]

Well, you are going through a lot here.  Your symptoms are certainly consistent with what is seen in MS (and I always talk her in the context of MS, even though no one can diagnose anything online).  But, we need to hear how the symptoms appeared, lingered and if they resolved, to get a feeling for any attack/resolution or relapse/remitting pattern.

The radiologist did a remarkably thoughtful interpretation of your MRI.  Yes, puntate (pinpoint) lesions that are mostly subcortical does suggest microvascular disease.  This would be like untreated high blood pressure or migraine disease or diabetes.  But, he/she is absolutely correct.  It does not at all rule out MS.

At this point it falls to the neuro to put together your history of how the symptoms acted along with the results of what should have been a very thorough neuro exam.  The exam can reveal if there are physical signs of central nervous system damage.  Those put together with the MRI give the most information.  Have you had a Lumbar Puncture or a Visual Evoked Response?

What are your neuro's thoughts at this point?

Do you know what strength MRI your films have been done on?  Also, I don't see a very important part of the work up, especially if you are already at the point of calling this "Probable MS."  This is an MRI of the cervical and thoracic spine.  Often these provide all the remaining evidence that is needed.  I think that should definitely be your next step.

Probable MS is an interim diagnosis when their is a suggestive history and exam for MS but there is not enough information to make it a "slam-dunk."  O will bump the explanation of the official "Rules" for Diagnosing MS.  These are called the McDonald Criteria.  After you read that you will have a better idea of what Probable vs Definite means.

The description of "patchy areas of hyperintensity" is often what real lesions look like on an MRI that is not strong enough to pick them up clearly.  That's what I had on a 1.5Tesla MRI of my spine.  With the higher power 3 Tesla machine those patchy, ill-defined areas were clearcut, goodsize MS lesions.

The next bit of info I would like to see is an LP.  This also can add enormous information to the story, though it is not always positive early in the disease.

How long are you into symptoms that might have been MS?  Why don't you tell us the whole story in order?

Finally, there is a big difference in this whole process between making a Definite Diagnosis and making the Decision to Treat with Disease Modifying Meds.

I'll be looking for more info.  Welcome again,

Quix

[sllowe]

Hi Tonya,

Welcome!  These symptoms sure are life altering.  I'm so sorry you are going through this.  I too, cannot interpret the MRIs, but I was more interested in what the Dr. is mentioning to you while they work toward the dx.  Seems this Dr. is very thorough so far, and it's not an easy disease to dx, so I'm not surprised that you haven't gotten a definite yet.

To comment on just one, the fatigue, most all of us can relate too.  And, as you are experiencing, there is definitely a difference between being tired, sleepy, and "this" fatigue.  It's horrifying, and wish I could say something to make it better.  It's frustrating when there is nothing you or the Dr. can do right now.  You want answers and something to make you feel better, but it just doesn't exist really.  

I don't want to sound like a downer, really I'm not, just want to share w/you some compassion.  For over 3 months when my  problems started, it was all I could do to drive to work, come home, strip, climb in bed, only to do it all over again.  I neglected everthing, and everyone to get into that bed because I couldn't stay up.  I wouldn't wake up at all all night, and when my husband would wake me up for work, I felt like I had not slept.

After about 3 months, the fatigue did improve, and now it's just different than last year, thank the good lord.

I'm so glad you've come our way, especially  now when we can help keep you occupied while you are in this limbo work up stage.  I look forward to helping you along.

ttys,
Be well,
Shelly

[santana8]

I had a sudden onset of vison disturbance in April, 2006 while standing in the grocery store.   A lot of hospitals, and doctors later ( the list is too long), They found a visual field defect and sent me to a neuro finally about eight months after onset.  The MRI showed 10 white matter lesions on my brain.

First neuro said MS after just this one scan done without contrast and a possitive VEP(visual evoked potential).  He had not even taken my blood. He sent me out of the office with a bag of  Rebiff, an MS medicine.  He was not interested in ruling out other mimics and the whole thing felt like it was too rushed to be acurate!  So I got a second oppinion!!

Second neuro redone MRI this time with and without contrast- showed no change to the 10 lesions and no enhancement.

Blood work- all normal

Spinal Tap- negative, with no O banding

This neuro said there was something quirky with me!!!!  He  started repeating the MRI's every  six months and has continued to do this up to this point.  All showing no change, no enhancement, and no new lesions. He says that all 10 lesios look to be the same age indicating that they happened at the same time. His thoughts were that this happened in the attack in April 2006 when I presented.

After nothing new showed up he gave me a DX of ADEM, accute demyelinating encephalomyelitis. This is a monophasic (one time) illness that bears a striking resemblance to MS.  Infact it is often indistinguishable from a first attack of MS in the acute stage.

In ADEM, the myelin sleath is damaged in the same way as it is in MS. The only difference in these two illness is that in ADEM there is usually only one attack with no recurrance and in MS there is recurances.

So since it was eight months until I could get an eye doctor to believe that I couldn't see and give me a visual field test, and then get me into a neuro, the acute stage had passed and anything that may have been in the spinal fluid to confirm ADEM was already out of my system.  It was also too late for steriod treatment, so instead of about a six month recovery of my vision, it has been two years of very slow recovery and still recovering!!

This place has been a life saver for me as a place to gain information, support and dear friends!!!!!!  I hope you will join our family and find that also!!!!!!!

Hugs,
~Santana~

[Freespirit24]

welcome i am no expert here and in same boat as you going thought trying to find out what is wrong with me. I do not know what to tell you but suggest if you feel unhappy with your neuro get another one even just for a second opinion.

I wish you all the best and wish i had more answers for you i know just how frustrating this is.

Hugs

sarah

[tonyad]

Thank you Santana, for the welcome. All of you are so kind and helpful. I am so glad I found you all :)
How lond have you been in limbo? What are your MRI's showing? Not to sound ignorant but what is the dx ADEM?

~T

[santana8]

Hi, and Welcome to the forum!!!!!!  I do not have an MS Dx ,  as of now my Dx is ADEM! My neuro has been doing repeat MRI's of the brain every six months to watch for new lesions suggestive of MS, and so far none have been seen.

I will not be of much help in explaining your MRI results because I know little about them!  Hopefully some of the more experienced members will come along soon to try to explain some of these findings.  Just wanted to welcome you and let you know that you have found a good place here for information, support, and freindship.

~Santana~

[tonyad]

As of the last 2 weeks, i have been going through something;
Woke up early one morning and could hardly move my arms or upper body from waist up. Hubby wanted me to go to ER but I wanted to wait and see. After a while I could move upper body limbs but were VERY heavy. I had this tight feeling around my ribs and stomach are. Arms and legs very heavy to walk. Slept pretty much the entire day.
Next day still fatigue and twitching muscles in legs and left arm. Still fatigued.
Anyhow long story short, I have been like this since then. I have EXTREME pain in my legs. It feels really tight w/sharp shooting pains, along with a feeling of overworked, fatigued, tight, and pain, pain, pain. I wish I could descibe it better. they are very week also.
thanks again for letting me share this with you all :)
Also, please excuse any type errors as my fingers do not want to cooperate.
I have been out of work on extended FMLA for over (3) months now. the MS neuro will not release me to go back to my job but will not give me a definite dx only probable MS.
I do not understand!