Advice needed desperately!!! Is it MS?

Last year I began having neuro problems which we assumed were  Fibromyalgia related. Despite treating this aggressively my neurological symptoms worsened: severe memory loss, pain all over, balance and coordination problems,muscle weakness, etc. In December I had an MRI of my brain done. The report states:
In the lateral aspect of the frontal lobe on the right there is evidence of an approximately 4-mm white matter hyperdensity. This was observed in the coronal and on the axial T2. A second white matter hyperdensity was identified within the anterior aspect of the left frontal lobe. This was also identified on the sagittal. In the coronal images, this lesion was not identified. No other white lesions ae identified. It should be noted that due to the great amount of artifact from the patients braces, a great portion of the white matter in the temporal lobes was not able to be evaluated. A tiny hyperdensity is noted in the anterior corpus callosum on the sagittal flair.
I had a new MRI done in May. The neurologist said the plaques were gone, was a normal MRI. He said the only time these spots can just disappear are if they are caused by MS, but he doesn't think I have MS because my other symptoms "don't fit". He thinks depression is causing my problems. He referred me to OSU. The other day my daughter bumped my foot. It sent electical type pain up my entire leg. My whole leg went numb and I started having muscle spasms and twitches everywhere. Went to the Er, bloodwork,ekg,Ativan,sent me home. OSU can't see me until DEC. I can't wait that long for help. Need advice!

[CCF-Neuro-M.D.-CS]

I agree that a second opinion is reasonable, and I would recommend that you see a MS specialist. If OSU means Ohio State University, they you may wish to see one of our specialists at the Mellen Center (our MS center). They can be reached at 216-444-5559. I am not certain that you have MS, but due believe that these spots need to be investigated further. Good luck.

[lmroswell]

Do or can abnormalities seen on an MRI disappear with MS?

[tiasha]

I contacted the Cleveland Clinic and am scheduled for an appointment in early August. I should have contacted them a long time ago.

I was able to get in to OSU early. (Ohio State University). I asked if they wanted me to bring my films from the previous MRI's. They told me it wasn't necessary. I took my original set just in case.  

I wasn't too impressed with the neurologist. Of course his opinion was biased before I even walked in the door. When I first started having problems it was after a fall and pain was my biggest issue. Pain kept me confined to the house and I was unable to do anything. My first neurologist sent me for a neuropsych exam. The results of that said that I was severely depressed. I did not agree with the results. No I didn't go out anymore, no I didn't associate with other people, No I did not enjoy life. But it wasn't because I was depressed! It was because I was in PAIN!!!I have since found a great pain management Dr. who has changed my life as far as the pain is concerned. I am able to get out and enjoy life.

Anyway, the neurologist at OSU found a few more plaques that the original Dr. missed. He needs to see all of the other films. I have to get all of those and he wants to see me back in 3 months but I could call him if things got any worse.

[hewie]

Tiasha...

oh... oh... oh....!  HOW I WISH DOCTORS WOULD L  OOK MORE AT THE PATIENT FIRST and  THE LAB RESULTS 2nd...!  (ps as this is long, I do want you to know that ....most... Cleveland Clinic docs are very good... so as not to discourage you...=)

WE ARE NOT LAB RESULTS ON A PAPER... OR ON FILM...!  we are people coming to them (sometimes risking losing job, etc. finanacial harship, risking insurance companies wanting to drop us even at times!, risking AGAIN going to yet another doc in a quest to find symptom relief [pain or whatever it is!]  ... only to be told...." Well... your labs look ok or not too bad".... and then to be asked..."Are you depressed?"  "How are things at home?" etc...  "I think a lot [or a lot] of your problem is just stress." "TAKE THIS PILL"......They think we must be hypochondriacs [ ESP. IF YOU ARE A FEMALE...=[  because we do the natural human thing of going from doc to doc to try to find out why we are hurting... (I'M NOT A MASOCHIST!) and then [TOO OFTEN] we are not followed up on or even if they do refer us to yet another doc - it is months in the waiting...cause the labs did not support our symptoms... hmmmm I've yet to see lab results suffer....!   I AM NOT A LAB RESULT...!

IN THE MEANTIME....  WE ARE SUFFERING...!  SO.............. THEN ... H... E.... DOUBLE HOCKEY STICKS... YES!  WE DO GET DEPRESSED & FRUSTRATED after a while... BECAUSE OF THE PAIN & SUFFERING...!  

I want all doctors to KNOW this......  I.... AM..... NOT.... A.... LAB.... RESULT...! I came to you and spent money, time, time off work [whatever your circumstances are] because I am suffering ----- so, please, PLEASE, look at me and what I am telling your 1st and FOREMOST... and labs secondarily...
I'VE YET TO SEE THE SYMPTOMS JUST POOF!  DISAPPEAR JUST BECAUSE THE LAB WORK DOES NOT SUPPORT THEM...!  DO THE HIPPOCRATIC OATHE THINGY AND "FIRST DO NO HARM..."  SO much needles harm and pain because doctors too often do not LISTEN, REALLY LISTEN, to what the patient is trying to tell them...

I AM NOT A LAB RESULT AND NEITHER IS THE SUFFERING FOR WHICH I CAME TO YOU, DOC, A LAB RESULT....  arghh

Keep trying...Tiasha..! I went to the Cleveland Clinic last Thursday - told the doc there this was my last hope... I FEEL [really feel it physically & have told this increasingly to doctors] LIKE I'M DYING... and this time at that appointment... I FINALLY FOUND A DOCTOR WHO WOULD LISTEN!  REALLY LISTEN...{and maybe even was a little incredulous that I have not been treated for symptoms despited numerous er visits and abnormal mri's, eeg's and blood work [ha,ha.. the labs- tho abnormal - just didn't fit quite right..sheesh..] Hallelujah.!  Tho the pain is still very much there & I wonder if it is not too late.. [i am  now constantly in pain and losing weight] ... I have some hope again ...

TO ANY DOCS WHO MIGHT READ THIS --- YOUR PATIENT COMES TO YOU BECAUSE OF PAIN & SUFFERING... WHETHER THE LABS SUPPORT THAT OR NOT.... PUT YOURSELVES IN THEIR SHOES AND TRY, PLEASE TRY.. TO...  SHOW... EMPATHY... Be KIND & GENTLE in dealing with them... they are already suffering...they don't need more... and you'll get a lot better response from them....!

[debscrap]

Tiasha,
I also went to OSU because of an abnormal MRI and was very disappointed with the neurologist there.  I was wondering what neurologist you seen at OSU.  If you would like to respond to me, please email me at ***@****.  Just curious of who you seen.  I am at a lose of who to go to.  Your MRI results sound alot like mine.  I also am wondering who you are seeing at Cleveland Clinic and would love to hear what you think of them there.

[tiasha]

I am wondering....

I know no one but the Dr. probably understands what those results mean. But it did say in there that the temporal lobes were not able to be evaluated. I have orthodontic braces in my mouth and on the MRI films that area just shows up as a big black spot. NOTHING can be seen. From what I have found on the internet it seems that this is the area of the brain that affect memory and cognitive abilities.

At this time I think my memory loss is the worst thing I am dealing with. I can't even follow a simple conversation. Last night I had my husband explaining to me how the presidential election worked because I just can't remember. It made sense when he explained it to me. But this morning I have no clue what he said to me!

Could it be that this area of my brain is filled with plaques and we don't even know it? Why do the Dr's not seem at all concerned about finding out what is going in that area of my brain. One time the Dr mentioned having a new MRI when the braces are removed. That is at least another year away. Meanwhile I continue to get worse. I have already spoke to my orthodontist about this and he would be glad to remove them and put them back on if it would help.

I wonder if in my case if I still have the braces on if a CT scan would possible show more in that area than the MRI. Does anyone know?

[ozlady]

Oh, yes, I so agree with you.  I have been told countless times that my short term memory loss, and, of course, chronic fatigue, have been caused by myself, because I am depressed!!!! Because i won't accept that I am a stroke victim-- disabled, with short term memory loss, and chronic fatigue.
Yes, these doctors, and so called specialists have absolutely NO  imagination, if they only put themselves in the patient's position, and realised that chronic disability or pain (including heartache after loss), naturally is going to take the joy out of life, and cause that coverall diagnosis DEPRESSION.

Sorry to all, but it has been impossible for me to post any question on here and I have been trying for 2 months.  Lucky woman who started this thread, finding this site, and being able to post a quyestion on the same day!!!

[lilred1]

Oh how this is the story of my life ! Im 36 yrs old with lesions on my brain ( the original ones were found in 3/03 and there were more found in 7/04)and yet no one can tell me what is causing them. I am on a waiting list for a neurologist appoint.
I have excruiating burning pain on the top of my head.. no one is willing to tell me what is causing those either.. they just tell me that all they can do is give me a shot and send me on my way. I actually launched on an ER doctor this past weekend because of it. I do not want the shots.. I want to know the cause.. Why is it so often the case that doctor's treat the symptoms instead of determining the cause?

I get treated like a depressed middle aged woman who is a hypochrondiac. I even went to a shrink just to pacify the neuro I was seeing last year.. even the shrink said that the only thing causing me to be anxious is knowing that something is wrong, I just do not know what it is. After he got that report, he said that he couldn't treat for migraines. Umm HELLO ?!?!? when were going to tell me that they were migraines) He was willing to keep seeing me for the sleep disorder ( 3 sleep tests said I didnt have one). Im like ummm NO  you want the $300 you get from my insurance company everytime I see you. NO THANK YOU..

So just know you are not alone.. it happens everywhere

[tiasha]

Well I went to the Cleveland Clinic and was very dissapointed!!!!!

I sent back the papers they sent me prior to the appointment with my health history and also sent additional information about my symptoms.

I took all of the test results that I had as well as all of my precious MRI films. The Dr. did look at the films and brought them back to me a mess. I have to sort them out and put them back in the correct envelopes. He did not read any of the information that had been sent in prior to the appt. and didn't look at anything else that I brought with me. I did a partial neuro exam. He kept asking me the same questions over again. At first I thought he was testing my memory. But I later realized that he forgot he had already asked me. Partway throught the exam he literally forgot what he was doing and had to stop for a moment to regain his thoughts. When he was all done he told me that nothing was worng with me. I asked him if he had any ideas as to what could be contributing to my memory loss, cognitive problems, balance problems, muscle spasms, numbness. etc. He told me I should just stick to my Fibromyalgia diagnosis and might want to get another opinion on that.

I left there in tears. I felt like this was my last hope. I am getting worse and can't get a Dr. to really listen to me. My husband wants me to try and get in with another Dr. at the Cleveland clinic. I am just so tired of being sick and don't want to go to anymore Dr.s. I really feel like giving up. I am so afraid that one day i will wake up and won't be able to walk at all. hen maybe someone would listen to me.

[tiasha]

Please read my last comment. Should I keep trying or just accept this Dr's opinion?

[tinkerdale]

A related discussion, No understanding no diagnosis was started.