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brain tumor?

Posted by tornadoman (My Page) on
Sun, Apr 1, 07 at 9:43

My story> Aug18 2006.I went to My fam.M.D.because I had been having trouble pronouncing long words for about a month.I have allways been able to talk fast and use fairly good grammer.He sent Me to get MRI.Results were 11 small tumors,mostly in right side,1 a little larger in left temporal.Was hospitalized,tested and given steroids,only tumors in brain(primary)...Sept18 2006> Found good neurosurgen at Mercy hosp. in Okla.City,did biopsy,test were inconclusive.Sent to John Hopkins,then Mayo clinic,still inconclusive,only evidence of some swelling.Foot drop came a week after biopsy.All test still inconclusive.Nov 2006>Doctor and Me frustated...Try M.S.Doctor,do spinal tap,M.S. says maybe M.S. not typical symtpons though.But gotta do something.So injecting myself 3 times a week with Rebif(M.S.meds)and regular blood tests everything normal on blood tests So apptoment on May7 2007 to do MRI se if any change(takes 6 mo. on rebif to tell I guess).In the meantime beetween Nov.and jan. had mild seizure(cant speak at all for 30-45min)so started taking Keppra 250mg.twice a day...no seizures untill March...Big one started like small one ..couldnt speak..but lasted long time and started traveling Though right half of body ..emerg room ...lost conscenses(typo)...hosptital 4 days ..increased meds to 750mg Keppra 300mg dilanton... not elepectic...atypical seizure they say..not a symptom of M.S.It is april 1 2007 ....no siezures yet.Has any1 ever had this kind of thing happen to them ? If so please tell Me if you found out why.Thank you for taking time to read this. My name is Scott Hutson 46yrs old.


Follow-Up Postings:

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RE: brain tumor?

Hi Scott,
I'm so sorry for all your troubles. It sure seems like someone could have figured this out by now.
One possibility I was thinking of was Lyme disease. Have you ever been tested? Have you ever been bitten by a tick?
There is much disagreement about the treatment for Lyme disease......with some doctors feeling that you need tons of antibiotics, whereas others believe you only need one short course of them.
Why don't you do an internet search on neuro-Lyme, and see if its something you feel you should pursue. Sometimes neuro-Lyme can look like M.S.
Good luck to you.


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RE: brain tumor?

Thank You Catherine!Yes,Docs have tested 4 Lyme dis.In "My Story"I paraphrased so to speak,so I wouldnt take up so much space.In addition to many symptom,1 is some motor skills on right side,the hand for 1,plus foot drop,Makes typing slow.Didnt type list of all test,but docs have done all they think of,several docs.We are stumped.But Im just living living day2day hopeing something will appear to give a hint.I am thankful for the life I lived so far and have a possitive attitude.Thanks again!


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RE: brain tumor?

Hi Scott,
Firstly, I'm sorry to hear of your puzzling and worrisome problem. I'm a little confused. I understand that tests showed small primary brain tumors, you were given steroids, and biopsies proved inconclusive. But when you mention Mayo Clinic only found swelling, do you mean the tumors had disappeared? Or had they been removed by surgery during the biopsies, or just shrunken by the steroids? In other words, does your brain scan still show any tumors? If the tumors are still there, wouldn't that be causing your seizures, foot drop etc.? Since you responded to the question about Lyme disease by saying they had done other tests that were too lengthy to mention, I'll assume they checked for any type of brain abscess or infection, such as those caused by menigitis or encephalitis, for example. I'll also assume your brain arteries look normal in the scans. But did they check your carotid arteries, and ensure there is no narrowing or partial blockage in either side that could be disturbing blood flow to the brain? Some of your symptoms almost sound like trans ischemic attacks, so I'm sure they'd have to rule out a blockage in the carotid arteries.
I wish you all the best and hope that they will solve this very soon for you, and that you will regain your former health.


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RE: brain tumor?

Thank You pickyshopper.I meant My neurosurgen sent My MRI pics and the biopsy samples first to the "testing guys"(sorry cant remember the medical name of the doctors).They couldnt determine ....they sent to john hopkins..couldnt determine..they sent to mayo..al said same though about evidence of some swelling.My neurosurgen took samples with needle only on small tumors on right side.Said was too dangerous to get one from bigger one at left temporeal lobe,and when I recently has big seizures and was Put in ICU for 48 hours(its the law when a seizure causes loss of conscenses(typo..Im so sorry))They did another MRI and tumors still there.. little ones maybe a little smaller, big left one same size.M,S. doc says seizures not part of M.S.. But is well known left side tumors cause right side problems.Temporal lobe affects speach and right side motor skill,and foot drop is on right foot ect...Docs are puzzeled.And M.S. in itself is very hard to make a definite diagnosis.It is hard for Me to believe that M.S. would be agood thing..but I guess is better than cancer.Even a noncancerous tumor can grow and be life threatening.IF NOT TREATED.So I am not sure what I should wish for aside from a miracle..which being a realistic person as I am.I am prepared the accept the outcome.I just want to what that may be.Thank you all so very much for your attn.I need all the help in finding the truth I can get.


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RE: brain tumor?

I'm not a big fan of assuming someone has Lyme disease, since I think far too many people are treated for it, when they don't have it. But has anyone talked to you about what neuro-Lyme looks like? If you think it looks like it, perhaps you could follow the treatment for it??
Do you have demylination in your brain, or are they actual tumors?
Have you considered changing doctors for another opinion?


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RE: brain tumor?

Here's my guess:

Here is a link that might be useful: cysticercosis


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RE: brain tumor?

I'm also curious if you showed demylination in the brain or spine. Tumors are not symptoms of MS - do you mean MS lesions in the brain? Did the spinal tap show oligoclonal bands? I didn't think Rebif would be prescribed without at least some lesions showing up. It wasn't prescribed for me until the doc was very very sure I had MS.


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RE: brain tumor?

Hmmmm Meghane,
That link doesn't work for me, but I googled the disease, and it sounds like a possibility! I hope Tornadoman checks back here soon. Very interesting!
Tornadoman......just google cysticercosis, and you'll read some interesting stuff! I wonder if an infectious disease doc might pick up on something like this?


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RE: brain tumor?

Leisons or tumors.Thats the big question.My M.S. Doc. is Dr. Gabriel Pardo.A highly recomended and respected neurologist specializing in neuro opthamology.In My hours upon hours of studying the possible causes and symptoms of M.S.(and primary brain tomors)I have learned have M.S.is rarely diagnosed as a definite cause.Therefore after many Pathologists couldnt tell from biospy sample.The team of neurosurgeons sent Me to Dr. Pardo,who ran tests,including lumbar puntcher,and found it to be possibley M.S.But some things that were not consistant with typical M.S. symptons.Trying Rebif and taking Me off steiroids(thank God)My 7 2007 with be 6 months.I am functioning well enough for now(exept for fear of seizures)to do as much research as I can.But I feel My days are numbered, though I try to not give that immpresion to My family.Im not afraid to die,only afraid of not konwing why.This forum has been a blessing to Me have some way to have some hope that people will have an answer.Also a way to vent my selfish frustration.THANK YOU!!


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RE: brain tumor?

You are NOT selfish Tornadoman. Any of us in your position would be going crazy, trying to find the answers.
Try to continue to do alot of reading and talking to people. Keep good notes. Don't be afraid to question your doctors, and bring new ideas up to them. Even show them some literature on some illnesses they haven't mentioned. They don't know everything. Good luck tornadoman! And feel free to come here to vent and get support any time!


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RE: brain tumor?

Scott, your frustration is justified, not selfish, and we can all understand why. You went to some of the top hospitals in North America and still can't get a definite diagnosis. You've told us that all the biopsies are inconclusive...not sure whether that means they were inconclusive about whether they are malignant or benign, or whether they couldn't even determine what the growths were. If that's the case, then Meghane's suggestion to check out cysticercosis really should be looked into, because even though it might seem like a long shot, at this point, nothing should be overlooked. Are radiation or chemotherapy being considered, or only medication to prevent seizures? I'm sure hoping one of your doctors will turn out to be like 'House' and nail the diagnosis so you can recieve the best treatment possible.


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RE: brain tumor?

Thank You all,I looked at neurocysticercosis and am inerested.But as is all my searching so far,some symptoms are similar but the whole desciptson of the disese dosnt corelate to the many different things I have experienced.I abosoluty with ask My doctors to check it out though!Sorry about My spelling.I used be a the champ of My friends and family at Scrabble,but typing and seeing it seems to confuse My spelling skills.I find it kinda funny though.I will never My sense of humor,I feel sure of that...Scott


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RE: brain tumor?

If you're interested, I can point you towards a very good MS discussion board. Many people on it are in "limbo" - that is, they have undiagnosed neurological problems and are trying to find answers.


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RE: brain tumor?

Yes cnetter I am interested!Thank You!...To Everone;>I am so amazed and greatful for response Ive gotten for My pesonal problems.Please tell Me if is any way I can pay back the gift all have given by the attn. I have recieved....Yours TRULY, Scott.


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More info that may be useful or not>4 yrs ago I stopped drinking any achohol.Ironicaly,3yrs later feb.2005 I went to femily doc.for complete physical because I just enrolled in new heath insurance from aetna(thank God)I didnt feel sick and hadnt for years.Anyway..blood tested showed high blood suger and was prescibed metformin for type 2 diatbitis(sorry spelling).Good thing is I went on diet and lost 30lbs down to 170 by june.Then in aug.started having speech probs etc.....You know the rest (scrole up ha. ha.)Thank You again.


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I'll see if I can post a link.

Here is a link that might be useful: MSWorld Forums


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RE: brain tumor?

Have you been checked for Lou Gehrig's disease,known as ALS? or Huntington's Chorea?


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Thank You cnetter,I've joined MSForums and its great!No answers,but many there like Me.Not knowing future.I'm not alone.Not that I'm happy that some1 else is sick.Just the sharing of living in "limbo".


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