Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

frustrated

slbale
slbale
hi I am new to all of this and was hoping I could see what ya'll have been through as I think this must be common. 18mths ago my hubby had a small stroke at 40 yrs. old and had to have MRI's as part of the investigations, the neuro found what he called unidentified bright spots and suggested follow up MRI in 6 mths. this follow up showed an increase in number and brightness which the radiologist noted was consistent with MS. the neuro disagrees and thus far we still don't have a diagnosis of anything but my husband has now had 2 hospital admissions. one for weakness in his left arm and pleuritic pain and 1 for extreme vertigo (he couldn't even sit upright) all of his symptoms point to MS pain in left arm and leg, weakness and numbness on the left side, memory problems, dizziness, clumsiness (he was walking along the other day and kicked his own walking stick out from under himself) I am sure there are others but they are the main ones. the neuro says he cant have MS as he doesn't have oligodentral bands. please help we are starting to think it is all in our heads so to speak.
marilyn4342
marilyn4342
Get a second opinion! Find a neurologist that specializes in MS! Good Luck and let us know!
deleted_user
deleted_user
I would also get another opinion. I would find a dr more familiar with ms.
deleted_user
deleted_user
From my research you can have MS and not have bands. Please, find a doctor that specializes in MS.
deleted_user
deleted_user
Hi, I was diagnosed with MS in '97. After taking many tests I was told that I problaby had MS. The Dr. wanted me to use Avonex injectable medication. I told him "How can you give me medication if you cannot give me a definite diagnosis?." There are so many different symptoms it is difficult to diagnose. Each person is different. Don't be discouraged. I started getting symptoms after hip replacement surgery. The doctors couldn't understand the symptoms I was having. They seemed to think that I was faking. Don't let doctors intimidate you. Find one that has many patients that have MS. Most of the people who have MS had something trigger their disease,for example: surgery, accidents, stressful time, such as change of job, relationship problems,etc. It seems to attack the immune system when it is weakest. ( my opinion). Good luck to you and your husband. It is a tough diagnosis. Stay strong.
MsRee
MsRee
I agree with everyone here, a second opinion is so needed because you just can't be too careful.

Best of Luck
Renee
deleted_user
deleted_user
Yes by all means find a second neuro specialist in MS. I have had positive MRI's without oligodendral bands until 07 when I fell down a flight of stairs and ended up in a trauma unit. I had no idea I was even in the stairwell and lost about 3 weeks of time! I had been having all kinds of increased numbness and bladder issues as well as clumsiness. I finally had a repeat MRI which showed a drastic increase in lesions and a spinal tap positive for bands. Thank God I got put on Copaxone although I am now on Avonex which seems to work better for me. I had been having sx since I was in my early 20's and got tentatively diagnosed in 87 and officially diagnosed in 07, I only see a neuro doc who specializes in MS now and love her! I wish your husband luck but he does need another opinion.
lchoppel
lchoppel
ABSOLUTELY FIND ANOTHER MS NEUROLOGIST! Everyone is right, you don't have to have O-bands to have MS, in fact, a lot of people here don't have them. I had few lesions on my brain, but lots of O-bands. The doctors were still skeptical. For some reason doctor's don't like giving out diagnosis of MS. Everything your hubby has gone through sure sounds like MS. Don't stop until you get an answer.

Also, early intervention with a disease modifying drug is highly suggested by specialists. Try googling it. They say it helps stop the progression of the disease which occurs early in the stages of MS. That's probably why Brklylady probably was prescribed a MS med early in her diagnosis. Good luck!
Anne8
Anne8
I have NO o bands, but tons of brain lesions, and MS diagnosed. The thing is, you have to have more than 9 in the brain (if you don't have any elsewhere) to be diagnosed. I have over a dozen, so immediate diagnosis.
deleted_user
deleted_user
I agree with Marilyn4342. I've never heard or read of such a reason.
slbale
slbale
Thank you to everyone we have an appointment at the Brain and Mind institute in Sydney on Monday with an MS specialist. I just got so worried I picked up the phone and they got us in the following week AMAZING in the last month his symptoms have become so bad he needs all kinds of aids. a chair in the shower, a frame around the toilet and a wheelchair for longer days out (more than 10 mins walking) I can only imagine what we will be facing in 6 months. anyway I will keep you posted but its nice to know my thinking was on track (the old neuro suggested I stop researching as I was making him sicker finding out all this stuff so never going back to him ) hugs to all
patinqld
patinqld
My thoughts are with you for Monday. I was actually diagnosed after a heart attack, only because took a holistic approach and saw something was wrong. He then called in a neurologist and the result of tests showed r/r/m/s/ now s/p/m/s. Just stay with your gut instincts. All the best.
slbale
slbale
ok well had appointment with new neuro, wow that was an experience 10 hour drive and $420 lighter we know no more than we did before we left and still feel like we are making a mountain out of a mole hill. however there was a glimmer of hope in that he said in order to arrive at a diagnosis f MS we have to rule out absolutely everything else that it could be so prepare yourself for another MRI. How many of those things have you had anyway (this will be number 4 in 12 months and leaves nothing else to look at) so we continue on the road to see where it leads. he does seem to think that if this is MS it is very atypical which doesn't surprise me at all my husband cannot do anything in a way anyone would expect. will keep adding oh and new symptom he lost his left arm and hand for most of yesterday but it seems to have come back today
deleted_user
deleted_user
IM NEW TO ALL OF THIS BUT IM SO GLAD THAT YOU GOT SUCH GREAT ADVICE FROM EVERYONE. THIS IS A GREAT PLACE TO BE. EVERYONE IS SO FRIENDLY AND SUPPORTIVE AND SO DANG SMART.....I KNOW PRETTY MUCH NOTHING..WHICH LEADS ME TO ASK WHAT ARE O BANDS YOU GUYS ARE TALKING ABOUT? NEVER HEARD OF IT.
slbale
slbale
Hi indygal o bands are oligoclonal bands it is some sort of substance that is released from the breakdown of the myelin sheath in patients wit MS and 90% of MS patients have them at some stage. so much so that if you don't have them (and some people don't have them for a long time and some not at all) well if you don't have them doctors are reluctant to give you a diagnosis of MS which is really frustrating. I actually pulled up a pic of an MRI of an MS patient on the net the other day and it looked like hubby's like exactly like hubby's. we have only been at this for about 2 months at full swing so I figure we have about 5 years to go so I am trying to just take 1 test at a time. but MS is the only thing that makes sense to me
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