No longer a TMer!

Newly diagnosed? Just found others after years of being diagnosed with this rare disorder? Share your story here.

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No longer a TMer!

Postby Daisy82 » Sun Feb 03, 2013 6:41 am

Hi all

It's been months since I last posted here. I know this will be long but last year around this time, I was searching desperately for someone who just doesn't tell of a recent TM diagnosis but gives me a little information of what happens afterwards. Here is the story we went through:

-Netherlands October 2011: My husband 38, was diagnosed with TM. Initial symptoms were severe stabbing pain of back and ankle, tingling,rare sensations in sole, numbness in one leg and paralysis in the other. Urine and bowel control were fortunately intact. Later we got to know (not from the doctor!) that these symptoms manifest "brown sequard syndrome" that's very rare and does not usually belong to TM. Again despite what the doctor had said, we learned from the MRIs that his lesion is partial and not transverse. Brain MRI was normal though. One doctor said that his lesion shows inflammation only and not demyelination!!! Blood test was normal and the spinal tap showed proteins slightly elevated. When I asked the doctor about presence of oligo-clonal bands, to my surprise she said there's no need to check that because it's not specific to anything. On our request and much to her reluctance the test was done and came out positive. My husband was discharged with no medication and was told to follow physiotherapy/aqua-therapy sessions to regain the lost functions. She said no follow up is needed.

-Netherlands March 2012: After 6 months of witnessing weird acts and paradoxical statements from our neurologist and realizing she probably needs a neurologist herself, we turned to Netherlands' only MS center in Amsterdam where my husband was given Lyrica for his pain and underwent a secend full brain and spine MRI. That of brain came out clear yet there was a new very tiny spot on his T8 which would only appear in the "with contrast"MRI indicating an active spot yet the doctors said it might have been there in the first episode as well. They sent us home with CIS as diagnosis without having examined other possibilities to rule out, for example VEP.

-Netherlands October 2012: Having suffered from pain for a year my husband has recovered up to 80 percent. Only things he can't do are running and jumping. After a trip back home to the States, he comes back to Netherlands saying his sight's become much blurry since the night before his flight. I attributed this to jet lag until he said there's pressure and pain on his both eyeballs especially we he moves them, I knew these were signs of optic neuritis. It was a weekend so I rushed him to the hospital where an ophthalmologist examined his eyes and dismissed my suspicions of ON although his sight was enormously diminished. He said inside the eyes look very dry and he'll get better with time. I was not convinced and made an emergency appointment with the MS center the next day. The MRI and VEP were done. The latter showed indeed inflammation on both eyes. The diagnosis was definitely MS and he was put on Rebif. Again despite the doctors' reluctance and with our persistence his blood was sent for NMO IgG detection. When we ask about steroids, we are told that would be given at the time of inflammation and not afterwards (reasonable)

-Jan 2013: Having gained his sight after the initial nerve attack, pain, pressure, blurry vision etc are all back. We check in with the MS center. They tell us this is because of winter time and my husband has possibly caught cold (he wasn't having cold) and that has revived the old inflammation, go come back after a week if the symptoms persist. Two days shy of a week, my husband has totally lost vision in one eye, we meet the neurologist again who tells this is definitely a secend episode of ON. I ask for possible medication that helps, she says we'll have to wait for another week. if the symptoms are still there she'll begin with steroids. We object. She says she'll call us after consulting with her colleagues. She calls and says she refuses to put him on steroids whatsoever because the benefit of steroid is not scientifically demonstrated. I explain having read such articles, most of the stuff being said about whether cortico steroids are effective or not, are about the whole disease progression in long run. Appears she doesn't know the exact translation of "disease progression" in dutch and had thought that applies to to effectiveness of cortico steroids altogether. After a bit of English lesson she says she's gonna discuss this within their team and will get back to us. After four hours we receive a phone call from MS center saying they agree to admit him for IV steroids but again we'll have to wait for another three days.

-Feb 2013: Having gone through all the stuff I discussed above plus not having received NMO IgG result after almost 4 months, we came to conclusion that dutch doctors are not competent enough or at least we can't trust the medical system anymore. My husband and I are not the type of people who dictate doctors to prescribe things for him. Actually I was happy to find out they base their decisions on new findings but the part they fail to comprehend these new studies fully and eventually incorporating them wrongfully in their practice was the point we thought we're done with this system.
We decided to send the medical records to Mayo Clinic. We're waiting for an appointment right now.

So this is the how our journey with TM- although it was never TM- ended. First, I wish no one joins this club the way we did, second I wish you, who have already joined here, full recovery with your story ending where it began.
Daisy82
 
Posts: 11
Joined: Sat Nov 26, 2011 12:03 pm

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