Going to the movement specialist HELP!

General
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Tuesday i am going to the movement specialist to get confirmation that I have cerebellar ataxia. (per my neurologist)I am fearful as always that he wont know what is wrong with me, or that he will think its all in my head.My experience with the research doctors at UNMC have been positive but when my symptoms reappeared in Sept,, the first neurologist(private practice)could not find anything confirming a diagnoses, and told me a needed a shrink. Ha. On my MRI it confirmed a abnormal enhancement in two areas, one being my cerebellum, showing duplicate signs of a neoplasm, cancer cells.cells. Luckily I found a neurologist mins from my home that confirmed ataxia just by my symptoms alone, and referred me to the movement disorder specialist. I am nervous, afraid, and so worried the specialist wont know what to do for me.

Like I said my experience has been positive with the research doctors, but the past tends to weigh on my mind

I am tired of being like this, and thought years ago(because it was off and on) that this would never creep into my life again. I am a student at Bellevue University studying to be a wellness coach and have worked hard the last two years to maintain a 75 lb weight loss. I ran my first 5k last year and was going to instruct fitness walk classes this winter. How will I do any of that now??? I dont know if I will be able to maintain my studies because some of the classes include physical movements

The meds i have been on( gabapentin) have put ten lbs on me and probably 5 inches around my waist. I am ashamed of what this monster of an illness has done to me, and try hard every day to walk normal, exercise without falling , and eat healthy, none that works out.

Sometimes I tell myself, this is all in my mind, this isnt real, this can change if I just focus hard and concentrate on being normal. I have even cut down my med does just to see if the meds are making it worse. My vertigo and nauseous has come back, along with more unsteadiness then before Symptoms i had before I started on any medication.

Why? Why do I have to be tortured every day with the fact that this illness has taken over my life, left me afraid, crushed like a nasty bug, and left to do nothing but crawl up in a ball and deteriorate.

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Teresa, don’t be disheartened, you’re looking for answers, this is a step forward.

Movement Disorder Clinics specialise in selecting therapies that best meet the needs of the individual patient, this is a positive thing.

You’re using a lot of energy focusing on trying to ignore symptoms, this will probably make you more exhausted and stressed out, whatever the final diagnosis turns out to be.

I thought I was totally losing the plot before diagnosis, my doctor (primary caregiver) said she’d ‘tested for everything’ and found nothing wrong. I was in a wilderness with weird symptoms for over 10yrs. After falls, I had an MRI which showed atrophy, conclusive proof that the symptoms were real, something was actually causing them.

Have confidence in the Movement Disorder Specialist :-)xB

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Beryl Park said:

Teresa, don't be disheartened, you're looking for answers, this is a step forward.

Movement Disorder Clinics specialise in selecting therapies that best meet the needs of the individual patient, this is a positive thing.

You're using a lot of energy focusing on trying to ignore symptoms, this will probably make you more exhausted and stressed out, whatever the final diagnosis turns out to be.

I thought I was totally losing the plot before diagnosis, my doctor (primary caregiver) said she'd 'tested for everything' and found nothing wrong. I was in a wilderness with weird symptoms for over 10yrs. After falls, I had an MRI which showed atrophy, conclusive proof that the symptoms were real, something was actually causing them.

Have confidence in the Movement Disorder Specialist :-)xB Thank You!
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Teresa said:

Thank You for the different prospective. that is very helpful. Smiley face

Beryl Park said:

Teresa, don't be disheartened, you're looking for answers, this is a step forward.

Movement Disorder Clinics specialise in selecting therapies that best meet the needs of the individual patient, this is a positive thing.

You're using a lot of energy focusing on trying to ignore symptoms, this will probably make you more exhausted and stressed out, whatever the final diagnosis turns out to be.

I thought I was totally losing the plot before diagnosis, my doctor (primary caregiver) said she'd 'tested for everything' and found nothing wrong. I was in a wilderness with weird symptoms for over 10yrs. After falls, I had an MRI which showed atrophy, conclusive proof that the symptoms were real, something was actually causing them.

Have confidence in the Movement Disorder Specialist :-)xB Thank You!
5

sometimes people have dreams of doing things & things stop us . because the meds. are putting weight on you isnt your fault. is the meds helping? i dont like this ataxia either. ive been dealing with it since 3-2015.

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The gabapentin only helps for a short while, then the doc has to move the dose up. Its time released, I think. It helps my tremor in my hand a bit and the dystonia in my neck. that is all I take for now until I see the specialist

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This appointment may give you verification that it's definitely an ataxia. They may be able to do more to find out what kind of ataxia, though that is not necessary to get treatment. And don't forget to ask if they can help your tremors....I take carbolevadopa, and azilect. (I too take gabapentin).

Best of luck!

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Thank You Sharon! I will ask, the gabapentin was helping a bit with the tremors but the tremors have gotten worse. My brother who has the same symptoms had the DBS surgery and swears by it. He has more symptoms of Friedricks ataxia, tremors, balance issues, scoliosis and cardiomyopathy, but has not had to use a cane or wheel chair. He was diagnosed with Parkinson like symptoms but no one has told him he might have ataxia