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Old 11-10-2011, 11:52 AM   #1
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Neuro Visit - Diagnosis Hemiplegic Migraine

I've been for the visit with my neurologist. She said based on the evidence of what I am experiencing I suffer from Hemiplegic Migraine.

However, I have some reserve to her diagnoses as she diagnosed me with Familial Hemiplegic Migraine because she asked whether my mother suffered from migraines. I said that she use to get tension headaches, but this was due to her undiagnosed hypertension and heart problems that she suffered from for years; which now has been sorted out. She has an enlarged heart because of it a big balloon in a main artery.

The other thing that I have problems with is the fatigue that I am suffering. When I go for a walk, lets say about 300 metres, I totally slow down, my walk goes weird, my head dizzy, have to grip something to be steady, and then I'm zonked out for hours because I have done to much.

She given me Diamox to try instead of the Bendrofluarazide and hopes that this might sort out my symptoms. If it doesn't then go back to my doctor to try something else, then something else, then something else?!!!

The other thing is that I still have constant numbness down the right side to touch, and feel the numbness more prominent in my right foot/calf and face. My arm is tired too.

She is sending me for a further MRI but only of my brain. I asked her about my spine both thoracic and lumbar and she said there is no need for it as I do not have MS and it is a neurological disorder!

And no she's isn't an MS specialist and I wish now that I had gone to one. She mainly concentrates on people with epilepsy and teaches neurophysiology.

She wont send me for and EEG either. The other thing is there is a blood test to check our familial hemiplegic migraine, but unfortunately it is not available in NZ and you have to send away for it. The other thing is it is too expensive.

She also put me off because she didn't offer me any information about hemiplegic migraine or what support I could get!!

I don't know. My husband is intent on me trying this medication first and seeing if it helps with my symptoms?!

Is there anyone else out there that knows about hemiplegic migraines?

Megan

 
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Old 11-10-2011, 08:20 PM   #2
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Re: Neuro Visit - Diagnosis Hemiplegic Migraine

If your neuro's evidence were presented in a court of law, would there be irrefutable evidence to find in favor of the diagnosis she has given you? While circulatory problems can present as such, they can also present as such with MS. I would ask for the second opinion of an MS Specialist before taking any meds if there exists the potential for damage caused by the meds she wants you to take. I would weigh the evidence and then make the best informed decision you have available to you.
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Old 11-10-2011, 08:26 PM   #3
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Re: Neuro Visit - Diagnosis Hemiplegic Migraine

If your neuro's evidence were presented in a court of law, would there be irrefutable evidence to find in favor of the diagnosis she has given you? While circulatory problems can present as such, they can also present as such with MS. I would ask for the second opinion of an MS Specialist before taking any meds if there exists the potential for damage caused by the meds she wants you to take. I would weigh the evidence and then make the best informed decision you have available to you.
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MS diagnosed since October 3, 1982
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Old 11-10-2011, 09:52 PM   #4
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Re: Neuro Visit - Diagnosis Hemiplegic Migraine

Hi Jayhawk

Thanks for your comments. I think looking at the evidence that she has put forward to me I'm not sure if it will hold up in a court of law.

Can I ask whether you a question. When you were getting diagnosed, was there any problem with your reflexes?

I have been seen by a few people and they have all done my reflexes and said that they are very slight. Particularly in my lower limbs (knees, feet).

I've been very off today, with a funny walk. I've had to rely on my stick to walk with this afternoon.

My eyes are very heavy and tired.

I dispute that I am in fact having a hemiplegic migraine today?!!!

I'm back to my doctor on Tuesday next week to discuss things further. Will go from there I guess.

Megan

 
Old 11-10-2011, 10:25 PM   #5
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Re: Neuro Visit - Diagnosis Hemiplegic Migraine

In 1982, when I was diagnosed,my reflexes were off. The Babinski reflex indicated a neurological problem. I knew nothing of it. My other reflexes were off too. My neuro told me that he preferred I did not know it because I would not be able to fake it.

The Babinski reflex is something my neuro does on my follow-up appointments every 6 months.

As my reflexes are not good, I drive with hand controls in my truck. I have since 2002.

When my eyes are heavy, I stop and nap because it is the best medicine I know. I will sleep until my service dog awakens me.

I walk funny every day. I always have my cane with me. When I am outside, my service dog is my primary walking assistant.
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MS diagnosed since October 3, 1982
MS onset circa 1977
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