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Hello All~

I had my consult at Barrow Neurological Institute in Phoenix on Monday. My CT scan shows a greater loss of volume and more ischemic lesions than normal for a female of my age (46). While my PCP forgot to send the disk (of course) of my scan, I still had a full work-up. It is suspected and almost certain that I have small fiber neuropathy associated with a form of amyloidosis. Amyloid has been brought to my attention as the probable cause of my autonomic dysfunction several times, and I have a test set up for that in two weeks. I also have a nerve biopsy and some other tests coming up in September at Barrow.

I also found out that I have 'autonomic hyperreflexia', which means that I have very hyper reflexes at my knees and elbows. Anyone else heard of this or have it? There's a scale that runs from 1-4: 1) abnormally low response; 2) normal response; 3) slightly hyper response; and 4) very hyper response.

Thanks for any input!

Cheers,

Jana

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Yes, I also have hyper reflexes in several areas, although mine is a result of spinal nerve impingements.

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Hi, potsgirl, glad your visit went well at barrow. I haven't been up to typing on the forum, and I saw that you had asked me who I was seeing in the post from dani, sorry for not getting back sooner.

My doctor is Dr. Levine at phoenix neurology, he's works with good sam. I think I've given you that info before.

He tested me for amyloid too! They also do all the skin and nerve biopsies and diagnostics in house, they don't have to send them out. They are known for doing an impeccable job with these.

If they already know you have sfn then why are they doing a nerve biopsy too? That can leave permanant nerve damage and pain at the site. Also what treatment are they offering you should this turn out to be true? What else are they looking for?

IVIG might be a therapy for the amyloid and the SFN. Depends on how your insurance works if they will approve it. UHC denied as experimental for SFN, but I was approved when we discovered very low levels of Quantitative immunoglobulins. I think I'll do a general post on that.

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Do they think you have EDS? The hyperflexible type?

It sounds like you will hopefully get some more answers. Did they comment on the problems with your hands and feet?

What do they think is causing the lessions? Is this a possible MS diagnosis? I don't know too much about this.

Hoping for answers for you and solutions too.

Issie

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Hi,

I just wanted to quickly add (b/c I am not having a great brain moment right now) that the dr. probably said that you have hyper reflexes or are hyperreflexic, but from what you describe I do not think that he was meaning that you have autonomic hyperreflexia. Because that occurs in individuals with a severe spinal cord injury, and symptoms can be life threatening for those patients. I too have very hyper reflexes, so I know where you are coming from with that.

I hope that makes some sense... :)

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Arizona Girl~

That's where the 'suspected' comes in...they're doing nerve testing to get an idea of the extent of the damage and other info that they really didn't seem to want to go into - I think they didn't want to overwhelm me. They told me that with my symptoms that there was a small number of things that could be causing this and my other heart/POTS issues. One was diabetes, which I definitely do not have, the other is amyloidosis, which is hard to find even if you test for it. They didn't want to discuss the other possibilities until I have my amyloid and other tests completed.

The only course of action they want me to follow right now is to get on a better pain treatment regimen with Methadone, which I'm leery of...I was hoping for a nerve block or something similar, because my hands and feet up to my knees are in constant, severe pain.

You're right, you did give me Dr. Levine's info before, but I misplaced it. Sorry!

Take care,

Jana

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Hi Issie:

No, I don't think EDS is involved at all. The chronic foot and hand pain is probably caused by small fiber neuropathy, which may be caused by amyloidosis. Several doctors have mentioned this, so we'll see what my results show at my test two weeks from now.

I don't think MS is the culprit either, because I have been tested for that a couple of times and it doesn't seem to be an issue. I'll certainly let you know more about it when I do, and hopefully it will be in person after some of these tests are done in Phoenix.

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Oh, Jana, I agree with you, methadone????. I think maybe before you do take that and have a biopsy that leaves permanent damage, you should get a second opinion. Methadone is treating a symptom not a cause. I really think phoenix neuro is a head of the field in their treatment protochols and they know SFN. They also specialize in neuromuscular neuropathy, Barrow really specialize with the head, which is why I didn't go to them. Phoenix neuro trys to treat cause.

BTW. If you want to know what they are thinking. All you have to do is go to the hospitals medical records department and get your medical records. That would include your tests and the doctor/hospital notes. You don't even have to let the doctor know you are getting them. They shouldn't be protecting you, your an adult an have a right to know exactly why they want to do what they are doing and what they are looking for. The truth is they not even know for sure what they are looking for.

You will probably get in faster with Dr. Levine if you have your main Dr. call

Good luck honey!

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I don't think MS is the culprit either, because I have been tested for that a couple of times and it doesn't seem to be an issue. I'll certainly let you know more about it when I do, and hopefully it will be in person after some of these tests are done in Phoenix.

Looking forward to meeting you!!!!!!! Hoping for GOOD NEWS.

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