NeuroTalk Support Groups - My story, SFN, and IVIG

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Quote:

Originally Posted by janieg (Post 1240640)

What are your symptoms of this? I have this as well with it resulting in cardiac symptoms. A few hours after I've imbibed, my heart rate increases to uncomfortable levels and stays there for hours on end. It's gotten steadily worse over the past decade or so.

I did appreciate some heart rate increase, but it wasn't to uncomfortable levels. It did cause atrial fibrillation, but it was sporadic.

My primary symptom was essentially feeling extremely very tired and lethargic after one drink or less. And this lasted well beyond the time it should take to metabolize the alcohol. I could feel this way for a few hours after half a drink.

It also exacerbated the other symptoms I was having. For example, a feeling of detachment from my surroundings, difficulty hearing conversations over background noises, and the issues with my vision.

It was always hard to describe the visual symptoms that I had, as I didn't have any loss of acuity. The best way I ever had to describe it was seeing double, but the images were overlaid so that I didn't actually see 'two' or anything. My brain was unable to see, for example, a traffic light, as a singular light. Closing one eye made this feeling go away. It was so weird! I was always uncomfortable outdoors for this reason. Looking into the distance caused a sensation of vertigo and a general feeling that I couldn't quite 'see' what I was looking at.

Because my Doctor could find no cause for this, and because it started to slowly improve, there wasn't much done to find a cause. The neurologist says it could have been a viral infection that caused a mild encephalitis that just wasn't bad enough to show up on an MRI, but it also didn't show up on the EEG, so it was just a mystery.

The coincident development of a neuropathy could be a coincidence--I doubt I'll ever know.

Quote:

Originally Posted by JimJamJones (Post 1240639)

Yes, thats it exactly, 'Sunburn'. That is the best description of my issues; a sunburn type of pain evoked by light tough of an object or clothing. I haven't experienced any other type of burning except that.

It certainly seems like we have something similar going on, though i must say that I never had any viral episode like you mentioned - I never had any sort of illness actually which preceded all of this. It seems possible though that it was a cause for you though and whether or not IVIG will help would obviously be dependent on that assumption. I would think that if you are naturally seeing some improvement in the last 6 months it would be worth waiting to see how that pans out, maybe you would already see further improvement ahead without the IVIG?

You're right on my side though, the biopsy is the best plan for me, I need the diagnosis one way or the other before i can move forward. :)

I actually started the IVIG very recently (Gamunex). I seem to be handling it well with no side effects so far. I'll definitely report here if I notice any changes.