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Anti Myelin Associated Glycoprotein Antibodies

Neuropathy | Last Active: Oct 25, 2023 | Replies (11)

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@george1976

MAG level of 1418 versus normal range of 0 to 999. Other MAG bloods were classified as a ratio, eg: 1:1500 and 1:1600. Don't know the difference in reporting. Have been told these are high but not significant as I do not currently have the M-Spike or MGUS. 8 EMGs suggest axonal poly neuropathy, not CIDP. Have high protein and low glucose in CSF but again, supposedly not significant. Also have elevated ACA IgM and positive TNFa but also not enough to cause any of my docs to do anything to try and help. Extremely frustrating.

For the past 3 years I've had weakness in lower legs and dizziness that comes on as soon as I open my eyes in the morning until I go to bed at night. The dizziness is probably worse than the weakness. Many tests and doctors. A couple docs suggested IVIG but one neuro thought it could damage my brain. I also have a blood cancer, too many platelets, but my version of it causes bleeding versus clotting. Also have lower lumbar foraminal stenosis playing a role in weakness. Hoping that will be resolved with surgery soon.

Evn with the blood cancer, I was very active also up until the neuropathy came on. Have considered it being caused by meds like interferon for my blood (which has been well controlled), COVID, flu shot, etc.

I believe I am doomed to be one of those people who die while all my docs sit by and wonder what is wrong despite all sorts of abnormal tests. Although in my case most of them probably wont even care. Most docs give you the standard 20 minutes of their time, write up their notes and claim they spent a whole hour or hour and a half like its some kind of massive gift. The its like see ya, and don't call with any questions.

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Replies to "MAG level of 1418 versus normal range of 0 to 999. Other MAG bloods were classified..."

Welcome @george1976, It must be difficult to say the least trying to figure out the cause and what can provide some relief for your symptoms. I have read that interferon can cause dizziness, tiredness and a host of other symptoms. Have you discussed it with your doctor to see if they might have some suggestions for dealing with the dizziness and weakness?