Anti-MAG fatigue for newly diagnosed.

    • KCorr
      November 4, 2024 at 5:05 pm

      Hi All,  I can see these forums aren’t used much.  I’m not sure why because I’m chomping at the bit for more information.  I’ve recently been diagnosed with Anti-MAG with just over 1000 BTU and no M-spike/MGUS (yet).  Neuropathy began about thirteen years ago, but symptoms have very recently gotten much worse.  The sensations of weakness and parasthesias are increasing.  For those who have had Anti-MAG longer, may I ask you how bad your fatigue got?  I’m currently needing at least a two hour nap nearly every day.  I work out hard in the morning and then hit the wall.  Also, did the rituximab help with fatigue?  Lastly, did any of you try rituximab, but didn’t find it working to improve symptoms?  Many thanks in advance.  Best wishes, Karen

    • Sunny
      May 10, 2025 at 5:27 am

      Karen and others with Anti-MAG,

      I  am also new to Anti-MAG, with cold intolerance,tuning fork-like vibrations fingers to elbows that can go on for an hour or so, overheating(right age for hot flashes but hot flashes are usually minutes-long and maybe frequent while these are for hours at a time),very fatigued, am convinced stress makes worse.

      Had EMGs which revealed polyneuropathy and bloodwork showed Anti-MAG.Then I had hematology/oncology/infusion bloodworkup to rule out cancer.No cancer detected.Have not had Spinal tap.Not sure what’s next.

      The medicine you asked about is usually not given unless severe because it has many side effects.
      <p style=”text-align: left;”>I don’t work out but walk daily.I don’t understand effect of movement with this.My feet recently have sensory neuropathy,24/7.I have daily headaches upon waking, 24/7tinnitus (louder than ever), nocturia, skin rashes, nausua and feel overwhelmed but my lack of control to stop all this.</p>
      <p style=”text-align: left;”>Do you have similiar symptoms and how do you handle them?Does any medicine help you?</p>
      Really hoping there’s something can reduce these symptoms.

      Sunny

       

       

       

       

       

       

    • KCorr
      May 10, 2025 at 11:47 am

      Oh Sunny, I am so sorry to hear all this.  I was only asking about Rituximab if I’d  need it at some point in the future and what other’s experiences are with it treating Anti-MAG.  That’s why I had the original post.  As it turns out though, I may not have Anti-MAG after all.  My BTU levels were just over 1,000 which is borderline.  Mayo Clinic says I don’t have Anti-MAG.  Turns out I have something called Lambert-Eaton Myasthenic Syndrome (LEMS) instead and am receiving treatment for it.  There’s a lot of overlap with Anti-MAG symptoms and I have a lot of numbness, tingling, etc.

      While there isn’t a specific drug for Anti-MAG there are drugs that can help with your symptoms including gabapentin, duloxetine, and others.  Ask you doctor if he/she would consider them for your symptoms.

      I wish you the best of luck, karen

    • Sunny
      May 10, 2025 at 3:34 pm

      Thank you for your kind words.I hope your treatment is helping.

      Best wishes,

      Karen

    • Courtney
      July 30, 2025 at 1:54 pm

      Sunny, I had the same. No diagnosis at the time but on disability already. Have been working with a immunologist for years now. My walks had to stop because my feet weren’t working and I was tripping all over. I thought it was just tight hips and did regular PT, which didn’t help. A couple years later (with multiple auto-immune and major cognitive involvement) I had an anti-MAG test come back positive.

      Fast forward 2 years I finally saw a neurologist PA for MMN specifically and he didn’t think I had it, despite the high positive results, multiple times. I didn’t “present” like MMN. Eventually movement problems and pain got me curious about CIDP. The antibody test was negative, but the EMG was positive. So his diagnosis is Atypical CIDP.

      It seems like a progression to me.

      One thing the Neuro PA said was the nerves themselves would not heal, but I could regain functionality. Getting IVIG infusions for this (gratefully, due to Copay assistance).

      I heard about “Neurology PT” that is specifically for neuro diseases including polyneuropathies. The Neurologist PA had not heard of it at all. That surprised me. He agreed to send a referral, so I’m researching practices now.

      For pain, I started Gabapentein – and that comes from a Psychiatrist.

      I feel like an orphan, having all these rare diseases. None of the established protocols for any of them fit, so I can’t see a “specialist” and have an answer. My experience with PCP’s has been pathetic at best. They’re supposed to coordinate all this, but they do things that go against what the specialists would do.

      Since mine is Immune based, I cannot take immune suppressants or steroids. I’m under the category “Neuro-Immune”.

      To answer the original question, I had a gut feeling too. Still do. It is that these were all symptoms of some underlying process that is broken, and not diagnoses in themselves. I still have that feeling and am beyond grateful I found an Immunologist who keeps digging. It is one of his research areas, even.

      “I don’t know” can be the most beautiful answer from a doctor because that means they keep looking. Most are trained to have “the” answer in that 15 minute window called an office visit.

      Lost,

      Courtney

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