1-1/2 Years Later - Neurological Symptoms

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JoAnn_K
JoAnn_K Member Posts: 17
edited May 2015 in Hormonal Therapy - Before, During, and After

I was on Tamoxifen for five years between 2009 and 2014. Three months after I stopped the treatment, I started developing joint pain, particularly knees and fingers that have worsened with time. I also developed stiffness in my joints so that when I go up the stairs, I feel like I have 500 pound weights on my legs.

What is more discouraging is some neurological symptoms I have developed. I have seen a neurologist and a tremor specialist, had a negative MRI and negative MRA, and have been told these symptoms are not related to a serious known neuro disorder. These are the symptoms:

1. Cervical dystonia (started 3 months after withdrawal) resulting in slight head tremor and head tilt.

2. Waking up from sound sleep with severe dizziness, nausea, flashes of heat and cold, general malaise lasting almost a whole day initially and now lasting less time (started 3 months after withdrawal).

3. Changes in speech articulation, particularly when fatigued (started 3 months after withdrawal).

Has anyone else experienced this? Has it been confirmed to be related to Tamoxifen withdrawal?  How has it been treated? 

Thanks,

Jo Ann


 

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  • leggo
    leggo Member Posts: 3,293
    edited May 2015

    I have not been on tamoxifen since 1999, but It sounds much like my symptoms, although mine began with tingling in my feet, an altered gait and loss of muscle control in my legs and worked its way up to my head over a couple months time. I was diagnosed with paraneoplastic syndrome. It was confirmed with a blood test screening for a particular antibody (name escapes me, CV something). Treatment has been bi-annual plasma exchange. I hope you can get to the bottom of whatever is causing your issues and that it can be easily treated. It doesn't sound tamoxifen related to me, but I suppose anything is possible. Best wishes to you.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2015

    I would be surprised also if they had anything to do with stopping tamoxifen. (I would be more apt to think tamoxifen had something to do with it if the symptoms had appeared when you started taking it.) Hope they can figure out what is going on and give you some answers!!!

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited May 2015

    Joann and leggo, sorry to hear you are going through this.

    I've never heard of paraneoplastic syndrome, but I googled for more info. It sounds like when the immune system is fighting some types of cancer, it sometimes attacks other parts of the body.(so unrelated to tamox; instead it's the body's own immune system on overdrive). Here's info from the mayo clinic. I've heard WebMD is a reliable source too. Good luck with this. I know these auto-immune syndromes can be challenging.

    http://www.mayoclinic.org/diseases-conditions/para...

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  • JoAnn_K
    JoAnn_K Member Posts: 17
    edited May 2015

    Leggo, you are my hero! I read about it, and it's me in every way! I have a whacked up immune system and this makes total sense. I have just emailed my internist who is connected with Johns Hopkins Hospital. I am hoping she can find a specialist in this to stop the progression. Amazing

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