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Does Anyone Have The Following Symptoms

I do not have a diagnosis of RLS , it appears no one knows what to do with me. I am uncertain if what I have fits the criteria for RLS or BFS or both. I am not asking for a diagnosis, just if anyone has the same symptoms.
My symptoms are body wide, but mainly in feet , left calves and all of the stomach area. Like tiny muscle contractions (twitching) that are very visible on the legs. Feels like pin pricks , bubbling or a sandstorm . I have them all day and night when I sit or lay down. My whole calves muscle spasms continuously. Appears to be aggravated by exercise, and can sometimes be painful. Have had this for 5 years and feel like its getting worse.

  1. Hi jan do you still have this twitches?

    1. Hi . Though your symptoms are similar to those of RLS, they could also be symptomatic of several other neurological conditions. Have you ever seen a neurologist? If so, did you have an MRI of your brain and/or spine? Brain and spinal MRIs could both provide valuable clues as to what is going on, or rule out certain health conditions. If you have not yet seen a neurologist, I would ask your doctor for a referral and consider finding someone new if your primary care doctor refuses. Clearly, something is going on. You need and deserve treatment and relief. Unfortunately, getting a diagnosis for any neurological condition, even RLS, often requires a lot of self-advocacy, especially if the symptoms are invisble to others. Here is a wonderful article from our sister community for people with rare diseases about self-advocacy: https://raredisease.net/advocacy. I hope it inspires you to keep pushing forward. Please know we are here for you whenever you need us and keep us posted if you don't mind. I will be thinking of you. - Lori (Team Member)

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