Another book I’m reading at the moment is The Man Who Mistook His Wife For A Hat. This is a fascinating account of tales of neurology.
Last night I was reading the tale of a woman who suddenly lost all feeling in her body, losing “proprioception”, so she could only control eg her arms, legs or even posture by looking visually and learning to focus really hard and without all the usual instinctive cues to help. This was devastating, but I was also struck by the initial description of her losing sensation in her limbs, and them going out of control, flailing around widely.
I have a 1 in a million progressive neurological disease, primary cerebral vasculitis, in a form very similar to multiple sclerosis. Feeling my limbs go out of control is a common sensation, going fuzzy, often like bubble wrap, or just very wooden and incredibly stiff. It is also more of a problem now, as my disease progresses more, and I rely even more on my two sticks and wheelchair. The account in the book struck so many similarities for me. I just wish I understood it all more.
I wish I could get more information about this from a neurologist. But I had a bad experience the time I did see a neurologist. I also know many other cerebral vasculitis patients who have had poor care from them, with neurologists often having a tendency to under treat this condition, even if they recognise the disease process. This can even in worst cases lead to death. I also know of multiple other vasculitis patients who have had a bad experience with neurologists at my local hospital. Rheumatologists are often a better bet for patients.
But yes, a fascinating book. And a recommended read.
vivdunstan
Viv's Academic Blog 
I haven’t read that, but I remember the title being mentioned back when a neurologist did the Reith Lectures. You might have better luck talking to a neurology researcher about whether they’d be interested in studying your situation than in consulting a neurology medic. A neurology medic’s job is to treat neurological issues, rather than to deal with neurological side-effects of a disease of another related part of the body. If I understand your disease correctly, the primary issue is with the blood supply, rather than with the neural tissue directly.
No, my disease absolutely falls under the remit of neurologist care. Primary cerebral/CNS vasculitis, where the disease only occurs inside the brain, not elsewhere in the body, is a disease of the central nervous system. So a neurologist should be able to help. It’s the same way a neurologist is often called in to treat a stroke, with similar underlying disease processes going on, though more acutely in a stroke (and many cerebral vasculitis patients have full scale strokes). Many cerebral vasculitis patients are referred to neurologists because of the range of neurological symptoms they show, resulting from the damage to the brain tissue caused by inflammation in the brain’s blood vessels. But often the neurologist care is poor. With a 1 in a million disease neurologists don’t see enough patients to build up knowledge and experience. They also tend to lack the widespread knowledge of vasculitis treatments that rheumatologists have, who treat vasculitis wherever it occurs. But it does mean we are largely in the dark understanding what is happening to me symptom wise. It is extremely distressing living with worsening neurological symptoms without knowing why things are happening as they are.