After over 6 months of symptoms I finally saw a consultant neuro privately (yes it was even a 5 month wait through BUPA) and I am so disappointed in the way I was spoken to and treated.
For clarity, I’ve been having symptoms for around 6 months which include extremely heavy right arm, squeezing “blood pressure cuff” type feeling in upper right arm, constant and debilitating pins and needles and numbness in right hand (sometimes left), cramping and stiff hamstrings and calf muscles, twitching muscles in biceps and triceps, eyelid twitching, trigeminal neuralgia and an intermittent tremor in my right hand as well as unsteady “off balance” feeling.
I have Parkinson’s on both sides of the family also.
He did quite a basic neuro exam including basic reflexes in knees and ankles and arms, the Babinski test, and the shook my arms and legs about a bit, tested my peripheral vision and my grip strength. He then got me to try to raise my legs against pressure whilst lying on the couch and declared loudly that I had a positive Hoover’s sign (and I already knew what this was after doing some reading).
He then spoke at length about how Hoover’s sign shows that there is no real problem and that as he could not lift my right leg off the couch when he was distracting me with tests on my other leg, that everything was “normal”. I’m not even sure this IS a positive Hoovers sign, as he described it, and I at no point ever claimed I DID have right leg weakness as a symptom.
He told me that it definitely wasn’t Parkinson’s as it does not present with tremor like I have, only tremor at rest, then said he noticed my thumb tremor disappeared when he distracted me with something else.
When he did the ankle reflex test he said I had a “startle” response (my leg seemed to jerk after the test) and said it was “interesting” with a smile on his face.
He has since written to me with all of his “findings”, and said that he is referring for an MRI of brain and C-spine but that he is confident that the neuro exam was normal and that I should put my fears of Parkinson’s aside (even though it was HIM who asked about neurological diseases in the family!)
I have been left feeling as if he disregarded everything I said, in fact as I was in the consult which I paid privately for and which he was 20 mins late for, I didn’t even go through everything on my list because he made me feel so stupid and embarrassed, and as if I was fabricating the entire thing. I had a video on my phone that I managed to capture of my foot muscles jumping around and twitching on their own and he wasn’t interested at all and I got so flustered that I couldn’t find it on the phone to show him.
I have just got back from a week abroad and all of the symptoms were much much worse on holiday, my legs basically seized up while trying to get down some steps, and the pins and needles were atrocious so much so that I am now having trouble falling and staying asleep.
This neuro said to my GP 4 months ago when she emailed him, before I even saw him in person, that muscle twitches and pins and needles are most often “benign” and didn’t want the GP to arrange an MRI beforehand until he had saw me in person, and I feel that he had made his mind up before I set foot in the door.
The only reason he is ordering an MRI (which is tomorrow) is to be able to discharge me from his care.
He then said that white spots on an MRI are usually indicative of age related changes and its probably not MS either even if the MRI comes back with white lesions.
There was talk of “functional” and “Hoover’s” and other things said in a certain dismissive way that implied my symptoms are somehow psychosomatic or in fact that I was faking them.
I’m just defeated at this point.
If the MRI comes back clear it will just confirm in his mind that I am a time waster.
And I’ll be left with these symptoms and nowhere else to go.