Pins and Needles : Hi does anyone have a pins... - Behçet's UK

Behçet's UK

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Pins and Needles

maggiemotherwell profile image
9 Replies

Hi does anyone have a pins and needles/small electric shock like feeling darting about their body, especially when they are using a computer/iPad or watching TV?

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maggiemotherwell profile image
maggiemotherwell
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9 Replies
Wannaba10 profile image
Wannaba10

Hi, yes I've struggled with the very same thing. Eventually it was diagnosed as Llermites sign and I was prescribed anti seizure meds. Hope you get it sorted.

jjadam54 profile image
jjadam54 in reply to Wannaba10

Hi and thank you for replying! May I ask what Llermites sign is? I have had the same experience with the electrical shock feeling. I was diagnosed with simple complex seizures around the same time and prescribed seizure meds. Has anyone ever discussed neuro-behcets with you? I'm seeing a specialist at the University of Pennsylvania in the next month or so to discuss and am trying to gather as much info or other BD patient experience on the subject as possible prior to the appointment. Hope you're doing well and I will keep you in my thoughts and prayers!

Wannaba10 profile image
Wannaba10 in reply to jjadam54

Lovely to hear from you.Lhermitte’s sign is classed as a type of nerve (neuropathic) pain, normally associated with MS I believe. I do have Neurological Behçet's disease, I was diagnosed a few years ago now. I take anti-seizure meds and they have helped the nerve pain, but it's not completely gone.

I've just returned home after a ten day stay in hospital. I was rushed in on 29th with double pneumonia, I have a suspicion that it might connected to the Behçet's.

Take care, and anymore questions feel free to ask xx

jjadam54 profile image
jjadam54 in reply to Wannaba10

I would agree about the connection to Behcets as my daughter suffers repeated bouts of Pnuemonia and myself with bronchial infections during flairs. Can't help but wonder if we would do better with an air filtration system in our home or oxegyn treatments. Don't think the medical field has gotten far with this idea yet? So sorry to hear of your struggles but know that we are with you in thought and prayer and take good care of yourself!

rooser1 profile image
rooser1

are you laying down when this happens?

Dr-CJA profile image
Dr-CJA

yes, I get pins and needles and numbness in my four left fingers. I also get numbness in my left foot and toes. It's very distracting when working. I find that regular exercise helps. As the numbness affects my balance I also find that power Pilates, yoga and body balance classes help with keeping me stable. (3-5 classes a week should do it - or there are lots of free classes on YouTube).

I refuse to take any meds and have researched extensively how to manage the condition more holistically. So I regularly see a chiropractor and also have deep tissue manipulation with a sports massage expert. I also get acupuncture through the hospital physio. Plus I have changed my diet: No processed food, organic products, limit or eliminate dairy and citrus fruits, no meat. Try Dr Sebi's organic health food recipes - you can find lots online.

jjadam54 profile image
jjadam54 in reply to Dr-CJA

I'm so impressed with all you are doing! Sounds like your doing all great things for your mind and body to get and stay healthy through the BD. Time for my daughter and me to start the same. Thank you!!!

Dr-CJA profile image
Dr-CJA

You're welcome. I wish you & your daughter all the very best. It's a long, hard road. But diet, exercise and self hypnosis are really great tools.

Dr-CJA profile image
Dr-CJA in reply to Dr-CJA

Plus, since my diagnosis I have changed my life: Successfully completed two Masters degrees, a teaching cert & a PhD, as well as training in NLP and Clinical Hypnotherapy. The latter two qualiifications help with managing the daily pain and BD mindset. So, I guess what I'm trying to say is that BD doesnt mean the end of life as we know it - it can be the start of a difficult but beautiful new path with the right mindset and a positive attitude. Rest when you need it and burn the candle a bit when you can too. Focus on the small pleasures rather than dwelling on the daily pain & discomfort. That's what helps get me through. I hope these are inspirational / words of comfort to spur a move towards positive life changes.