Neurological symptoms for over 2 years and no dx
Posted , 4 users are following.
I am a 33yr old male and have having some recurring neurological type symptoms for around 3 years now.
This all started with strong tingling and electrical type zaps in my glutes and back of legs. At the time my doctor referred me (as I had private medical cover) to an orthopedic surgeon who scanned my lumbar spine and checked sacro-illiac joints and found nothing. He referred me to a physio where I underwent a few sessions. Symptoms settled down after a few more weeks.
Now this has continued to flare up for the past few years and can last anywhere from a week to a month. In addition, I now feel the tingling down legs, up my back and sometimes in my neck and face. I have zaps all over my body.
Having revisited my doctor last year they referred me to a neurologist who has scanned my whole spine and head and can find nothing to report. In addition I have had an EMG to test for nerve conduction as I has muscle twitching in right arm and left leg and again he said this came back as “unremarkable’. He was reluctant to do a lumbar puncture as he didn’t feel any of the other test showed any flags that would suggest it was warranted. He put me on amitriptyline to try and ‘break the nerve pain cycle’, this I didn’t get on with and turned me in to a compete zombie so I stopped after a week. I felt at the time this was just a brush off as he couldn’t find anything physically wrong with the scans such as a slipped disc or legions on my spinal cord.
At the time of neuro referral my doctor conducted some blood work to find that I was deficient in vit D and b12. I have subsequently been taking daily supplements for over a year and have been told after having my bloods done around 6 months ago levels were within tolerance ranges. The only thing that flagged was that my liver enzymes were towards the top range but they weren’t concerned by this.
In addition when the ‘flare up’ is at its worst this can present urinary symptoms such as an urge to go all the time. When I last visited dr to discuss this they diagnosed me with prostatitis and gave me a month of antibiotics. This has cleared up urinary symptoms but tingling and zaps have continued.
I’m at a complete loss having seen numerous consultants who can’t find anything but I know my body and now that something is not right. Other than these symptoms I would say I was in good health. I have never had any medical issues previously, I exercise and eat well. Last time I saw my doctor he said maybe it just falls under the ‘cannot diagnose’ banner, but this has made me even more worried that I cannot get to the bottom of what is going on.
Any advice as to where to turn next would be much appreciated and apologies for the long post!
0 likes, 3 replies
Nolal2 tim77052
Posted
Hi Tim,
From my understanding Neuropathic conditions are not always easy to diagnose, however peripheral neuropathies can be treated with Lyrica or Topamax. Both are anti seizure medications that are also prescribed for neuropathy pain, tingling etc. There can be many side effects but benefit has to be weighed against the risk. I have a friend whose partner takes Topamax for nerve pain associated with a motor vehicle accident and he's says it's a miracle drug for his pain.
slay2k tim77052
Posted
In a somewhat similar boat in that I've had electric type jolts in my abdominal area along with body wide fasciculations. Also low on Vit D and B12, so supplementing those. Getting better w/ time but came back as a kind of flare a few weeks ago, getting better again.
Exploring links to diet. Did most of the major tests which came back clear and so I still have no diagnosis. Still dealing w/ fasciculations and occasional abdominal area spasms. Yay!
jeffc1982 tim77052
Posted
Hi Tim,
I'm in the same boat you're in. I seem to have a few more symptoms than you. But I can't get any answers. I've done just about every test. I've seen multiple drs who come back with no answers. I'm going on two years now. On top of the symptoms you have I also have vision issues and testicle pain. All of the symptoms come and go. Please keep this post updated on any results. Like you I know my body and something isn't right.