Just need other patient's advice...


I apologise in advance for my complex problem but just thought running my situation by MS patients might be helpful.

I do not have a diagnosis of MS yet. I do have Psoriatic Arthritis, Raynaud’s. I was only diagnosed recently but have had symptoms for ~5yrs and, no longer work due to arthritis. I take DMARDS, pred, and a lot of pain meds including gabapentin. I have a problem with spasticity that I have had for several years that makes me exercise intolerant. I have had this diagnosed in the past as likely fibromyalgia, thought I do not meet the criteria for this. I have tingling, numbness and RLS problems that all seemed to improve with gabapentin.

I have had episodes of severe spasticity, fasciculations, tingling, dexterity problems (NCV revealed carpal tunnel both wrists), weakness in my legs, fainting, two or three short episodes of oscillopsia 15 mins, one episode of vision loss and “seizure”? (not sure what it was, neither was doc) lasted one hour. In general I have horrible fatigue and cognitive difficulties that make life very difficult in additional to the pain.

The psoriatic arthritis has been improving for a month (finally), since I added prednisone to my meds, and I have most joints and my spine affected. About three weeks ago I had a severe bout of worsening fatigue/heaviness feeling, fainting and then severe fasciculations (could watch them) spreading from feet to neck sparing only lower arms. Legs very shaky, weak. Severe fasciculations throughout my torso and along spine. Doctor has put me on Baclofen and I’m to go back in 1 week when I’m up to full dose and side-effects hopefully have lessened. It is helping but very mind-altering. Better than the symptoms though. I now have had several days of severe spine pain at the base of skull, shoulder blade level, mid-back and SI joints (these and neck I known are affected by PsA).

Sorry this is such a long story…The other problem I have is mysterious pain mimicking gallbladder dysfunction. It started over a year ago with a band-like sensation around my middle and right-side pain. I had all the severe symptoms of gallbladder attack but all tests have been negative. It recently occurred again along with the fasciculation problem. My doctor seemed to have an aha! moment (she didn’t suppress it completely) at my last visit when she prescribed baclofen, which she said was an MS drug but told me not to worry (ya right!). My other symptom is incomplete bladder emptying and frequency at night and baclofen is helping with this. In the past these symptoms were all wrapped up with flares of joint problems so I always thought it was part of my severe PsA. This is the first time they seem to be happening separately.

Now I’m really worried that I may have MS or another CNS neuropathy in addition to my PsA. I am familiar with neuropathy symptoms as I have a brother with CMT peripheral neuropathy. Thank you for reading my very long story. I know no one here can diagnose but I wondered if some my symptoms might sound familiar. So far I have not had any MRI’s or scans, besides a HIDA for gallbladder. Any input appreciated.

Thank you for reading.

Hi, I reakon that you are having neurological symptoms. Sometimes arthritis and other autoimmune conditions such as lupus can cause neuroligical symtoms. Just ask to be referred to a neurologist for an MRI.

Moyna xxx

Thank you, Moyna