Well I’ve been a limbolander coming on for 12 years now, my gp sent me back to neuro last year as I started with a new symptom to add to all my other stuff, neuro told me I was suffering with sleep paralysis and that it is a symptom of ms but as I was tested for ms 5 years ago it can’t be that. My gp is really fed up, she referred me as it was a new symptom and not just a flare up of all my other symptoms and they should have started to process again. I was also sent to a different doc due to dimming of vision in my right eye, which I’ve had before and they told me that I needed to be seen by neuro. Really fed up now, not getting anywhere!!!
Hya, firstly, the fact that you were tested for MS 5 years ago does not mean that you don’t have MS. If you are still experiencing MS-like symptoms you should really have an MRI scan again. It’s possible that lesions that were not showing 5 years ago are now showing. Yes you should have started the process again and I’m surprised neuro didn’t order a new MRI.
Is the different doc who saw you about vision in right eye going to refer you to neuro?
Sleep paralysis is not necessarily an MS symptom. Many people without MS get it also. I started getting in my 20’s and was not dx with MS until my mid 50’s… so I’m pretty sure mine had nothing to do with MS, although I still get it. It can also be a side effect of a drug. Gabapentin is known to cause it in some people.
If you are not currently being referred to neuro you need to go back to GP with list of symptoms and ask to be referred again.
After numbness in my arm in 2005 I saw a neuro and had an MRI which was clear. Then in 2008 I had an attack, more numbness, extreme fatigue, leg and arm weakness and my GP kept saying no need for MRI cos it was clear in 2005. He said that it was a virus. I recoved 95% but was left with growing spasticity in right leg! I eventually booked private appt with neuro and he did an MRI and a lesion was fount this time. Still dont have confirmed diagnosis yet though!
Thanks guys, My gp has been with me from the beginning, really helpful and frustrated as hell at the moment, she was convinced that they’d start the process again, but no been told next time I get anything new now to get myself to hospital to have it checked out. Problem is if they can’t dx it they end up sending me to own gp to get referal, complete roundabout every which way I turn.
I don’t just have ms symptoms and docs and neuro’s seem to have a hard time taking out the stuff that is nothing to do with it. I have symphis pubis dysfunction and have had it for 12 years, also arthritis in various joints, angina, asthma and was born with slow transit colon, oh and I’ve started early menopause which is lovely. The hot sweats set off my neuro crap so sick, dizzy, disorientated etc., till I cool down. The ms stuff has added too over the years, different flare ups have added different things at different times, each flare up eventually getting better but leaving a little something behind. I get buzzing from neck down and into arms and legs, numb half of my big toe left foot, numb little toe right foot, partial feeling right leg and base of back. Positive upgoing plantars (or so I’m told on exam) fatigue, muscle spasms in various places, tn, eye problems, weakness in hands etc., lots of other bits including the sleep paralysis, if I get over tired it also makes the weakness and numbness worse to the point of it I carry on after my body says enough I end up losing the feeling and have to sleep.
I don’t take gabapentin or pregabalin as I have adverse effects with both. I’m on fentanyl patches, meptid, nefopam, amitriptyline and baclofen for spasms. Also angina meds, and inhalers.
Have you ever been tested for Lupus. This can cause joint problems, sweats, early menopause and neuro problems. Attacks also tend to come and go like flares. It is another autoimmune disease and other common symtoms are rashes, thinning hair, raynaurds disease (white fingers when cold) and carpel tunnel syndrome.
Yep been tested for it too, early menopause caused by having to have one of my tubes removed 13 years ago due to ectopic pregnancy and I don’t have thinning hair, it’s nearly to my waist and the only time I get rashes are when they give me meds I’m allergic to, although have had rash due to septaecemia 18 years ago.
Will just stay as I am till they figure something out.