I have been experiencing extreme fatigue for up to 2 years now; left side facial numbness & tingling that comes & goes; what feels like bone pain in my legs; tingling in arms and legs (sensation of crawling); visual floaters left eye mainly like a bright white balloon traveling up the corner of my eye; memory confusion; left nostril nose bleeds; elevated homocysteine; frequent infections; and chronic sinusitis!! So fed up! Under 4 hospitals & multiple specialists. Could this be MS?
I was under neurology who did a 4 hour memory test and said I have a below average memory at age 47. They did a head MRI & apart from my Pituitary Adenoma nothing remarkable showed up. I had a spine MRI 2 years ago and I have 2 bulging discs, but again nothing remarkable. I haven’t had a spinal tap! Sounds painful!
I am currently under ENT, Lymphedema Clinic; Endocrinology. I was under the Eye Clinic and Neurology until recently. Plus, Urology due to urine urgency
I have a gut feeling everything is connected! When I am feeling the most exhausted it feels like my body is vibrating inside?
Oh, and I put a camera in my bedroom to check if my fatigue is linked to lack of sleep. Approximately every 8 minutes my arms or legs are going up & down, so am on waiting list for overnight sleep study. Consultant said it sounds like I have Periodic Limb Movement Disorder!
Any thoughts would be greatly welcome!!
Forgot to say that I am mostly always vitamin deficient- on and off meds for low Folate, Ferritin, & Vit D mostly. Inorganic Phosphate is often below normal range too! Plus, terrible cholesterol levels, as my good cholesterol always seems to be below normal range ( for ten years plus).
Please help with you thoughts / views. Huge thanks in advance xx
Could this be Multiple Sclerosis?
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Sparkle44
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Hi Frances, my B12 was highly elevated for a period at 799, then is came back down to within the normal range but at the high end.
Hi Sparkle,
Your symptoms certainly mimic MS. I was told to be 100% certain a spinal tap was needed. (it wasn't bad at all; I was as scared as you). The only difference is you didn't mention any legions found. That was a big tip off for my neuro Dr. I have them (a whole lot of them!) in my brain, spinal cord too. There are so many neurological diseases; all symptoms are very much alike. Maybe try a second opinion? The faster you're diagnosed the faster you can be treated.
Thanks Robbie! I hope you are doing okay! The only time the phrase lesion was used was by an endodontist, as apparently one of my teeth is attacking the root - external resorption. I will speak to GP again thanks x
I would think that there would have been obvious MS lesions on MRI considering how many symptoms you are having.
As mentioned already so many neurological diseases have similar symptoms it can take a while to get a definitive diagnosis.
You could also have a few different things going on. The bulging discs may be causing leg pain and/or the tingling in arms and legs depending where in your back the bulging discs are. The other symptoms can be from something else all together. It is very frustrating not knowing!
Many of us here have other medical problems that cause symptoms that can also be MS symptoms. It can be tricky for doctors to find the true cause.
Only the doctor could tell it. MS is a suddenly change, no necessary a heavy change, maybe an strange change but no hard, and after this change will be hard changes suddenly in a leg, face, eye, mouth, or hand. This was my case. And without stress the MS will be better. This is my case. Without the stress of a work, or because smoking, or no resting enough, or no sleep 8 hours, .... all this can be worst for MS.
When you rest, you MS will be better. This is my case. No smoke. For me was good the sport and no to smoke, and not to work.
There are a lot of different diseases that mimic MS. The fact that you have no lesions on the brain or spine that show really doesn't prove anything one way or the other. It just means you don't have any scarring. Get the spinal tap. With some people, that's the only way it can be diagnosed, with this disease, everyone is different. It's not that bad, I have had a couple over the years for different reasons. The key is to hold still during the procedure, it only takes a few seconds, and to stay horizontal for a couple of hours afterward. There really isn't that much pain, I have had injections that hurt worse.
I started with a negative spinal tap and inconclusive mri. Ten months later my neuro called it MS and put me on drugs with no further testing. I didn’t have another mri for nearly ten years and the MS was clear then. Sometime MS just doesn’t show up early on the tests. Don’t give up. MS or not, something is the problem.
Thanks for your reply Stacy! I think you are all sooo incredibly brave. I feel in my heart that there are too many symptoms for it not to be but I am afraid to chase them as I also don’t want them to confirm their diagnosis. I received blood forms today from my GP who has been requested by Haematology to perform some specific tests. I have also been referred to the Adult Metabolic Clinic! Wow I never knew all these clinics existed but hoping to eventually reach a diagnosis if only to understand what’s going on and to confirm I am not imagining all this!! Best wishes!
So many of us really understand the frustration of awaiting an accurate diagnosis. Medicine simply doesn't have all the answers, and neurological symptoms can come from many different causes. I was actually relieved to get my diagnosis because I could finally explain what was going on. I'm praying that you don't have to wait long to get clear answers so you can start appropriate treatment and that you feel better quickly. Keep us posted.
The spinal fluid analysis isn't truly definitive because one can have MS and still be negative for oligoclonal bands. About 10% of cases will be negative. I'm one of those, but I do have numerous lesions in the brain. That said, the spinal tap, done by an experienced practitioner, really isn't that bad. Most people feel pressure, rather than pain during the procedure. Just follow the instructions you are given.
Hi thank you so much for your email. I am interested to hear some of the symptoms you had. It must have took so long after your spinal tap was negative? I can understand the relief. I think you are so brave and I hope the treatment is making a real difference to you. Best wishes!
I had a Clinically Isolated Syndrome (CIS) when I was about 35, but the MRI and spinal fluid analysis were essentially negative then, so my neurologist at the time shrugged his shoulders and had no answers. Years of leg pain, continued migraines, and muscle spasms, and more followed, but it wasn't until I finally had a relapse about 20 years later that another brain MRI was done, showing the multiple lesions. Another spinal tap was done, but still no oligoclonal bands.
I'm not brave at all, and my treatment seems to be working well. No relapses for 4 years!
It is fantastic to hear that you have had no relapse for 4 years! Something must be working. I get what feels like bone pain in my legs! It’s horrible. Thanks for sharing with me and I wish you all the best moving forward! I will share the outcome of my investigations x
Everyone above has answered quite well. I would add that a neuro who specializes in MS will be better to diagnose it. (That being said, my own was diagnosed by a non-MS neuro who referred me to an MS neuro. )
Spinal tap/lumbar puncture...I have had 2. You curl up in fetal position to help spread the vertebrae. You get a shot to numb what the area. My husband was with me and said it was good I didn't see the needle! But all I felt was pressure. When it's done you have a simple blood test. I was told to avoid a bad headache (that I heard could be quite bad) was to keep your spine straight for several days (i took time off work). I never had that headache. So if you have to do it, don't worry about it.
Hi Jessie70 thanks for your message. Yes I have had genetic testing and they said I was a carrier of MHTFR. I have since been diagnosed with Fibromyalgia & Functional Neurological Disorder. The symptoms continue unfortunately! How are you? x
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