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Really confused and ready to give up

Hello, I need so advice on what to do. I have been suffering with back pain for many years but over the past two years the pain and numbness in my right leg has progressively gotten worse. I get tingling, pins and needles in both feet and shooting pains. I don’t suffer with any visual problems but do have dizziness and fatigue. My mri’s are clear and I’ve just had my lp and EVp I am really worried that if these come back clear where does that leave me? I’m in pain it’s coming from somewhere. I have two little kids and my husband is away for long periods at a time for work. I can barely drive as my foot sometimes feels like it’s hardly there. Does anyone know if this could be MS or something else?

I’m afraid there’s no way of telling you if it’s MS or not, but it’s a possibility - albeit just one possibility of many, including some relatively easy to treat conditions like vitamin B12 deficiency. Given that your symptoms are largely back & legs, have you had your thoracic and lumbar spine scanned? And, when you say your MRIs were clear, where did they scan? It’s possible to have clear MRI scans and still have MS, but it won’t be diagnosed unless other potential causes have been ruled out and the neuro is very confident. The main factor in these cases is the clinical exam so if you have clear abnormalities in your clinical exam (eg reflexes), but these latest tests come back negative, then I would say to keep pushing for answers - if necessary seeing another neuro, who may have fresh ideas. Karen x

Thanks so much for replying!! Basically I had my lower back, cervical, thoracic, and brain scanned all of which did not highlight any abnormalities. The reflexes upon my first consultation I was told were slower on my right side. He mentioned brisk reflexes particularly on the right but plantar responses are flexor. No idea what that means. I had bloods done too and my b12 was fine but my iron and ferritin was low however this has been something I’ve suffered since I was a kid whereas my back and numbness has got worse over the past 5 years. I’m Scared

Plantar reflexes are what’s tested by scraping the sole of the feet. A flexor response is normal.

The fact that your whole spinal cord and brain have been scanned and nothing abnormal found means that MS is pretty unlikely, but it doesn’t rule it out completely. Hopefully the LP and VEPs will shed more light on what’s going on.

Try not to worry. Whatever happens, IF you need it, there will be help available whether meds & therapy or more practical stuff like an extra pair of hands. More often than not, reality is nowhere near as bad as we’d feared. It’ll be OK.

Kx

That’s what worries me more, what if the other tests are clear where is the pain coming from. I feel like I’m going mad

Can anyone help me? Last couple of days and the pins and needles have become more prolonged. I don’t have my follow up till the 28th :frowning:

Hi Suki,

I know it’s scary when you know something isn’t right and you don’t seem to be getting any answers. Please don’t give up hope, things do have a way of revealing/resolving themselves…i know this could take time and is not much comfort right now when your struggling but worring too much will not help anything. See what happens on the 28th and take it day by day. You have a family that love you and nothing will stay hidden forever, whether it’s MS or or not…you will be ok. We are all here for you, good luck :0)

Best thing to do is probably see your GP and ask for something to help: there are loads of meds that can help sensory symptoms, e.g. amitriptyline, pregabalin, gabapentin. The GP may be unwilling to prescribe anything before you get a diagnosis, but there’s no harm in asking (and begging if necessary!).

If you have no luck, then distraction can help a lot. This is basically because the brain can’t concentrate on too many things at once so if you use all its resources playing a video game, watching a film, reading a book, etc, then there’s nothing left to notice the painful symptoms.

Other things that can help sometimes are ice packs, heat pads and massage: overwhelm the brain with a “real” sensory signal so that the “fake” ones can’t get through.

Meds tend to work best, but the other things may give you some temporary relief at least.

Karen x

PS This is assuming that your symptoms are caused by MS or something similar - you may find these things don’t work or even make things worse, so please be careful.

Hello,today I received a call from the consultant had a meeting with him and my csf protien and antibody levels are raised. He suspects a autoimmune or connective tissue disease but isn’t sure until all results are back :-/

Hi I received some of my results and I had raised protien oligo something’s in my csf fluid. I’ve been told I have some sort of autoimmune disease and they are waiting for the rest of my results before a diagnosed cab be done properly.’ I don’t have a clue what to think all I know is I’m getting worse :frowning:

No idea what it means either just wanted to send you a hug (()) the waiting is awful . Have you got another appt date yet?

12th July. I was given medication to help with the numbness but its made me sick so I’ve stopped. I’m in limbo :frowning: