Last reply 10 months ago
Limbo land

Hi at the moment I am in limbo, I am 37 and started with pain in my hips which went on for a very long time on and off but became worse I was constantly tired and had numb feet and toes so I went to gp who referred me to the neuro I had a spinal mri which was clear in jan, since then my pain has become much worse especially at nights and has turned into a burning sensation in my legs like they are on fire, I am exhausted by afternoon and can sleep for 3 hours mid afternoon.
Since I last seen neuro my balance is all over the place and I keep falling over things, sometimes it’s like am drunk it’s the only way I can describe it when am wobbly.
I often find myself tripping over my words and say the wrong thing like fingers instead of toes, I often drop things at my work am constantly fighting this incredible tiredness.
I am on medication for nerve pain and I have low vitamin D levels too.
I am back to see neuro at the end of the month had nerve conduction studies on my legs which I was told was fine, I am at the stage I need answers as I don’t know what’s causing all of this ….. I suspect it’s ms.
I am under a lot of stress at the moment and I seem to be much worse again.
Would be nice to talk to people that understand how difficult this is and any tips advice would be greatly received

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10 months ago

Hi @niteowl and welcome.

We do understand how difficult it is, but we also have an appreciation of how hard it is for a Neuro to decipher the clues that has received.

Unfortunately, whilst some of your symptoms are representative of MS, they do also present in various other conditions. It is the Neuro’s job to “eliminate the possibles, then investigate the probables”.

All you can do is provide the Neuro with as much historical data of the strange symptoms you have experienced.

I will pick up on one thing you said. Stress is a major cause of many neurological problems. The brain responds to stress by producing chemicals which adversely affect our Central Nervous System (CNS).

Stress is most definitely best avoided. Ask yourself whether the cause of the stress is worth this affect on your health………………….

10 months ago

Thank you, yes she did say that it’s a case of elimination of everything else first. It’s very frustrating not knowing the cause, unfortunately the cause of my stress at the moment is something I can’t control hopefully it will come to an end soon and I can get to the bottom of what’s going on with my health.

10 months ago

Hi and welcome!

I know it’s very hard and frustrating. I experpience everything you mentioned plus more! You mentioned a spine mri, but not one done on your brain which is usually what they do first. People with ms can have lesions in one area, but not another or both and it’s more common for them to appear in the brain first. I’d recommend asking for a brain mri at your appointment. Also, they determin wether or not a person has ms by doing a lumbar puncture and looking at the results for that. I hope you get answers soon! Best wishes!

10 months ago

Hello @niteowl, sorry you are going through all this. Most would agree that it’s the not knowing that’s the worst thing. This sounds tough I know, but the simple thing is that worrying and speculating will not affect the course of what is going on yon and your body. You can’t change that; but any diagnosis will lead to treatment and a plan to help support you. You need to make a choice to stop becoming anxious, as this will always have a negative effect on your body. You are now in the medical system and can’t do any more than initiate this. Your doctor, friends and family, forums like this can all support you. But you need to support yourself too. So, be kind to yourself, indulge your needs whatever they are. Take care to sleep well and eat healthily. This is a horrible time for you, and hopefully you will never have to go through a time like this again, Be strong, take lots of deep breaths, treat yourself lots, and hang in in there x

10 months ago

@niteowl , it’s nigh on impossible to avoid the causes of stress. It’s how we manage them and let them affect us which is important.

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