Last reply 11 months ago
Ms or fibro

Hi all, a little about my story….. I’ve been having numbness and tingling for years in my hands feet and toes, maybe ten years .

About 5 years ago I noticed a change when walking, it seemed like there was weights in my ankles and found walking very difficult and painful. In that same year I woke up one morning with a pricking type feeling in the right side of my face….weird although scary I paid my gp a visit. And he said we will keep an eye on things, it went away the next day.

Then a few months later I started to forget things like conversations, names, numbers etc along with that I was getting my words mixed up when speaking.(kids laughed as everything was coming out mixed up) lol. So back to gp and she said she was referring me to neurology to be checked out.

Then July 2013 I had this horrible pain in between my shoulder blades never had pain like it… was like someone was squeezing me there was burning and pressure pain with it, it lasted a few weeks.

Then I was sent for an MRI in 2014 in which showed I had 6 lesions on my brain. Neuros said might have been caused by a virus. Because other than problems with my memory etc numbness n tingling, I did not have any other symptoms. Like double vision, bladder issues etc.

So to continue….. My speech got worse to the point It was annoying me, my legs were going numb here and there, I was having muscle tightening, and the odd spell of weakness in arms and legs. While being seen by the neuro every 6 months, then in 2016 I had that horrible pain in my back again which again lasted weeks. I was put on steriods for 5 days along with an anti viral.

Have to say after a week or two I felt a bit better. Then my neuro requested I had more MRI’s on brain and spine. Which the follow up dec 2016 showed more lesions on my brain and spine was clear. So he asked about symptoms etc and I told him about my back and a few other wee problems with my legs and feet (cramps in feet and toes etc) so he then mentioned MS, though said I might have a mild form.

So he sent me for a lumbar puncture Jan 2017, and a eye test two months later, so in been having these tests done I have been experiencing lots of different symptoms I woke up one morning in Jan with a prickling sensation on the left side of my face and leg, could not stand as my leg was weak along with numbness tingling and pulsing sensations then burning in the thigh area of both legs but left side worse, I’ve had a sell of double vision , twice. And bladder problems not being able to hold it.

I went to my gp and was put.on steroids and antivirals again for five day’s.

A few weeks later I felt at ease, though still had the pricking sensation in face n legs ….thigh area. Its been a total of 8weeks to be precise. On the 8th march I was just saying to my daughter I’m feeling a lot better than I have been thank god, being able to do a lot more round the house as most of my symptoms had gone. Then a few hours later I was struck with the strangest feeling that someone was squeezing my brain and as I was on the chair I couldn’t move, its was as if I was paralized my whole body went numb, it scared me to death. It lasted a few hours then the prickling sensation returned and since then my muscles are tight and weak.

Back to the gp again yesterday and back on steroids again for 11 days. Hope to get sum ease soon. So my question is…… Does this sound like ms??

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1 year ago

Hi @lesa14 and welcome.

You seem to have so much going on. You need to make a list of all these symptoms and make this available to your Neuro. They should have the results of your Lumber Puncture and Visual Evoked Potential (VEP). This should allow them to make a diagnosis and suggest a potential treatment plan.

Your Doctor seems happy to keep pushing Steroids and anti-virals. It remains to be seen whether the dosage of the Steroids was strong enough to make a great difference.

This whole situation must be weighing heavily on you, giving rise to stress and anxiety and their related problems.

I hope your family is helping you out whist you’re struggling. You might want to impose on them further, so that you can take it easy for a time, to allow your body time to try and heal itself.

Yes, it could be MS. But this is your Neuro’s call now that he has the MRI scan and the results of the recent tests.

1 year ago

Hi Stumbler thanks for the info, I’m hoping I will here very soon from neuro, as all this is getting me down. My legs seem to be more effected at the moment with lots of different things going on with them, plus they are weak all the time along with aching muscles.

What were the results of the lumbar puncture and eye tests? While this is a discussion you should have with your dr, in my personal and non professional opinion your dr is not giving you the diagnostics you deserve in a timely manner. I think your dr is wrong if he can diagnose a “mild” form based on the data you have shared here. This is outdated thinking in my view and while there is a chance he could be right this is your life and you should aggressively seek a second opinion. Everything you indicated sounds like it could be MS and it looks like the dr could have ordered some of the tests much sooner then he did. Wishing you all the best and to make sure you advocate yourself.

1 year ago

Hi, my own gp told me the neuro checks for o-bands and I did not have any this time. But he said there is a percentage of people with ms that won’t have them. And I’ve had a lot of changes in my body since DEC 2016 that was when I last saw the neuro, so I have lots to tell him when he sends for me.

1 year ago

Hi all hope everyone is well, anyway just updating since my last post though still no answer to why I’m feeling the way I am. Anyway had an appointment with neurologist on Thursday for my results and he said I had clear results for my lumbar test and bloods, he said he doesn’t think my lesions are ms related now, though because I have had a lot more symptoms since November he is going to chat with another ms neurologist first and get back to me, incase this is ms and I’m one of the very small percentage of people that have clear results but have ms, confused I am

1 year ago

@lesa14 , I’ve moved your update onto your original post for you. I thought it was better than “hijacking” another person’s post.

Here’s a bit of detail about the Lumber Puncture, and what is being looked for :-

Primarily, the presence of oligoclonal bands is checked. If they’re present, this indicates disease activity. It could be that there was no activity when the test was done, but I’m just guessing on that score.

The lesions still need to be explained, so hopefully this other MS Neurologist can help.

Given the circumstances, it would be useful to makes a list of all your unexplained symptoms, together with a timeline. Keep this up to date as a symptom diary, then summarise this for your next appointment. It may help.

1 year ago

Hi Stumbler thank you for the reply and info, and thanks for the move to my own post as I did not realise I had hijacked some ones post. Sorry

1 year ago

@lesa14 , no need to apologise. I didn’t want your update to get lost in another problem. 😉

11 months ago

Update since June…. I’ve had continuously weak legs and arms, fatique, spasms and numb hands and feet, was down seeing my gp
On Monday who wanted to give me gabapentin but I said no, as I’m already taking Amitripyline. Anyway off to see my neurologist on Thursday again so I will just have to wait and see what he says.

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