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Altered sensations

, I’m hopeful for some advice! At the beginning of May I woke up and I had numbness/altered sensations from my waist down, I had a full sensation up my bottom which was particularly unpleasant! The sensations changed over the weeks from freezing cold/hot/buzzing/tingling and tightness in my feet particularly. Few months on my legs and feet have mostly recovered albeit my right foot still has a tight band sensation but its my stomach that is really uncomfortable i have a constant tight band across my stomach, above me bellybutton. I can’t bare wearing things like jeans anymore as it seems to aggravate it.

My GP referred me for spine MRI. The spinal clinic said my spine was fine and referred my to a neurologist who I saw for the first time last week. He said there was a small patch of inflammation on my spine and has referred me for a brain MRI and he mentioned a lumber puncture possibly. He mentioned it may be ms. At the time of the symptoms I was suffering with a bad cold. I had similar sensations in my feet in 2017 but it went away a few months later. I have just turned 37 and I have two young children with a full time job so I do feel worn out sometimes and struggle on and off with constipation but apart from that I feel fine! What do you think? does it sound like I might have ms? I’m worried sick about it :frowning: is it normal that the neurologist didn’t offer any other explanation? I passed all the balance/eye test etc. thanks for reading x

Hello Louelle

I’m sorry, I’ve just seen that you first posted in May and no one answered you. What a shame, your post must have just been missed because it was at the bottom of an old thread.

It sounds like the neurologist certainly feels like MS is a possibility. They don’t tend to mention it unless they have fairly good reason to. This doesn’t mean that you will definitely get an MS diagnosis, just that it’s possible.

Of course you have the brain MRI and maybe the lumbar puncture too before you have any kind of answer. So don’t count any chickens until the neurologist has rounded them all up, counted them a couple of times, scratched his or her beard and given a firm diagnosis.

One good thing is that your symptoms have improved, maybe not completely yet, but there is still time. If the symptoms are indeed caused by an MS relapse, it can take months and months for symptoms to completely dissipate. So long that it’s almost a surprise when one day you realise that a symptom is better.

Again, if it does turn out to be MS, there are very many disease modifying drugs (DMDs) now available to keep relapses at bay. So it’s not such a disastrous diagnosis as it once was.

Once more, don’t imagine that what I’m saying means I think it is MS, it’s more that I’m trying to cover the bases and reassure you about the possibility.

Try not to worry too much. It won’t help or make the time pass any quicker. It could even make life harder for you. As it is you’ve got enough stress and worry in your life as a parent and an employee. I do hope the MRI is fixed for as soon as possible. You could try phoning the MRI department in your hospital after a couple of weeks have passed and make sure they have the referral. If it’s miles away, phone the neurologists secretary and see if it can be nudged any higher up the list (throw yourself on his or her mercy and plead for help! It can’t hurt.)

Let us know how you’re doing and what happens next. We’ll try not to ignore you again!

Sue

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Hi Sue, thanks so much for replying. I’m sorry I didn’t realise you had until tonight. I had a brain MRI with dye last week and have a follow up with the consultant on the 11th October. He said if there was indications on my brain that relate to MS then I would qualify for a DMD. At the moment by only diagnosis is partial myelitis which could possibly have been caused by ms. I’m nervously waiting to see if I get called for a spinal tap between now and then. I think if I do its possibly a good sign my brain scan isn’t definite enough to give a diagnosis. My symptoms have improved a lot but I still get this horrible sensation in my tummy particularly if I am tired or under pressure, with a mild buzzing feeling in my feet. I’m mostly ok, but today I felt panicked by the whole thing, the practicalities of it all. I rely on my car for driving and school/nursery pick ups and today I was worrying how I’ll cope if I can’t drive. It all just seems so hopeless at the moment and really scary with the unpredictability of it all. I just keep bursting into tears at the thought of being a burden to my husband. Not to mention not being able to do my job. I rely on the income. I just can’t bear it. You are all so strong about it (reading the forums) I don’t feel like i’m going to cope with it at all:(

Hello again

Just supposing it is MS, you recover from the current symptoms / relapse. You start a DMD. Future relapses are avoided or lessened by the drug.

You more or less remain in your current physical condition for years to come. You remain able to drive and look after your children. You can still work and are not a burden on your husband (and I bet that he wouldn’t see it that way regardless).

This is the likely outcome of a relapsing remitting MS diagnosis nowadays.

I have had MS for almost 23 years. For the first 5 years I had no DMD (they weren’t available then). I then had 5 years on Copaxone (one of the early DMDs) until it stopped working for me. I was still able to work for 10 years post diagnosis. Even after then, I was driving, walking, self caring, cooking, cleaning. I don’t have children so that doesn’t apply to me. All the other DMDs have been a failure for me due to side effects. (I have a really lousy system that can’t cope with drugs! I even restarted Copaxone recently but couldn’t take it due to injection site reactions!)

Today I am more disabled, but that is due more to damage caused to my system during relapses while I’ve not been on a DMD.

You live in a very different world to 20 years ago. There are now 11 different drugs (it looks like more, but actually a few of the injectables are just different formulations of the same drug) available to reduce the number and severity of relapses. In 2002, when the first DMDs became available, there were 4 and their efficacy wasn’t half as good as most of the newer drugs. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for more information about the DMDs available.

Don’t get me wrong, MS still sucks. It’s a cr@p disease, and if you are diagnosed you’ll go through all kinds of emotions from furious anger to self pity and depression. But it’s more likely these days that you’ll be able to carry on your life just as before.

And it might not be MS at all.

Sue

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Thank you Sue. I’m sorry to read you are less able now - how has it impacted you 23 years on? how do you stay hopeful/positive? Everything you write makes complete sense and I know I am worrying about something that might not happen. I just can’t help feel that’s what they are going to tell me in a few weeks. I’m also upset that throughout all of this I’ve not been offered anything to help with the symptoms just was told my body will heal itself but from what I’ve read early intervention may have lessened the effect of the myelitis. I think I’m definitely in the self pity stage of this journey which is not a very attractive mindset to be in!! I think I just need to get a grip. Thanks for sending the link which I’ve read. All the medications sound horrible and I hate injections! I’m such a wimp I’m really going to have to toughen up. Thank you again for responding. I’ll let you know what they say? x

Just got home to find an appointment has been made for me on the 1st October now, looks like its not going to be good news on the brain MRI seeing as they’ve pushed the appointment forward and not referred me for a spinal tap. :frowning:

Hi

Don’t think of it as a bad result. Just think it’s a result. And pretty quick too. At least you’ve not got weeks and weeks (or months) to wait.

The sooner you get a result (any result is positive), the faster you get some treatment, some disease modifying drugs (if it’s MS), the better. Some people hang about with no news, feeling like cra@p for way too long.

Stay positive (but by that I don’t mean you don’t deserve special treatment from everyone around you), and try not to worry. Anxiety never changed the results of anything. I totally understand that it’s easy to say and hard to do, just try.

And keep us informed.

Sue

Thanks Sue! I will post back after the appointment either way. The waiting is hard, this has been going on since the end of April/beginning of May which I know isn’t long compared to some but its been a flipping hard 5 months so far. Thanks for replying, this forum is brilliant, I’d definitely feel worse without it!