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35yrs old just referred for MS

Hello all, I’m so glad to have found this forum as tbh I’m really freaking out!

My symptoms started around four years ago after my daughter was born, I put it down to having a new baby, the tiredness, pains and this foggy feeling in my head. Two years later the symptoms had worsened and had developed more. So I went to the dr and they thought I had fibromyalgia…shortly afterwards I separated from my husband and was a full time single parent and moved back to my home town the other side of the uk. The point I was trying to make is that I didn’t have the time or energy to think of me as everything went on my little girl for the next two years…which leads us to now. My symptoms have worsened…most mornings my arms and legs are numb like pins and needles it’s like they don’t belong to me and I can’t move them really until the sensation comes back…I’m constantly exhausted, I’m always forgetting words mid conversation and this overwhelming feeling of just being lost (in my mind) when I’m out and having conversation with people. I get a weird sensation as if my limbs, joints etc are tearing (like typing this on my phone my thumb to my closest finger feels like it could just tear away?) my brain just doesn’t work anymore and as I’m always loosing my balance or walking into things or falling down, getting light headed etc plus weird things like putting my kids shoes on for some reason I seem to put them on the wrong feet?? Oh and my penis has shrunk to half the size??? Plus so much more…I have spent a year begging my dr for help or for tests with no help so I asked to see another dr and explained the symptoms and he has referred me to a neurologist for MS.

i have been googling like crazy but nothing beats speaking to real people, I haven’t really spoken about this to anyone before as it’s all so new plus the way I am atm I tend to focus on my daughters social life so she can have the most fun as I can’t seem to hold a conversation these days. So I’d be ever so grateful if any of you could help me, is this how yours started? How do I slow down these symptoms, dr gave me Amytriplim but it’s not touching any of the pain.

I guess what I’m most afraid of and really asking is how long before I’m bed ridden? I don’t know how long this takes and I’m scared for my little girl so any help or advice would be so very much appreciated please.

ps I’m new here and new to this so sorry if the above is too much just this has been going on for years and I haven’t got anyone in my life with ms (luckily) so that’s why such the long post as I’m desperate

Hello Poorly Raccoon

The first thing you need to keep in your mind is that there are many, many other diagnoses that share symptoms with MS. So it’s not a given that you have MS. Even some vitamin deficiencies can look like MS (B12 or D).

Once you’ve seen the neurologist, gone through your history with him/her and had a physical examination, you may be referred for some tests, including MRI, Evoked Potentials, Nerve Conduction, Lumbar Puncture and others. Then you’ll see the neurologist again for the results. So this is generally a fairly long process. Many people remain ‘in limbo’ for months if not years.

When you do get the results, you may still be told it’s not MS.

But even if it is, by no means should you expect to end up bedridden. Of course there are many people disabled by MS. Some more severely than others. But there are today some excellent disease modifying drugs (DMDs) that will reduce relapses and thus disability. Even those of us who’ve not had the benefit of DMDs and have had MS for years/decades are still not bedridden. So a diagnosis is not the utter devastation that you fear.

What is probably a good idea for you, in preparation for your neurologists appointment, is to write down as best as you can remember what has happened to you in the past. Try to put dates to occurrences, note how long things lasted, whether any symptoms have just never properly improved and what’s completely resolved. It’s never a bad idea to keep a health diary or timeline anyway, it will certainly help you describe what’s happened.

In terms of comparing other people’s experience to your own, you should be aware that everybody’s MS is different, the way mine began is unlikely to be the same as the next person. We may share some symptoms, but not all.

Can I also suggest that you stop asking Dr Google for help? He’s a rubbish neurologist, will scare you silly and not give you any real help. If you want information about MS, use this site (see the tab at the top marked About MS), or the MS Trust. Both will give you reliable information which you can rely on.

Obviously we will be able to answer some of your questions too, but keep in mind that we can only go by our own experience.

You are quite right to concentrate on your daughter. Enjoy her childhood and don’t worry too much about MS if you can help it.

Sue

Like you Poorly Racoon my darling wife Trish was diagnosed with probable MS on Wednesday. She has had all the various tests and it is pretty sure she has been suffering from MS for 20 yrs and probably has a fairly benign version and like you she is worrying about the long term effects. For my part i feel somewhat spare and helpless not knowing what to do. Sssue above seems to make a lot of sense and from what I learned from the consultant each case behaves differently calling for different reactions and treatment. It would seem from what i have learned thus far that we need to monitor for relapses/episodes and the recording of them so we can relay this to the team which will then dictate the way they react. my uneducated advice is enjoy your family, take each day as it comes and keep in contact with your team. I know you can’t help worrying but that is counterproductive. You must be positive, at times that will be bloody hard But your team will guide you through. Enjoy your Daughter she will give much pleasure and laughs and the memories and love she gives you will give you strength. just like you need her she needs you. Good luck and much strength.