Couple of questions for a newly diagnosed

Hi all, hope everyone is doing well or as well as can be.

I was diagnosed last thursday and today received my referral letter to the MS clinic so things are moving really quickly.

  1. My current ttack started 8 weeks ago. Affected feet, legs, waist, hands, forearms, chest. Still have numbness in hands, forearms and chest and ‘sticky feet’, pain in legs that is intermittent… could this be permanent now?

  2. Does the fatigue lift? I have been battling it for 6 months. I have had 2 attacks in that time… is the fatigue linked to attacks or can it be a lingering constant symptom?

  3. I am so moody, especially since my diagnosis and I hate this… I am so full of questions yet deep down I know many cannot be answered.

  4. My GP said its not yet known what type of MS I have. My assumption would be it has to be RRMS if i have had symptoms that have subsided. Is that correct?

I am really sorry in advance if these questions are unanswerable or irrelevant. I think I am just feeling so lonely right now. Nobody can possibly understand how apprehensive I feel except for you lovely lot.

Hello sweetheart, your anxiety and concerns are all absolutely normal.

You’ve only just been diagnosed and it’s a lot to get your head round, I know.

RRMS can be disabling, but if there are any DMDs suitable (and your neuro will discuss them with you), you could feel so much better on them and not have attacks as badly as the one you are in now.

Dont apologise for asking anything here.
We’ll do our best to support you.

I’m an oldie, with 24 years of PPMS behind me. I’m 69 now.

Fatigue is a big issue for many…me included. Best way to cope is to ensure you rest between activities and not overdo it.

love Boudsx

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In simple terms: maybe, yes, join the crowd, and probably.

  1. We never really know which symptoms are going to become permanent. For me, most are intermittent, but sometimes they stick around for up 2 years. Some I’ve had for only a few days and then never dealt with them again. With any luck, your symptoms will stabilize shortly, and in time you’ll learn to recognize them as warning signs that you’ve pushed yourself too hard, this activity is no longer any good for you, or that you’re beginning a relapse.

  2. Fatigue is probably the most common issue we all deal with. The levels of that fatigue can be adjusted to a certain extent by what you do. You’re going to want to rest more often, even if it’s just sitting down for a few minutes. You may have to limit or eliminate some physical activities or just change the times of day or year that you do them. I do best now between the hours of 10 am and 2 pm, and I prefer Spring and Fall over the other seasons because the temperatures aren’t as extreme.

  3. Moodiness hasn’t been that common for me, but many people have issues. Right now, you’re grieving whether you realize it or not. Getting a diagnosis of MS is a shock to most people, and it’ll take time to work through those stages. If you find yourself unable to cope with your feelings of sadness or anger, please seek professional help right away.

  4. Most of us are “lucky” enough to have RRMS rather than one of the other variations. Think back over the last few years. While MS symptoms do sometimes just pop up out of nowhere, many people realize that they’ve had issues for years but chalked it up to something else. If you’re one of those, then yes. You definitely have RRMS right now.

There are no bad questions. Somebody somewhere has dealt with everything already, so ask away! Welcome to the private club that none of us joined voluntarily.

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@PBMS thank you for your kind words. My neurologist has really rushed me through which is lovely and my first appointment with my new consultant is Thursday 21st April so I think once I have that, I can settle down and be better informed.

I have a 12 year old boy and a full time job and I keep trying to carry on as normal for the sake of both and I suspect thats just taking its toll a a little so I am grateful for the long weekend.

I hope you have a lovely Easter. X

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@NorasMom thank you for taking the time to write such a detailed reply and for your kind words. It has come as a shock so I think I am just processing.

In terms of the last few years, I don’t feel I can pin point anything except for maybe a bit of dizziness which I know can be a symptom. However, the last 6 months I am like ‘ahh, ok. That makes sense now’.

My first known attack would have been my entire left hand going numb which my gp suspected was carpal tunnel. After about 5-6 weeks it recovered. So I had 2 months between attacks but fatigue has definitely been real the last 6 months and general aches, pains, just always feeling poorly.

According to the neuro who diagnosed me, I had a lot of old lesions that were or are asymptomatic.

I hope you have a lovely weekend. We are lucky where I live as we had lovely warm sunshine yesterday so I went out for the day with my boy. Suffered last night for it but it was worth it :slight_smile: