Just been diagnosed with PPMS

Thanks Moira, that’s helpful to get that perspective. So far, I’ve just told friends that the MRI result isn’t entirely conclusive so am going for a spinal tap to hopefully confirm a diagnosis. No one seems to be picking up on that as sinister, but maybe it won’t be as much of a shock when I tell them. I’m not sure I’m ready for all the chat / gossip / interest in me, I feel like a complete fraud because I don’t actually feel ill. Your neuro physio sounds fantastic - was it mainly exercise that helped? Just been to the gym today, to try and blow away the cobwebs a little bit.

Anne x

Thanks Anthony, that sounds like a good tip. I might try and find out a group when I get my ‘proper’ diagnosis at the start of August, I think I need a support group to be honest with, and hopefully a chance to support other people. Good idea, much appreciated :slight_smile:

Anne

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Feeling good today - I spoke to my line manager about the likely diagnosis (in strictest confidence) and I think work will be supportive. My step daughter was told by accident, and she’s been so lovely too. I am feeling tingles and numbness all over today, but I strongly suspect that’s psychological, but we shall see. Taking biotin, B12 and D3, went to the gym yesterday and am going to aim to walk on my treadmill tonight. I am thinking of looking up some stretching exercises to try in the morning too, so that’s another thing on the list. Definitely not interested in the footie!! I must also lose weight - that’s got to be a priority to help me deal with this. So there you go, a few things to plan for. I know, it’s all to give me an illusion of control but whatever helps :slight_smile: Hope everyone is having a good day/evening. Anne x

Yes, it was exercise, but very specific exercise to remake the nerve / brain connections. It was much more specific, deliberate and slow than normal exercises. The work with my neuro physio is so very different to any other physio I’ve had in the past. I too go to the gym. In fact I’ve been there this afternoon for the first time in several weeks due to amazing weather and holidays.

Best of luck with whatever lies ahead and don’t feel guilty about feeling well - enjoy it!

Moira x

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Sorry so late in replying Anne , you’re life may be different, but it can still be good , we just find a differnt way of doing things. Ive been a wheelchair user for 5 years, it was hard at first but now it’s second nature. I still have some mobility in my home. I have a fantastic companion called Frazer, he’s a golden retriever assistance dog trained by Canine Partners. We have loads of adventures together. I’m not diagnosed with ms, still waiting for answers. Michelle and Frazer xx

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Hi Michelle, sounds like you and Frazer are doing well, dogs can make such a difference to your life can’t they? I love their loyalty and the fact that they care. Thanks for the advice, that’s helpful. Is it hard not having a firm diagnosis or does it not really make any difference? I think I would find the uncertainty really frustrating. Hope you’re having a great day :slight_smile:

Anne x

Thanks Moira - that sounds really intriguing, definitely giving me some ideas about how take this forward, that’s good to hear about the neuro physio, were you referred through the NHS or did you find him/her yourself??

Hope you’re having a good day!

Anne x

Hi Anne

No chance of anything like that on the NHS round here (Cumbria) but a good physio friend of mine suggested I go there when I told her about my diagnosis.

Lousy weather here this morning but off with a friend to buy hand puppets for our church toddler group which we run.

Moira x

Well, just a quick update to myself really. It’s been a week and a half since the neuro confirmed that I most likely have PPMS, with a spinal tap next Friday. I feel okay, I knew it was coming so the shock isn’t as bad. I did cry a bit last night, not the sobbing of the first night but a bit of feeling sorry for myself. Feel okay today though, and we have started to look at long-term changes. Interestingly, I’ve had a stinker of a cold and that has made my symptoms 100% worse - scarily so. Once that started to lift, I DID feel a lot stronger again. So that’s something to watch out for. Very anxious about the spinal tap, I’m overweight so suspecting that won’t be a barrel of laughs. But at least it won’t be as goddamn claustrophobic as the MRI scan, which was horrendous because it took 90 minutes and made me feel wiped out. I’ve started to slowly let people know that this is a possible diagnosis - must like the consultant has done with me, I’m putting it out there. If it was going to be RRMS then I would consider keeping it private, but this is not, so it seems to be foolish to hide it. I don’t know. Once I get a full diagnosis I am going to take it further at work and so on, but just now I am keeping if fairly confidential. I also struggle to handle other people’s reactions, I am not yet ready to comfort or reassure them. Happy Sunday! Anne x

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Hello Anne

A couple of things about the lumbar puncture.

The first is that it doesn’t hurt. They numb the area, then give you a local anaesthetic, then do the test. And it’s literally a needle slid in between two vertebrae so it’s not such a problem as it sounds. And don’t forget everything is done behind you, so you don’t even see the needle.

The other two things to be aware of that the potential for a ‘headache from hell’. It’s to do with reducing pressure in your spinal fluid. What you should do to avert this possibility is insist on being able to lay flat in the hospital for a minimum of two hours after the LP. Also, to ingest a lot of caffeine during and after the test. The best thing is to drink lots of full strength (fat) coke with a bendy straw (so you can stay laid flat). The sugar as well as the caffeine helps. Some people get the nasty headache regardless, and others don’t do the coke/laying flat and don’t get the headache. But it’s worth doing.

I personally don’t see one kind of MS as worse than any other. With progressive MS, you don’t have the potential for sudden relapses that can do immense damage. But some people progress much quicker than others. So some people are horribly disabled by relapses. Some by progressive MS. And others are less seriously disabled with RR, SP or PP.

So regardless of your ultimate diagnosis, it’s very much a matter of luck as to how severe your MS is likely to be. And regardless of the ‘type’ of MS, it’s still lousy luck having any variety.

Hopefully your LP is not too traumatic for you.

Sue

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The Barts Guide to lumbar puncture is useful and seems that asking for the right needle is key to reducing the risk of headache.

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Good morning - oh my god it’s hot here today! Today is the day of the lumbar puncture, so thanks for the input and support and advice Whammel and SSSSSSSSsue (too many Ss) and all of you! Fingers crossed all goes well, am feeling good about today. Hope everyone is thriving :slight_smile: Anne x

I wouldn’t worry about the lumbar puncture Anne. It’s quite a simple process these days. Gone are the days of large steel rods & welcome to the new finer, flexible tools. It felt like a cold tickle up my spine & it was over in minuets. The sitting around waiting, took what seemed an eternity.

Fingers crossed you don’t get the diagnosis of PPMS / RRMS or any form of MS. Life goes on regardless.

Terry

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hi anne well don’t look round to see the needle. i did but a caretaker was fitting a new fluorescent tube to a light and i almost screamed! you will be fine. you are a survivor.

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Well, I had the LP / spinal tap yesterday and was zonked all of yesterday but feeling a huge amount better today. It was a weird procedure, they numbed up about 4 sections and tried for over an hour, so my back is bruised like crazy today. The closest thing to describing it is like having a root canal in your spine! They didn’t get the fluid, so I have to go back in a week or so to have it done again. The doctor said with a guided X-ray it should be much faster next time so that’s absolutely fine. It’s not a pleasant procedure, and a couple of times there was pain rather than pressure.

Gorgeous day today, definitely too hot though!

Anne x

Hi Anne

I’m sorry you’ve had such a lousy LP experience. I’m not surprised you were zonked yesterday. What an ordeal.

I hope next week is a better experience all round. And it should be OK with the x-ray.

Enjoy the lovely weather. It’s so unusual that everybody is getting their share of warmth and blue skies. Just stay cool with fans, blinds/curtains closed and plenty of cold drinks.

Sue

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Hi & welcome. I was very open about my diagnosis for a couple of reasons - firstly I was ‘on a break’ with the gym, pending my spinal MRI result for about three/four weeks before diagnosis. The gym closed down a few weeks later, so I kind of dodged a bullet as my invoices were all paid in full. So I announced it on Facebook, I worked as a contractor for my main job, so again it made sense that everyone had the complete picture. I’m so sorry to hear you had a bad time with the LP, I hope there’s a more success next time. I didn’t realise weight could be an issue til I did a trial. I remember the doctor on the phone, she eventually asked (after talking about fitness) if I was fairly petite? when I said yes she started to reassure me, quite enthusiastically about the LP and she sounded relieved to be honest. On meeting her it was quite clear to me she was happier in the lab than doing the patient facing stuff - she was way too lovely to be a neurologist. I remember the fear tho and it’s gut-wrenching you have to go again when it’s been so horrible. Crossing my fingers for you Sonia x

Hi Anne and WELCOME to the board. I am sure you will fight it and laugh bought the fight. I have had this for over twenty five years and Heather and I have laughed so much that people comment about it. Keep smiling XXX Don

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It’s Lovely to see you on here again Don . I’ve missed you Michelle and Frazer xx

Hi Don

Lovely to see you back on the forum, you have been missed.

Hope both you and Heather are ok and coping with this heat.

Pam x