@Paddymanc

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Paddymanc

New Member This Is Me

hi everyone just a quick hello,and introduction im paddy from manchester uk symptoms started july 18, strange pins and needles under small toe by november it had spread to both legs, and both arms,and ended up in a wheelchair after 8 months of mis-diagnosis,and endless scans etc finally had a appointment with neurology, sent to salford royal same day after 3 weeks of MRI's, bloods tests ,lumbar puncture, 3 day iv steroids ,plasma exchange they said i had Transverse Myelitis and relapsing remitting MS since leaving hospital (3 weeks ago) i have not been seen by nobody,kind of being left in limbo, feels like nothing has changed,still cant move below waist, and feels like i have sausages instead of fingers take care paddy

sfrox

@sfrox

Hey there paddy, this is a late night response from West Coast US.... hang in there. You've been through the ringer. It can take time to get things sorted out once you have been diagnosed. I waited about 4 months to get on treatment between choosing one, talkng to the doc about it and getting in the treatment pipeline. I never knew if they were thinking about me or not. Members in the UK will know a lot more about what is available to you over there. But stay connected with your care team however you're supposed to, and try not to feel too neglected - it just takes time. In the meantime be good to yourself. Sending peaceful thoughts, R

Paddymanc

@Paddymanc

hi sfrox good morning from sunny manchester thanks for your kind words and thoughts take care paddy

Highlander

@Highlander

@paddymanc Hi welcome to the club. Feel free to bitch, moan, shout and rant, but above all keep a sense of humour! Ask anything you like we'll find an answer or an explanation somehow. Greetings!

Paddymanc

@Paddymanc

highlander many thanks i think its only humour that's getting me thrugh at the moment paddy

grandma

@grandma

@ paddymac hi and welcome. As Highlander says, you can rant, moan, cry, whatever floats your boat at the moment, but remember with ms, there is no such thing as a silly question, someone here will have an answer. We may not always be right, and ms is so individual, we all suffer in slightly different ways, but the basics are always the same, a pain in the butt, so we have to keep smiling or we'd spend our days in tears, stressing etc., and neither is good for our beast🥊🤞😜

Highlander

@Highlander

@paddymanc Have you been introduced or even been made aware of your MS nurse? They are sort of ment to be your first point of call I do know they have them in Manchester. Surprised that you haven't mentioned them.

Paddymanc

@Paddymanc

hi @grandma i feel a lot better knowing im not alone thank you @highlander i met briefly with my ms nurse while i was in hospital then i got a letter to attend a ms clinic to meet her, but that is over 2 months off, ive been assigned a MS consultant, but no idea the timescale before i meet him paddy

Highlander

@Highlander

@paddymanc Your stuck in the hurry up and wait loop! I hope you were advised on meds for pain relief and has anybody mentioned anything thing about DMTs disease modifying treatment?

Stumbler

@Stumbler

Hi @paddymanc and welcome. It isn't good when you feel that you have been deserted by the people who are meant to help us. Unfortunately, our NHS is under-resourced and over-stretched, But, if they just managed their patient's expectations, situations like yours wouldn't happen. Were you left with a raft of MS brochures/pamphlets when you left hospital? It's not unusual to be left for a period of recovery/reflection after the shock of an MS diagnosis. The Steroids will still be working with your body to help it recover for another few weeks. So, just rest up. Binge-watch some TV or something. Do some research into this medical condition that you've been introduced to. I can see this research has started as you found this crazy bunch of people. Just be wary of relying on Dr Google to give you all the answers! Stick to creditable websites, e.g. the MS Society, MS Trust, etc.. Your MS Nurse should have left you some contact details, which can be used for any urgent concerns. If not, you can track them down here :- https://www.mstrust.org.uk/about-ms/ms-services-near-me We may be crazy, but we're all here for one another. Individually, we may be weak, but together we can be strong. 😉

RMDaniels

@RMDaniels

@paddymanc Welcome aboard. What a miserable way to get a diagnosis. I sure hope you get a consultation & some answers soon. It sure helps mentally to have a plan of attack. Hope you'll keep us updated on how things progress.

anxious123

@anxious123

If your in Manc under Salford Royal you will be in good hands. Your consultant should pass your details onto ms nurse team who will be in touch. Did they say anything about dmts etc?

Paddymanc

@Paddymanc

@highlander im not on any meds or pain killers just baclofen for spasticity, dont know what DMT is @stumbler thanks for reply you are right a quick hello, from ms nurse,left me one leaflet and a phone number, just fed up after 3 weeks of intense procedures, still in a wheelchair as i have been for the last 4 months infact muscles are a lot weaker since i came out of hospital just dont know what questions to ask about condition and who to ask ? @rmdaniels,hello and thank you for your kind message. @anxious1223 hi yes im under salford great set up and nurses.

Highlander

@Highlander

@paddymanc Hi again. Don't want to come across as condescending... Ok here is a sort of list .... DMTs are disease modifying treatment. They can't cure but they can slow or stop progression. Your nurse will inform you about them. It's a bit of a long discussion. Other things Baclofen. you know is a muscle relaxant Pregrabalin or Lyrica relieve nerve burning pain discomfort. Dx diagnosis. PPMS primary progressive MS SPMS secondary progressive MS RRMS relapsing remitting MS Vitamin supplements for vit D and folic acid. I'm sure there is more you'd like to ask feel free..

Stumbler

@Stumbler

@paddymanc , there are a range of publications here, which would be useful to you :- https://support.mstrust.org.uk/shop Look under the "Newly Diagnosed" link. Have you had any physio since you've been released from hospital? You do need to prevent muscle wastage, which means getting out of the wheelchair and using the legs. Just do it carefully - no risks! 😉

dramaqueen

@dramaqueen

If possible and only if get yourself a 4 wheeled wheely walker and begin physio . Look on ebay mapper or Gumtree much cheaper. Try to get yourself shuffling about. Rely on muscle memory move if you can. Get in touch with ms society and request their magazine pathways. Frame of mind is important although it takes time to absorb this robbing illness. Grieve but try hard to maintain what you have. 29yrs on no dmts progressive ms from day one. We can do this.!!!!!!!!!!!!!!!!!! Find the strength from within. xx

Paddymanc

@Paddymanc

@highlander thank you for the list very helpful, very grateful that there is people like yourself to help newbies @stumbler not had any physio since leaving hospital, have a home visit booked for next thursday, also the transverse myelitis support group has paid for 2 one hour appointments with a local neuro-physio for later in the month @dramaqueen thank you for your kind words

Mo-jo

@Mo-jo

Hey @paddymac, welcome to the club, this place is a godsend, everyone is so helpful. Stay strong.

d1zzy

@d1zzy

Hi @paddymanc Sorry to hear you’ve had such a time of it. There are many different experiences of MS described on here and lots of good advice. Hope it’s helpful for you. Stay steady and try to look after yourself.

Paddymanc

@Paddymanc

@d1zzy and @mo-jo thank you both for your messages take care paddy

Shtanto

@Shtanto

Hiya, (@paddymanc) First thing to get is this: https://ie.iherb.com/pr/Solgar-Vitamin-D3-Cholecalciferol-5-000-IU-100-Softgels/23559 Any 125mcg (5,000 IU) vitamin D3 supplement will help. Also consider a good quality omega 3 supplement. You're currently very probably in CIS, so as regards supplements, you want to adjust your diet and try to go with either the Swank, Jelinek or Wahls approach. Jelinek's would work well for you, unless you're already vegan in which case go with the Wahls diet. Above all try to avoid eating processed food, especially animal fats. As best you're able get about an hour out in the sun every day until the supplements arrive. It doesn't have to be direct sunlight either. If there's an Amatsu practitioner near where you live, go see them and they should be able to help. What you're going to come against in the next few weeks is quite literally a rollercoaster. Afford yourself as much personal care and compassion as you're able to muster. I'll be at the monthly MS Meetup next week in Dublin (IFI café, April 13th, 12:15pm, bring a notebook). Happen to be learning Amatsu myself as well. Look into getting yourself onto Low Dose Naltrexone. Your official line of MS people won't inform you of it, so you'll have to do your own research or PM me :). Keep walking if you can. As for the depression, despondency and hopelessness that can crop up, that's why we're here. There's an awful lot more collective knowledge and experience here than you might find elsewhere. https://www.meetup.com/Dublin-Multiple-Sclerosis-Group/events/lxwdfpyzgbrb/?action=rsvp&response=yes