Hi
I'm 22years old, it all started in april this year when all my right hand side went numb and pins and needles, I went to the doctors which sent me for a MRI scan which showed there were lesions on my brain and spinal cord, before all this they tried my with so many different meds, diclofenac, tramadol, ibprofen, morephine and the list goes on not any of the tablets helped. The doctors then told me that they think it might be ms but need to refer me to the specialist as urgent, this was not the case however, I had to wait until August to be seen.
When I seen the specialist he told me my paperwork went to the wrong people and that I should have only waited a week to be seen by him. they then gave me steroids and upped my gabapentin, I am to go back to see the specialist tomorrow and to start on copaxone injections, I feel the steroids havent made a slightest bit of difference and the pain I am in is horrible I cant even get in our out of bed by myself I find it hard to sit down or get up, I keep stumbling and things keep dropping out of my hand the pain in my back is awful, I just wonder how will the doctors know which type of ms I have I mean they seem to be treating me for remitting ms but how can they tell its that
when I have had it for 5months now and it seems to be getting worse than better. My partner has be great with it all but I just feel sometimes I cant talk to him properly because he doesnt know what its like, I am grateful for everything he does just sometimes I feel so alone, I just need some one to talk to that understands.
Aw Sherrie I know how you feel. I am alledgedly relapsing remitting but have had pins and needles and numbness since June now, and I'm wondering if it will ever end. Do you have anyone you can talk to, or an MS nurse? I find talking does help, even just posting here. It sounds like you are being well looked after, don't be scared to ask questions. I got myself in a right state about not getting better a few weeks ago and my MS nurse really helped me getting some perspective. I hope you feel better soon xx
Top jms 22 Sep 2011 at 1:20PMits bad aint it. I only got dx earlyer this year. I remember sitting in the waiting room on my first vist to my neuro and seeing all the info from the MS society on a rack on the wall and thinking god MS must suck thank god i havnt got that lol well how bloody was i lol.
Top folksongs19884 22 Sep 2011 at 4:00PMhi there, i'm sorry you are going through all this.
i just wanted to say that if you want to talk, then please PM me.
I'm bex, i'm 23 and was diagnosed nearly 3 years ago now xx
Top sherrie 24 Sep 2011 at 9:02AMHi
well went to see the specialist thurs, not so good news he thinks because the steroids havent worked and because i am getting worse he
thinks i might have primary ms, omg i couldnt believe it i was speechless i could handle the thought of remitting ms but not primary. the specialist has still put me on the copaxzone injections until my steroids have been in my system for another 4weeks so fingers crossed he was only saying that to warn me. I am getting married on 26th nov and i wanted to be able to walk down the aisle to my partner it doesnt feel like thats going to happen anymore. I just cant seem to take it all in.
sherrie,
there is a drug i take called LDN - low dose naltrexone,. i have been taking LDN for over 3 years now,
there are no side effects or dangers, its just 1 tablet before going to bed at night,
since taking ldn ( i have secondary progressive ms) my disease has slowed down incrediably, before ldn i was getting worse very very quickly, now i barely notice anything getting worse and its been 3 years!
i asked my gp for LDN before starting asnd he said no he didnt know anything about it, so i went to a privated gp who suffers from MS himself. he has been using it for 10+ years
LDN has been used in the US since the 1980s
there are some UK gps that prescribe ldn though.
PM me if you want more details but i really cnnnot promote ldn enough
as my gp wont prescribe it i pay fpr ldn
- i pay £23 per month for LDN.
PLEASE remember it wont return you to your past health though it just stops/ greatly slow down progression
Hi
With the ldn do you take any other medication with it, or just that? I have a doctors appointment today so I will ask them about ldn, I have just read up about it on the web and it sounds really good, lets just hope I get some where with the docs. I need something to take the pain away or to slow it down at least. Thank you for telling me about it.
Top adamt 26 Sep 2011 at 1:29PMno i dont take any other medication with the LDN,
Just a few supplements like fish oil, calcium, magnesium, vitamins.
you cant take steriods when you take ldn as steriods suppress the immune system whereas ln boosts the immune system, which means i never get colds or flus.
youy can download these LDN info documents and show it to your doctor, it can help persuade him
you would only need to Show you dr the "LDN Intro MS" , the rest are just helpful fact sheets:
(External) http://www.megaupload.com/?d=SQJIQF5E
Top marcus1 26 Sep 2011 at 2:18PMHi, Sherrie,
My name is Marcus. I have been diagnosed for over 12 years now. Apparently, I have R/R MS. I hate it. Just a few days ago I phoned Free MS Helpline 0808 800 8000 ( helpline@mssociety.org.uk ) and got some free advice. The lady on the other end of the phone claimed that she had/had MS for over 40 YEARS.
Top Louise20 14 Oct 2011 at 10:48PMHi i was diagnosed 28th September, not really sunk in to be honest. Would love someone similar age (20) to talk to to share experiences so far and get advice and support
Thanks
x
Top Shireen 06 Nov 2011 at 3:43AMHi, diagnosed last week too and I'm also 22 after having optic nueritis in May then similar symptoms to you (pins and needles, weakness etc) 2 weeks ago. Also wouldn't mind speaking to similar aged people as like you say, there's only so much you can tell a person who doesn't have it as they don't understand, even less so than me when I'm just trying to get my head round it all.
Top Nessxxx 07 Nov 2011 at 11:35AMHey,
I was diagnosed over two years ago now. I started having symptoms in April 2009, when I was 19, then I diagnosed on the 2nd November 2009. I've been on Copaxone since Feb 2010. Im now 22.
My first symptom was that I lost the feeling in my right arm and hand, then In june 2009 I lost the sight in my left eye due to optic neutris. The steriods didn't work and the sight still hasnt fully recovered.
I have RRMS.
I know it all seems like your life is falling apart at first, but it does get better.
If you want to talk at any time, feel free to get in touch.
I hope everything is going okay, stay strong
Vanessa x
Top gemma85 20 Dec 2011 at 7:08PMhi my name is gemma. i was diagnosed with ms about 6 months ago though it all started in nov last year. i used to work full time but at the moment i can only do 16 hours a week, and struggle very much to do that.
when i am down, which is often. i always think how far i have come. in nov last yr i went away for the weekend, woke up the morning i was due to go and had pins and needles in my left hand. i just thought id slept funny.
i went away and as the hours past and friday went, so did sat, i found my body going weaker and weaker, my hand was clumsy, my arm went dead and heavy, i was tired. i struggled standing in the shower and almost fell getting out. i couldnt even hold the dryer up or have the energy to. on sunday my foot was dragging and i was tripping. i came home early and went straight to the nearest walk in centre, whom sent me to the hospital.
then came a wk of questions, tests, medications n one of the worst weeks of my life. i had never felt so bad n had never been in hospital before. the pain and uncomfortableness was unbareable.
i do not recommend lumbar punctures. omg i had the worst head aches ever for at least 2 weeks after. although the procedure was not as bad as i thought just very uncomfortable. though i did have people around me saying they had had one and how bad it was so at least i was prepared.
well anyway i had 5 bags of steriods dripped in me and then when i was home over christmas i started having muscle spasms. first little in my hand n they worked all the way up to all down my left side. until id had enough and went back to hos. i was having them every time i moved, even thou i was in bed or just on sofa.
that was another week in hos, this time i didnt get as much visitors. we had so much snow people werent getting out and about much.
while i was in nurses n docs were great, i was responding to meds n when i went home every day was long and bad for me. it was lonely n i just wanted to talk to someone who understood how i felt. it took about 5 months for me to get on track thinking i was getting better and then i relapsed. the confidence i had lost n thought i was getting back again had totally disappeared.
i had 3 more bags of steriods. i hate them. dont think they did much to help. they make me feel very fragile, like i have bruises everywhere. especially around my back and neck area.
im now on capaxone injections as well as meds for my spasms n sensations. it is only now i feel almost back to normal. i always have that thought in my head that when i am having a bad day (still often) it could b a relapse.
i hope this helps anyone reading, try and be positive.
Top kylie_munchbunch 15 Jan 2012 at 3:39PMhey, I'm kylie, im also 22, I was dignossed 3 weeks ago with PPMS, I have been suffering with most of these symptoms since the age of ten, and it is very hard to get around the fact the most people with ms that are my age have RRMS, It aint commen for someone my age to have PPMS, this is mainly commen for someone in the late ages E.G 40s onwards, I am struggling to know what part of my symptoms are due to MS or are the to do with something compleatly different.
They wouldn't of known I had MS, if I didn't suffer with blackouts (sizures),October 2007, I was put on Epilim and carbomazipine to try and controlle it, but as the years went on, my body started not to corrospond to this medication, so in Janurary 2011 it started to get worse and so my GP decided to refer me to a neuologist, because of all the sixures I was having, they thought I had Epliepsy.
I had seen the neuologist, and he wanted to send me for an EEG and an MRI scan, in augaust my GP had been given the results back, and he had told me that the EEG, had came back normal but as for the MRI scan, that came back with some leisions on the brain, and my GP exsplained to me that this may be the signs of MS, then in September 2011, I had to go back to see the neuologist, and he admitted me into hospital to have an Lumbar puncture done and that happened in October 2011, and the results came back in December 2011, so I got a leeter telling me "I need to go in to see the neuologist as soon as possible as it was an emergancy", when I got there he sat me down and gave me the information and comfirmed it to be MS.
Even though I was told it might be MS, this still came to be a shock for me, I have actually been indenile about this still.
This is a big jump from being told that you have Epilepsy to sometime as bad as MS.
Last week I found out what the type of MS I have and they told me, it is very uncommon for someone my to have this type but I have PPMS.
No I have to try and learn how to cope with my proper dignossis
Top jen_5721 18 Jan 2012 at 6:05AM
Hi
im 20 and was diagnosed at 17.
sounds like my story is pretty similar to everyone elses - the numbness, FATIGUE, pins and needles, lack of sensitivity, nystagmus - the list goes on and on to be honest.
I'm on a treatment called Tysabri which is a monthly IV - great fun!
but I would say for me its been totally worth it despite the possible side effects.
If anyone needs a chat, I'm here :) x
adamt wrote: no i dont take any other medication with the LDN, Just a few supplements like fish oil, calcium, magnesium, vitamins. you cant take steriods when you take ldn as steriods suppress the immune system whereas ln boosts the immune system, which means i never get colds or flus. youy can download these LDN info documents and show it to your doctor, it can help persuade him you would only need to Show you dr the "LDN Intro MS" , the rest are just helpful fact sheets: http://www.megaupload.com/?d=SQJIQF5E
Hi
I also until recently was taking low dose naltrexone. Ive stopped at the momment as trying for a baby. I thought it helped me with energy and balance but didnt actually realise how much until I stopped it. It also helped with reducing bladder urgency.
Look into it Im glad I did and have every intention of going back on it. Good luck with things
F
Top kel060685 26 Jan 2012 at 12:30PMhi all
ive just found this website and thought id share my story with you its a bit long winded!!!
i am 26 i have 2 kids and a lovely partner
back in august i woke up early on a saturday morning to get ready for work as a home support for the elderley and disabed
as i tried to get out of bed i realised my legs wouldnt work as i collapsed on the floor!!!
i thought i had slept funny and trapped a nerve, so took no notice phoned in sick to work explaining what had happened
i left it until monday morning,booked into the doctors, went to see my gp who looked shocked at my lack of movement who then wrote me a letter to go to the hospital with for a full investigation but told me not to drive.
i went to my local hospital: waited just 5 minutes and got taken into a room hooked up to machines bloods taken etc
there was then a girl roughly my age walk in to my room with a big bag that stated
S.T.R.O.K.E on it
i genuinely laughed at the prospect they thought i had had a stroke at my age and ive always been fit and healthy i was then stuck on a ward opposite a lady i had only days before been caring for who was admitted for a stroke
no one at the hospital would tell me for sure i had mri scan full bloods cat scan neck doppler scan i was monitered through the night being woken every half hour
i refused to stay in any longer as i had to start a new job so off i went and started my new job luckily only doing my training i managed just 3 days and had to be signed off as i fell down the stairs my doctor demanded i dont go back to work for 12 months, from here i still couldnt walk for 6 weeks with no help from the hospital at all no contact at all my gp finally got on to them unhappy at the lack of communication received and being left unable to walk and having 2 children to take care of
i taught myself how to get around and pressured myself into walking again but got rid of my car as i have lack of concentration i was a risk to others
i went back to the hospital for a lumbar puncture as the stroke specialist wanted to know more this
i had this done then my hospital note and results went missing!!!
i called the hospital every day for over 2 weeks and finally got my results the first week of december which went like this
your results are positive, you have ms no doubt about it, you are now under the specialist for ms wait to hear from him you no longer need our attention, take care
well thank you, i was left unable to walk again as the lumbar puncture left me with paralysis in my left leg it lasted only 3 weeks,
i was left in extreme pain with only paracetamol, oh and not to forget they didnt tell me if i had had a stroke or not or whether or not to keep taking the stroke meds!!!
still no word from the ms specialist either
i am now in an everyday struggle, so tired all the time i can barely get out of bed in the morning my mom is my full time carer now as i just cant do the things i used to i suffer from
tremors,twitches
numb hands and feet
it feels like i have bugs crawling in my feet in my heels
pain in back neck shoulders and hips so bad it hurts to even stand up
ive applied for dla but still heard nothing i know i wont get it anyway
off to see the doctor again tonight lets hope he suggests something more for the pain
although i already feel like a pill box!!!
love to you all in this endless struggle
kelly xx
Top gemma85 07 Feb 2012 at 3:32PM
hi kelly how r things now? hope u r getting somewhere. i had to b very much adament with my docs at the time and once when in hos the nurses gave me wrong dosage of tablets. good job i checked, i rang the buzzer to tell them, they didnt believe me till id shown them. when having my positive result back from the lumbar puncture my hospital dint want oat to do with me. i am now under a different hos. bigger and better.
gemma x
Top carly111222 08 Feb 2012 at 11:47AMhi i am going threw the same thing at the moment. i cant get out of bed cnt look after my little boy it is really pulling me down so much. i was diagnosed 3rd january with relapsing remitting ms but hopefully starting my meds today to get all this under control. i finished my steriods this morning and to be honest dont feel like they have done there job for me either.
carly xx
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