It’s my first ever post about my life, it’s almost as im crying for help.I just cant tāme it anymore. I was first diagnosed two years ago and I am turning 24 years old this August. My symptoms have gotten so bad… I dont feel my arms and right leg and whole right side of my body. I experience Pain that makes me want to cry and yell. Every night im sweating sleepless in agony. I cant stay in an upright position since i had a lumbar puncture 2 years ago. No bloodpatch was made because doctors coudnt find a fault in the procedure. The headaches are just about the same they once were after the procedure was done. Both of my elbows are enflamed in a matter of minutes if bent. I am fafigued some days to the point where i vomit. My memory has gotten significantly worse, i have a talking disorder since birth. I have no money, my family, little sister and mom will soon be kicked out of the house due to debt. We cant even afford a washing machine. Ive worked till i was completly disabled. Im an invalid and i receive 60eu per month which does not even cover some psin meds. I rarely use them, i rarely eat just to save money. I am just a parasite at this point and really thinking about ending it all. I was once strong, good looking, funny, smart, confident. Now i hate myself… My girlfriend left me because i am like this, my friends dont understand how serious my sickness is. Havent slept for 40 hours due to back, elbow and headpain… There is so much more i could write but in reality i dont think it matters nor it will change something. - Arthur, from Latvia
Arthur please do not do anything drastic to yourself. i can tell how desperate you are and my heart goes out to you. humans withstand the most horrendous times and survive. you are still the strong, good looking, funny, smart, confident person that you remember. life has thrown you a bad deal. life has the knack of following this with some good. take care carole from the UK xx
Arthur, I am so sorry to hear what you are going through. I am currently going through my second episode and have just been diagnosed with RRMS. It is a horrible feeling, but please stay strong, we are here for you x
As Carole said please don’t do anything drastic, because it sounds like you’ve hit rock bottom.
Life tests you , and these situations are definitely testing you at the moment…and to manage with them for so long you must be alot stronger than you think, as many of us are!
Stay strong, there are always plenty of people on this forum that you can speak to
That sounds such a tough situation, I’m not surprised you feel like that. You need to reach out to get some support. There are things we can get in the UK that would support you, for example prescription pre-payment cards, that make prescriptions cheaper (or you may even qualify for free ones); food banks provide free food for people with little money. Obviously we’re not going to know what kind of support you could get in Latvia, but your doctor may be able to give advice, or there may be services online that can give advice and guidance.
And, of course, come on here as much as you need to, to ask questions or simply let off steam
Arthur this doesnt sound like its down to your MS, it could be more you have an infection from the procedure. I think you need to discuss this further with your doctor as something needs doing very quickly.
as to your being depressed MS makes us depressed. You are trying to cope with too many things at once.
Please contact your local social services to get help for your family. this is the priority at the moment. are you living with them?
I am sure you mother should be able to get help.
Everything is dark at the moment and your family are already in a bad place, your death would just add to their burden. Your in a bad place right now, who wouldnt be, but something is not right here with your symptoms and you need to find the strength to deal with this injustice. It could be down to the procedure of the lumbur puncture which has triggered something. You have RIGHTS. Please reach out to your friends, and talk to them, ask them for help. If their friends they will understand. There is something wrong with this procedure. FIGHT FOR YOUR RIGHTS. Dont let them get away with this. If you are very slight and small framed sometimes a LP can cause after effects which can last a long time, but TWO YEARS. no something is very off about all this. talk to your MS Society.
You have an MS Society, please contact them and ask for their help and advise.
I am truly sorry your in such a place, but you can get through this, your young. you say you have medication but you are not taking it why not?
dont be robbed of a life because you are put in such a situtation. It does feel all hopeless to you right now, but it can get better. It can honestly.
FIGHT FOR YOUR RIGHTS. there is something wrong here, I am sure others would agree no one should be suffering 2 years after a lumbur puncture. Did it show any results? Talk to your neurologist your in the EU under EEA rules so you do have rights. Use them.
your mum and sister need help try and get them help, bring in family and friends, reach out, you have strength as you have reached out to us. we can be here for you, we can listen, but ultimately are you going too, or have you decided. I am 68 like you have had my share of rubbish in my life, but your just starting yours dont let go of it, you can still do this, you do want to keep going if you didnt you would not have reached out to us.
Let us be your support. RING and get help. Please.
sucide hotline LATVIA, PLEASE REACH OUT TO THEM. XX
Phone: 371 67222922
Phone: 371 27722292
I’ve been feeling pretty horrible the last few weeks. I had really bad pains in my legs and feeling pretty awful generally. I’ve restarted taking Magnesium Citrate (100 mcg twice a day (H&B)) and I’m taking high dose vit B12 (500 ug sublingual). I feel so much better after a few days. I had a really bad relapse seven and a half years ago. I had 15 different symptoms. I did a lot of research and concluded (incorrectly) that it was vit b12 deficiency. I started taking vit b12 and after a week, most of my symptoms had gone. I don’t know if you take supplements but please try, as it could make the world of difference. Floradix (Boots) and vit d3 (5000iu) are also invaluable. Give it a go. Good luck with it.
Brilliant reply crazy chick Dan
Thank you all for your amazing support. It means alot to me. I just dont know how to start living… After my lumbar puncture I am left immobile and frustrated. Ive talked to many doctors, i am even in the hospital right now. But they are saying that its impossible and that the headaches are caused by MS. It does not make sense since it started the same moment i had a lumbar puncture I dont know who to reach out and how. Noone is listening to me and im not a specialist myself… How can i know better than them… I just dont know how to diagnose and fix it myself…
That reply is whats really great about this forum
Exactly what I thought when I read your post CC, excellent, and just what this forum is brilliant for.
Hey. There is a lot you can do yourself. I have just been going to group therapy. It’s absolutely brilliant. Try and get your doctor to refer you. I was at a very low ebb. I was diagnosed with something else last year on top of MS and it really, really threw me. At the start of the course I was feeling very angry, confused and depressed but by the end I felt so much better. I had worked really hard for seven years to get on top of things and was doing really well. Then wham another diagnosis. Things do get better. It’s a hard slog and we all have very black times but there is a light at the end of the tunnel. The tunnel is just very long at times. Stick with it and try to get referred onto group therapy or one-to-one counselling. It’s very much worth it. Good luck.
You must have some sort of person in the hospital who deals with complaints?
If your in hospital, ask to see your specialist. be firm.
The longest recorded headache after lumbur puncture was nineteen MONTHS so you have exceeded it. It is NOT IMPOSSIBLE.
SHOW him this perhaps?
Headache usually resolves within a few days, but the longest reported headache after lumbar puncture lasted for 19 months.10
Obviously they are not going to admit responsibility. So be firm. You can say its odd that before your LP you never had a headache with your MS now you have.
So to resolve this quickly its a simple fix really. Ask them please use a PATCH and see if this helps me.
Also you need an MRI to make sure no cranial nerves have been affected which they can.
I can imagine you are a slight person by slight I mean not big boned but perhaps as you have been ill for a long time before the LP you have not taken the best care of yourself, so your body is not well covered with protective muscle. Complications with a lumbur puncture are more likely in a smaller person or child. The person doing it for example to you may have used a needle too big.
I think this is probably an easy fix, but they are just closing their minds to it. STAND YOUR GROUND. You insist on PATCH. You have rights under the EEA laws.
Please follow these links.
select NATIONAL CONSTITUTIONAL LAW