You know that thing with MS where they tell you not to overdo chores ETC? Well I think I have over done it...BLAHHHH :o/

Work and play

Anyone else get a dreaded brown envelope arrive on the doormat and think 'great another fight to face!' I think the endless reviews of Personal Independence Payment for those of us with MS is absolutely disgusting! I mean did I miss something? Or is there suddenly a cure for Multiple Sclerosis that I'm unaware of? Is it not a degenerative neurological condition anymore? Degenerative kind of gives the game away. If anything in the last two years my condition has declined. Now on Propranolol to help with tremors and cannot got for a number two without using laxatives the list goes on. We all wake up every day not knowing which part of our bodies will be affected next. We battle every day with a multitude and variety of symptoms. Symptoms which guess what!? Are affected by stress and yes, Mr DWP your twenty page long form is extra stress! That I have to have back in twenty days with hands that shake like I haven't had a drink in years!  I wouldn't mind but I actually work and have been in my job for eleven years. I've had to change my role and reduce my hours but I still try. Why don't they go and pick on those who can work but simply won't work and play the system. I am hoping and (literally) praying that everything will be OK but the anxiety is immense. Last time I was lucky and had an assessment with a physiotherapist that had a little understanding of MS but with ATOS in control you never know what your going to get! They literally don't give A TOSS. The stories I hear are horrendous and I just hope I have someone up there on my side. The help we all get is invaluable especially when we have to travel vast distances for our treatment. My ticket to the Royal Free alone is thirty five quid. Does anyone have any useful advice or any organisations that can help if issues arise. So wish there was a way to compaign for this endless cycle of reassessments for all of those with long term degenerative illnesses. At least they can't take my wages from me I guess! I'd have to c**k that up myself ;-)

PIP review anxiety

Hi Everyone 

It’s been a while since last Leeds Meet-Up but I’m thinking October 12th or 26th..?
Both are Saturdays, thinking 11am ish maybe 
Any thoughts..

Leeds Meet-up

It's yo birthday
We gona party like it's yo birthday
We gona sip Bacardi like it's yo birthday!............

HAPPY 21st Son ? ? xxxxx

Love shorty xxxx

Georgy.......

I've seen this list before, but it may be useful.

What living with MS feels like..:-

When We say we can’t do something because we don’t feel well, put yourself in our shoes by using the examples of our symptoms below…

Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?

- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.

- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

- Tingling: Stick your finger in an electrical socket – preferably wet.

- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?

- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.

- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzzzzzzzzzzzz

- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

- Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.

- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.

- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.

- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.

- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.

- Swallowing: Try swallowing the hottest chili pepper you can find.

- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms

welcome to our world.

Then Finally…

After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counselling is the answer.

:)

Describing your MS Symptoms

Hi everyone,

I know that it just isn't possible to stay positive all the time in the face of MS, and we shouldn't be expected to, sometimes it's tough and we just need to let ourselves feel how we do in that moment. BUT I would really love it if from time to time we could all share something that we are proud of, or something that happened to make us feel good, even something small. For example, mine is that the other day I was feeling very run down and tired, but had planned to meet up with some friends that I hadn't seen in some time for a "paint night" where they teach you to do a simple painting all together. I didn't think I could do it, but I wanted to try and pushed myself to get out and ended up having a really nice time, and even thought I was exhausted when I got home, I was so glad I tried! 

Is there anything you can share that made you feel proud, or positive in some way?

Positivity thread!

Hey all 🙂 im hoping this is common with others suffering MS.... people just dont seem to understand anything about it or what you might be going through! Friends... family and work colleagues see you looking normal and presume everything is fine.... I never want to come across dramatic but sometimes want to shout i have MS for gods sake lol.... is ythis normal?

Understanding!

Just wondering if anyone else out there has made the switch to Tecfidera? I used to be on Copaxone but hated the needles so have switched to the pills! They're not going so well at the moment! I'm on week 3 and have terrible cramping in my stomach, nausea, headaches, bloating, indigestion and reflux! Going to my GP today to get something for all of that! Hope it settles down soon or it will be back to Copaxone for me! I'm feeling awful all day and night!

Tecfidera reviews wanted! Anyone else on this?

Doubt anyone remembers me but I’ve posted on here since 2016. Long story short but got CIS diagnosis in January 2017 and started on Rebif until December. Taken off due to low wbc meaning I couldn’t have elective surgery. Plan then was for 6 monthly mri/appointments and close monitoring. My case has been now discussed twice at a local MDT meeting. I thought my scans had been stable so wasn’t expecting much in the latest letter. However, I’ve come home to a letter saying they’ve noted a subtle change in my cervical spine so I now meet the criteria for relapsing remitting ms. Although I’d been expecting this at some point, I’m a bit floored by the letter. My neurologist is planning to see me but I don’t yet have an appointment. I’m unsure if I’ll be offered any treatment as don’t think I’m classed as active ms but can’t have interferons due to previous history. 

I’m not sure why I’ve posted but think I’ll need to access everyone’s support again please. My symptoms are mainly altered sensation arms/legs at night and sometimes during the day. I’m unsure what I’m meant to report as not sure what’s usual for me now anyway. 

Sorry to ramble ☹️

I’m back

Afternoon all. Some may have seen that I decided to take the Railcard folks to task as their website for Disabled Railcards was opaque and led to many with MS thinking they weren't entitled to a Disabled Persons Railcard.


Good News - anyone that can show they have MS - a letter from your GP is fine - is entitled to a DPRC. End of story. If you have MS, you are entitled.


Presently the website makes it sound like you aren't entitled unless you are in receipt of certain benefits. They agree this is misleading and have undertaken to change it. 


In the meantime, here is what to do - 


- have a scan/photo or the emailed attachment of your proof of MS
- go to their website and use ANY of the categories (none of which sound remotely relevant at present) to apply and attach the proof and add a note that you have MS and are applying like this because at present there is no other way to do it
- pay your £54 for a 3 year DPRC


This entitles you AND one person accompanying you to 30% off rail fares at all times, including peak times.


The Rail Ombudsman were v helpful in getting to the right person in the Rail Delivery Group and both MS Society and my MP have expressed an interest if they didn't come around, but they saw sense and have been very good about it. In future, the website will have a space for 'Any other qualifying condition' or similar. The final email is copied below:-


&gt;&gt;
Hello Dominic
 

It was good to talk to you earlier.  I can confirm that as discussed, we’ll make it clear on the website that if customers believe they might be eligible to contact us to discuss. 
 

Thank you for the feedback – its (sic) always gratefully received.


Best regards

Dominic Lund-Conlon

Accessibility and Inclusion Manager |Customer Directorate |Rail Delivery Group
&lt;&lt;


Best,

Dominic

A small victory for the UK MSers

Hi all, sorry if this post seems a little crass. I’m a male and as part of my symptoms I’m having real difficulty achieving an orgasm. My girl friend doesn’t seem to mind too much. But it’s driving me mental. I’ve only managed to about 3 times this year. Does any one have any tips? I’ve already tried Viagra.

Many Thanks

Difficulty achieving an orgasm.

I was out clubbing last night, and saw a fat bloke chatting up a fat girl.

She turned him down though. I think she was worried he was just trying to get into her Snickers.

The joke section!

My birthday is in April and I know a few ms'ers who were also born in the early spring (mothers pregnant  during winter no summer sun low vitamin D) wonder how this fits with everyone on here.

Cheers Chris.

When were you born

So I posted couple weeks back about my life. I didn't tell the whole truth tho so here it goes, im gay so my partner who has just left me is a woman. 

So ive struggled recently dealing with tge new diagnosis,  then the relationship ended and this week my ex girlfriend who has only ever had girlfriends tells me her "best friend" who she met 2 years ago and always goes out with but I wasn't allowed to meet properly is now her boyfriend. Yes her boyfriend I am so confused and now even more so!  Weve been split 4weeks so how long has it really gone on for??

I am loosing every will to live.. I am completely stuck at rock bottom I don't know how lower I cud get. My ms has gone wappy but I don't care about that. I need my life bk the person I loved so much. I need it all bk, and I need ms to leave me alone :(

need to moan about me!!

SAVE money on doorbell batteries by removing them and simply popping to the door every two minutes to see if anyone is there.

Some Midweek Funnies

Hey there :)

I'm a 22-year old student from Germany and I've been diagnosed with MS in 2015. I've had two relapses until now but I recovered rather well. While I'd not been able to read even texts in German, I'm now able to work through English specialist literature again.
Nevertheless, I'm tainted with difficulties in concentration as well as in structuring my thoughts before writing them down. In addition, my neurologist told me that I probably also have fatigue. 
This semester's exams are almost here and I feel unable to cope with all of the preparation. What's probably even worse, I don't think my lecturers will be able to understand what I write down since I have to cross out and correct a lot. Because of fatigue I also struggle with finishing in time.
Has anyone of you been in a similar situation? How would you decide - continue the studies or drop out?

I hope you're able to understand me since I'm not a native speaker ;)

Greetings, LaVosa

Drop out of college due to ms?

I’m having a bad time at the moment had relapse and steroids a few weeks ago .
I’m just fed up of being treated badly . 
It’s like they think we have all the time in the world - we have lives or want to have a life
Just because  my body got sick doesn’t mean I don’t want a life 

They Just mess around . It’s all stressful anyway , time off work and money lost , my husband loses money !
Waiting around long distances to travel and already feel pants with relapse and stressed ! I thought they are supposed to help ? 

In my eyes get us back to our lives as quick as possible , rehabilitated and helped  It’s just poor

This is my feelings after seeing a neurologist today . It makes you wonder  about serving us When it’s nhs more like serving the huge waged whilst they are always on holiday and waiting times shocking ! 
I paid to see this neurologist today and what a waist of money and time . Most work on nhs anyway too . Not helpful in the slightest and it’s like those in charge not us ! That’s wrong !  They did nothing I wanted as a patient .

Everything negative 
Stem cells - they can kill you 👎 yes but he failed to add they can also help you and have 
Done 

Guidelines to gp about steroid so less messing Time wasted and stress cause - no can’t do this - but why can other neurologists do this and not him 

Lecture on dmds 

Also somethings happened at the dentist . I got this relapse after my two amalgams were removed- day after !  So I said it must have something to do with it - he said it must have been the anaesthetic but that can only happen after general . I had local ! So then I said it must have been something else . I said so you think it’s the mercury ! He said oh no couldn’t be that no reports .but ...  look all over the net and you’ll find reports on mercury amalgams and harmful stories ! 

And guess what in 1990 everyone who was diagnosed with ms was sent to have their mercury fillings out ... so why was that ? If they are safe why was the nhs paying for removal S

Anyway not a happy camper  today xx

Really not happy with my medical team ..

Ive had a driving assessment, they said i should not drive. My vision and hearing and memory and concentration are ok.  The DVLA has said apply for my dring licence again it has been revoked b the DVLA. mY CONSULTANT WANT PROVIDE extra information.

My GP said no I am trying again. All i Need a note or letter I likely meet the medical standards nd can drive safely. The DVLA LETTER SAID my driing licence has been revoked as have persistent neuroligical symptoms which affects my ability to drive safely. wHAT ELSE i CAN DO ANY HELP BE BENEFICAL  AS I HAVE MULTIPLE Sclerosis

I can drive safely.

Driving

So I've read heaps, connection with spring babies and MS is one thing....

Well I'm a spring baby, wonder who else is on here?

spring babies!

Hey, was just wondering how alcohol effects fellow MSers?!
xx