Hi
I'm new here and sorry to ask a potentially stupid question. My wife was recently diagnosed with RRMS. As part of the work up her EDSS has been recorded in the notes and in letters. Because of her fatigue she rarely can manage 500m walking. There are some concentration issues and word finding issues which worsen with fatigue. Here swallow is ok most of the time but she cannot manage red meats without care. When we questioned the score given (0) we were told it is correct as fatigue isnt taken into account. Is this right, it seems bonkers to me?
Thanks in advance
Hi All,
In a wee bit of a whirlwind I discovered yesterday that my MonSter now has to share me with a 2nd chronic illness. It turns out that I have also developed an under-active thyroid.
I saw my MS Nurse on Thursday who checked my bloods history on the system and realised that my thyroid TSH level was super high when checked in June. She had no idea it had been checked as it's not one they normally run but my Neuro appears to have been a bit trigger happy when selecting what he wanted on the system
She requested a recheck with my other standard bloods and I got a call from her at the end of the day on Friday to say it was even higher and suggested a visit to my GP. Saw Dr. yesterday morning and under-active thyroid confirmed. It should stabilise on medication.
Sharing because the symptoms overlap hugely with MS, I had just dismissed the increased fatigue etc as my MonSter being a sod. Total coincidence that it was picked up and I'm very thankful for the efficient service that got meon meds so quickly!
I guess the moral of the story is to check there's not something else rumbling along in the background.
any advice really dont know where to turn right now, Hubby has worked for the same company for 17 years, his job has recently changed and there has been several months of conspiracy to get him out, Instead of looking at what adjustments they could make they have been on a mission to prove he cant do the new job with nothing short of lies.
The company appears to have followed correct procedure but have lied and fabricated questions to get the answers they require, one of them being can he walk 3 miles. of course he cant but a motorised vehicle had already been discussed with his immediate manager.
Its all about the work hours changing and they sold this to him, his consultant and the works doctor as being working 4x12 hour shifts together when the actual hours are mainly 2 on 2 off with the most days together being 3 days and only 2 instances of this in a month! a HUGE difference!
Everyhting that could incriminate them is missing from the case management package,( but we do have copies of the majority of them) he had the final stage meeting last week and was given 12 weeks notice, dont actually know what reason it is because he has asked the union rep about going for unfair dismissial and according to him he hasnt been dismissed. According to the case management package he should have been told how to appeal at the meeting and he wasnt, and still dont know ( time is ticking away fro he 14 day deadline)
He has said all along that he doesnt want to take early retirement but will be forced into something we cant live on the pension let alone nothing! and being capable of doing a job with the employer that is bound to make adjustments and keep you is very different to getting another job!
Hes now been told to apply for IHR although it looks like this should have been done before the final stage meeting came about, I cant see how he can be trying to prove he should have IHR and prove he can work 12 hour shifts at the same time?
He was asked to sign a disclaimer at the meeting and offered his notice pay to be paid tax free, he refused they apparantly were quite shocked. From what I can see they wernt actually giving him anything as aits just a different way of paying notice pay.
I really think he has more than enough to take this for discrimination
I cant believe you can work for an employer and come out of it with nothing but the pension you have paid for and be forced to have no job because of a disability.
any help and advice, tired local disability place before he actually lost his job they gave him the phone number of a good laywer and havent been able to contact.
he has secondary progressive and in the last 5 months its made him worse than the last 5 years have MS nurse does say its stress, making him worse.
Got this email last night from the open university:
The OU community have been given exclusive live access: to the 'Disability employment conference - working together' online event and we would like to invite you to attend.
The conference is hosted by the Department for Work & Pensions and is a unique opportunity for business and government to come together and identify the challenges that others are facing and provide innovative solutions to be able to tap into this underemployed pool of talent and reap the benefits that this can bring.
Confirmed speakers are:
• Ashok Vaswani CEO Barclays
• Sir Andrew Witty CEO Glaxo Smith Kline
• Secretary of State for Department for Work and Pensions RT Hon Iain Duncan Smith
• Secretary of State for Business Innovation and Skills Rt Hon Dr Vince Cable
• Ruby McGregor Smith CEO MITIE
• Sir Stelios Haji-Ioannou, easyGroup
• David Abraham Channel 4
The conference will be co-hosted by the Minister for Disabled People, Esther McVey and Frank Gardner, BBC and entertainment by Chicken Shed and Abnormally Funny People.
Been watching since 9am, seems like a great chance to make some real positive steps forward, wish i could ask them all questions though....especially IDS! Although probably for the best!
Vitamin D Levels Correspond to Disability in MS
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People who live north of Baltimore may require more. In the UK it is likely to take more than 5000iu/daily. Baltimore is equivalent to Lisbon Portugal or Greece a lot hotter and sunnier than where I live at 52n and Scotland goes from north of 54N to North of 57n.
CityAssays Birmingham NHS Path lab will send a postal 25(OH)D test for £25 UK or £30 for International. IMO as MS is an inflammatory condition and the highest anti-inflammatory action of vit d is found at 125nmol/l or 50ng/ml Up to 10,000iu daily is safe (it's the amount your skin would create if you were able to live naked outdoors)
BigVits or Amazon UK now offer 5000 iu drops/capsules around £12 for a years supply, Almost as cheap as Iherb/Vitacost or other US discount suppliers.
Remembert MS is an inflammatory condition and Vitamin D3 works in conjunction with magnesium and omega 3 (other anti inflammory agents. Magnesium is required to convert the supplemental form to the active form (most people don't get the current low RDA for magnesium) and the Omega 3 DHA also is able to bind with the Vitamin D receptor (it's a vit d receptor ligand) to support the action of D3. So it makes sense to increase magnesium and omega 3 alongside the Vit d intake.
The other anti inflammatory agent most people lack is MELATONIN, Human DNA is set to create Vit d in skin from DAWN to DUSK and from DUSK to DAWN our pineal glands should be producing melatonin.
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
