Started with a bruised feeling in hip, went to poor mobility and back pain, back and forwards to Rheumi who diagnosed Osteoarthritis of my lower spine with disc bulge and Fibro…I have gradually felt worse over 3 weeks:
Pins and needles feet and hands, unable to keep temperature, feet are freezing and cannot even run a bath as it feels luke warm till I get in hot tea feels luke warm with tingling lips and tongue. Had 2 episodes a week apart that GP thonks have been mini strokes hence sent to Neurologist, Rheumatologist aggreed with GP and also wrote to Neurologist so appointment originally for 4th March is now 6th Feb so not long to wait but from what I have seen on this site tests and DX take a long time. The only person who has mentioned MS is Rheumi but there is some obvious nerve damage going on.
It’s true that diagnosis can sometimes take a long time so it’s best to be prepared for a bit of a long haul, but it’s also possible that an MRI will point straight at the cause so you might be lucky.
One of the reasons that it can take a while for diagnosis is that many conditions share similar symptoms so, while your symptoms are found in MS, they also happen in TIA/mini strokes and other conditions too. Hopefully the neuro will be able to narrow it down from the clinical exam so you have a better idea; in the meantime, it’s best to keep an open mind.
Thanks Karen, its a nightmare, just been turned down for DLA so I have asked decision maker to look at claim again(not holding my breath), cant get help from CAB as I am still employed . I’ve worked hard all my life yet when I need help they dont want to know, cant fault social services and physio as they have gave me equipment to help me, GP and Rheumi have both been brilliant and noticed something was wrong early so that may help.
You can use the CAB regardless of employment status…my hubby and I are both employed in well paid jobs and have just visited the CAB last week, where an advisor filled in the DLA forms for me.
If you can afford it, it’s worth joining the benefitsandwork website - it’s about £20 for a year and is full of inside info about DLA, ESA, appeals process, tribunals, etc. Very illuminating stuff!
Was advised by CAB that they would not be able to help if it went to appeal as I earn so I have contact DLA and pointed out what I think is wrong with their decision and told them what I experience on a daily basis and struggle with, I did contact them on the 18th January with an update to my change of condition after I had first Mini stroke/fit? but my decision letter was written on same day so they said they will look into that also. I only want the extra money so I can get help, cant even have a bath currently and shower is too small to sit in, cant go outdoors on my own as need to use a mobility scooter and due to 2x mini strokes/fits been told I should not be left on my own full stop(how that can happen is beyond me both husband and daughter work. Hopefully I shall find out soon at least I am lucky that rheumi and GP are in same opinion with nerve damage and have both rushed for the neuro to see me earlier. To be honest MS never even came into my head until rheumi mentioned it but it does make sense I was rushed into hospital in 1994 ith a possible blood clot, which left me with a weak left side for 2 yrs and was told it was due to a viral infection. I lost 30% hearing in left ear in 2007, then 70% in both ears 2010, have a right bundle branch block in heart and investigated for esophageal spasms which cause was not found and still have the odd lump feeling in throat and swallowed probs, I know this could be something else but it does seem to have a pattern. You start to feel like a hypochondriac as all new symptoms, lucky my GP knows me.
Nothing to do with DLA, but have you contacted Adult Social Services? It sounds like you would benefit from what help they could give you. You can contact them via your local council office phone number.
