Im reaching out here about my mother who has MS.
She had her diagnosis over 15 years ago, but she has not deteriorated at all. Is this normal?
Prior to her MS she used to receive full disability benefits and motability for fibromyalgia. This is diagnosed only on reported symtoms and gave her access to high strength pain killers and the aforementioned payments.
When PIP assessment was taken over externally, fibromyalgia was assessed as less severe and many people lost their benefits.
Around this time my mother was diagnosed with MS after optic neuritis.
She has reported symtoms of MS and has received treatments for this under the MS clinic at 2 hospitals locally but no legions have ever shown on her scans and she has suffered no long term effects.
To claim disability benefits again she filled out a form about the MS and said things that I knew were untrue like she could not walk unaided for 100m and had lost motor funtions in her hands.
In the 15 years she has changed her drs as they started to question the diagnosis as she had no legions show up or significant detrioations whilst under in the first clinic in the first 10 years.
In all honesty I have never seen her display any symptoms, she just reports them.
She is very active and walks completely unaided with no visible issues like any other person could and I have never witnessed any motor function deficiencies or anything different about her at all from before the diagnosis.
She has also recently been diagnosed as narcisstic by a family psycologist and I suspect she is actually not suffering from MS at all and is in fact lying to commit benefit fraud and access the painkillers, which I am starting to believe she is psychologically dependent on. The strength and variety of the painkillers keep increasing but she never seems to be in pain or struggling with anything.
I feel like an awful person for even thinking this. But I have met people recently who have suffered terribly with MS and I believe that she has been lying all this time to cheat the system. If so I am disgusted that she is basically stealing much needed resources. If not I dont understand why she is not displaying symptoms and why her Drs are not doing something to share her treatment plan as she never has attacks, has not deterioated and has no lasting nerve damage in over 15 years. If this is true surely this is a really great thing that could help others. I dont understand why they just sign paper work, hive her pills and send her on her way when she could be a medical miracle?
I feel like I am a bad person or going crazy doubting my own mother on something so serious. I am very conflicted with my thoughts on this and dont know enough about MS to know whats right or wrong and if I am jumping to horrible conclusions or something sinister has been going on all this time.
Is it medically possible that she could have MS over this length of time with no affects?
What should I do in this situation, do I need to do anything or am I losing my head over nothing?
I dont want to say anything to her that I doubt her, because I dont want to be wrong and hurt her for no reason especially if she has genuinely been suffering all this time and hiding it.
Im so conflicted and confused, any advice would be appreciated.
Your mother will get little sympathy from folks on here with genuine limitations and suffering - and even less from the government, if she is committing fraud.
There is a state known as benign MS where the disease is detectable but asymptomatic. PIP doesnât pay out on a label but on impairment.
PIP eligibility is tightening up. You have to be able to demonstrate difficulty in your daily life in order to qualify and there are plenty who feel hard-done-by when adjudged to be ânot disabled enoughâ. MS gets a tough time because for most sufferers it is not a continuous condition and the evaluation criteria seem to work to the best case rather than the worst case. Hopefully (for her sake), they will judge her not impaired enough to qualify if her statements turn out to be false. Raises issues of negligence or complicity on the part of the medical professionals she visits if she is faking it.
Thanks for the reply, Ive not heard of begnin MS before are there any resources I can research this?
She does receive the highest possible PIP payments but in all honesty I believe she has been falsely reporting symptoms because I have never seen them in 15 years.
Is there any way her diagnosis could be looked into again, her GP is on speed dial and around her finger despite the hospital MS clinic saying she has had an isolated incidence and discharged her she continued to report symptoms no one has ever witnessed and now goes to another clinic once every few years.
I genuinely am starting to think she has an additction to the painkillers and psychological issues not MS but I dont know how to get her the right treatment
She obviously will not want to stop reporting the MS symptoms to her Dr because she may be liable for benefit fraud like you say but also they will stop her access to the drugs, where can I go for help?
Slightly puzzled by getting a diagnosis of MS with no lesions to show! Others probably know better than I but I donât know how a diagnosis like that is possible? Optic Neuritis isnât unique to MS. Also people do get what I think is called a clinically isolated symptom which never develops into MS âproperâ. Iâm absolutely no expert but maybe your Mum had a clinically isolated symptom in the form of Optic Neuritis and maybe someone was happy to declare that she had MS.
Canât really help you on the possibility that your Mum is âlyingâ on her benefit forms
Either way she is committing benefit fraud as having MS does not automatically entitle you to anything.
I have MS and am (touchwood) still fully active and I wouldnât dream of claiming benefits, never even crossed my mind!
You can report benefit fraud anonymously if you wish to.
My lesions donât show either as typical MS lesions but there are ânon-specificâ white dots on my scans, which along with other evidence (lumbar puncture and nerve conduction tests) was enough to diagnose.
Whatâs strange is that sheâs not on treatment. If they believe her to have MS why are they not treating it?
I have to say the idea of someone pretending to have MS makes me really sad. Iâm sure the rest of us unlucky enough to actually have it and live with it feel the same. What a horrible situation for you to be in xx
As I understand it, itâs technically possible for MS to take such a benign course that there is little if any disability caused. But if you donât have the disability, you donât get the disability benefits: you canât have it both ways! 