Hi, I was diagnosed with PPMS last year and I feel I have been wrongly diagnosed for it, I am not the typical patient and I don’t mean that negatively but my neurologist struggled to diagnose me with PPMS. Apparently thousands of people are being misdiagnosed with MS. Have any of you guys been in the same boat and misdiagnosed. if so how did you go about getting rediagnosed and if there were other reasons for the misdiagnosis. I find my neurologist is a bit incompetent with the truth of my severity and when I asked him on a scale of 1-10 how bad am I he replied 3. Also I’m not on any medication for this illness and my MS nurse and team seem to of left me to get on with it alone.
Since my diagnosis, it has literally turned my life upside down, from losing my licence and career to the demise and failure of what was a happy and forefilled marriage, oh and the depression caused.
Now I have been able to get my head and feelings back on track and want to find the truth and get my life back minus my marriage, she showed her true colours. Despite my diagnosis or misdiagnosis for PPMS, losing or should I say having my licence revoked unfairly without any road awareness testing or valuation of my ability to continue to drive is the main shock factor, I feel alone and in complete isolation at times, unable to visit family and friends which are far away. I have no needs for either a wheel chair or walking aids etc. I take my health quite seriously and keeping fit and toned. I eat well and nutritiously. Since being diagnosed I have researched this illness quite intensively and this is part why I feel misdiagnosed.
I understand this site is for sufferers with MS of all types but just wondering if anybody that has been misdiagnosed is still a member of the ms society.
Thanks for reading and any advise would be gratefully welcomed.
Hi Neil, loads and loads of MSers still drive. I dont think it is a condition which bars you from driving automatically. Unless it is obvious. But you are supposed to let DVLC know you have MS.
I was misdiagnosed but with HSP and it is PPMS
I’ve still got my driving license and I’ve got a lot more than ms wrong and I’m on morphine which DVLA Are aware of. I usually get a 3 year renewable but this time they’ve upped it to 5 years. A diagnosis of ms is not a reason on its own for loss of your license, I’d appeal their decision if that’s the case.
What is HSP…trying to understand the jargon
Hi. New here. Is this correct place to post a comment? Hoping for a reply from someone.
I have had a sore throat all week and awful pain in my hands and arms. Worried in case it is the virus. No cough or fever though. I have PPMS which I have had for lots of years, quite used to pain but not as bad as this.
Welcome to the forum. More people will reply if you start a new thread if you have a question. Just above the box with all the posts is a solid blue box with "new topic. There are lots of lovely people on here who live with ms and are friendly and happy to share their experiences and knowledge.
As for answering your question, I’d contact your GP as you could have a throat infection or tonsillitis and need antibiotics. Any infection can worsen symptoms. Have you hurt your neck, as that can cause pain in your arms too? We often blame new aches and pains on ms, and with this Covid I’d not take chances. Somebody else may have other suggestions but I’d seek medical advice this time.
Good luck and please let us know how you get on.
Hi Min. Thanks very much indeed for the info.
Hi Maryc…sorry for not explaining…HSP is hereditary spastic paraplegia.
I was wrongly diagnosed with it. A genetic test was negative.
Just so you know, the reason for no treatment is that none is offered to people with progressive MS. Like you I haven’t seen a consultant since diagnoses. The MS nurse does contact me every 6 months or so but other wise I’m totally ignored by the NHS.
Why was you licence revoked? Mine wasn’t and I have type 1 diabetes as well.
Hi , havent been on here for years , so hi to all , was diagnosed in March 2008 with ppms, a few years later my ms nurse phoned the dvla as I was driving a few days before and nearly drove off side of cliff , thought my foot was on brake but was on the accelerator, so totally understood why my licence was taken off me , without dvla asking for you to take a test , then I cant see why they took it off you to be honest , I would certainly look into it . I also do not take any medication for ms as was told many years ago we / us who have ppms there is nothing that medication can do for us . I do not see any ms nurses or see neurologist as I have not had any appointments from them in many years , it seems to me that we just have to get on with it , and during this very worrying times it would be nice to know there is someone we could talk too about some things that is bothering me . Anyway glad I found this site as I’m sure this will help me . Take care everyone and keep safe.
Have a look on your main hospitals website for the MS nurse. If you can’t see it ring the main switchboard and ask for the number.
I think it’s disgusting that you’ve been left to get on with it with no neurological support. The Neuro who diagnosed me was going to send me off the same way but as his surgery was far from home I requested referral to someone closer. I have been seen by someone every six months, either the Neuro or ms nurse. If I have a problem I phone my nurse and see the Neuro the following Tuesday if necessary.
I was approached by someone else with ms who was still under the first Neuro I saw and hadn’t been seen in five years, he thought that was normal. He requested referral to my current Neuro and can’t believe the difference. He wasn’t even advised to take vitamin D, and didn’t know there was an ms nurse in our area.
The difference in care is unacceptable. Is there nobody you can be referred to?
Hereditary Spastic Paraplegia