Misdiagnosed before confirmed MS, anyone?
Hi all, I have only recently been diagnosed with RRMS since March 2024, however, I’d experienced a single episode of TM in April 2018. My journey to diagnosis was somewhat convoluted. I presented with foot drop and leg weakness at first, and my brilliant GP immediately suspected a neurological condition, and referred me to my local A&E. The consultant on duty, however, told me I had suffered a pulled adductor muscle in my right thigh, and I was inclined to agree due to the excruciatingly painful, vice-like tightening I was having. I was sent home with heaps of painkillers and even analgesics! Two weeks later, I developed a terrible tremor in my right arm whilst out, a right leaning gait and tremendous difficulty walking, and was seen in A&E at a different hospital. Neurological tests were undertaken, however, I was refused a MRI and only offered a chest X-ray, which of course showed nothing relevant, and discharged by a very junior and overworked doctor. After much insistence, I requested a second opinion, which meant returning the following day, and was seen by an orthopaedic consultant, who suspected a slipped lumber disc and ordered a full spine MRI. This lead to several brain and whole spine MRIs with contrast, and the rest is history. I feel that sharing and hearing accounts may help in the process of acceptance of my condition. Are others, like me, sometimes in denial, and if not, what stage would you say your at? What’s your story?
Mines a story too of misdiagnosis and just sheer incompetence at times if I'm honest. Presented with optic neuritis to be told its not neurological because its only one eye...lol. If only I'd known what I know now. When things got worse another told me to walk more to loosen the nerve I'd trapped! Another said I was fat and if I lost weight the sight and sensations would go away. Then migraine phenomenon. Then it was all in my head because MS doesn't cause pain. Then I found out the first 2 lumbar punctures were not done correctly so no results were examined....gosh its quite therapeutic to write it down. There's more but eventually the damage to the optic nerve made them look at me again. Then diagnosed. I think I'm pretty much still in denial 🙃
Hi @Claire2022, sounds pretty awful! Sorry for you having to recount that harrowing experience. I’m still quite traumatised by the whole process. I think it is really important to express one’s feelings about the journeys undertaken as it may be very cathartic; receiving a MS diagnosis can likened to a form of grief, and the insensitivity of misdiagnosis can compound matters. Like you, I know that things changed forever in 2018, and I too am still in a state of denial. Being able to express ourselves in this forum really helps, however. Although loved ones care, support and try their utmost best to empathise, the crux can still be missed, and this can be both frustrating and upsetting. Communicating with other MSers who’ve shared similar experiences really help in building bridges needed towards acceptance, and for moving on with in a positive way. There is a wealth of experience within this community and we are able to learn so much from each other.