My nearly 20-year journey to get my diagnosis of MS

I too was diagnosed with polyneuritis on the onset of numbness and tingling of feet and hands back in 1969. In the year 1971, I was diagnosed with MS. My first concern was I going to die. For 55 years I continue with relapsing remitting MS. Quite the journey. From 2 weeks to 3 months down with symptoms. Lost vision twice. Scary at times waiting to return 100%. That is why the DIAGNOSIS was a long time coming. After continuous rest and removing myself from regular life, I would return healthy prior to the attack. Never pushed myself and stayed away from stress the best I could. I am now 73 and only in the past 4 years, my condition is progressing /decline slowly with more permanent symtoms. Lesions are showing more in the balance part of the brain. Thank goodness for rollator walkers. Hard part is relying on devices no matter your age. Vanity. (Looking old ) My advice for living well ... remove as much stress in one's life ...that might be friends and relatives. Envelope yourself with people who get you and have the understanding with your best interest at heart.

Leigh Anne --
your story is so familiar. I too had a story so like yours . It will be fifty years on May 17 since my first attack took place. It was thirty years ago that I was officially diagnosed as having MS. . At least those young people who are finding out today they have MS do not have to wait so long. Thankfully there is so much more information .

Hi Leigh Anne

Me too! I was in my mid 30’s when my symptoms started, finally diagnosed when I was 52. I had similar experiences to yours with a variety of medical professionals, madness really.
I really do hope there is more awareness now when it comes to MS, especially within the medical community and I truly hope that women are taken more seriously when symptoms don’t seem to make much sense.
Nancy

I was diagnosed with "Not having a brain tumour but we aren't really sure what you have so you may as well just go home" that was in June, 1977 some time ago, I know but at this time my sister was in hospital with a just as "unsure" illness.....eventually, during a RAF induction test, she was told to go home and her doctor would tell her what was wrong....HE did, she had MS....what on earth
was that? No one seemed able to tell us but it got me thinking about myself and after a little badgering with MY GP I was sent to hospital in Oxford where there were three patients all with MS and yes, I made it a fourth. I was supposed to have been over the moon that I didn't have a brain tumour but, at the time, MS seemed quite unknown. I started with losing the sight in my left eye and a few pins and needles....that progressed and over the early days it did mean not finishing my final term at uni but had done enough to get my degree and I went on to teach and later on write children's books....I have only been in a wheelchair these last 5 years but the worst of it are the pains I'm constantly in. The GP and specialist seemed stumped with those and I seem to be taking every single pain pill there is NOT CLEVER as I take a full handful three times a day. I do get a bit fed up with being told that I am doing really well....don't feel like it but I suppose nearly 50 years of having MS I am better off than most. If only I could still walk! Thanks for reading this hope you're better off than I am xxxxx

From my reading, driven by my MS since 1990-ish, you can split the group of those with MS into many types of diagnostic “narratives” (I don’t like that word). While your diagnostic experience sounds frustrating (to say the least), as it is for many, I don’t think it is typical. Certainly being told your life has changed without your input, is frustrating for anyone. But as medicines or treatments are studied and come out, it has become apparent that quick treatment not only prevents some damage that would have happenend, but it is necessary to make some subsequent treatment work. Without quick treatment (a year or two I suppose), you may be relegated to other treatments with less hope of near total permanent remittance. Now that is a big hope and is still for the minority, carrying significant risks, but they are saying it is possible (see MS Selfie, for example). I think it is important for newbies to hear that.

So in my opinion, that’s one important avenue for discussion. Another is for people like me- what we do after 35 years with MS. So I look forward to your columns and am glad you’re allowing comments. Welcome.

I have had many different diagnosis’s over a span of 30 years that the only one I claim is the “waitenC” disease. Unfortunately, I have waited to see the floor coming to my face more than at least 60-70 times in the past 15-20 years. My dilemma is do I continue with the insanity of trying to get a definitive diagnosis after all these years? No, unfortunately, I internally hear the mantra - “continuing to do the same thing and get a different answer is the definition of insanity.” Do I think I know the DX - probably. However, I was born at a time when MRI is the absolute last word on a diagnosis. Receiving a diagnosis is a double edged sword. When there are treatments that slow the progression, that’s a blessing.

My niece at 27 was just diagnosed with MS after losing sight in her left eye. It has recovered now except for colour but she has new lesions on her brain. We just got back from Mexico where we had additional testing ( I’m in Vancouver Canada and the health care system here has collapsed and it’s more likely you die than get treatment here). We will be going back in summer to have the intense MS treatment there. It’s the only treatment that can stop the progression of the disease .

I was diagnosed with ms after almost 20 years of being told it was wear and tear by my GP and after visiting a lot of different doctors and specialist I was eventually told I had lapsing remitting ms. So far it's manageable and I can cope with it I'm in my 60s now and hoping it won't get worse . I'm glad to see I'm not the only one thought I was losing my mind for a while as no one could tell me what was happening.sorry for going on .thank you for sharing your story

Your story sounds so familiar to my own. In 1995 - I was given a false positive diagnosis of HIV - based on an anonymous testing I did as an RN, I didn’t want anyone to know. Being gay I reached out in AOL chat groups for like minded individuals…..found a wonderful woman that lived far away , but in a town I flew into often. Once we met it was instantly became a goal to move…. Once here, the wonderful news was that I did not have HIV, but they didn’t know why my T-cells and B- Cells were all messed up.
Time went by, I had frequent falls, and overwhelmed by fatigue. Still nothing…….. first MRI was of lower back and finding of Ankylosing Spondylitis- as the cause of my weakness and pain in my back.
Years went by…..unexplained symptoms- numbness, fatigue, vision changes every year, - in the meantime I went on to get my masters in nursing and become a Family Nurse Practitioner,,,,,the stress of the job, the pain that I tried to hide, the fatigue that showed up constantly, then it happened…….optic neuritis….. I had a headache for 4 days, my wife s enough….so I went to the optomologist said “ we only see this in MS” it was that statement that had all the alarms going off, and all the chips started falling into place……but by this time age was a factor and they had to rule out the age stuff first… but the Lumbar puncture was the deciding factor and……the series of events that changed my life…… a few years later I was unable to work, fast forward a few more years, I am in a wheelchair for most long walks. I have to sleep sitting up because of esophageal dysfunction related to MS, and neurogenic bladder that had me in a near death situation with autonomic dysreflexia. I am in what the neurologist is calling the active progressive stage. I am miserable, and I find it hard to fight it every day. Now with yet another case od aspiration pneumonia because of the dysphagia, and paralysis of vocal cord.
I am so tired.