Hi there! I'm new to this forum. I was recently diagnosed with an Autoimmune Illness called Giant Cell Arteritis (GCA) until just recently. I wasn't feeling comfortable with my level of care here in southwest Florida so I decided to fly to the Cleveland Clinic main campus. The trip was worth every penny as I was misdiagnosed. The Rheumatologist indicated that I had Trigeminal Neuralgia or some other type of Neuralgia. She wanted me to make an appointment to see a Neurologist and completed an order for a MRI of the brain. My symptoms lean towards MS. Five months ago, I woke up in the middle of the night with excruciating pain on the right side of my head and thought it was my teeth or jaw. I made a trip to the Dentist, she told me there was nothing wrong dental wise (there are some honest ones out there!) and she prescribed steroids. Long story short and after an incredible number of trips to different Docs (Primary Care Physician, ENT, Opthamologist and then Rheumatologist), my next stop is the Neurologist. Since my initial trip to the Dentist, I have had horrendous eye pain behind my right eye, blurry vision, weakness in the legs, frequent urinating and leakage, extreme fatigue, insomnia and the list goes on and on. Also important to mention is I had similar symptoms in 2012 and many visits to a Neurologist with no final diagnosis. I would appreciate feedback from those who were diagnosed after the age of 50 or anyone else who can shed some light on my situation. I did not complete a profile because I am waiting for a final diagnosis. Many thanks for reading and listening!
Late onset of MS in late 50's? - My MSAA Community
Late onset of MS in late 50's?
micheleinnaples , I’m so sorry you are suffering and have been for so long and without a clear diagnosis.
I was diagnosed at age 57, but I had had symptoms for years and a probable CIS when in my thirties. It’s unfortunate that MS symptoms are often vague, but even at their worst can mimic other diseases.
I think you are certainly on the right track in investigating further and working hard to get an accurate diagnosis.
I hope you let us know what you find out. I’ll be praying for a clear diagnosis.
Hi micheleinnaples Welcome!😊 You are more than welcome to ask your questions here!😀 MS is a fickle thing!😐
I am sorry that your going through all this!😕 I totally agree with greaterexp sometimes it's not cut and dried Dx'ed. As it mimics so many things.😒
I truly wish you luck!💕 And when do you get your results back?😊 Please keep us updated!💕
Jes 🌠
Keep us informed of any diagnosis
micheleinnaples Hello and Welcome, We're not docs here, but many suffer many of the similar symptoms you are experiencing..It's a bummer and scary too. Don't give up and keep trying to get your answers. At age 68, I went numb and tingling from ribs down in a matter of 18hrs back in June 2016. I was diagnosed 6 months later, I have lesions in my spine that are MS. Many White spots in brain that doc doesn't want to classify as MS. It's definitely a difficult disease to diagnose, I wound up going to a teaching University that just happens to have an MS Clinic full of MS doctors, nurses and technicians, love them! Please keep us updated, feel free to read along with us, ask questions, contribute and let us become part of your new family.
Many thanks! I'll keep you posted!
Glad we can help, if you can get into see an MS Neurologist, it would be most helpful.
micheleinnaples sorry that you are going through this but like greaterexp said, it looks like you are on the right track. The diagnosis is the biggest hurdle, once you are over it you and your doctor can figure out the best way to go forward. My thoughts are with you.
Hello and welcome micheleinnaples to our extended family and our incredible chat room from Faincy1959. We are glad you have found us. You have found a safe place to come and ask questions, voice concerns, or simply speak to others who truly understand what you're going through. Like you just did! I also was diagnosed at about age 53 and when MS took me down it knocked me flat on my back and I literally couldn't get up for a solid week. My primary care doctor immediately did test gloor and they found a large lesion at my C3 on my neck. From there I went to more specialist, one being a surgeon and this Old Gentleman advised me after looking at my tests and the lesion that at this point he thought I had better pray to have MS because of the size and position of the lesion. Well you guessed it I bawled my eyes out right in front of him!
Prior to being knocked down off my feet my main issues were my loss of balance. I had to make sure I walked with my husband and keep hold of his arm otherwise I wobbled and was not very stable on my feet. Looking back I had other symptoms that I blew off as part of aging. I was less graceful. I had had three children so my bladder was bothering me but that was to be expected from the strain I put on it during childbearing. I fought some numbness in my hands and feet from time to time but my mother had neuropathy and I thought that was the cause. Looking back there's probably a additional symptoms I missed but these were the main ones. Upon diagnosis, due to the number of lesions in my brain and on my spine, it was the neurologist estimation that I had had MS for 10 to 15 years already.
If you are not happy with the local care I would also advise you to continue on with Cleveland Clinic. I was there in 2015 to have liver surgery done and I can attest to the fact that they are the best of the best up there.
Another great resource to use to find local neurologist that specialize in Ms is to contact the National MS Society at 1 800 fight MS. They will dedicate your own case worker to you and they will search and find you the closest Top Notch care available in your area and recommend a neurologist to you. They call the neurologist they work with their Partners In Hope as they all are positive and never give up on a patient no matter your age or how long you had MS.
There is always hope for a cure as research is proceeding at a rate we have never seen before. We all need to pray that the next MS therapy that is found is the one that will beat this monster we all live with. Remember we are only a post away and please feel free to contact us anytime you need us. Please remember that together we are stronger! Until we speak again please take care of yourself and let us know what you finally do to solve your dilemma. We're here if you need more ideas. Fancy.
Thank you for the informative response. I certainly appreciate it!
Hi and welcome. I was diagnosed at 65. Thought I’d had a stroke losing use of my left arm and walking and balance. Spent 5 days in hospital with total brain cervical and thoracic MRIs and spinal tap was diagnosed with MS.
Good luck to you
Donnie
micheleinnaples I was dx with PPMS at age 65 after about a year of tests and consultations. I did not really have any of the symptoms you listed so can not comment on them. I wish you well as you continue to search for answers.
I was dx at 54 yrs. My husband says he thought I had had MS for many years because I was tripping all the time. It was not until I went to an orthopedic dr for my constants back pain and when he suggested an MRI of my back, my husband requested I also get a brain MRI. Well the rest is history - my husband was right! Sometimes I think our bodies take time to realize what is going on and then someone else that sees you on a daily basis makes that suggestion that changes everything. Keep the faith and stay relaxed
about your journey.
Hi. I was diagnosed after 50, but my symptoms aren't nearly as bad as yours. My sister who is 3 years older was misdiagnosed at the same time because they did not read her spinal.tap.results correctly. Her symptoms are a lot different than mine. I have Relapsing-Remitting and she has something different, I think it's the progressive one. Only thing I can suggest is that you come to UT Southwestern in Dallas. They are very good there . Not saying there isn't something as good closer to you, just none I'm aware of.
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