A huge Thank You to anyone that has taken the time to answer my questions. When my md told me that the report for the MRI was fine he told me he was sure it is not MS. He did agree to the neuro consult based on my symptoms, but quite honestly I don't think he believes my symptoms. He also told me I am really too old for this to just show up now. I am 44, (45 in Nov). My questions now are did any of you not show symptoms until 42 or older and did any of you receive diagnosis after a negative MRI?
I would like some advice before attending an appointment with a neurologist. I have been having some symptoms that come and go for since Jan or Feb of 2008. It started as tingling in my left hand and fatigue. I have occasional bouts of vertigo. These symptoms started recurring in December along with one episode of tingling in my left foot, intermittent tingling in both hands and tingling now in my left hand and arm. Heat makes the tingling and fatigue worse. I am also having some difficulty maintaining my balance on the treadmill. (I have been using a treadmill since 2004 so this is not a new activity for me.) Also, when I am quite fatigued I have trouble focusing and trouble finding and getting out the words I want to say. I have had an EMG that showed all was good with my arms except some minor slowing in the nerves near the elbows. I have had many blood tests including diabetes, thyroid, b 12 and all results are normal. I had an MRI w and wo contrast on the brain and spine which I have been told are negative and are fine. My primary MD says this rules out MS (I have a cousin with MS) and he thinks all is probably fine but is sending me for a neuro consult at my request. Things don't seem fine to me. Any advice as what questions to ask the Neuro and if the Neuro also thinks it is nothing serious can any of these symptoms be treated, particularly the fatigue, heat sensitivity, and balance?? I really appreciate any assitance and direction you can provide. Thank you.
Oh, I sympathize with you. My 'symptoms' showed up in May of 09. I was diagnosed with Essential Tremor at that time, and after getting used to that mess, thought nothing of anything more. But not too long after that, probably late Nov, or early Dec... I had numbness showing up in my arms and tingling in a few of my fingers. Fatigue has always been an issue of mine, but at this point in time, it has increased to the point that if I've been working during the day, I almost fall asleep at the wheel going home. There's more symptoms, no diagnosis yet, MRIs are normal, blood tests are normal, lumbar puncture was normal... but yet, I still have increasing problems. I list to one side sometimes when I walk, I have muscle weakness, my left knee goes out and my entire leg gets "lazy" at times...... and I am 45.
Believe your body. I'm going to pursue this and hopefully get to the bottom of it someday.
Your doctor is wrong about the age limits of MS. Young children have been dx'd and people into their 60's and 70's, although both of those extremes are rather unusual.
Three out of four of the co-cl's here were diagnosed later. I was diagnosed at age 54. Quix was about that age too. And Ess wasn't told it was MS until in her 60's.
That's not to say we didn't have it earlier in our lives - looking back now I would guess this has been lurking in my body about 20 years. I just never thought anything of the mild symptoms that I experienced, blaming them on fatigue, low blood pressure, hectic schedule, etc.
There's nothing to say that you haven't had MS longer and its just now becoming apparent.
I was 50 when I was diagnosed, after some 15 years of symptoms. The first 10 years of on/off symptoms were very mild (burning paresthesias after the flu). I blew it off. I had a flair about 5 years ago that really made me take notice. I told my PCP, and she took a wait and see attitude. I started seeking some kind of diagnosis 2 years ago, and was diagnosed last year.
My first symptom was at 47 and my diagnosis was at age 55. More comments later. I can find you some articles. One was from the MSQR - Multiple Sclerosis Quarterly Report (I think) on the whole topic of Late-Onset MS - which is onset of first symptoms after age 50.
You can search through the Consortium for MS Clinics for the article titled "late-Onset Multiple Sclerosis" - oddly enough.
I was dx at 35, I am now 45, but looking back I had sx about 5 years prior.
The 5 years prior to dx I put down to working too hard, stress with work etc.
I had my dx when I was driving one day, and looked to the right going around a corner, and I could see double:/
In hindsight, I wouldn't have pursued going to a Neuro, it was only due to the fact that my Sister had a stroke at 40, and so that was the reason I went full pelt to get some answers - MS was not something I had ever thought about.
So my advice is to go to your Neuro, with your time-line.
I'll add another older-onset MSer to the list above. I started having symptoms of MS right around the time I turned 40. I didn't get diagnosed until I was 47. All those lost years because the symptoms were never tied to a neurological problem.
You asked for advice on when you go to the neuro...In a nutshell, be prepared. Take you list of symptoms - a timeline if you can draft one up before the appointment. Listen carefully to the doctor and ask questions. Don't hesitate to redirect him if he is not answering your questions.
One thing I would ask for when you go in is for a copy of your MRI report. In fact, get a copy of all the tests they have in your chart so you also have them in case they are needed later.
Also,have this doc go over the report with you and hopefully look at the scan on his computer while you are there. I have found time and again that a doc has said the MRI was fine and then when I looked at the report, there are discrepancies.
I hope you get good care at this upcoming appointment. Don't forget to be proactive. No one cares more about you than YOU.
Good-luck and keep us updated on how you are doing.
I was diagnosed at age 53 but looking back at weird things that happened to me, I started having symptoms such as numbness in my feet and legs about 10 years before then another attack, optic neuritis, 7 years ago. Was fine except for what I thought was lower back problems until 2008 when my hands and pelvic area when numb along with my feet and legs. That prompted an all out round of testing: MRIs of brain cervical spine, thoracic spine and lumbar spine which showed lesions in brain and cervical cord. Then lumbar puncture which confirmed the MS. All of my attacks came after periods of intense stress!
Hi ... just thought I'd add another voice to the later-diagnosis group. I started having symptoms in October 2007, and I was diagnosed in February 2008 - shortly before I turned 45.
As far as your neuro appt., definitely bring copies of all the possibly relevant tests you have had. But also, get the films or a CD with the actual MRI images on it (you could call the neuro's office and see what he prefers), not just the report. The neurologist should look at those films himself. I was an ultrasound tech for 25 years - I can tell you that when the radiologist reads your films, he or she has very little info about you. The neuro should look at those films in context of your symptoms, (bring a timeline), his office exam and what your MRI's do or do not show.
I had very few lesions on my MRI and the radiologist basically blew them off. But when I saw my neuro the first time, and he looked at the films in context of my whole picture, he said they weren't "classic", but he had no doubt they were, in fact, MS lesions. (Unfortunately, I've developed a "classic" lession as of last May, lol.) As far as my spinal cord, no lesions showed at the time, but he just looked dead at me and said, "Well, we KNOW you have lesions there based on your symptoms and my exam. They just aren't showing up yet." I've not had my cord since then, so I don't know if they are showing up by now or not ... :)
For me, I think the big thing is finding a neuro who will listen to what you say, do a thorough exam, and who is not intimidated or ticked off if you ask questions or if you do research on your own. You need one who looks at you as a PERSON, not just a "case". Then you can work as a team to find the answers you need. Unfortunately, if you do much reading here on the forum, you will see that those neuros are hard to find. I always tell mine that finding him was like finding a unicorn or Bigfoot, lol. You had heard rumors they exist, but you were never quite sure .. :)
Also, if he thinks it might be MS, there are a boatload of tests he will probably order. In the end, MS is a clinical diagnosis, and a diagnosis of exclusion. After my first visit with the neuro, I ended up having 17 vials of blood drawn to rule out every possible, obscure mimic.
Best of luck with your appt, and by all means let us all know how it goes. Feel free to PM me if there's any other questions you have - I'm happy to help when I can ... :)
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