Ehlers-Danlos Sydrome, Doctor says too old to have ms

[Gypsylady01]

Hello all, am new to the forum. I am going to try my best toget through this and make sense. Thanks for your patience. First of all I am 48 will be 49 in May. My health has been slowly declining for the last 7-8 years. I was diagnosed with Ehlers-Danlos Sydronme in January( had never even heard of it befor then but was a blessing to finally understand me a little more). I have had muscle twitching for probably 7-8 years. Over the past year it has become so bad that my muscles seize up from fatigue,and causes such pain. I have occasional numbness in hands and my lower face. Cognitively it is just not there anymore, some days it is just too hard to think, my words are so hard to find sometimes. Easy sentences take me so long to think about. Sometimes the words just come out wrong or mixed up. Sometimes am unable to swallow, it's like the ability is just gone. When I talk for any prolong period of time, I become out of breath and becomes more difficult to swallow. I choke on my food more often than before. I asked my husband when he noticed a difference in my cognitive and he said around 2007. I mentioned to my doctor if he thought I may have ms and he told me I was too old to be diagnosed with ms. I do have vitamin d deficiency and take supplements. I welcome any thoughts please.

[Snoopy]

Hello Gypsylady01,

I mentioned to my doctor if he thought I may have ms and he told me I was too old to be diagnosed with ms.

Was this a Neurologist that told you, you are too old for MS? If it was then please find a different one. Many years ago MS was referred to as a young person's disease, diagnosed between the ages of 20 and 40. This is no longer the case, MS np longer has age limits. Those very young (pediatric) and those well over 40 are diagnosed with MS.

If you are concerned about MS then please speak to your Dr. about testing. A diagnosis of MS cannot be made on symptoms alone as there are other conditions that can cause similar type symptoms. Something you may want to consider for your cognitive problems is NeuroPsych testing. This type of testing is done for many different conditions/diseases.

[jimmylegs]

hi and welcome if you have d3 deficiency, you would be wise to watch out for cofactor deficiency. magnesium is one obvious candidate. do you have a multivitamin/multimineral in your routine?
there are posts on the forum about ehlers-danlos. i'm hoping that adding it to the post subject will pull them up in 'related posts' below.
didn't work, will have to be either an edit to your original post's subject, or you can just search the forum to check out the older related chats (if you have not already done so that is).

[Gypsylady01]

Have not seen a Neuro was primary care. Pain doc put me on neurotin today am hopeful will help.

[oreo]

Get a new doctor ASAP. Too old. A load of crap. You are never too old to be diagnosed with MS.

I was diagnosed in 2004 at the very young age of 50.

The neoro's did a very careful clinical review of my medical history and determined that an episode that occurred when I was only 20 was in fact the onset attack of MS. (They didn't have MRI's back then so it wasn't correctly diagnosed.) The disease then went into remission for about 25 years before it reared its ugly head again at about the age of 45. It still took about 5 years of multiple weird symptoms before I was diagnosed.

The age you are when they finally diagnose you has nothing to do with the course the disease may have already run in your body. Any doctor who can't wrap his head around that fact should not be practicing medicine.

[sharonford]

Hello! I just joined this site today. I am 47 and was just DX with MS 3 months ago. I'm still learning a lot. I'm an active duty Army Soldier and have been for 16 years now.
MY ADVICE TO YOU IS TO GET A NEW DOCTOR ASAP!!!!! NO ONE HAS YOUR HEALTH'S INTEREST AT HEART MORE THEN YOU DO!!!
There is no "YOU'RE TOO OLD FOR MS" I have learned that a person can have it for many years and not realize it for several legit reasons. I had all the signs and symptoms for many years but just never at one time so no one ever thought MS. It wasn't until my vision which had been getting crazy bad (I thought because I spent so much time on a computer and the natural aging process) and I forgot how to get home one day that I thought ok maybe I'm having a residual effect from a TBI suffered years earlier. My Doctor said lets just be safe and order an MRI. next thing you know Im being sent upstairs to a neurologist

at that point i had 2 active lesions and over 10 black holes. my last mri showed over 20 stupid active lesions. My neurologist said definately ms but we will do all the tests to rule out any mimics. i had the lumbar puncture. I had the evoked test. i had quite a bit of lab work. i'm on daily injections now that should hopefully slow the progression. but i was told that ive had it a long long time and there is irreversable damage (i think my spelling is one of those.....lol )

I guess i say all that to say this: Some people have a lot of muscle or mental or something that allows them to be able to go through many years without a clue or like me their ms symptoms come and go for many years before permanent damage is done.
my office partner and i used to run 4.5 miles 6x a week. after a year or so my feet started going completely numb. the feeling would always come back. at first i was scared but we (being the dummies we are) googled it and google said it was normal for people who run alot. i decided as long as i dont fall down no worries.
fatigue and depression for several yrs- i am an active duty recruiter so i thought it was just the stress and long hours. My short term memory severely impaired but i just reasoned that away by saying it was because i had to do so much multi tasking and i was a little ditzy at times. i can go on and on and every sympton or issue can be linked to something minor all by itself but once you put it all together, it can create a totally different pic.

I say all that to say this once again.... Get a different doctor, IF IT'S NOT MS, GREAT! YOU WILL KNOW AND HAVE THE STRESS OF WHAT IF OFF YOUR MIND BUT IF IT IS, THE LONGER IT GOES UNDETECTED/UNTREATED, THE MORE DAMAGE THAT WILL BE DONE.

[Gypsylady01]

Thanks guys I am going to go see a Neuro ASAP. I know there is something not right that the Doctors are not see. So thanks for all the info. I have been such and independent person all my life have lived with pain and have been able to push through it and do what needed to be done. Had three jobs at one time, my motto has always been " you do what you have to do no matter what". Well can't do that any more. On bad days I have to use my electric chair to get around, have confusion, unable to say, what I want to say with out really thinking hard about it first, and even then the words some times come out wrong. Other times it's just too hard to figure things out so I just go to my and go to bed. My body refuses to work right, legs just give out, body continuously twitch a and jerk. Have always been proud of being able to spell words, incorrect spelling as always been a pet peeve of mine, now some days it is just too hard to remember how to spell even the easy word. I knew some ting is wrong and tired of being given excuses about it.

[Gypsylady01]

I apologize if I rambled, and my post may have been unorganized, am having one of those days, and thoughts are sometimes jumbled and well, hard to use the right words. Thanks to all of you.

[jimmylegs]

my plan for the subject field didn't work. guess nobody else put EDS in their subject text either!
so here is a link to older EDS discussion, including my 2012 question for huey.
i'll be interested to see if you have an answer, in case there is room to explore potential action items
http://www.thisisms.com/forum/chronic-c ... 19914.html