SITTING IN LIMBO

New members should feel free to introduce themselves here

SITTING IN LIMBO

Postby teckla54 » Mon Nov 13, 2006 12:21 pm

Hello everyone, my name is Sharon I am 52 years old. In the spring of 2005 I went to my Dr. complaining of tingling in my left foot and leg up to the knee. After going through an EEG and finding nothing wrong, he decided it was just an isolated nerve condition and that it would probley just go away on its own. Then he said “I might think MS but you’re too OLD!” Well I left the office and pretty much forgot about it. The Dr. was right it did go away, but it came back, and went away, and came back. I accepted the Dr.’s explanation and went on with my life.

Then in late November I all of the sudden got double vision, to make a long story short, it took over 4 months, and mega doses of prednisone to
get rid of the double vision but I still can not see out of both eyes at the same time, my eyes do not track together. During the search to find out what was wrong my optometrist did a brain MRI and discovered that I had about 30 spots on my brain and he suggested MS. An optometric neurologist read my scans and said she didn’t think so, first I was too OLD! But also the spots were not in the right place.

I went back to my family Dr. reminded him of what he said earlier that year. We started going over symptoms I was having, Heat sensitivity, trouble sleeping, tingling in both hands twitches in ankles, hands fingers and arms, pain in my back, unable to stand for more than five minutes due to pain in my lower back legs and my legs start to shake real bad, excessive cramping in my toes feet caves and thighs, trouble going up and down stairs my legs shake so bad, and then those pesky mussel spasms, in my toung my ears my feet, my legs my arms, just all over. Sharp stabbing pains that last only a few minutes in different parts of my body, and the worst of all mind fog, every one at one time or another has done something like put the keys in the fridg, but I am doing stuff like all the time, and communicating when you can’t find the words is tough. I even forgot my granddaughter’s name! I knew her middle name but could not for the life of me remember her first.

On to another Dr. this times a brain neurologist, Dr. Carlson. Now for all of the tests, I won’t go through them all, but I do know I don’t have Lime, Lupus, and a lot of other scary diseases. I had a Ct, MRI of brain, neck and spine, also a lumbar puncture. The only thing to show up on these is those pesky spots and arthritis in my spine. I’ve been to cardiology, urology, and many other specialists. Nothing wrong! At this point my neurologist isn’t ruling out MS.

I’ve been reading posts on this site for about a month, and I see how frustrating MS is but at least when you get dx’ed you can get on some kind of a treatment plan, I am just sitting in limbo waiting.

My prayers go out to all of you.
SHARON
User avatar
teckla54
Newbie
 
Posts: 3
Joined: Fri Nov 03, 2006 4:00 pm
Location: Pa

Advertisement

Postby Loobie » Tue Nov 14, 2006 10:58 am

Welcome Sharon and good luck with your diagnosis. From what you explained it sure sounds like MS, but I am not a Dr. Just keep pecking away at them. For them to say you are too old is nuts. You may have had MS working on you for some time, but just in inert areas of your brain and CNS and they are just now presenting as clinical symptoms. You will like this board. No BS here! Just the facts and a lot of sage advice from fellow MS'ers, not drug salesmen.

Loobie
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby REDHAIRANDTEMPER » Tue Nov 14, 2006 12:51 pm

sharon,
welcome to the group i am in the same boat as you,....for me i have the no feeling in my right leg and arm with tingling in my left leg..get tremors off and on and also cant see but a little out of my right eye...and my dr hasnt given me a diagnotis yet...we know its not the same ones ya had listed....so i understand the frustration you are going thrue..am heading on a yr and a half for me now.....but good luck and i hope they give ya a diagntis soon...

chris
waiting for answers
User avatar
REDHAIRANDTEMPER
Family Elder
 
Posts: 285
Joined: Mon Nov 07, 2005 4:00 pm
Location: wisconsin

Postby Vidalia » Tue Nov 14, 2006 4:08 pm

Hi Sharon, I was a "late bloomer" too. I was DX'd almost two years ago and it was only after two weeks of numbness that I even bothered going to the Dr at all. That was the first time I had been to the Dr in years but I thought I had a pinched nerve and it wasn't going away. Or I was having some type of stress reaction (my son was in Iraq at the time) and I needed a "calm me down" pill. I wasn't totally wrong. I have what I call a "goober" on my neck that showed up on an MRI. Time has passed, symptoms are exactly the same today as they were when I went to the Dr. I'm a lot poorer from all the tests and medicine he said I needed. So a DX of MS, even a treatment plan, doesn't really provide me with a lot of comfort at this time.

Welcome to the group. I look forward to reading your posts.

Peace, V
User avatar
Vidalia
Getting to Know You...
 
Posts: 19
Joined: Tue Oct 24, 2006 3:00 pm
Location: Ohio

Postby Arron » Thu Nov 16, 2006 2:34 pm

A warm welcome to you Sharon!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
User avatar
Arron
Volunteer Moderator
 
Posts: 892
Joined: Sun Feb 01, 2004 4:00 pm
Location: California, USA

Postby madlou » Thu Jul 12, 2007 4:32 pm

I turned 55 around the same time I was diagnosed. So I guess it can start at any age.

Vickie
Michigan
Last edited by madlou on Fri Jul 13, 2007 2:50 pm, edited 1 time in total.
User avatar
madlou
Newbie
 
Posts: 1
Joined: Wed Jul 11, 2007 3:00 pm

Welcome Vickie

Postby Lyon » Thu Jul 12, 2007 7:54 pm

Hi Vickie,
Welcome to thisisms!

Bob
Last edited by Lyon on Sat Jul 14, 2007 7:28 pm, edited 2 times in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Welcome

Postby Shayk » Sat Jul 14, 2007 5:07 pm

Hi Vicki

Welcome--

Yes, MS can be diagnosed at any age. I'm a different "Sharon" who was diagnosed about 4 years ago at the age of 57.

I switched from Avonex (an interferon) to Copaxone about 9 months ago in part because of the spasticity I was experiencing, which is apparently a known side effect of interferons. I am very glad that I switched and I've sent a pm with more detail.

Take care--

Sharon
User avatar
Shayk
Family Elder
 
Posts: 779
Joined: Fri Feb 06, 2004 4:00 pm

Postby AllyB » Sat Jul 21, 2007 2:33 pm

Hi there

Nice to hear from you, though sorry for the circumstances. It must be horrible to be in limbo like that - the medical profession, for all we need and depend on them (and their are a few really great ones out there), don't really get it. They can't understand how we feel at all, and their attitude in general seems to be very conservative when it comes to giving a diagnosis such as ms - understandable in a way as it is not a very nice "label" to be stuck with. On the other hand, the sooner one gets diagnosed and on some appropriate treatment, the better, and some sort of mental and spitirual adjustment can be made. Information is power, which is why I love this site - there are so many people with a wealth of knowledge and personal experience that we can all benefit from in our search for better health.
I hope all goes well with you and keep us posted on your progress.

Take care

Ally
Al
User avatar
AllyB
Family Elder
 
Posts: 360
Joined: Sun Apr 22, 2007 3:00 pm

Postby pinda » Sat Jul 21, 2007 11:09 pm

Hello Sharon. Just read your post and replies. I am 59 and have possible MS symptoms for 5 years. Have been dx with central nervous system disorder. My symptoms are inconclusive for MS but do show central nervous system problems. See neuro every 6 months and having another MRI of my brain, been 3 years since last one. MRI has shown 11 lesions but inconclusive for MS, lumbar puncture OK. Have balance problems, walking problems so use stick when going anywhere, lots of sensory problems, fatigue, internal temperature is haywire, and on and on. Hard at times to not know but also see why the neuro is not in a hurry to say MS. Could be something else and once dxed Dr's may not look further. Does happen to us older ones and maybe we have had small symptoms for years. I can look back on some but maybe looking too hard. I try to live my life fully and not let my body get me down. Life is too short to dwell on what this could be. Seeing the neuro every 6 months has helped, he gives me time every visit and feels I am not progressing very quickly with what ever I have. A slow progression which does not get better. I have good days and bad days but always symptoms. Specialist is an MS specialist, this helps. Guess I am trying to say do not be in a hurry for a dx, could be something more treatable. Hope this helps somewhat. Smile and look at the good side of things when you can. Linda
User avatar
pinda
Family Member
 
Posts: 68
Joined: Fri Jun 18, 2004 3:00 pm
Location: surrey, b.c., canada

Postby Lyon » Sun Jul 22, 2007 9:54 am

Hi Sharon and welcome to the site,
I agree with the "other" Sharon that you can be diagnosed with MS at any age and I think you're going to see older people diagnosed with MS more often in the future.

Who knows why age 40 had been considered as the upper limit for MS "onset"? Possibly partly due to the fact that the older you get the more likely it is that the patients and medical staff will dismiss symptoms as something age related.

I'm personally convinced that the underlying disease process starts at a similar age for anyone who will, at some point in life, be diagnosed with MS (and those who have MS but will go through life without realizing it) and that age of "diagnosis" or age of "onset" signifies nothing more than the age in which the insidious underlying disease process overcame the masking ability of plasticity and became noticeable.

For that reason, I think, people diagnosed at an older age might as easily be comforted that their MS has already proven to be on the slow track as be alarmed that at the time of diagnosis they are already close to the limits of their plasticity, which could drastically lower their chances of symptom reversal and make further progression much more obvious and seem to have taken a more progressive turn.

I think the opposite of this situation is why we've noticed that when the disease process has been stopped/halted in young people who had experienced fast progression, their reversal of symptoms is so dramatic. They are young, when plasticity is at it's optimum, and their progression had been at a rate faster than plasticity can mask. Stop the disease process and with a little time and, in a young person, all that available plasticity can produce wonders.

At least that might be considered an interesting Lyon "brain fart" :oops:

Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Reports on MS in young people?

Postby lyndacarol » Sun Jul 22, 2007 1:49 pm

Lyon, you wrote,
...we've noticed that when the disease process has been stopped/halted in young people who had experienced fast progression, their reversal of symptoms is so dramatic. They are young, when plasticity is at it's optimum, and their progression had been at a rate faster than plasticity can mask. Stop the disease process and with a little time and, in a young person, all that available plasticity can produce wonders.


Could you point me toward a report on this phenomenon? I didn't know that "we have noticed" this.
User avatar
lyndacarol
Family Elder
 
Posts: 2317
Joined: Thu Dec 22, 2005 4:00 pm

Re: Reports on MS in young people?

Postby Lyon » Sun Jul 22, 2007 3:44 pm

lyndacarol wrote: Could you point me toward a report on this phenomenon? I didn't know that "we have noticed" this.
Hi Lynda,
I should have known that "most times" when I stick my foot in my mouth, you are going to be lying in wait to catch me and rub my nose in it.

Thankfully "most times" means that you can't be everywhere at once and has allowed me to get away with sticking my foot in my mouth much more often than you will ever know.

You're right of course in that this involves personal observation on my part, which, to my knowledge, isn't supported by a journal article.

Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm


Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service