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MS
by doni54, Jul 22, 2007 12:39PM
I have just found this forum today and am very glad I did. I hope some of you might can answers some of my questions.
I am a 52 year old female. I have been dealing with numerous symtoms of MS for years (at least 15 years), though I didn't realize this until recently. Fatique and muscle weakness has taken me to my GP on many occasions thru the years, with no answers. I have always been very active and did much physical activity so muscle weakness at some times was thought caused by work.
Three years ago while on my riding mower cutting grass, I had sudden blurred vision and almost a prism effect start in my right eye. It was very hot outside and I just chalked it up to dirt in the air, but had an uneasy feeling about this occurence. This has happened to me numerous times in these past 3 summers, and in the past 6 months have had a constant film like feeling over my right eye with no improvements.
I had been doing my own research, trying to figure out what was wrong with me since doctors weren't finding any answers, and my problems with extreme fatigue and numbness in my arms and legs is getting worse. I never really found anything with the majority of my symtoms, they would just have one or two that related to the problems I was having.
I have never given any thoughts to my problems being associated with MS, but was watching a talk show on TV one day two weeks ago, and they were discussing some of the symptoms of MS. It was like getting slapped in my face! They were describing almost all my symptoms plus some. When I heard a patient describing the burning, pin prickling feelings in his feet and hands I couldn't believe what I was hearing, as I have had this problem for about 9 months and sometimes the severity of the burning and itching makes me feel like screaming!
After viewing this program I started to research the symptoms of MS. I have the following symptoms: blurred vision, eye pain, flashing lights in eyes, muscles weakness (started in right arm and leg and now involves both arms, hands, legs and feet), spasticity in feet and hands, involuntary contraction of muscles, spasms and cramps (fingers, arms, legs, feet, toes), twitching muscles (legs, arms, face, back and trunk of body), RLS ( have had this problem my whole life), partial numbness, tingling, buzzing and vibration sensations in arms, legs and back, pain without cause, burning, itching and electrical shock sensations (feet, hands, down my back), loss of coordination, some shaking in arms and legs, but not too severe, urinary urgency and incontinence, bowel urgency, short term memory problems, forgetfulness, slow word recall, anxiety, increase of severity of symptoms with heat ( especially blurred vision, weakness in legs and arms, tingling in arms), cold and hot spots on body, insomnia.
I have tried to think back to when some of my symptoms started and to my best recollection I have been having leg weakness and arm weakness problems for approximately 12-15 years, I have often used the saying, "I'm gonna sue my legs for non support", doesn't seem so funny anymore. Fatique has been around for about the last 7 or 8 years and gets progressively worst. I now have times that my fatique is so bad that the only way to describe it is, "I don't even have the energy to breath". As told above, my eye problem started 3 years ago and has now progressed to a constant blur in my right eye. Burning, tingling, itching in my arms, hands, feet, and legs started about 9 months ago.
Just visited my GP again and told her my fears about MS. She ordered blood tests and mentioned a possible MRI. I have probably given too much info, but I guess I just need to know what you guys think, and should I go ahead and try to find a neurologist who specializes in MS?
I really do not want this to be MS, but I have struggled for years with the symptoms I've described and sometimes felt like I was loosing my mind when I kept being told nothing was wrong with me. Just putting a name to my symptoms and knowing how to live with it would be a great improvement to what I am dealing with now. I would be grateful for any input any of you might could give me.
Thank you!
I am a 52 year old female. I have been dealing with numerous symtoms of MS for years (at least 15 years), though I didn't realize this until recently. Fatique and muscle weakness has taken me to my GP on many occasions thru the years, with no answers. I have always been very active and did much physical activity so muscle weakness at some times was thought caused by work.
Three years ago while on my riding mower cutting grass, I had sudden blurred vision and almost a prism effect start in my right eye. It was very hot outside and I just chalked it up to dirt in the air, but had an uneasy feeling about this occurence. This has happened to me numerous times in these past 3 summers, and in the past 6 months have had a constant film like feeling over my right eye with no improvements.
I had been doing my own research, trying to figure out what was wrong with me since doctors weren't finding any answers, and my problems with extreme fatigue and numbness in my arms and legs is getting worse. I never really found anything with the majority of my symtoms, they would just have one or two that related to the problems I was having.
I have never given any thoughts to my problems being associated with MS, but was watching a talk show on TV one day two weeks ago, and they were discussing some of the symptoms of MS. It was like getting slapped in my face! They were describing almost all my symptoms plus some. When I heard a patient describing the burning, pin prickling feelings in his feet and hands I couldn't believe what I was hearing, as I have had this problem for about 9 months and sometimes the severity of the burning and itching makes me feel like screaming!
After viewing this program I started to research the symptoms of MS. I have the following symptoms: blurred vision, eye pain, flashing lights in eyes, muscles weakness (started in right arm and leg and now involves both arms, hands, legs and feet), spasticity in feet and hands, involuntary contraction of muscles, spasms and cramps (fingers, arms, legs, feet, toes), twitching muscles (legs, arms, face, back and trunk of body), RLS ( have had this problem my whole life), partial numbness, tingling, buzzing and vibration sensations in arms, legs and back, pain without cause, burning, itching and electrical shock sensations (feet, hands, down my back), loss of coordination, some shaking in arms and legs, but not too severe, urinary urgency and incontinence, bowel urgency, short term memory problems, forgetfulness, slow word recall, anxiety, increase of severity of symptoms with heat ( especially blurred vision, weakness in legs and arms, tingling in arms), cold and hot spots on body, insomnia.
I have tried to think back to when some of my symptoms started and to my best recollection I have been having leg weakness and arm weakness problems for approximately 12-15 years, I have often used the saying, "I'm gonna sue my legs for non support", doesn't seem so funny anymore. Fatique has been around for about the last 7 or 8 years and gets progressively worst. I now have times that my fatique is so bad that the only way to describe it is, "I don't even have the energy to breath". As told above, my eye problem started 3 years ago and has now progressed to a constant blur in my right eye. Burning, tingling, itching in my arms, hands, feet, and legs started about 9 months ago.
Just visited my GP again and told her my fears about MS. She ordered blood tests and mentioned a possible MRI. I have probably given too much info, but I guess I just need to know what you guys think, and should I go ahead and try to find a neurologist who specializes in MS?
I really do not want this to be MS, but I have struggled for years with the symptoms I've described and sometimes felt like I was loosing my mind when I kept being told nothing was wrong with me. Just putting a name to my symptoms and knowing how to live with it would be a great improvement to what I am dealing with now. I would be grateful for any input any of you might could give me.
Thank you!
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Stick around and see what everyone here is gonna say. I am sure you will get alot of good advice and support. I am sory you are having these problems but we are glad you made it here.
Kristin
Bless you,
Doni
Your story is SO suggestive of MS. You've been very tolerant of all the things that have happened to you, wow! Many of us would have been clamoring for answers with fewer symptoms. Your GP needs to ORDER the MRI (not merely consider it) It should be of the Brain, C-spine and T-spine and the imaging should be with and without contrast. I would encourage this asap. You also need a thorough neurological exam and it wouldn't hurt to ask for a referral to one. Are you in the US?
I agree that putting your course into a timeline is a great idea. The paragraph where you list your symptoms is overwhelming and it's the appearance and progression/resolution of those symptoms that tells the real story. So, you apologized for giving "too much info" Ha, ha - there is never too much info. I have dozens of questions. You have been so patient with all this and I am already impatient.
Of course you don't "want" MS and no one here can diagnose it. But, you know already that something is very wrong. What is known and named can be dealt with, researched, talked about, cursed, treated and what has no answer is impossible to deal with. By the time I got my diagnosis I knew what I had. Hearing the words almost made me jump for joy (overstatement). But, more than 2 years of wondering was put to rest. I have since beeen less than happy with each thing that confirms it.
I'm glad you've read a lot of our posts. There is one back a ways called "What I went through to get a diagnosis." It introduces several of us who are here. Another is the "Timeline 101" post which describes how to begin chronicling your symptoms, problems, Dr.'s assessments and such. I guarantee that when you are seen by the next doc (probably a neurologist) it will be invaluable to have put it all together - both for you and for the doc.
Personally I think you should put together the timeline and make an appointment with an MS specialist. You'll have to check. Some will only see patients with a confirmed diagnosis. Others will help put the work up together. Let us know if you need help looking for a specialist, doing the timeline, asking if certain things fit, whatever. I am a physician, but not a neurologist. I'll answer any question I know or can find the answer to. I'm glad you're here.
Quix
In answer to one of your questions, I live in Lincoln, AL about 40 miles east of Birmingham. As you can guess the weather here in not great for anyone with MS, if that is in fact what my symptoms qualify. We have been in a drought this year which only made things even hotter, 95-105 degrees daily. Started getting a little rain last week, but only adds to the humidity. I've been avoiding it as much as possible by staying inside!!! Boy, I'm such a wimp!!!!
I know exactly how you felt about getting a diagnosis. I never in a million years considered the possibility my problems could be MS, until I accidentally caught the comments from that talk show and really started researching. I go from being positive that I have MS, to hoping I don't. Had a really bad day yesterday, extreme fatique and legs didn't want to work at all, seemed like my arms weighed 200 lbs each, brain really fuzzy and concentration non existent. Kinda depressed this morning, but after I finish on the forum I'm gonna work on my timeline.
Thanks for thinking I've been tolerant of all these symptoms. I have always been an outdoor person and love to do my own landscape work and would always work until I couldn't move, so I just never gave any thought to severe cramps or fatique. I married my childhood sweetheart in 1996 and he is a home builder, so being me, I just jumped right in and started helping him build homes. More hard work and exhaustion, but still just thought it was from working so hard.
I started menopause in my mid forties and chalked up some of the symptoms to that. And considered that I probably just had arthritis. One doctor I went to about 5 years ago told me I was just going thru mp and getting old and that was my problem. I didn't like that so I just told him that 47 wasn't old and that I had always been a hard working physically fit person and that I just did not believe that I should feel the fatique that I was feeling just because of my age., especially the growing weakness in my arms and legs. Of course he only looked at me like I was an idiot. Now I guess I should have gotten a second, third or fourth opinion until I was satisfied with the answers I was receiving.
Hindsight being what it is can't change the present or future. I just have to be strong like all of you and fight forward until I get answers. Thank you again for being here and being so thoughtful and caring. I hope you are feeling better and appreciate the struggle you must go through to try to help us here on this forum. My prayers are with you.
Thank you,
Doni
Good luck in your search and God bless.
Best of luck to you!
I know you are very busy helping out so many who have found this site ( which I too have found to be a God-send).
I am 54, for the past few years I have been having symptoms that at first I ignored., now can't..
* tripping when I walk, sometmes feel like I need to drag my left leg
*walking extremely slower than usual, unable to keep a straight path
*brain feeling foggy, fuzzy, difficulty multi-tasking
*slow word recall, thought processing
*dizziness, sending me off balance almost daily since Oct.
*burning and tingling in left ankle to foot
* numbness and tingling in the left hand especially the fingers
*weakness in both legs when trying to walk up stairs
*weakness in the left arm, sometimes I feel like I need to cradle it
* balance off... as I often call it... feeling like a weeble-wobble
*strange pain in right thigh that extends to the back of my knee and calf- very sensitive to touch
* impairment in visual spatial, visual search
* extremely sensitive to heat ( have passed out several times in the past few years, so avoid as much I can)
*unable to drive the past few months due to the dizziness, balance issues that occur when I try to turn my head ( difficulty with range of motion)
My symptoms have been ongoing for the past few years but since Oct. the dizziness, balance and the cognitive issues have become overwhelming.
I was under the care of a rheumi for several years for connective tissue disease, antiphosphlipid antibody syndrome. I am taking neurontin, plavix, aspirin, folic acid
I am now seeing a neuro who has diagnosed me with periperal neuropathy
Blood work was normal except for low folic and high platelet count
*Brain MRI- negative (I went to one of the standing MRI's)
*C-spine -severe degenerative changes w/ osteophytes &or herniations @C4-5 & C5-6 casuing a pattern of stenosis
* Lower spine- can't find the report but i believe it stated herniations of L4-L5
I also saw an ENT for the vestibular symptoms, received some therapy, not very helpful though
Saw a Neuro-psychiatrist for cognitive issues, very concerned, sending me to a neurologist in Manhattan specializing in these issues
Do you think that these symptoms are from the periperal neuopathy?
Could it be MS?
Any assistance would be so helpful. Thank you!
Doni ,
you have been very patient,I'd blowed with my Drs by now.
Before my Dx of MS I had visual problems off to the eye Doc. I've had for years,he told me that my vision drastically changed over night do to my magical age.It was a week before my 40th birthday.I also had a neuro tell me that I was just getting old.I was dx'd Dec.2006 a week before my 41st birthday.Needledd to say the eye Dr and neuro had one less patient.hang in there be your own advocate and continue your for answers to your symptoms.I'd call the GP and ask for the MRI,to lesson your fears it would get the ball rolling.
Fran,
I'd get a second opinion and copies of all my MRI's and reports.
It's not unusual to have 2 disorders occurring at one time,this is where a specialist comes in and needs to seperate them.
Neuropathy normally doesn't effect the vision.Heat intolerance should ring a bell for most neuro's.
I would definatly find a neuro equipped in dealing with MS and get another opinion on the MRI's.
I'm guessing they done an EMG/NCS to find the neuropathy?
Welcome to our virtual family,its great to see how we have grown!!!!
Sorry i haven't responded to you welcome... somehow i missed it... thank you for your advice. I am seeing a neuro who specializes in cognitive problems tomorrow...
Yes i did have an EMG/NCS & that is how she doagnosed me with the neuropathy... the neurontin is not very helpful... do you have any suggestions that may help?
Thanks again for the kind welcome... take care & God bless.
Frann
Glad I found all of you!
Be Well
Doni
I personally can share this:
I have MS, but later found I have Lyme Disease. In your search for answers I think ruling Lyme Disease in or out is very important!
not an easy road unfortunately! Testing is very unreliable. Another words if you were ever tested by ELISA false negatives are common.
Testing needs to be done at a lab that specializes in Tick Borne Diseaseslabs that test for ALL the bands, and there are only a few of them in the US.
Finding a doctor who specializes in Tick Borne Diseases is your best defense. Most conventional doctors will use conventional tests through standard labs; and lyme will not be found.
Your symptoms btw are very similar to lyme symptoms. And they come and go. Very smart bacteria, that hides and replicates in our cells!
Here's a few sites that offer lots to read and help finding the "right" doctor.
lymenet.org info and doctors
ilads.org info
igenex.com - lab for testing
Lyme mimics so many auto-immune diseases, and it's underdiagnosed.
I had to become my own advocate, and look into this devastating disease in order to get my answer.
Maybe you too can do the same.
Wishing you good health,
tory