Has anyone had my symptoms?

[OllieO]

Hello again,

I have been totally obsessed with MS lately.  It never occurred to me that my symptoms might be MS until I did an internet search on heat intolerance last month.  Now it is all I can think about!  So excuse me for my frequent questions!  It helps me to ask.  I am wondering if any of you who have officially been diagnosed have had a slow onset of symptoms as I have.  Many of you have really severe symptoms.  My symptoms have been slowly and sublty appearing.  First some tingling in my toes in hot water then subtle numbness in my lower leg, then tingling and tightness in my lower left leg, then some subtle numbness in my left arm and hand (and occasional pain), warm feeling on the left side of my face, then left eye pain and a little blurriness.  Nothing is severe and intolerable, just distracting.  I even thought of cancelling my MRI (they are expensive!!) because so many folks are suffering greatly and I am not.  But then I thought - it could get worse and then I may regret not knowing earlier and taking meds.

Thanks everyone and have a great weekend!

OllieO

[Quixotic1]

I realize that it was specifically heat intolerance that brought MS onto your radar, but it was also that you have other things, like these tinglings and band-like sensations, that made MS more like a possibility.

The MRI maight settle things for good or leave you where you are now.  It certainly is up to you whether you want to search for answers, but we will be here to help in any way we can.

Quix

[Heartshome]

I am in limboland as well. My symptoms mirror yours. First numbness and tingling in the right foot. Then in the right hand, then in the left foot and hand, then it moved up on both sides to mid-calf and mid-arm. Then some feelings of dizzyness, balance issues, burning in thigh and right foot, cognitive issues, extreme fatigue, etc. etc, etc. This has been going on off-and-on for at least six years now. All MRIs are clear, all tests for the mimics are clear, so they think it's a very slow-to-progress MS or MS-type thing. For now I eat a healthy diet low in sat fat, get lots of rest, and avoid stress as that seems to set it off.

This is a great place to come for answers to your questions. Lots of caring, helpful people. Very glad that you're here with us!

Lisa

[mary_kay]

You have come to the right place.  These friends have a lot of good information and support for you.  
Mary Kay

[OllieO]

Thank you for your feedback.  One of the main reasons I don't want to go for the MRI is because I know how difficult it can be to diagnose MS  and other nerve conditions and that brain lesions can point to other conditions.  I hate going to doctors and I know I do not have the staying power to keep going for years to figure out why I have my symptoms - I will throw in the towel unless things get really worse!  I don't think my symptoms are brought on by worry as they have been going on for a few years and I have been pretty sucessful at writing them off.  I usually have the viewpoint that if something won't kill me and is not to painful I will just live with it.  Life is imperfect, right?!  But my doctor suggested the MRI for two reasons - the fact that my symptoms are slowly getting worse and the heat intolerance.  Apparently many MS patients feel their numbness and tingling getting worse when their core body temperature rises.  When I get in the shower my left calf feels very tight like someone is squeezing it and a little numb.  I hope you have a wonderful weekend and that things improve for you!

OllieO

[MrsAristotle]

The wonders of Google LOL.

Heat intolerance might not necessarily point to MS.

I googled heat intolerance and found 22 medical conditions for this not one showed MS.

http://www.wrongdiagnosis.com/symptoms/heat_intolerance/causes.htm

Some of the symptoms you mention can be brought on by lots of things even anxiety, worrying about having MS can make all this worse for you.

Lymes disease and B12 deficiency can be a factor in your symptoms even onset of diabetes.

I dont say you havent got MS, I am not a neurologist.

I am fortunate as living in the UK my MRI would be free, however, I did pay as the waiting list for one was 6 months in my area, and like you I wanted answers.

Firstly if you can I would just check your blood sugar levels to eliminate the possibility of diabetes as this would be the cheapest option.

If clear, then definately go for your MRI, you need answers for your own peace of mind.

MS is a strange and variable disease and it affects everyone differently. You could have benign MS which never really evolves. An MRI by the way is not conclusive even if there are lesions showing on it. MRIs can be clear but later MS can be diagnosed its a very difficult disease to pin down.

I know its easy for me to say, but if you can try not to worry to much. I have been ill for 2 years with no firm diagnoses as yet, i am disabled but just get on with life. I have a working diagnoses of Myelitis possible MS. Even with positive test results according to the McDonald criteria for diagnoses I havent quite got there yet.

Forums are great places to share, I have belonged to one in the UK for 2 years, and they have kept me sane when i feel down.

When will you have your MRI?

Try and have a lovely weekend, worry about it all on Monday LOL. Maria

[OllieO]

Thank you for your responses.  It is nice to be able to "talk" to people who understand.  I obviously don't want to have MS, but I would like to connect the dots.  I feel the frustration of those of you who have been in limboland for so long.  If my head MRI does not show any lesions I may sit back and wait to see if my symptoms progress. I have spent the last 6 weeks thinking about MS and I really want to move on and think about something else.  It would be an easy thing to do if only my leg would stop tingling and if I could stop dropping everything!!  My son (who is a clutz like me) and I have a competition going on to see who can break the most drinking glasses.  We are almost in need of a new set!

Have a great weekend everyone!  My prayers are with you.

OllieO

[Quixotic1]

In the context of MS it is important to know that a CT scan is NOT at all adequate to visualize MS lesions.  It never was useful and is considered inappropriate if MS is being considered.

Quix

[Sarahsmom46]

Please seriously consider going ahead with your MIR!  Why?  Because there's only one YOU and YOU are worth the expense.  As for the MRI, having one can be a valuable piece of information that can help your doctor help you.  

On a personal not...I felt the same way you do about these expense of this technology and even quibbled with my neuro about having a head MRI considering my head CT results were fine.  She told me she wanted to do it because she needed to make sure that she wasn't missing anything.  Well, come to find out there was a little something that showed up.  Not a huge deal, but it was another piece in this complicated puzzle.  So, my dear, please seriously consider just going for it.  I hope all goes well for you.

Julie

[Quixotic1]

Whatever you do, do NOT cancel the MRI!  There is not a shortage of MRI capability in this country like there is in poorer places.  You will not be preventing someone else from getting one!

And you are important!  Just because other people might be worse off does not invalidate your discomfort and suffering.

Lol, yes, we all know the "obsessing" about MS.  I think it is inescapable when we finally realize that MS may be the answer.  I do think that those who are not losing function in their bodies or having nerves everywhere "spaz out" may not understand this preoccupation.  To them it may look like we are being hypochondriacs.  That is just why it is so important to have a place like this where we can express ourselves and ask our questions and get good answers.  You are in Limboland without a reason for what is happening to you.  You wonder about your future and everything you have always assumed about your life.  Who wouldn't obsess?!!

The weakness in my right arm has been that slow.  First it was just when I had used it alot, it would occasionally feel really weak.  But my exam was normal.  4 months later I told the neurologist that it was definitely more weak and sometimes my left arm.  This time the exam showed mild weakness in the right, the left was fine.  Now, after a lot of typing sometimes my right hand becomes useless and won't reach for the keys at all, but is okay in the morning.  But, my exam in between times is not worsening.  So, in that sense, I have had a very slow progression of a single symptom.

I have heard others here describe that their tingling or numbness gradually grew or expanded in area.

Never feel your symptoms are not worthy.  We all deserve to feel well and whole.

Quix

[floridamom2]

I agree with Tammy & cat1203.  You need to get the MRI.  I think the thing that is the hardest for those of us undiagnosed is the constant questioning whether this is really what people w/ MS go through.  

The fact is everyone w/ MS or any other neurological condition for that matter has their own path of symptoms and some times it is severe and sometimes it is not.  If it is effecting your life and you need answers then keep searching.  I have tried to say "well Mary has MS and she walks w/ a cane and has Optic neuritis but I don't so it must be nothing".  Reality is I am suffering and need to stop the progression of whatever is causing my symptoms,  MS or not.  Hang in there and I will be praying that you get answers soon.

Hugs!
Kristin

[cat1203]

i had it for years before they decided to do an mri.  they found out i had ms, temporal arteritis, and vasculitis.  I also have mg because i have no immune system.  good luck and make sure you get it.  sometimes it won't show up if it is in remission.  

[wingnut19]

Hi

Please don't cancel your MRI just because other people are going through what you consider to be way more than you!  
You should always look out for yourself no matter what....If there is something not right with you then you should definitely try your best to get to the bottom of it.....


I hope you feel better soon!  :)

Tammy