why is M.s. so hard to diagnose?

[lori115]

for the last yr i  have had really scary and weird symptoms. the first initial experience was at work. off balance nauseated and right sided pulsating and tingling and walking funny all on right side. slurred speech as well. it started out once every 3 wks give or take. moved to every 2nd week and now it is every few days but the last 6 mths it has gone through out my body. most concerns are bottom from the waist down. severe tremors when i am sleeping and pulsating and twitching and very weak muscles.sometimes i can barely walk. neurologists call it a gate walk. slurred speech sometimes too. inbetween these episodes( i will call them that) i get severe eye pain. off balance. memory issues. blotchy vision, double vision sometimes and sore muscles as well sometimes i have left ear pain. very fatigued i sleep anywhere from 2 -3 hrs aday and go to sleep early at night. no diagnosis yet but some ideas of what i got sure would be nice. i have thought M.S. for the last yr but noone wants to diagnose me.


This discussion is related to How severe of MS?.

[lori115]

hey sorry i didn't reply right a way i am new at this so it took me a bit. my episodes first started about 2-5 days then i'd be okay for 3 weeks then it started happening every 2 weeks down to every week. now after a yr i feel something everyday, whether its eye pain or troulble swallowing or off balance or dizziness or sometimes brain fog trouble comprehending. in the last 3 mths i have had continueing pulsating and twitching from the waist down and tremors when i sleep. each episode time line is so different sometimes its a day or up to 8 days. so each episode for me varies. i feel it is not always consistant. take care and i hope this helps.

[lori115]

i wish i had a copy of the video tape that is a good thing to ask. i should see if i can get a copy of it. It is righfully mine. that is a good idea. i have been through 4 different neurologists in edmonton . apparently the U of A was suppose to be the place where they figure out weird symptoms and puzzle it together. unfortunately again.... not much support as of right now he said for it to be neurological the symptoms don't come and go they will just stay. not like i am buying that. thanks though i am going to keep on fighting and i thanks for your amazing words they only make me stronger. you as well take care and have a great day.

[Quixotic1]

Lori - how long does it take to run through one of your episodes?  I am trying to get a handle on what you are describing for us.

And welcome to the forum.

Quix

[tonyad]

   Again,You have an amazing attitude. I admire your perseverance.
Not quite sure where these dotors are coming from. Do you have actual
posession of that tape or can you get a copy of it?  

   Are you currently NOW seeing an MS Specialist or a Neuro? Or, are you waiting for the docs at Uof A (is thatwhere you said it was? Sorry for having to ask again)?
if you are waiting for them......well, you very well may be waiting for a very long time!
that's why it is always best to take matters in to your own hands.

    You being as strong minded and as strong willed as you are, I feel that you are going
to let NO grass under your feet :)  When you are talking with the NMSS, you may ask for a couple of referral to an MS Specialist in or near your area. hey, even if you have to make a small road trip.....May be worth it.

    Just wanted to add that I am glad that you have a good support person (your hubby)   for you to go through this journey with. It certainly makes a big defference than doing it solo.

    Hope to hear good news soon of an upcoming appt. or something ;)
Have a GREAT day and even BETTER tomorrow.
~Tonya

[lori115]

thanks, this is an amazing website, i am glad i stumbled across it. yes, i have seen 3 neurologists and the 4th was at the u of a. he said for it to be neurological the symptoms won't come and go. so basically i asked what are you waiting for me to be in a wheelchair??? this is crazy.  they video taped me as i was going thropugh my episode while i was there. i could barely walk, and i had full slurred speech. they said they would send it to other neurologists for investigation. he basically told me to seek a social worker to help me at home. my husband and i are so frustrated.I also seen an intern medicine dr. she thought seizures, my heart valve, inner ear problems, or M.S. it's funny everything else has been ruled out. Physio thinks it looks like m.S. and the eye surgeon i seen pulled up my M.R.I. and said this looks like early stages of M.S. as my eye test at the time also revealed double vision and i also had severe eye pain. so why is it that the people that are not specialists in neurology come to that idea but the neurologists won't. I am a big fighter and i am still demanding answers and i also have decided to talk to the M.S. society and see what they have to say. I also have been seeing a naturopath, and i am taking tonnes of stuff and it seems to help but again doesn't take things away.  her conclusion was an auto immune disease but she won't confirm which one. so i just take it day by day and i will continue to stay strong and regardless of what i eventually get diagnosed with, i will be able to handle. at least no matter what it is it cannot take my personality away or my love for life. things could always be worse and i live each day to the best. i say to people i may look funny sometimes but the inside of me and who i am matters most! thanks so much for writing to me. all the best.

[tonyad]

  Welcome to the Forum.
Your story sounds so familiar to many on this board and ones that I know personally through my Local support group.  

    You have an AWESOME attitude!  You know your body better than anone and what is normal for you and what is not!  so you are correct in that 'giving Up' is not an option.
please remember that we are all her for you when you have questions, or just need someone to talk to who has walked in your shoes.

     Hope you get answers soon. Just wondering...Have you seeked out a different Neuro, or MS Specialist?  ALso, keeping some kind of "Time Line" of what sx you have and when as well as the testing you have had done as well as the results will be quite helpful when you find a doctor who will listen to you.

~Tonya

[lori115]

thankyou so much for your feed back. yes they did tell me that it was all in my head no dr.'s believed in me for 8mths. sent me to a phyciatrist who put me on anxiety meds. finally i got so sick of the way i was treated i stormed in there when i was having my episode. the phyciatrist was in total shock!!!! needless to say back to emerg he sent me as the phyciatrist thought it was ishemic attacks. checked out all negative heart is fine and the dr. in emerg sent me home all slurred speech, walking gait and all. he said he didn;t know what was wrong and to go home. i have been treated horribly but i  have never stopped believing in myself, nor will i ever. i am going to physio therapy once a week starting this week as he is totally on my side. that way to i still have an on going record. i wouldn't be so worried if i just knew exactly what it is so i can get on with healing . The unknown is what *****. thanks again for your response and taking the time to reply, all the best, sincerely, Lori

[Lulu54]

Hi Lori,
You have asked the million dollar question.  It is not a diagnosis to be given lightly, and there are many diseases that mimic this MiSerable one.  Once you have this diagnosis, everything changes for a person, so the doctors must be reasonably sure of what they are saying.

The diagnosis criteria (McDonald) may sound complicated but it gives lots of leeway and options for a confident doctor to base a positivie diagnosis on using clinical observations and test results. The trouble can be finding the confident neuro.

Treating this MySterious disease can be costly - the drugs used are very expensive and in the case of people in the UK and Canada, it appears money and budgets are also a factor.  

How we walk is our gait.  What your doctors are looking at in your gait are any abnormalities in how your feet, legs, hips all move to propel your body.  These can come from a physical problem such as sciatic nerve problems or weak muscles.  An abnormal gait can also be caused by MS - the signals are not being sent properly for the muscles to work in a smooth manner.

It sounds like your neuros are looking at your symptoms as being real - so many women are told its all in their head - and I'm glad they are continuing to run tests. Everything you describe could be neurological and you deserve some answers.  

I hope you'll come around often and ask all the questions you need or vent some too.

Be well, Lulu