If its not MS, what is it?

[foster77s]

I had some crazy neuro symptoms about 4 1/2 years ago.  Had brain MRI which showed 2 abnormal areas/lesions.  It all started with crazy elevations in blood pressure and then turned to neuro symptoms.  My primary doc said he thought it was suspicious for early MS.  I soon after got pregnant and all symptoms went away.  About a year later I saw a neurologist due to numbness in my hands and some other symptoms.  He said he thought I had aspartame toxicity.  Also that would be consistent with the no syptoms during pregnancy as I stopped drinking aspartame products immediately.  On and off over the past 4 years I have had minor s&s of MS.  In the begiinning of October it all started again but alot more fierce.  It again started with crazy high blood pressure.  I was seen in the ER twice.  Had an MRI of brain for neuro S&S and was told that I now have a new area of lesion in the corpus collosum area that are flame shaped which is consistent with MS.  I started with muscle spasms in my left foot and calf, left top of hand.  Then a feeling of ice/burning in Left leg, left foot, neck amd head.  Now the burning/ice feeling is all over my body intermittently throughout everyday.  My spasms are now on the right arm, leg and left leg.  My spinal tap from beginning of November is negative.  My neurologist based on that will not treat me for MS even though I feel I meet the criteria.  Honestly it is more scary to me at this point if it isnt MS...then we are really missing something here cause this is far from normal.  I at one point a few weeks ago lost a moment at work where I ended up on floor without explanation.  I havent worked since.  I have an appointment at an MS clininc on December 17th.  Meanwhile I fear losing my job and also I feel terrible.  I am so exhausted I am not coping wiht activities of daily living.  I am a single mom of a 6 year old.  While I was working I could barely take care of her in the evenings after work for several weeks.  I stopped taking tegretol(they prescribed for burning feeling) and stopped the baclofen casue it made me doppy.  I am taking flexeril as needed instead.  I am on my second round of prednisone and now tapering the symptoms are getting worse.  I went to a new neurologist last week  who ordered an MRI of the T&C spine to check for lesions.  He also said I am an "MS suspect" but would not consider treating at this time.  I feel like I am losing my mind and everyone thinks I am crazy.  Can someone lend some advise?  

[foster77s]

Thanks .  You are right, I do have a hard time asking for help.  I need to work on that one!

The new neurologist secretary also said that I already have an appointment for the MRI tomorrow, what else could they do?  My response was I felt my symptoms could be managed better and that I feel pressured to return to work.  

I called again today because work needs him to sign that I can drive safely.  I again explained to the secretary my concern about returning to work.  I absolutely do not feel I am ready for a full day-I poop out after 6-8 hours of anything.  By the time I get to work I already have two hours in.  Then when I get home I have my daughter and house to take care of.  She said she understood what I was saying but again reminded me I have a follow up appt with him on the 13th.  Thats 2 weeks away!!  errrrrrr  Very frustrated!!

Again, thanks for your words of hope and wisdom!

[wiggles94]

Hi foster77s -

Well, it sounds like you are not liking this new neurologist, so fire him and keep looking until you find someone who will listen and take you seriously.

If the best he has to offer is "stay on your antidepressants", then he's lazy.  Did he offer anything else? Like an appointment to come in and discuss where you could go from here to move forward, and help manage your symptoms of fatigue, etc?

Could you get in for a visit with your GP to help manage your symptoms until you have your appt at the MS clinic on the 17th?

I have to say - I went for s 2nd opinion, and after careful consideration, felt this neuro (even though he is an MS specialist) was not for me.  A lot of what he told me didn't make sense to me (I have done SO much research) and he didn't really want to hear what I was experiencing - just interested in fitting me perfectly into the MS BOX - and I don't fit so neatly.  My first neuro is treating me for MS so I am staying with him....but I guess my point to you is this:

WE are consumers, and as such we have the right to make sure we let those who are working for us know when we are not satisified.  SO I sent my 2nd opinion doc an e mail and very respectfully let him know why I was not going to be staying with him.  If we never let these people know how they affect us, how will they ever learn?  Sure - some of them won't care and change, but there are always those who may.  He sent me back a very nice e mail and "got" it.  Of course you don't want to burn bridges - but you need to be honest.
It is an empowering feeling, and gives a sense of control -when so many things are out of control.  

I know your plate is full and I don't mean to tell you what you should and should not do, - the time has to be right and you have to feel strong - but I hope you can find a provider who will give you the time, attention and care you need and deserve.

Your last line - "again, he could care less," is the opposite of how someone who is caring for you should make you feel.  Being a nurse, you know the importance of compassionate care, and know that everyone deserves that.

As far as caring for you daughter, do you have family/friends who you could reach out to and who could help you through this tough time?  I'm thinking that since you're a nurse, you are used to taking care of everyone else, and don't like asking for help for yourself?    Time for others to take care of you.

Feel better - take a deep breath and keep us posted.  There are many here who CARE A LOT!

[foster77s]

Wiggles-

I stopped using aspartame 3 years ago, except what is in gum.  This past month I have used some drinks with aspartame since I dont think thats the problem anymore.

Tests-I have had brain CT, MRI's brain (with lesions), lab work (pretty normal), LP (negative).  

I called the new neurologist yesterday (not the MS specialist) and his response to me not feeling well was "continue on your antidepressants".  Its like no one really cares that I cannot complete a full day.  And depressed?  Yep...BECAUSE of the way I feel.  I am a nurse so this is so insulting me.  Its like no one thinks these symptoms are credible or disabling.


I feel pressured to return to work on Friday.  I know I am not going to be able to take care of my daughter after a full day at the office.  Again, he could care less.

[Nancy T]

Not throughout my body, but I think I know what you're talking about (the ice/burning sensation). I used to get a sensation (can't remember where now!! I've had so many weird paresthesias--but I think on a foot or hand, mainly) that was like that feeling you have in the nanosecond between touching something that's burning hot or freezing cold, and for a split second you don't know which it is, but you know you've made a biiig mistake!

In other words, it feels like the hot or cold sensation has reached your brain, but your brain hasn't yet decided which one it is. It's a very weird but also very distinct sensation.

Good luck--hope you get a diagnosis and help.

Nancy T. (not diagnosed)

[foster77s]

Thanks Barbara.  My labs are pretty normal

[babbs620]

HI i HAVENT BEEN DX WITH MS, BUT I DO HAVE ICY HAND AND BOTH FEET AND SOMETHIMES ICE SPOTS, MY DR TOLD ME THAT IT SEPARATE FROM THE NEURO ISSUES THAT THE COLD SPOTS ARE FROM MY THYROID BEING OUTTA WHACK AGAIN, i DONT KNOW IF YOU HAVE THYRIOD PROBLEMS BUT IT CAUSES COLD SPOTS.   THANKS AND GOOD LUCK BARBARA

[foster77s]

Thanks for the feedback guys!  Does anyone else have an ice/burning sensation throughout their body?  Kinda of like a bengay feeling.

[jumpinjiminy]

Hi Foster. There are other possibilities, but the MRI showing lesions is a start. My MRI showed nothing, neither brain nor c-spine. In my case, which came on and spread through almost my whole body within a month, they've finally found some antibodies that point to a more treatable and controllable autoimmune disease. It was sort of a relief to hear of this other possibility, to be honest. But I'm still in limbo because not all the pieces are there yet for this diagnosis either. No dx, no treatment. It's a very scary and frustrating place to be. Best wishes to you on getting some answers. It can be a long road.

So sorry for everything you're going through.

[jensequitur]

To be honest, you do sound suspicious for MS.  As Wiggles said, you can have a negative spinal tap and have MS.  

It sounds like you're with the right neurologist, but he may not understand that your symptoms have relapsed and remitted - in other words, gotten better and then gotten worse.  I would recommend (if you haven't already) writing a timeline of your symptoms, including when it happened, and time it took for the symptom to go away.

>  He said he thought I had aspartame toxicity.  Also that would be consistent with the no syptoms during pregnancy as I stopped drinking aspartame products immediately.  

This neuro that thought you had aspartame toxicity - stay far away from him/her.  They have found no correlation between neurological symptoms and aspartame.

http://www.acsh.org/healthissues/newsID.265/healthissue_detail.asp

[wiggles94]

PS - you can have negative spinal tap and still have MS>

[wiggles94]

Hi and so sorry for what you are going through.

It sounds like you are doing the right thing by going to an MS specialist.

Being dx with MS can take a long time, and many things can mimic - so docs need to rule out other diseases.  There is no definitive test for MS.  

Have docs ruled out other mimics?  What other tests have you had done?

Sorry - but I never heard a neuro dx someone with aspartame toxicity so I can't speak to that.  Do you still use a lot of aspartame?

I think that all that you are feeling right now is very normal, given what you are going through.  Keep a good list of all your symptoms, and push push push to get what you need.  Sometimes it's easy to let others make us feel we are "crazy" when these things happen to us, but take yourself seriously.  Not only do you have the right to have docs help you, but you have an obligation to your daughter to get to the bottom of what is going on.  

If your docs don't listen, or don't give you answers, then switch docs.  I hope that your visit to the MS clinic in December will help you move forward in getting help for your problems.

This dx process for MS can be emotionally draining.  It can take a long time and involve lots of appointments.  There are many docs who will treat someone who is "possible MS" (I am in that category) with disease modifying drugs - to lessen exacerbations, and try and stall conversion to clinically definitive MS.  BUT you are right in thinking that you don't want the docs to miss what is going on with you by just jumping to an MS dx.  But it doesn't sound like they are doing that.

Best of luck to you and keep us posted.  There are so many helpful people on this site who understand what you are going through.

Suggestion - when posting, break up your paragraphs as some have difficulty reading print when it's all together.  The white space breaks make it easier to read.