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654901 tn?1293671265

Does this sounds like MS symptoms?

Hi,
It hasnt been too long ago that I posted questions on optic neuritis. I ve had three bad episodes of ON, but MRI negative. So, I am in limbo with this. Today, I was outside at a childs birthday party, under a carport, but still very hot. After an hour, I started having increase blurriness in right eye. I have been having pain from my neck to my toes since December on and off. It is very painful, tingling, and I am weak only on that side. Well, today, I has having this problem, but while being totally heated at the party, I started feeling this worse...And then I started feeling like a big bug was crawling up my head and started getting chills only up my neck and face....left side only. I then became weak and I did not feel good the rest of today. It has been hours since the party, and I still dont feel good. The doctors had thought in 2005 my pain in the left leg was from damaged nerves due to two back surgeries,,,and it may be. The pain in my left arm started in Dec. 09 and it got worse, going from my arm to shoulder to neck to face down into my hands. The MRI didnt show any nerve problems, but did say that I had a very small spur and arthritis...Mild. It took months for this too settle down. I took prednisone, injections into the shoulder, and PT with topical steroids heated into it. Now, it is back again, but with a few new symptoms. What do you all think about this combines?  Does any of this make sense to you?

Thanks again,
Becky
8 Responses
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562511 tn?1285904160
Hi.  Your description about one of your symptoms made me laugh (sorry) :-)   "And then I started feeling like a big bug was crawling up my head and started getting chills only up my neck and face"      

I think it was a good thing that my initial diagnosing neurologist was a psychiatrist too.  He didn't think I was nuts as I described my symptoms.   Most of those symptoms were sensory and I had some weird sensations going on. One of them was similar to yours with the "chills" on my scalp.

I'm glad to hear that your neurologist is referring you to an optho-neuro.  The episodes of optic neuritis should be investigated further.  

Stay cool and keep us posted.    
Helpful - 0
405614 tn?1329144114
Julie gave you great advice, and I'm glad you're seeing a neuro that listens and is willing to look for answers.

I saw a great neuro-ophthalmologist who ran a lot of tests; 4 hours one day, and a shorter one on another day.  My results were pretty much normal, but then, I just have blurred visiion; never had ON.  There are great tests that can pick up damage done that isn't readily noticeable on a normal exam.

I have a file of all my test results, and it sure is helpful!  I also get chart notes from my doctor's visits, so I have a record of what they said.

I have a Timeline of Symptoms in my journals if you would like to go take a look. I've tried to keep track of odd symptoms, if they happen after a virus or infection, etc.  My memory isn't that great, so it helps me when a doctor asks "When did you first experience a bout of dizziness?", I'll remember because I have it in writing.  I also give a copy to my neurologist.

Actually, I haven't updated my timeline in quite a while, so I should thank you for reminding me!  I've been dealing with lots of dizziness (even going to a special kind of physical therapy for it) and fatigue, pain, and other stuff that has distracted me from keeping it updated.

I see my new MS Specialist in September, so I have time to update it, but if I don't get started, I'm bound to forget something.  Oh, I've found that if I forget something, I can look it up in my old posts here on the forum.  This forum is great for so many reasons!

Stay cool,

Kathy
Helpful - 0
654901 tn?1293671265
I started writing, but my new computer done something with what I was writing.
That is a good idea about putting a timeline to each test and keeping up with everything. I will forget in a few months, if all this test keep coming!
How did your car shopping go?
It is so hot here that I have stayed in except to let the dog out to potty.
Wish you the best also and thanks,
becky
Helpful - 0
559187 tn?1330782856
It sounds like to me that you have this under control and are making the right decisions on how to proceed.  You also seem to have a good neuro, no matter his specialty.  If he is seeing MS patients, then he has more experience that a lot of other neuros who may never come across or even want to deal with MS patients.

Seeing the neuro-opth is a great idea.  You can learn a lot from them and their evaluation can be very beneficial with putting this puzzle together.  When is the appointment?  

Keep plugging away and you'll get answers hopefully sooner than later.  

One more thing.. If you aren't already doing so, start a medical file with copies of all the tests they've done with results, labs, progress notes, etc.  And, if you haven't done a timeline of your symptoms, it would be very worthwhile to start working on one.  There is a health page that talks about timelines if you don't know how to get started.  

Wishing you the best.

Julie
Helpful - 0
654901 tn?1293671265
Hi, Good morning, I do feel better this morning. All the weird sx have gone! Well, I mean the chills and bugs crawling feeling up my left side of head. I think it was the heat for sure. I am going to call my neuro that I see and have him work me up for MS. I need to know. My local eye doc thought I needed to be worked up and sent me to a neuro-opth and she basically done nothing.
My neuro doesnt specialize in MS but does treat MS patients. His speciality is one of the other diseases that I cant remember. I did call his office a few weeks ago, and he wants me to see their neuro opth and then him. It has been a year since I saw him. It will take a couple of months, but I will see the neuro opth he has refferred me to in July.

After I posted last night, I read about heat and MS, and that sounded like me yesterday. It is like you have been drugged! I didnt enjoy this feeling and I will not be out in this hot weather again....well, not like yesterday! It was 93 under the carport. Even if I dont have MS, I cant stand the heat anymore.

My head pain is better also. I can tell this is neurological and something needs to be determined.

Thanks for all the help,
Becky
Helpful - 0
559187 tn?1330782856
The symptoms of heat intolerance generally go away with rest and being in a cooler place. Some people say the symptoms should resolve overa few hours, but it is possible they could linger for a day or more.  

I'm not sure what to tell you about the continuing head pain.  Is it better this morning?  

These are definitely things you need to touch bases with your neurologist about.  Are you seeing a general neuro?  

Interestingly enough, the nerve conduction test or EMG/NCV is usually normal in patients with MS.  It is the other conduction tests that are usually abnormal or borderline.  

I think it is probably time to ask your doctor directly about the possiblility of MS and perhaps go ahead and work you up for MS.  That is the only way you both will know if this diagnosis should be pursued to explain your symptoms.  

I sure hope you can get an appointment very soon with this doctor as it soundsl ike you need another evaluation.  

Take good care and let us know how you are doing.  Also stay out of the heat :)

Julie
Helpful - 0
654901 tn?1293671265
Thanks, I think the news symptoms were from heat intolerance also. I didnt notice any changes with colors. Both eye doctors say that my otpic nerve is inflammed, but one says he thinks it could be MS and the other says doesnt think so. You know, wait and see....followups!!!

I have never felt like this when hot, but I usually dont push the heat either. Right now, I have a chill that goes from the left side of my neck to the top of my head....episodes......and then go away. Should I still be having this due to heat?

I have taken tylenol and ibuprofen and nothing is cutting this pain and weakness  in this area. I quess I really over done it today!

And I really need to see my neuro for all of this new stuff. I first went to him for my sciatia nerve pain. He said then, about one year ago, that the nerve con. test was abnormal, but we have never suppected MS.
Thanks,
becky
Helpful - 0
559187 tn?1330782856
The symptoms you describe sound very familiar as heat intolerance.  

You mentioned your eye getting blurry and the parathesias in your head. This could be something someone with MS might experience.  It does sound neurological for sure.  Now whether this is related to your prior back surgeries is something your neurosurgeoin would have to weigh in on.  

Did you have other visual symptoms along with the blurriness for example did you notice if things got dimmer or colors looked different?  Did you ever get a diagnosis of optic neuritis form your previous eye issues?  I have a friend who gets blurry vision when she takes a hot shower, so it stands to reason that this happens in the outdoor heat.

I experience heat intolerance as well, but it is more about weakness and absolute fatigue. It affects my legs the most and causes me to feel as if I am walking through quicksand with concrete blocks tied to my feet.  

I hope you are feeling better and take it easy in the heat while you sort out what is going on with you MS or something else.  Heat can take you down very quickly as you had already experienced today.  

Take care of yourself.  

Julie
Helpful - 0
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