Do you think I may have MS?

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wilma
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Date Joined Apr 2011
Total Posts : 15
   Posted 4/12/2011 7:19 AM (GMT -6)   
I recently had a MRI of the spine, and brain. They report came back with multiple lesions on brain, and spine. I have to get a Lumbar Puncture done next week. Does this conclude that I have MS. I have itching, and burning all over my body. My Neurologist has stated that the places that I am burning, and itching is not symptoms of MS. I am miserabe. The burning is excruciating. Someone please help me.

fitgal
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Date Joined Mar 2011
Total Posts : 157
   Posted 4/12/2011 7:17 PM (GMT -6)   

So, so strange - I had the brain and cervical spine MRI a couple of weeks ago and they found "several indeterminate periventricular lesions."  I have only spoken to my neuro on the phone since the MRI and they sent the results of the test in the mail.  My neuro is moving back to the west coast so I am waiting to see the new one - not until the 26th. 

 

What are your other symptoms?  You mentioned burning and itching.


wilma
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Date Joined Apr 2011
Total Posts : 15
   Posted 4/13/2011 12:46 PM (GMT -6)   
Thank you for your response. It is greatly appreciated. My other symptoms are problems with my bowels. I have urgency to urinate quite frequently. I sometimes make it to the bathroom, and sometimes I don't. I have numbness in fingers, and hands. I am off balanced. I can not close my eyes in the shower. or I will fall over. I have problems breathing.I can barely walk. I fall down often lately. I have muscle spasms in my legs, along with  swelling, and joint pain. I have problems concentrating. My sight is not very good anymore, and I am very weak. Hopefully you, and I can find out what is wrong with us soon.  ttyl :-)

Post Edited (wilma) : 4/13/2011 1:16:37 PM (GMT-6)


fitgal
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Date Joined Mar 2011
Total Posts : 157
   Posted 4/13/2011 2:21 PM (GMT -6)   
Wow - problems with your bowels too? I am having a total colectomy on May 13th. I seem to have most of the same issues as you. I don't fall down but often sometimes I feel like I'm about to trip over something then realize there was nothing there, practically causing myself to stumble. I don't mean how you sometimes trip of the flat carpet and hope nobody saw. Do you know what i mean?

The other night I was showering and while washing my hair I noticed that I had a tender spot above/behind my left ear. While washing my hair and face I started seeing stars, like glitter. I thought it was because I closed my eyes tightly but then remembered the tender spot and pressed lightly on it - there was the glitter again. I was able to do it a couple of times but kind of freaked out and stopped.

I have notices some spelling problems too - not really spelling, but writing or typing. I write or type then when re-reading it I notice I have made many mistakes. Make sense?

strange...

twingirl
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Date Joined Feb 2007
Total Posts : 323
   Posted 4/13/2011 6:04 PM (GMT -6)   
Wilma, most of your symptoms sound like MS except the joint pain. Joint pain and all your symptoms can be symptoms of lyme disease. Most neurologists will give you a western blot to rule out lyme disease before giving you an MS diagnosis. I have a friend with lyme disease who has almost all of your symptoms including falling when closing her eyes. The symptoms get better when treating lyme, but it can take a long time.

fitgal
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Date Joined Mar 2011
Total Posts : 157
   Posted 4/13/2011 6:35 PM (GMT -6)   
good point twingirl, they included the lyme disease test on my blood panel. I was surprised I had any left that day after they drew eleven tubes of blood.

wilma
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Date Joined Apr 2011
Total Posts : 15
   Posted 4/14/2011 6:30 PM (GMT -6)   
Thank you twingirl,but I have already been tested for Lyme Antibodies by my Neurologist. My test were fine. He did the blood panel, and everything was fine. I understand what you mean ftgal about stumbling on a flat carpet. I stumble all day. I was prescribed a cane, and I still stumble. I am 43 yrs old, and I feel like I am 90 yrs old. I believe my Neurologist is heading in the right direction. I am genuinely a nice person, but lately I have found myself getting very angry. I was so Independent in the past, and now I feel so helpless. I try to stay positive, but some days I break down, and cry. My emotions are starting to get the best of me. I know that I am not the first person, who has had to deal with an illness. I never thought that I would have to deal with this so soon. I am greatful for the support that I have, but in the back of my mind...I wonder if I have become a burden to my family. This makes me very sad.

fitgal
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Date Joined Mar 2011
Total Posts : 157
   Posted 4/15/2011 5:50 PM (GMT -6)   
Wilma,
In what part of the country do you live? 

wilma
New Member


Date Joined Apr 2011
Total Posts : 15
   Posted 4/16/2011 6:13 PM (GMT -6)   
I live in the South. I was born, and raised in the North.

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted 4/16/2011 6:39 PM (GMT -6)   
just wondered - i didn't know if that was your real name (Wilma). I have a friend, same age, named Wilma in California.

When do you see the neurologist again?

I am anxiously awaiting my appt. on the 26th. I wish I could have had the workup before the 26th because i am having a total colectomy on the 13th of May and i won't have that much time in between the two dates.

I know you may have said this already but how long has this been going on? I had actually gone to a neurologist in CA just before moving to the East Coast. This was in 2004. He said he wanted to do the work up back then but I was moving the following week. He said to have the doctor contact him, which never happened. I saw a neuro. at my first stop on my move and he changed my meds and i had a bad reaction. He changed me to lamictal (orig. was on neurontin, then topomax but that was not good), which I have been on since then. I went to a neurologist in my current state and he gave me shots - I went twice before realizing this was ridiculous and stopped going. I made an appt. w/my pcp this past January after having facial pain. I had actually gone to the dentist in December thinking it was my teeth. My doctor (actually his colleague) sent me to the neurologist for possible trigeminal neuralgia. Here, all this time, a doctor other than my own, sends me for this and I end up getting the tests that my original doctor wanted seven years ago.

If it turns out to be MS, I am more than really pissed off for the care to not have started way back then. I don't think I worded all of that correctly, but you get my point.

Bedtime - g'night.

wilma
New Member


Date Joined Apr 2011
Total Posts : 15
   Posted 4/18/2011 7:29 AM (GMT -6)   
My symptoms started as early as 2005. I started seeing the Neurologist for twitching in face, My mouth would twist over like I was having a stroke. When this occurred. I would stare, but I could not move. The Neurologist thought I was having seizures. He Did a MRI of the brain, and nothhing was found. Those episodes would last approximately 1-2 minutes, and I would experience them up to 20-30 a day, and one day it just stopped. I haven't had any more of those episodes since. In March 0f 2011 I had a MRI of the brain, and they found Lesions. I have an appointment with my Neurologist Thursday. I can definitely understand your frustration. MS is so hard to diagnose that we all unfortunately have to go through a bunch of bull. I am going for the Lumbar Puncture tomorrow, I feel like we are getting closer to a diagnoses. By the way my real name is Lisa..ttyl

dennabelle
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Date Joined Apr 2011
Total Posts : 5
   Posted 4/18/2011 4:49 PM (GMT -6)   
Lisa the Lumbar Puncture should be a definite answer. I have MS but never have done that. Good luck on your spinal tap!!

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted 4/18/2011 7:23 PM (GMT -6)   
Good luck to you Lisa!  I'm anxious to hear back from you tomorrow if you are feeling up to it.  You'll have to gve me a heads up on the pain - I envision the epidural needle and pain.  Please tell me it isn't.  Of course when you are in labor your dealing with multiple pains so maybe it won't be like that. 
 
I'll be thinking about you smilewinkgrin

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted 4/19/2011 10:10 PM (GMT -6)   
Lisa - how was your test today?

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted Yesterday 11:21 AM (GMT -6)   
Lisa, I'm a little worried that you haven't responded since your lumbar puncture. How is everything?
nanci

wilma
New Member


Date Joined Apr 2011
Total Posts : 15
   Posted Yesterday 1:51 PM (GMT -6)   
Thank you for your concern. I had to rest for 24 hrs. I was told to lie down flat, and don't get up until I had to use the restroom, or eat. The Lumbar Puncture was awful, and I hope that I never have to experience one of those again. I hope they found what they are looking for, because I refuse to do another Lumbar Pucture.

dennabelle
New Member


Date Joined Apr 2011
Total Posts : 5
   Posted Yesterday 9:42 PM (GMT -6)   
Yep if you dont lie flat the hole doesnt close therefore you leak fluid and have this terrible headache. This happen to me for a weekend and they wouldnt do a bloodpatch until Monday morning. I agree they are aweful...

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted Today 7:44 AM (GMT -6)   
Now I'm worried about it. I'm sorry it was so painful for you. When should you know your results?

I tried to move my neuro appt up to this week from the 26th but they didn't have anything. I need to get the workup done before my surgery but I'm not so sure if that will happen.

i hope you are feeling ebtter soon.

samantha0629
New Member


Date Joined Apr 2011
Total Posts : 3
   Posted 4/22/2011 4:54 PM (GMT -6)   
I am new to the forum..i was just wondering if i could possibly have MS..i am 22 years old and i have 2 children, a 3 year old girl and a 1 year old boy. I have had parts of my head go numb, just a small area, and i get dizzy out of nowhere. I feel little pricks and pinches in my body and stinging and burning in my head. I have had a CAT scan done about 3 months ago to see where my headaches were coming from and they said the scan was normal and all blood tests were normal. I sometimes lose balance but I have always been clumsy, even as a child I would fall on air. I fell tingling and numbness in my arms and legs from time to time as well. I do have anxiety disorder so I'm not sure if that could cause my problems. I have been told by family that I'm just a hypochondriac but I believe it is something more. I just would like some opinions and answers. I do have an MRI scheduled for June 9th just to be safe, but I'm just not sure if it is my anxiety or if it's something else..I would appreciate some insight and opinions :) Thank you

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted 4/23/2011 3:25 AM (GMT -6)   
Lisa - I hope you are feeling better now. Not sure if you have kids but if so, there's not much time to lie flat. Mom, I need this, I need that...

Samantha - I'm in the dark still waiting to find out what's going on in my own body. I know June 9th is a long time to waith but you'll need that since I don't think a CT scan shows lesions; only the MRI.

To all, have a nice Easter!

wilma
New Member


Date Joined Apr 2011
Total Posts : 15
   Posted 4/23/2011 10:12 PM (GMT -6)   
Fitgal- Happy Easter as well. I am feeling a little better. I am 43 yrs of age. My children are all grown up. It seems like yesterday that they were infants. I am so glad that this didn't start when they were younger. I still have the hubby ,who I believe is in denial, and having a hard time dealing with me being sick. Don't get me wrong. I know that he loves me. He just needs more time to adjust.

Samantha- I hope that you find out soon what is wrong with you. I am not sure what is going on with you, but it does not sound like it is just a case of anxiety. Good luck, and Happy Easter... Please keep us posted.

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted 4/27/2011 10:15 AM (GMT -6)   
Hi Lisa,
I had my LP yesterday and it was pretty bad.  It took two doctors because the first one tried for an hour.  It ranked right up there with childbirth when I had my seventeen year old.  I don't think I swore though, even though I'm not totally sure.  He tried two places with no luck.  The pains that were shooting down my legs.  My right quadricep cramped up and I thought I'd die.  Then when he tried the second spot I actually had vaginal pain, hip bones, and inner thigh.  I might have those mixed up but you get the idea.  He said maybe I should reschedule and try it again another day.  I didn't reallt want to go through it again and thought this is how it would feel even on a different day.  Then he suggested he get another doctor and let him try.  While I was waiting I told the tech I didn't think I could do it awake and she told me they couldn't put me out for it.  She said they could give me an anit-anxiety pill, which I wish I had taken to start with.  By now my muscles were so tense I didn't think I could relax enough.  Anyway, the second doctor was 100% better and got it with virtually no pain. 
I stayed there for an hour with my husband and I was really nervous about standing up for fear I'd get "the headache."  My back hurt and is now bruised around the first attempts area.  The one that worked has no bruising at all.  I'm currently reclining on my sofa recliner with a rolled throw to keep my back from touching the couch.  It is very tender to touch so I avoid it as much as possible.  I have a headache but I get "the headache" after standing for about five minutes and then have to lie flat. 
 
They told me about the bloodpatch but I don't remember how long I should deal with the headache before calling them.  I have my annual (gyn) exam tomorrow so if it's still bad I might have her call neuro or radiology. 
 
Have you heard anything on your results? 
 
I went to my new neurologist yesterday morning (the one I saw at the end of March, who sent me for the MRI, moved back to CA after my first appointment).  He hadn't even looked at my chart prior to my appointment.  I was there for an hour and a half going over my labs and other details.  Once he finally got to my MRI, I asked him other than MS, what could the lesions be caused by.  He said it's usually MS or Sjogren's.  I looked up Sjogren's and it really doesn't sound like me. 
 
One odd thing on my blood labwork was my bad cholesterol level.  it was borderline high (133) and my good cholesterol was 41, which is low for women.  What makes it so strange is that I'm a vegetarian and have a very healthy (I thought) diet.   
 
I am anxious for my LP results, and equally anxious to get off the couch! 
 
Oh yeah, I'm 42, 43 in July and i have three older kids (20, 19 and 17) and a ten year old.  We now live in Maine, which last night the doctor said has a high MS rate, but I lived in CA for twenty years before moving here.  Strange...
 
Anyway, let me know what's going on with your testing. 
 
Samantha - Have you found out anything?  I know what the wait can be like - still waiting....
 
have a good day!
 
 
I know there is more that I was going to write but can't quite remember. 

wilma
New Member


Date Joined Apr 2011
Total Posts : 15
   Posted 4/29/2011 6:44 AM (GMT -6)   
I am so sorry that you had to experience that pain as well. I  can honestly say that was devastated when I got done having the Lumbar Puncture. Did your headache continue? I hope that you are ok. I am 43 yrs of age. I am married with 3 young men. The youngest is 18. My husband, and I have been together for 23 yrs. I am greatful for the support that I have from my family. I was told that all the results have not come in for my Lumbar Puncture,. I had to reschedule my appointment. I am very anxious to find out the results. I am mentally prepared  to expect, or not expect anything. It has been a long journey. I have been dealing with most of my symptoms for approximately 6 yrs. I have had Doctors tell me that I may be under stress. That is why I was felt  the way I did. I tried to explain to them that something was wrong. Why am I having swelling. itching, burning, having problems with my vision,numbness, stabbing pains, fatigue, weakness, contipation, over active bladder etc.   What  I have to say to most Doctors... Don't just treat my symptoms...Find out what is wrong with me!!!!!! Gradually new symptoms started appearing, and  now finally something is being done. I believe that most of the Doctors did not have a clue, but they were too arrogant to admit that they did not know what was wrong. When I challenged a Doctor...They would try to prescribe me some antidepressants. I would decline, and switch Doctors. You would not believe the things that I have been through . Most of the Doctors procrastnnate . so that they can make an extra buck. They want you to keep seeing them, and paying your money. I am greatful to God for my Neurologist. He is excellent, and their is nothing bad that I can say  about him. He  listens to me without interruption. I finally feel like I am being heard. A good Dr-patient  relationship is very important. I will keep you posted. ttyl

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted 4/30/2011 3:27 AM (GMT -6)   
 I have copied the e-mail i sent to my son because it's easier due to my hands still hurting. 
i had a spinal tap on Tuesday and if the whole doesn't close up as it should, it leaks and causes extreme migraine headaches. They were so bad that every time I stood up I would throw up. By the time dad took me to the ER my hands were cramping up and I couldn't feel them - except for the excruciating pain. They gave me two bags of fluid, heparin for pain, adavan(sp?) to calm me down and then valium because the pain. They knew the headache and throwing up was because of the spinal tap so they did what is called a blood patch; where they take blood from my arm and inject it into the original hole in my spine. They had never seen the little attack my hands were having but with all of the drugs my hands went back to normal. They are still weak and in pain but useable. I need two hands to lift things and open doors but they should be back to normal later today.
 
I called off work yesterday, which I didn't want to do but since I was unable to do anything and even lying on the floor was painful.  I hated to do it because they rely on my (I work alone the last four hours) job.  I also didn't want to lose ten hours of my sick time since I am counting on them for my sick time after my surgery, which is right around the corner. After the sick days run out my railroad retirement sick pay kicks in and is next to nothing.  We'll manage.  It's hard to believe that in just two weeks my body will minus a colon.  Apparently they will be taking the appendix too since it's attached.  I have my preadmission appt. next Wednesday then I need to be at the hospital on the 13th at 8am.  Then I'll have 5-6 days in there. 
 
Also, I asked the neurologist's assistant about the test and she said they are still waiting on the "oglio -  something bands' part of the test.  I guess that's the part that tells about the MS.  I wonder if the hands thing last night was possibly related to the MS symptoms.  They said it had nothing to do with the spinal tap.  I've had mild cases of the hands but never the excruciating pain I was in. 
 
I've got to get ready for work so that's all for now. 
nanci

Gretchen1
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Date Joined Jan 2007
Total Posts : 3556
   Posted 4/30/2011 10:14 PM (GMT -6)   
Oligoclonal bands. It takes about 8 days after the lumbar puncture to get those results.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
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