Undiagnosed - MS Hug - Mri's. Questions :)

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spankyandrex
New Member


Date Joined May 2007
Total Posts : 6
   Posted 11/6/2007 8:53 AM (GMT -7)   
Hi there everyone.  I just found this website and have been reading post after post.  I'll keep my info short as I can, but would like opinions on what you think if I have spinal problems or if my Dr. is correct in thinking I "may have MS"?  Thanks.
 
I am 38 year old woman.  My history is significant for spinal problems all 3 areas due to being hit by a drunk drive when 12 years old.  Seeing Chiro for 26 years and counting.  Two lumbar MRI's 2 years ago revealed bulging disks, one tear and one herniation and moderate facet arthropathy.   Went through SEVERAL injections, can live with the pain, have learned to I guess.  One Cervical MRI revealed bulging disks, stenosis on the left side and facet arthropathy.
 
Now, in the last 3 months, this is what I've been going through.  I've also added when I have tested NEGATIVE for and POSITIVE for.  Where I'm at as of today - Doc called last nite and is ordering a cervical/thoracic MRI for Tuesday the 13th to check for lesions and/or more extensive problems that may be causing my symptoms. 
 
One last question I did have is - the MS HUG - I recall back in 2004 (I recall it because it was a HORRIBLE experience) if this could have been an MS HUG.  This is how I describe it. 
 
Summer 2004 -  Painful/Contraction like spasming of insides/abdomen.  Lasted about 25 minutes, over and over.  It was like something was bearing down around me.  Made me have to breathe comparable to childbirth to get through them.  I was in so much pain, pain like I'd never felt before.  I was sitting on the toilet because I thought the pain that was coming was because I had to have a bowel movement.  After going through this time period, I then did have a small one, but that BM was not why I was having the pains.  It was something else weird going on inside.  My Dr. says it was IBS, but I would have expected some sort of "explosion" after the fact (sorry, TMI), but no such thing happened.  Stomach was very sore for a few days after this episode.  Was about to call Ambulance, but I was home alone with my son, so I had to stick it through until completely unbearable. I got through it, but I will NEVER forget what happened and how it felt.
 
August 2007 -   I started having the following additional symptoms:
  • Sore left side of neck, so sore it became hard to lift from pillow. 
  • Tingling down my back.
  • Started having incontinence again in about August (this was originally treated with major surgery in 2/06 Burch Retropubic Urethropexy/Rectocele/Enterocele).  Not stress - just leaks out. 
  • Burning Feet – Both feet burn and sting when they get too warm, whether that’s in bed or if they get too hot in my shoes.  Not consistent with "sciatica like" no sciatic pain.
  • Started having swallowing issues - things are sometimes hard to swallow.  I gag when taking my vitamins in the morning now even small pinky size pills. 
  • Headaches (but only a couple that were severe to the point of nausea).
  • Twitching of right eyelid.
  • My left hip clicks when I walk.
  • Extreme tight muscles that spasm all over my body.
  • Twitching of left thumb, calves, shoulders, back and hips (could feel muscles twitching). Sometimes legs/arms while I am sleeping or going to sleep.
  • Ears are sensitive to sound - Left one was buzzing one day and felt like there was a fly.  Chiro checked for ear disorder with re-evaluation and was negative in 10/07.
  • Dizziness - Just sitting at desk or talking to someone or standing in front of cash register. 
  • Shaky hands at various times througout the day.
  • I noticed when I'm talking sometimes, that my whole head twitches or my cheek and lips and it doesn't come out right. It is a very strange feeling.
  • Itching on various parts of body - no apparent rash.
  • Tripping a lot - like going up stairs and sometimes trip over carpets laying flat.  Almost as if my left leg was dragging or my big toe or something.
  • Pain behind my eyes.  Dry eyes continue.  Seeing floaters/flashing lights.  Sometimes blurry vision, I would have to blink a few times to get it to focus.
  • I have found myself dropping things more often.  Once it hits the floor I think "I thought I had a good hole of that".
  • Noticeable limp (to me) when I walk because my left leg is shorter than the other.  I notice my left foot and leg tires easily as well. I could never sit indian style all my life, never because of what I was told (abnormal tight muscles throughout my trunk).
  • Extreme Fatigue.  I get 8+ hours sleep every night.
  • Speech/Talking - I find myself thinking two words and saying one word, but putting them both together, for example - I was thinking "GOOD" but instead I said "GOOL" as the other word was "COOL."   Saying words backwards - I recall saying outloud to someone several times when I did it in front of them because of embarressment "geese, I just be dyslexic today!".   Saying sentences in the wrong order.  Saying something I wasn't even thinking - I picked up my 1 yr old niece to go look at her newly remodeled BEDROOM as I knew that's what I wanted to say, instead I said, "let's go see your new HOME".
  • Eye Exam 10/07 - Optometrist noted increased pressure in eyes.  High end of normal for Glaucoma. 
  • I have been having acid reflux.  I never had heartburn in my life except on 2-3 occasions and while I was pregnant.  
October 15, 2007 - Appt. with PCP
Explained all that I've been feeling. Asked for MRI of cervical spine.  He suggested MRI of brain to check for multiple sclerosis since he felt I showed a lot of the symptoms.  He also suggested I follow-up with my uro/gynecologist because of the urinary incontinence since he is the one that did the surgery.
 
October 17, 2007 - MRI of Brain/Head with and without Contrast
T2 weighted imaging demonstrates punctate areas of high signal intensity within the centrum semiovale, possibly representing prominent Virchow-Robin spaces.  There is no evidence of abnormal enhancing lesion.  The periventricular white matter appears normal bilaterally.  The corpus callosum appears normal in width and signal intensity.  The foremen magnum and cerebellar tonsils appear normal. 
Impression:  Essentially normal appearing MRI of the brain with and without contrast.  Punctate areas of signal aberration within the centrum semiovale bilaterally, seen on axial T2 weighted imaging, may simply represent prominent perivascular spaces (Virchow-Robin Spaces), and are not seen as discrete abnormalities on other sequences.
 
**I HAVE READ THAT PUNCTATE AREAS OF HIGH SIGNAL INTENSITY CAN INDICATE EARLY MULTIPLE SCLEROSIS.
 
October 22, 2007 - Chiro Re-Evaluation:  Due to ongoing neck/back pain.  Abnormal Cervical Flexion, Kemps Test Positive, Trapezius/Rhomboid and Cervical Paravertebral all reveal myofascial trigger points bilaterally.  Joint Fixation at C1, C5 and C6 on the left.  Diagnosed with non-allopathic lesions of cervical/thoracic/sacral.
 
October 25, 2007 - Appt. with Dr. K - Uro/Gynecologist
Did a complete examination - surgery is holding up - no prolapse.  Did explain that it could be urge incontinence which does sometimes develop after this type of surgery (which is for stress incontinence only).  Also explained, however, that this type of "leaking" could be caused by a neurogenic bladder if in fact, I am diagnosed with MS.  He prescribed ENABLEX medication to see if this helps. Follow-up with phone call.
 
October  27-Nov 6, 2007 - Feeling good again ;)  Burning feet yet and sometimes radiating up to my waist, felt mostly in feet and calves.
 
NEGATIVE TESTING:
Brain MRI Essentially Normal
Ankylosing Spondylitis
Carpal Tunnel
Cholesterol
Rheumatoid Arthritis
Lupus
Thyroid
Low Blood Pressure
Diabetes
HIV/AIDS (Insurance Co. required testing)
Disorder of the ear - (by Chiro) on 10/11/07
ESR Sedimentation Rate Normal in 2004.
 
POSITIVE TESTING:
Vitiligo Autoimmune Disease (adolescence)
Degenerative Disk Disease 10/04 (Osteoarthritis)
 
 
 

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/6/2007 12:59 PM (GMT -7)   

After the normal MRI, is the doctor still suggesting that perhaps you have MS? I see you're getting new MRI's done. A good thing, as they might be useful to try to sort out what might be happening from your accident (which sounds horrific!) and something else going on, like MS.

What you had in 2004 (3 years ago) is not what I consider an "MS hug".  The "MS hug" is really more like this: muscle spasms in muscles that go around (thus the "hug") your body, like around your arm, leg, abdomen, torso.  A "squeezing in" feeling. I liken it to having your too-fat elderly auntie come and see you, and wrap her arms around you and give you a BIG squeeze.  The sensations moves from the outside in, sometimes feeling like "waves" of squeezing.  Some people will report that it "feels like" they can't breath, or take in enough air.  Rather than severe abdominal pain like you describe, they think either their lungs are collapsed, or perhaps they're having a heart attack. For me, it's just an all-around-my-torso squeezing in pressure, sometimes more intense than other times, but not at all the severe sharp pain like you describe here (and I think on another board I frequent. :)  )

Many people with MS do have bladder incontinence...but with your other medical complications, it's going to be hard to figure out if that is from previous injuries, or something else.  If you go to a urologist, they can test you to see if your bladder is working properly, and whether it is a "mechanical malfunction" or a neurological problem. Of course injuries can lead to neurological problems, too.

Tripping a lot-- it could be something called "foot drop", where indeed your foot is dragging, not lifting up properly when you take a step, causing you to trip. Unfortunately, like a lot of problems, foot drop can be a result of injury, or a neurological problem like MS.  Is your left leg in fact shorter..or do you just THINK it's shorter?  If it really IS shorter, that can cause gait problems, not related at all to injury or MS, and could cause you to trip.  And if the leg IS shorter -- that could also account for your "clicking" left hip.

Glaucoma is not a presenting symptom of MS.  You said you saw an "optometrist". You might want to see an opthamologist -- a licensed medical doctor whose specialty is diseases and disorders of the eye, to get a thorough check up. He could confirm the glaucoma problem, if it exists, also offer treatment for your dry eyes, and check for optic neuritis: inflammation of the optic nerve, in one (or both) eye.  Optic neuritis, or ON, is sometimes a precursor to MS.

You are 38?  Have you been checked for early signs of menopause?  Yes, I know what you're saying: "Hey!! I'm only 38!!!"  In fact, early menopause can start causing all sorts of problems at your age, and continue on and off into your 40's, when "full blown" menopause can kick in.

Anyway...good luck with your repeat MRI's. I hope the doctor can sort out all of this for you.

 

 

 

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


spankyandrex
New Member


Date Joined May 2007
Total Posts : 6
   Posted 11/6/2007 1:15 PM (GMT -7)   
Can I honestly say, YOU ARE the first person that has really taken the time to respond to me and I appreciate that more than you know (BIG CYBER HUG)! 
 
Well, my left leg, let's see.  I say it's shorter, but in true fact, it is not shorter, but my body is so tight, it shifts my whole body over to the right and makes my hips uneven and makes my left leg shorter (my chiro says anyway).  He has in the past prescribed orthotics and a heel lift to correct this, but it has not helped.  Everything on the right side of my body is higher than on my left (shoulders, etc.).  That's what my eval. said anyway.  When I went back to my uro/gyn about my bladder problem, he said that everything was fine (with my surgery and everything still in place and nothing has fallen again), therefore, he's suggesting I developed urge incontinence after the fact OR that i may indeed have MS.
 
Oh and Yes, my PCP is still suggesting I see a a neuro even after the brain MRI based on all of my symptoms. Gawd, I know it could be a hundred different things literally.. I know that...that's what is so frustrating and know I"m in for a long road of testing and such to find out what it is.  I'm prepared for that.  What puzzles me is I see so many posts with the same symptoms and other MRI results similar to mine "punctate areas of high signal intensity" and those have been diagnosed but my PCP believes this "looks normal", but he still wants the neuro to review it.  He also says lesions can show up on the spine and he wants to rule this out. 
 
Thanks about the MS Hug info, boy, that makes a difference in your description ;)
 
I do believe I have foot drop.  I've been told I have absent reflexes in both ankles and diminished reflexes in knees.  I've also been told that I have reduced strength in my Right Toe in dorsoflextion (sp?). 
 
I asked on another board about an optometrist vs. an opthomalogist - everyone said it didn't matter that an optometrist could see and diagnose ON - I'll check into this more when I know more.  For now, I'm going step by step, we'll see what the cervical and thoracic MRI's say :) 
 
I have been checked for early meno - I do have a reduced estrogen I know that, but my uro/gyn says I'm fine, my periods are totally normal and in otherwise, good healthy female state (other than the leaking thing LOL). 
 
SO, that's that.  Again, THANK YOU and if you have any more info to offer, great!  I think other people shyed away because I posted too much info so you are a sweetheart for sticking through and reading it.  Have a wonderful day!
 
 
 

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/6/2007 2:00 PM (GMT -7)   
spankyandrex said...
Can I honestly say, YOU ARE the first person that has really taken the time to respond to me and I appreciate that more than you know (BIG CYBER HUG)! 
 
Well, my left leg, let's see.  I say it's shorter, but in true fact, it is not shorter, but my body is so tight, it shifts my whole body over to the right and makes my hips uneven and makes my left leg shorter (my chiro says anyway).  He has in the past prescribed orthotics and a heel lift to correct this, but it has not helped.  Everything on the right side of my body is higher than on my left (shoulders, etc.).  That's what my eval. said anyway.  When I went back to my uro/gyn about my bladder problem, he said that everything was fine (with my surgery and everything still in place and nothing has fallen again), therefore, he's suggesting I developed urge incontinence after the fact OR that i may indeed have MS.
 
Oh and Yes, my PCP is still suggesting I see a a neuro even after the brain MRI based on all of my symptoms. Gawd, I know it could be a hundred different things literally.. I know that...that's what is so frustrating and know I"m in for a long road of testing and such to find out what it is.  I'm prepared for that.  What puzzles me is I see so many posts with the same symptoms and other MRI results similar to mine "punctate areas of high signal intensity" and those have been diagnosed but my PCP believes this "looks normal", but he still wants the neuro to review it.  He also says lesions can show up on the spine and he wants to rule this out. 
 
Thanks about the MS Hug info, boy, that makes a difference in your description ;)
 
I do believe I have foot drop.  I've been told I have absent reflexes in both ankles and diminished reflexes in knees.  I've also been told that I have reduced strength in my Right Toe in dorsoflextion (sp?). 
 
I asked on another board about an optometrist vs. an opthomalogist - everyone said it didn't matter that an optometrist could see and diagnose ON - I'll check into this more when I know more.  For now, I'm going step by step, we'll see what the cervical and thoracic MRI's say :) 
 
I have been checked for early meno - I do have a reduced estrogen I know that, but my uro/gyn says I'm fine, my periods are totally normal and in otherwise, good healthy female state (other than the leaking thing LOL). 
 
SO, that's that.  Again, THANK YOU and if you have any more info to offer, great!  I think other people shyed away because I posted too much info so you are a sweetheart for sticking through and reading it.  Have a wonderful day!
 
 
 
MRI's are mysterious things.  Two different doctors, looking at the SAME MRI, can come to two different conclusions.  One can see lesions, the other not. One can decide lesions are in the "right place" for MS, the other not.
Re: your "short leg" problem. Please do be careful about chiropractors.  Good ones can be really helpful, especially for back pain.  But not-so-good ones can cause more problems than were there when you started.  Having "everything on your right side higher"...is suspect.  If I were you, I'd probably go to an orthopedic doctor to confirm that, and not just take the word of a chiropractor.  Heel lifts that aren't necessary can really throw off your gait, your walk..and in turn cause all sorts of other problems in your spine, hips, knees, legs, etc.
Yes, "punctate areas of high signal intensity can suggest MS. Or other things. The radiologist suggested one area to explore, the Virchow-Robin spaces.  It certainly is worth pointing that out to the neuro, and asking him to explain what that is, and if there are any consequences you need to be aware of.
Yes, an optometrist could diagnose optic neuritis, if you have it. The reason I suggested an opthamologist was more for the possible glaucoma problem..and while he's looking around in there, could deal with the dry eyes and ON, too  :)
Finally, yes, lesions can show up on the spine. With your other spinal injuries, though, it'll be challenging to figure out if the "lesions" are MS-related lesions, or scars from past injuries.
Unfortunately you're in for a long series of doubting and testing and re-testing, given your complicated medical history.  I hope the neuro can sort it out quickly and, if it is MS, get you started on treatment...or if not, help you figure out how to deal with some of the rest of it.
 
Take care.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/6/2007 2:40 PM (GMT -7)   
Hey Spankyandrex

Wow...so much going on for u! I'm so sorry u've had to become accustomed to pain and lived with all of this for so long. Uppitycats has done a wonderful job of answering u'r concerns and as thoroughly as i think could've been done. I would only echo and applaud her information here. I did want to welcome u to the board tho and let u know that we're so glad u've found us and decided to post. There are so many here who, like u, are and have been experiencing illness and unanswered symptoms for some time. I hope u will find much comfort and support here. Feel free to post any questions u may have and we'll do our best to answer them. Also, we have live chats on Monday's at 6:00 pm (cst) each week. I hope u'll join us! Take care and again, welcome to the board.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


spankyandrex
New Member


Date Joined May 2007
Total Posts : 6
   Posted 11/6/2007 2:55 PM (GMT -7)   
Ok, I've found my home now and it's right here (at least until I receive a diagnosis).  You guys are awesome THANK YOU for paying attention to me, you have made my day for just reading my info and responding.  THANKS  - I'll try to make it to a chat next Monday for sure, I can't wait.  You guys  have a great evening!
 
 

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/6/2007 3:06 PM (GMT -7)   
Just so you know..I "don't do chats". Just can't get the hang of it. "Old dog....new tricks" thing. Or maybe curmudgeonly cat. Anyway...have fun there! I guess most of the folks here really enjoy them!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 11/6/2007 10:22 PM (GMT -7)   

Hey Spankyandrex,

OK so your post was amazing and interesting and tragic.  It took me two different times to get through the whole thing.  I would hate to see one of your long posts.  Lol.  Chat is fun even if Uppitycats doesn't come.  Although she should, we would love to chat with her.  I am really glad you found us here.  Feel free to ask any questions you may have.  There are many here just like you; undiagnosed and looking for answers.

Love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 11/9/2007 7:56 AM (GMT -7)   
Hello, I am usually on the Lyme Forum, but happened to read your post. I have so many of the same symptoms and experiences with doctors that you have had it is too much to write here. I have written my story for a book on Lyme disease soon to be out and I would like for you to read it. My email is on my profile, I can email the story to you. I have been diagnosed with disk problems, dropped foot, MS Lupis and more. Your symptoms sound very much like Lyme and or co-infection which is what I ended up having. Many times tests come out negative even if you have it, so Lyme MDs treat symptoms. There are specialty labs that can detect what common labs cannot.Many MS patients get better on Lyme treatment as well. Please check it out with a Lyme literate MD not just any doctor. Lyme mimics many symptoms such as Lupis, MS, and many more. Blessings, Laura

DX Lyme since 7/02, Babesia- diagnosed 3/07
RX Doxi-1 1/2 yrs, Amoxi 1 1/2 yrs, Malerone   2 weeks, Mepron, Azithromycin currently
 
 
Outstare The Darkness  -----  The Light Will Come!


Kathie T.
New Member


Date Joined Dec 2007
Total Posts : 1
   Posted 12/4/2007 8:23 AM (GMT -7)   
Read about Fabry Disease and see if any of the information sounds familar.
 
Kathie
 
(Mod. Note: For u'r protection it's best that u offer u'r email address and other such contact information within u'r profile. Please email me or any of the other moderators if u need help in doing this. Thanks for u'r understanding!)

Post Edited By Moderator (rhondab) : 12/4/2007 9:05:53 AM (GMT-7)

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