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kc2111
New Member


Date Joined Jul 2009
Total Posts : 7
   Posted 7/18/2009 11:00 AM (GMT -7)   
Hi all, 
 
 I have a neurologist appt in august to be tested for MS.  I have done alot of research and lookiing back on the last 17 years I can see the sysmptons now.
 
This last time I went to the Dr. it is because the top of my left foot and side of my ankle are numb.  When you touch them it feels like pins and needles.  Over the past  3 - 4 months I have been experienceing severe leg cramps at night.
 
Looking back:
 
- In 93 I lost my sight (partially) within a matter of an hour.  Everything was a milky haze.  It only lasted the night I was told I had an allergic reaction to medication I was taken.
- In 2000 I got Vertigo, all of a sudden.  Any movement about put me to the floor.  I spent two week in bed and it has never truly gone away.  I can no longer ride rides like I used to because it trigger my vertigo.
- In about 2003 I started having issues with my legs.  At night I couldnt get them comfortable, they felt heavy, like they werent mine.  Of course they didnt know about restless leg syndrome then   so I was told to try walking at night before bed.  That last about 2 years. Now it only happens on occasion.
- about 4 years ago I was put on anti-depressents for severe depression.
- about 2 years ago I started having pain in my hips and legs.  If I sit to long when I get up I feel stiff and sometimes it hurts to where I walk with a limp.
- Now the leg cramps and numbness
 
Given what I have read, the age range sweems to be 20 - 40.  My first symptoms started at 23 and I am now 40.
 
I'd like to see if this fits with what you guys are experiencing.  Im nervous and anxious about my upcoming appt.
 
 
 
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 7/18/2009 12:01 PM (GMT -7)   
hey kc,
 
I am sorry you find yourself posting here.  I am not a doctor so obviously I can't diagnose you but you fit the bill in a very classic way.  The only symptom that is somewhat questionable is the sore hips and legs.  That sounds more rheumatic but if you are getting that from spasticity then you are back to a possible MS diagnosis.
 
I have that lovely vertigo.  Like you have described.......it never truly goes away.  Well I am walking out the door so my response is a bit brief.  Sorry about that.
 
I know you are nervous.  You have every right to be.  Try to just take it one day at a time.  If you indeed get a dx of MS, just remember it is not fatal.  You can live with it.  It does mark a distinct change in the path of your life, but certainly one you can adjust to. 
 
Please let us know how that neuro appointment goes.  I will post back with more later.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/18/2009 1:31 PM (GMT -7)   
Hi, I too am experiencing symptoms of MS and am waiting for a neurologist to call me for an appointment. I'm very nervous and wish all of this would just go away. I'm a 33 yr. old single mom of 2 beautiful girls and I already can't do a lot with them...the prospect of being able to do even less if very depressing.

Currently I am experiencing numbness and tingling all down the left side of my body. It started about 2 weeks ago in just my hand and moved quickly to my arm, neck and face. Then moved to my left foot and leg. Now my rearend and back are feeling it. I was diagnosed in feb 2008 with fibro...the symptoms would come and go...most of the meds didn't help much. Now when I think back to some of the other things I have experienced over the years...it seems I may also be in the right place. Last fall I had this same numbness on a couple of occassions and just wrote it off to sleeping weird or the fibro...I was also rushed to the hospital (by the bidding of my doc) due to a sudden feeling of the numbness coupled with disoreintation and stumbling...couldn't drive myself to work.

Today upon waking I felt the numbness still and was a bit worse...then after about an hour I was talking on the phone to my boyfriend and he said my speech was really slurred...I have been having a hard time with conversing for about a week or two also...stutter...say words incorrectly....

Anyone got any advice...experience, strength or hope??? I'm very frustrated with myself right now and my family keeps saying I should go to the ER...I don't think they will do anything for me though.....

kc2111
New Member


Date Joined Jul 2009
Total Posts : 7
   Posted 7/18/2009 1:34 PM (GMT -7)   

If I were you I would keep pushing the issue until you get your appt.  I have been going to the dr over the years with many different reason for my symptoms.  I its not MS its something.  I just want to know so I can get relief, one way or the other. 

 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 7/18/2009 6:07 PM (GMT -7)   
Vocalist,
 
My diagnosis began with a trip to the ER.  I was observed for 6 hours then admitted when I didn't respond to anything they tried.  I would go to the ER now as you are also having symptoms that could also be a TIA or a stroke with the one sided numbness, slurring speech and a history of disorientation. 
 
My trip to the ER ended up with a four day hospitalization and was the beginning of my diagnostic process.  Three months later it was official.  The ER may well be the place to start. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/18/2009 9:10 PM (GMT -7)   
hi gretchen,

thank you for your response. i'm heading to the ER in just a couple minutes actually...i am now having severe pain in my left arm

Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/19/2009 9:15 AM (GMT -7)   
What a night....

Got to the ER around midnight....didn't get home til 530 this morning. i'm exhausted. doc there was very nice acutally and did a huge battery of tests. ekg, CT, blood work, etc. everything normal. told me i needed an MRI said it could be MS since they ruled out several other things. still wondering why they didn't just do an MRI there...oh well.

feeling foggy and slow thinking this morning and have a pretty good headache. numbness still continues...not as much pain today (there's something to celebrate).

healing4us
New Member


Date Joined Jul 2009
Total Posts : 9
   Posted 7/19/2009 3:30 PM (GMT -7)   
Wow I feel at home here on this forum.  Almost in tears to feel amongst so many with similar paths.  In 99 I was pregnant and lost my equilibrium and could not walk they shrugged it off as being pregnant and the vertigo would go away after the pregnancy.  Well guess what it didn't.  So much pain in my arms legs and back and I get spouts when people hit a chair I'm in it causes the vertigo sometimes to increase.  I can not stand sudden movement like that without feeling off balanced or like the things in front of me are shifting.  I was diagnosed with Fibro about 6 years ago.  I underwent a lot of treatments and during that time I would feel off and on well.  Then my head started tingling and they said maybe you have menengitis but I don't.  I underwent a severe surgery over a year ago so they pain I have is a lot from that also so it is hard to pin point sometimes.  Lately I can't remember my words and my head aches are getting more intense.  Every night I fall asleep my body goes into a speratic episode that wakes me up.  Eventually I can fall asleep without the muscle spasms.  My vision has been going for awhile and I have been checked for glasses and so forth.  I have had 3 colonoscopy's and when I get the comon cold I'm usually down with something more severe.  My husband doesn't understand really no one does because at first Fibro was not medically respected.  I've been called a hyprocondriact and just looking for attention but the funny thing is I don't want to talk about my illness.  I fight everyday to live a normall life without showing the effects of what ever it is that I have.  I went in to do an MRI on Friday and have not seen the results.  I don't know whether to pray I have the illness or don't (yes I know that sounds crazy to pray for an illness)  If I could pray it would all go away and I just felt normal then deffinently this would be the ultimate conclusion but unfortunately whether they diag me or not the sypmtoms of what I deal with every day are still there.  I coach soccer I work full time and I really do try to function every day and I don't like talking to people about my issues.  I don't need people to think I am crazy and get critized by others.  I would just rather not talk about and function the best I can.  Anyways my vision is so strange.  Right now the screen shifts or moves or gets blurry while I sit here.  I have the hardest time concentrating although sometimes I feel totally put together and nothing was ever wrong.  I love these days and I get so much done.  I feel absolutely exhausted and very snappy when I don't feel well.  I'm starting to think that fibro was just an easy diagnosis and there is something more going on here allthough I am very anxious that they will find nothing and I will be back to square one again. 

kc2111
New Member


Date Joined Jul 2009
Total Posts : 7
   Posted 7/19/2009 4:53 PM (GMT -7)   
Im glad people are coming and talking. Most on here have their diagnosis, I felt sort of in limbo. I have symptoms but no diagnosis. My Neuro appt isnt until August 12th, seems like forever. Then from there who knows when I'll get my MRI. I almost went to the emergency room today - my numbness and tingling has moved to the bottom of my right foot, my left arm and the lower left part of my face. My left arm and face are ever so slight but I feel it.

Does anyone have sensitivity. When I went to get my pedicure the other day every touch made me jump/twitch. Even just sitting here typing, I feel this strange sensation going from my shoulder through my back down my left left leg, ive heard others describe it as ean lectricty feeling? Makes me feel like I want twitch or I guess spasm.

I have heard that MS is not genetic. My cousin I found out has it, he takes a shot once a week.

I'd like everyone to keep in touch through this forum so we can follow each others progress. If nothing else offer encouragement and hope it will get better.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 7/19/2009 8:26 PM (GMT -7)   
We have many people here just like you, in limbo.  There is a slight genetic link in MS.  It shows up more as a predisposition to autoimmune disorders than MS.  Does anyone have RH, or Lupus, or Crohn's?  Those are all autoimmune. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/19/2009 8:27 PM (GMT -7)   
Hi KC and Healing...

I can completely identify with what you are both describing...as you saw above, I haven't yet been diagnosed either. I'm very frustrated though with the symptoms. for the most part i just don't feel like myself. I have always been a very quick thinker, quick learner, and articulate speaker. Lately I have a hard time finding the word for very simple things like grass....it's crazy.

I also understand the "wishing" for it to be figured out as to what it is that's causing all of this...mostly so i can get whatever treatment it is that i need and just move on with my life. all of it is a bother really...the fatigue is almost more than i can take some days....

i guess i'm fairly content with where i am right now in the process. I have at least been evaluated for just about everything else that it could be and all is normal. I also have a referral to a neuro (hopefully a good one) and am suppose to have an MRI scheduled with him.

Please do keep posting and stay in touch. Living with this without someone to talk to is the worst for me.

Thanks and much prayer to you all....

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 7/19/2009 8:31 PM (GMT -7)   
This is for everyone.  You should try to find an MS neurologist or an MS clinic/center.  A general neurologist made my initial diagnosis but it was confirmed by an MS specialist at UCLA MS clinic.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/20/2009 8:35 PM (GMT -7)   
so another not so good day. Tried to go to work...couldn't drive so my boyfriend took me. I was so dizzy I felt like I was going to be sick. My boss was very nice and told me to go home and relax. I called the neuro office to find out when i could get in to see him...not til september 22. They told me to call my GP's office to see if they could do a dr to dr call and get me in with another neuro faster. GP told me to go back to the ER and have them do an MRI. Went to ER...was there all day and they did an MRI. ER doc said everything looked normal and sent me home....didn't get out of there til after 330. Called GP to let them know since that's what they wanted me to do. I am seeing him tomorrow for further "exam". I'm so frustrated. Feel very numb and tingling on whole left side still...worse in the face today. Very dizzy and very fatigued...slept all day long. I'm not sure what to do anymore.....

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 7/20/2009 10:01 PM (GMT -7)   
Vocalist,
 
Get a copy of your MRI and a written report.  It is amazing what some will call "normal."  IE - you have only three lesions....that is normal for a woman your age.....that may suffer from migraines....etc." 
 
You need to have that record.  You need to see NO lesions.  If there are any lesions, make sure you get a reasonable explanation for them.  Then get a second opinion and maybe a third.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 7/21/2009 12:18 PM (GMT -7)   
Gretchen is right about getting copies of your MRI results, sometimes doctors brush off abnormalities because they are considered minor.  I also highly reccommend getting an MRI of your spine if you think MS is a real possibility, because you can have spinal lesions even if you don't have lesions on your brain.
 
Keep pursuing things with your doctor until you get some answers, and remember, many people on this board have been through the same thing that you are going through.  You may feel like you are all alone in this, but you're not.  Good luck.

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


kc2111
New Member


Date Joined Jul 2009
Total Posts : 7
   Posted 7/21/2009 6:20 PM (GMT -7)   
I only have a few more weeks until my MRI. I am hopeful I will get a good neuro. I have done alot of research online and ran across the mayo clinic sight for MS. You can actually request an appt online. Vocalist, if you can get your MRI results you may want to look into that. From what I read they understand all the frustrations of lengthy diagnosis and said on the website they can have everything you need within 4 days. Not sure where you live but there is one in AZ. Depending on what my results/Dr says I will consider going there next.

I found it

http://www.mayoclinic.org/multiple-sclerosis/

Says they have centers in Arizona, Florida and Minnesota - go check it out.

kc2111
New Member


Date Joined Jul 2009
Total Posts : 7
   Posted 7/21/2009 6:39 PM (GMT -7)   
Well I took my own advice and went to the Mayo website and requested an appt. When I submitted it, it said they should be back with me in 24 hrs. I'll keep you all posted.

Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/21/2009 9:51 PM (GMT -7)   
Thanks everyone...I will definitely check out the mayo clinic website. Went to GP today and he is very concerned. He said he was going to call the neuro's office and he didn't care if they had to see me on their lunch or after 5...they were going to see me sooner than sept22. I really like this doc...he has taken my symptoms very seriously. So...neuro's office called this afternoon and I'm going there tomorrow morning at 9...I sure hope that this brings something to light...anything at this point.

Question...are headaches common with MS....also what about vibrations...my jaw has been driving me nuts today!!

kc2111
New Member


Date Joined Jul 2009
Total Posts : 7
   Posted 7/22/2009 5:21 AM (GMT -7)   
Good luck! let us know how it goes.

Hopeful in MD
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 7/22/2009 1:56 PM (GMT -7)   

Hi Vocalist and KC2111,

My daughter was dx'd with relapsing/remitting MS at age 26 just before she was married to a great guy.  She has experienced Nystagmus (eye twitching and tingling in her legs off and on).  She had one terrible experience with vertigo - could not stand or walk with her eyes open.  Her husband and I carried her to the car for a trip to the ER.  They quickly dx'd the vertigo and I believe gave her something to ease it, but she didn't get over it for some time.  She is one of the lucky ones - long time between attacks.  She is on Copaxone injections, but was told just yesterday by her neuro that she may be need to take them only when she is having symptoms. 

It took a long time to get the MS dx.  Docs ran all kinds of tests, ruling out other conditions before settling on MS.  So it may be a while longer before you are diagnosed.  However, I echo other comments that you have symptoms that could be MS.  I hope the best and will pray for you, especially that, if you DO have MS, it is a milder form.

Some good news for MS patients - a new ORAL (by mouth) drug for MS is being considered for approval by the FDA.
 
By the way, I am coping with prostate cancer but won't include my signature in this forum.
 
Gene in Md

Vocalist
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/22/2009 7:59 PM (GMT -7)   
i'm back again...saw neuro today. He doesn't thing it's MS but rather atypical Migraines...that would be a much "better" dx if he's right. I have been searching the internet for migraines with numbness/tingling, twitching, etc and haven't found much so I'm still a bit concerned. I have had a couple of headaches over the past week, but nothing terrible. Also, this numbness started about 4 weeks ago (I think) and hasn't let up. I have had migraines in the past and can agree that I may still be having them on occassion...has been at least 2 months though. I don't really know what to think right now. Still having balance issues and dizziness. Also some slurred speech. Neuro is having me do a BAER next week. Also running B12, E and copper blood tests...we shall see i guess. Oh and he put me on an anti-seizure med to prevent the migraines (that in my opinion haven't existed in about 2 months)...still frustrated (not as much as I was but still bothered).
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