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1658667 tn?1310091382

Please help- looking for answers

I have had weird things happen all my life but what drove me to the doctor was the left side of my face and lip feeling numb and my left hand on top outside and forearm feeling numb and tingly. I have also been trying to get answers for 2 years as to why there is severe weakness in my right lower leg too.  

Here is an overview of my medical history and the MRI results: (I am so sorry it is so long just feeling desperate for answers).

Age 16- kept passing out then had severe weakness for 1 week, in bed. Could hardly move or talk. In hospital overnight for tests. Suspected Mono but not conclusive. Was also in my first trimester of pregnancy.

Age 26- Full Hysterectomy followed by pulmonary embolisms 10 days in hospital.

Two months after, developed severe weakness on right side- first couldn't pick up a cup at dinner then within 2 hours, leg dragging, freezing cold right hand, hard time concentrating and writing. Hospital stay 5 days. No conclusion. Suspected stroke but no evidence. In wheelchair for 1 month then was fine. Except for clumsiness and some memory problems. I have always been clumsy.

Age 27- oxygen levels fell to 50% and couldn't breathe. No cause. Again in hospital for 3 days ICU. Oxygen levels returned to normal and no residual. No conclusion.

Age 29- Back pain had 2 ruptured disks. Lost insurance, lost job, lost husband, kept children... so no follow up.

Now have insurance- Kaiser

Age 47- Fell down stairs in my house. No reason I can remember just walking down to go to work and bam! Tore left ankle tendon. Had ankle surgery 6 months later.

Age 50- severe stabbing pain in right calf walking backwards off a small step. Residual clumsiness, walking (gets worse after hot shower), leg muscles fatigue fast, some balance issues.Tons of tests. no conclusions. hard time climbing stairs. Nothing wrong with spine, knee, etc. except for wear and tear for my age and tight calf muscle on right. Hard to straighten leg fully. Leg feels heavy and kind of dead. If I place my hand on my thigh when I walk it is like it reminds my brain where it is.

Age 52- Sudden left hand tingle and numbness. Left face tingles and lips. and eyelid. Sudden vision change in right eye.

Diagnosis-
Cataracts in both eyes and concern with double vision. Thought it may be my myasthenia gravis but blood test came back normal. No explanation for the sudden vision change. Suggested cataract surgery.

Had MRI last month-
MRI results-

TECHNIQUE: Sagittal T1. Axial T2. Axial and sagittal Flair.
Axial DWI.

2 small focal T2 hyperintensities involving the left frontal
subcortical white matter. However, this is a quite nonspecific
finding in a patient of this age although they could represent
demyelinating plaques.No classical evidence of demyelinating disease.
-----------
Over the last few years have experienced-

-Double vision really bad when I turn my eyes to the right and causes pain. Objects are stacked. Notice my head tilts to the right shoulder.
-Constant burning pain on soles of feet. Hard to have blanket on or have any pressure on them.
-Tingling all over- different places at different times- like goosebumps or electricity.
-Choking on water or saliva that goes down wrong way.
-Twitching in eyes, inside arm, and left index finger here recently and full body or leg when I sleep
-Flutter sound in ears like there is a moth in there
-Memory problems, can't remember familiar names, mid sentence lose train of thought and go blank.
-Balance issues and bump into things a lot
-Drop things or have a hard holding things
-Numbness in toes on right foot
-Can't curl toes on right foot
-Severe episodes of internal itching in lower parts of legs and arms brought on by heat or exercise- no rash- goes away when I cool them off.
-Foot cramps and calf cramp right leg, hamstrings cramp easy and neck cramp
-Hand cramps terribly when I write
-Swelling in feet, ankles. Swelling in hands in heat.
-Severe fatigue- just talking wears me out sometimes
-Can't handle hot sun or heat
-Get more confused, overwhelmed, or hard time thinking when I am tired which seems to be a lot
-Severe sweating even from small chores like doing dishes
-Don't sleep well. Up several times a noght due to going to the bathroom, sweating, and sudden twitch
-Hiccups
-Cough that won't go away the last 2 months
-3 UTIs in 4 months
-Shallow breathing
-Acid reflux
-I seem to have a broken internal thermometer because I am cold one minute and hot the next for no reason

The neurologist has ordered an EMG and talked about maybe doing a lumbar puncture. He said it is very very unlikely this is MS (which is what he first suspected until the MRI) however and may send me to a psychiatrist.

I guess I just want to know what the heck is wrong with me. How can all of this be in my head?

My whole life I have had weird on and off scary health issues and no answers. Here in the last few years things seem to be increasing with new symptoms and now the use of my right leg is compromised.

Any help would be so very much appreciated!!!!
12 Responses
572651 tn?1530999357
Hi and welcome.  That is sure one lengthy list of symptoms and I am glad to hear the neurologist is looking at options for you.  You may be older now and outside that window of "optimal" MS age (I was 54 when diagnosed) but it appears you have had neurological problems for years.

You may have to see a psychiatrist just to clear that question off the table.  It happens quite a bit when it drags out like this.  

Listen to your instinct - you know you have something wrong and don't give u on getting answers.
see you around, Lulu
1394601 tn?1328032308
Personally, after my experience, I would be finding a new neuro.  I would also be making a shorter list of ONLY neurological symptoms.  Keep it short and sweet.  I wouldn't go back to my teen years.

Age?  Hell many of us were 60 or older before we were dxed.  We either had tools for doctors or didn't bother seeking medical help until our late 50's or 60's.  My first neuro told me I had a pinched nerve and was POSITIVE it could cause all the problems.  

Like Lulu said....listen to YOU.  You know there is something wrong and it isn't just a little bit of anything.  Keep in mind while you are sitting under your present neuro, it is your body that is being damaged.  It ain't something they can fix.  MS takes what she is gonna without some serious help.

Find another neuro.

JMO
198419 tn?1360242356
Hi there,

Welcome - no worries where the length is concerned - it really helps us to know more about what you've been through.

You history should be concerning - especially where the PE's are concerned. If you find you get no-where with the neuro, I would ask he/she for a referral for someone that can look into possible causes. There are many mimics of MS - those including disorders of the blood and clotting factors. These should be thoroughly investigated in order to truly rule them out. A hematologist could do this as well.

Thanks for joining us,
-Shell
352007 tn?1372857881
I would also suggest a new Neurologist and be referred to a Neuroimmunologist or Rheumatologist.

You definitely have quite a history and to have no answers at this point since the age of 16, concerns me.  It's time to become proactive in your health care and move onward, upward and switch Neuros.  Obviously after all this time you need to.  

(Dont worry about lengthy posts -- I do it all the time). Heh.


Welcome to the forums where you will find the best people around.  I love these guys and wouldnt go anywhere else.

Lisa
1658667 tn?1310091382
Thanks everyone for your all the help. I know there is a lot here and I kind of felt embarrassed by listing my whole life of symptoms. I just didn't know what was connected to possible MS or if it even sounds like I should be thinking in this direction.

It has been too long without answers for sure!!

These last 2 years have been getting worse as far as my right leg weakness, the constant electrical buzzing, and the fatigue. With another summer coming, I dread the heat.

This may be a silly question, but from all of my life history, what seems related to MS? Wjat kind of blood disorders are like MS?

I appreciate all your expertise and time helping newbies like me :D
198419 tn?1360242356
MissL,

My thoughts regarding bloods were related to APS, or Hughes Syndrome, which is a big MS mimic. This came to mind while reading your symptoms - especially the blood clots.  

Not suggesting this is what you have, but it came to my mind. You can read more on it here:  http://www.hughes-syndrome.org/symptoms.htm

-Shell
1394601 tn?1328032308
Here is what I would present.  Keeping it simple, trust if you have a good neuro he/she will ask questions but will have a good idea of what is happening and will know what to ask before giving you a good exam.  I think making the list short gives him a better opportunity to give the exam.  Sometimes if the list is too long, I feel they write it off as anxiety before beginning.  

It might even be shortened a bit more by attaching a copy of the MRI and letting him view it on his own.

I am not a medical professional ...just another MSer and this is just my own personal opinion.  I hope it is helpful:


Over the last few years have experienced-

-Double vision .
-Constant burning pain on soles of feet.
-Choking on water or saliva.
-Twitching in eyes, inside arm, and left index finger.
-Flutter sound in ears.
-Memory problems especially when fatigued.
-Drop things or have a hard holding things
-Numbness, curling in toes on right foot
-Severe episodes of internal itching in lower parts of legs and arms brought on by heat or exercise
-Foot cramps and calf cramp right leg,
-Neck and hand cramping.
--Swelling in feet, ankles and hands..
-Severe fatigue
-Severe sweating even from small chores like doing dishes
-Don't sleep well.
-3 UTIs in 4 months
-Shallow breathing
-Acid reflux

Had MRI last month-
MRI results-

TECHNIQUE: Sagittal T1. Axial T2. Axial and sagittal Flair.
Axial DWI.

2 small focal T2 hyperintensities involving the left frontal
sub-cortical white matter. However, this is a quite nonspecific
finding in a patient of this age although they could represent
demyelinating plaques.No classical evidence of demyelinating disease.
1658667 tn?1310091382
Thank you for taking time to help me know what to present. I had no idea some of the things on the list were possible MS related symptoms. I probably would have left off things like acid reflux. I still can't figure out how some of these can be related to MS so your help is much appreciated. I have Kaiser insurance so getting another doctor is difficult as they only have a few neurologists in my area. I don't think any of them specialize in MS either. Maybe the EMG next month will show something and we can get to the bottom of this.

BTW- I am beginning to think that people with MS are much more aware of things than the doctors!!
1394601 tn?1328032308
The acid reflux can be caused by the famous MS hug...an awful feeling...
1658667 tn?1310091382
I have a really tight, pressure feeling feeling especially on my right side just under the ribs and it extends around to the back.  It is so bad I can hardly wear a bra or pants. I didn't know what it was from. Is this like an MS hug?
1394601 tn?1328032308
For me it seems the MS hug does the same thing.  I called the acid reflux into it because I also have problems swallowing.  When I can it just seems to sit and it takes forever for it to move down.  MS just seems to slow my entire system.  I think it does need to be brought to the neuro's attention...I would add the tight feeling in your side extending to your back on that list.

Just be sure those things on the list are things that are interfering in your daily life.  If they are only on occasion I would take them off for now.

I sure wish you luck having been in your shoes for nine years before a dx.

Hugs, Sumana
1658667 tn?1310091382
Thank you Sumana for explaining that. I would have never made the connection.

I am sorry that you were in limbo for so long.

When I had my first situation when I was in my 20s, I was so scared and got so frustrated trying to find out why my entire right side went weak, I couldn't write, concentrate, was in a wheelchair and that is when the memory problems started. I gave up then trying to find answers because within a month, all the symptoms were virtually gone (except for memory, heat, fatigue and balance issues but I just thought I was weird).

I guess in some ways I am grateful that I didn't know all these years, since there was nothing to be done anyway. It has only been in these last two years that things seem to be accelerating. And that is when it was suggested that it may be MS. So my limbo for MS has been much shorter.

As I read all the posts here, I realize this is a common issue. I am so sorry for everyone to have to live with the uncertainty. Not knowing seems like torture. Not that finding out you have MS is a cause for celebration, but at least you feel validated in what you are experiencing and there is hope for help to feel better with the new treatments they have (I think).

I hope things are good for you today :D
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