Quixotic1 Can you please advice me?

[marline]

A little about how I got here.

Last year on 05-02-06 I was at a party and got hit in the head with a medicine ball, I thought nothing of it, my neck hurt a bit the day after, but all the pain was done in a few days.

About a week later, I woke up in the middle of the night because these strange feelings were going throughout my body, like electrial feelings.  I rushed to the ER and they sent me home saying it was anxiety. I started to have tingling, pins and needles, headaches, weakness, eye pain for about 2 months.

6 ER visits- ANXIETY
Neuro- anxiety
Brain mri- normal
C-spine mri-normal- couple of bulging disks
Bloodwork normal

My symptoms were all gone around July 2006
Feb, 14, 2007, I started to get the tingling all over again and freaked out that whatever it was I had before is back.

Since Feb, heres are a list of all my symptoms:

Tingling, pins and needles, headaches at the temples, hot and cold sensations in feet and hands, major muscle weakness, eye pain, difficulty (lump) while swallowing, thick speech my"th" sounding words dont sound the same anymore, numbess but only at night, right upon waking up it goes away, I had itching for about 2 days and it was gone, twithcing that I have now all the time but more apparent at night, and in the last couple of days, my mid back like at my bra line has been killing me and my legs feel like I have ran a marathon.

Since Feb I did another brain mri- normal, bloodwork normal, seen a rheumo said I was normal, checked for Lyme said it was a negative.

I don't know where else to turn, my neuro says anxiety and has ruled out ms, but all my symptoms point to it.  I am doing a t-spine mri next week.

I went from this 25 year old healthy girl to this, it's very frusterating as I don't know what each day has in store for me.

HELP

[marline]

Also I want to add, that most of the time the tingling is on the left, but it has definenetly been on both sides, my face tingles most of the time on the left.

And it's real weird I have a twitch now that I have never had in my life, mostly when I lay down to go to bed, it's very strange.

Thanks

[marline]

Thanks again for your reply,

There were no abnormalities in my on my exam. My reflexes were normal.

No were no areas that I felt the pins felt different.

I have no problems with my balance.

At times my arms are, at times my legs, but I would say mostly my legs are weaker.

Both lower and upper legs, they take turns. Same with my arms, sometimes its upper sometimes its lower.

They feel weak, but function ok, like in the mornings, when I lay in bed, I can feel my legs are weak, but I can still get up and do everything.

nerves and muscles of the head and eyes- dont think this was done
e close look into both eyes- yes he did, it was ok
test of strength of all major muscle groups yes, it was ok
tendon reflexes at elbows, wrists, knees and ankles - this is important- yes, ok
sensation test -sharp/dull - all over-yes, i did ok
vibration test in all 4 extremities- no this was not done
walking - regular, on toes, on heels- yes did ok
coordination - finger to nose, alternating hand movements- yes did ok
balance with your eyes closed- no did not
scratching the bottoms of your feet- yes did ok

Thank you so much for helping me out, I am only 26 years old, just got married and it's very unfortunate that all this is happening to me, I want to start a family but I am very scared.

Marline

[Quixotic1]

I repeat:  Your neurologist HAS NOT ruled out MS.  Many regular neuro's feel that when the MRI of the brain is normal, then they can comfortably exclude MS.  This only indicates they are not well informed about MS or they are lazy.  If there are reported symptoms suggestive of MS attacks, or there are abnormalities on the neurological exam, then the next proper step in the work up is to FIND A NEW NEUROLOGIST.  When a person presents with neurological findings and the MRI is normal, then the work up must proceed to find out what the problem is. It is not a diagnosis to say "The MRI is normal."  I believe this neurologist has built a bias which could make him overlook subtle abnormalities in your exam.  

Were there any abnormalities on your exam?  What were your reflexes like?  Very brisk or hyperactive?  Or, when he tapped your knees and ankles was there no movement at all?

When the doctor checks you for sensitivity to pin-***** vs dull were there any areas where you couldn't tell the difference?

How is your balance?

Would you say your arms or your legs are weaker - or are they about they same?

Would you say that your muscles in your lower or upper legs are weakest?

What about the muscles in your arms?  upper arms or lower arms being weaker.

Can you tell if they are actually weaker (like there are things you can't do now) or do they "feel" weak, but function okay if you need them to.

So far, it's clear that you have a neurological process going on, but to my mind it doesn't necessarily point to MS (and definitely NOT to ALS), but you need to find a new neurologist.

When you meet the new neurologist, be calm, but firm.  Try not to describe things in a very dramatic way, but also don't minimize them.  Say, "Something is wrong!  I'm losing strength in my (whichever muscles they are) muscles.  This is not anxiety.  Please take me seriously and check me out."

Write up a timeline of how your symptoms showed up, where they appeared and when the different episode appeared.  Use a new short paragraph for each type of symptom that you have, like electrical sensations, muscle fatigue and soreness, tightness around your chest, pain in your mid-back, hot and cold sensations.  Try to be specific don't say "hands" if it is actually the right hand and the top of your left wrist.

Mention the anxiety by saying something like " I am not a person who has a lot of anxiety about my health, but these things really do have me upset.  Yes, now I'm anxious, but I'm anxious because SOMETHING IS WRONG."  Do not say that you think you may have MS.

The way your symptoms began with the electrical sensations going all through your body is NOT at all characteristic of how an attack of MS would happen.  The symptoms of MS respond to lesions that are in discreet parts of the brain and spine.  They would cause symptoms, especially sensations to be here and there, but not everywhere.

There are other neurological illnesses that can present with symmetrical paresthesias and muscle weakness, but with a normal MRI of the brain and spine.  You need some blood tests, and you will likely need a spinal tap.  You may need some nerve and muscle studies.

If you would, please answer my question about anything that was abnormal on your neurological exam.  I am presuming ( and it may be a big presumption) that the neurologist did a thorough exam.  For the basic exam this would be :

nerves and muscles of the head and eyes,
e close look into both eyes
test of strength of all major muscle groups
tendon reflexes at elbows, wrists, knees and ankles - this is important
sensation test -sharp/dull - all over
vibration test in all 4 extremities
walking - regular, on toes, on heels
coordination - finger to nose, alternating hand movements
balance with your eyes closed
scratching the bottoms of your feet

So, If you could answer each the new questions, I'll try to pin my thoughts down.

Quix

[marline]

Thank so much for your reply

It was more of an electic shock feeling and it was all over my body, including my face, it would come and go every few minutes.

For the next 2 months tingling was again all over my body, limbs, feet, legs and arms.

My vision for about 2 days became a bit like double vision but total double vision, I went to the ophthmalogist and they said my eyes were fine and it went away on it's own.

Well I knew whatever I was feeling was not normal, so I kept on dragging myself to the hospital hoping for answers, because I knew something was wrong. Having pins and needles and tingling out of nowhere one night was scary, I wanted answers as to what was happening to my body.  I didn't feel like I was dying but I knew something was wrong.

Mri's were not done with injected contrast.

I am a bit anxious but I was never anxious about health things until all these things popped up.

The symptoms I have now is muscle twitching, muscle pain (my legs and arms feel like I have worked out for hours) and they feel weak. MY mid back hurts very badly, right where my bra snaps.  Also when at night I try to sleep at night I get this weird sensation around my chest area, it's not painful, more like I need to breath really heavy to catch my breathe, this only happens when I am trying to sleep.

I was suspicious of ms when I started checking my symptoms online and ms would always come up.

My neuro has ruled out ms, he says your mri's are normal.  I tell him about 50 symptoms I am having and he says your mri is normal.

I know deep in my heart that I am not anxious and thats whats causing my symptoms, I know that I have symptoms and that's whats causing me to be anxious, but I can schedule to see someone.

I think I covered all questions.

Thanks again and I hope to hear what you think...

[karzme]

I understand what you are gong through( I'm sure alot of people say that), but I do. I have similar symtoms to you. I was diagnosed with MS, though I do have lesions on brain and spine. Have you tried seeing another Neurologist, for an opinion. That's what I had to do. I have also been te ER 3 times since May. I didn't know tingling and etc, was due to MS, until later. Hang in there and keep us posted. Wish you well.

[Quixotic1]

I don't know that I can help you know what is going on with you, but I hope I can give you some ideas about sorting it out.

I suspect that the incident with the medicine ball has nothing at all to do with what you are going through.

First, there are a lot of questions which will help.

When the pins and needles sensation woke you up that first night where were they?  Your say "throughout" your body.  Face, all your limbs, where specifically?  I'm sure that was very frightening.  I don't believe that symptoms of anxiety present for the first time in the middle of one's sleep.

For the next 2 months - where were the tinglings?  Did you have any change in your vision?  Have you seen an ophthamologist for the eye pain?

What about the symptoms have made you feel like you needed to be seen in the ER?  Six visits to the ER sound like an over-reaction to "pins and needles" sensation.  Did you feel like you were in danger of dying?  Did the ER feel you were having panic attacks?  I am not being judgmental.   Even if you were having them it doesn't mean that you weren't also having frightening symptoms.

Were your MRI's done with injected contrast?

Be really honest here...Are you, in general a very anxious person?  Please note that being anxious already doesn't mean nothing is wrong, but it does change (unfortunately) how medical professionals may view you.

Where are the symptoms now?  be very specific.

What has made you suspect that your symptoms mean MS?  Do you know someone with MS?  a family member?

The other symptoms that you mention especially the difficulty swallowing and the slurring of speech are especially common in people who have become anxious about their health neurologically.  It's a viscious cycle of being hyperaware of how things are going an if there is a slight odd sensation or problem then the anxiety magnifies it.

Your neuro has NOT "ruled out MS," but it also isn't clear that that is what is wrong.  I have a couple recommendations for you.

It is clear you are anxious - and it makes total sense because you have some very scary symptoms.  I recommend that you see a psychologist or psychiatrist.  I know this doesn't seem right, but a professional can exam you and help verify that you are anxious BECAUSE of the symptoms rather than you HAVE symptoms because you are anxious.  Do you see the difference?

If you are having severe anxiety getting it treated will help you evaluate other symptoms better. It will also help you make it through the work up of your symptoms better.  Many of us here have faced symptoms without a diagnosis and disbelieving doctors.   Anxiety magnifies our perceptions of all symptoms and can make them worse than they are.  The therapist then can also act on your behalf to convince the medical doctors to take you more seriously.

Could you ask your doctor for a referrral to physical therapy to carefully measure your muscle strength?  Or alternately, a professional trainer at a gym could help you determine if you do have "major muscle weakness."

I think you should write up a "timeline" of all the symptoms your have had and of the medical workup.  Get copies of all of your doctors notes, your MRI reports and your lab tests.  Get everything in chronological order.

When you have your information and maybe some documentation of weakness, you need to find another neurologist.  The first one has written you off and you will likely get nowhere with him/her.  It is very important to discuss your symptoms as objectively as you can without using dramatic language.  It's not fair, but if you come across as "hysterical" you lose an opportunity to get heard all the way through.

If you would answer the questions I asked, we can talk about what should come next in your work up. Okay?

Quix