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BJ10 Donating Member (75 posts) Send PM | Profile | Ignore Wed Sep-16-09 04:51 PM
Original message
Getting checked for MS... :-(
I've been experiencing numbness all over my body and my 46 year-old mother has already been diagnosed. I could not see a Neurologist until October so I'll keep you guys informed. I'm only 30 and I hope to god it's something else...any ideas?
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Warpy Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Sep-16-09 05:11 PM
Response to Original message
1. MS is chronic, incurable, and progressive
but the good news is that proper treatment can lengthen the periods of remission and buy a lot of good time.

Good quality of life can be maintained for many people for decades after diagnosis.

You don't even know if you have it yet. If you do get diagnosed with it, I'll be more specific.
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helderheid Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Feb-04-11 11:33 PM
Response to Reply #1
14. I've starred the symptoms I have - this is from someone's personal page - not a doctor

Ataxia
Incoordination of the limbs results in unsteadiness when walking, but may affect the upper body affecting eyes, speech and arms.
* Brain Fog
Inability to concentrate, absent-mindedness, lack of spatial awareness. Not to mention the many 'senior moments' that everyone gets occasionally.
Optic Neuritis
Blurred Vision, Eye Pain, Loss of Colour Vision, Blindness. Any of these conditions can be very debilitating and extremely frightening. I have not suffered eye pain or loss of colour vision but I frequently have blurred vision even during periods of remission and endured near blindness for a period of several weeks during an early relapse.
Diplopia
Double Vision. Not so unnerving as neuritis but can be very unsettling. Prolonged bouts can be nauseating, and I found relief only by wearing an eye-patch over one eye. It didn't seem to matter which eye.
Movement & Sound Phosphenes
Flashing Lights when moving eyes or in response to a sudden noise. I often get this at night when in bed trying to fall asleep. Bright flashes of light or even ghostly apparition-like glows from the far side of the room.
* Paresis, Monoparesis, Paraparesis, Hemiparesis, Quadraparesis
Muscle Weakness. This may occur in the arms or the legs and, I feel, is closely associated with motor control problems.
* Spasticity
Stiffness or pain and a restriction of free movement of affected limbs. Muscles are contracted involuntarily.
Dysarthria
Slurred Speech. I find this more embarrassing than debilitating. I can hear myself, and I sound like some kind of a moron when it gets particularly bad. For some reason it appears to be worse when on the telephone.
Dysphasia, Aphasia
Impairment of communications. In severe case the term Aphasia is used.
* Dysphagia (only with boiled eggs for me or vitamins)
A difficulty swallowing, may lead to inhalation of food particles or liquid and cause choking.
* Muscle Atrophy
Muscle wastage from lack of use. I can vouch for this, from being an active runner, badminton and squash player and a competitive windsurfer with good solid legs to an inactive stick insect.
* Myoclonus, Myokymia
Twitching muscles. This one keeps me awake at night. I have no trouble with twitching muscles throughout the day, but as soon as I retire at night and start to drift off to sleep the legs start twitching, sometime quite violently, which makes me jump wide awake again.
Fasciculation
Don't know this one from personal experience, but I've heard it described as dimpling of the muscles.
* * Equinovarus Spasticity
Footdrop, Foot drags when walking. Coincidentally, this morning, I had a visit from a friend who has primary progressive multiple sclerosis and suffers from, amongst other things, footdrop. He was wearing a device bandaged around his leg with a wire running to a sensor in his shoe, which he told me was called FES - Functional Electrical Stimulation. This detects when he lifts his foot which causes a tiny electrical signal to be sent to his leg causing an involuntary lifting of the foot. This, apparently, helps him a great deal.
* Paraesthesia
Numbness and tingling. One of my earliest symptoms, which at the time was only in the extremities of hands and feet.
Frequent Micturition, Bladder Spasticity
Urinary Urgency. Makes it difficult to venture too far from a toilet as you really don't know when you will need to empty your bladder. Frustrating as you may feel an urgent need which could last several hours before it develops into a real need.
Erectile Dysfunction
The inability to achieve or maintain an erection, sometimes called impotence.
* Frigidity
The inability to become sexually aroused. Somewhat different from erectile dysfunctionality where arousal exists but the physical response does not.
* Anorgasmy
Inability to achieve orgasm. Often associated with a lack of sensory feeling in the genitalia.
Retrograde Ejaculation
Ejaculating into the bladder. Apparently this is a bladder problem as the bladder opening is not sealing closed at the point of ejaculation to prevent the semen entering the bladder.
Constipation
Difficulty with bowel movements. I have a pet theory on this, as I believe it to be a form of muscle spasm. The muscle of the sphincter goes into spasm, or a form of cramp, causing the sphincter to clamp shut effectively closing the door to any bowel movement.
Fecal Urgency
Bowel urgency. Along the same lines as Urinary Urgency and can be especially difficult if coupled with constipation.
Uhthoff's Symptom or Uhtoff's Phenomenon
Increase in symptom severity with heat. My vision is particularly sensitive to this giving me very blurred vision as soon as my body temperature rises. The level of blurring being in almost direct proportion to the temperature rise.
* Romberg's Sign
Patient sways or falls over when eyes are closed. A test for an underlying condition.
Gastroesophageal Reflux
Where the lower oesophageal sphincter fails to close properly allowing stomach acids to reflux into the oesophagus causing heartburn
Impaired Taste or Smell
A lesion on the trigeminal nerve may interfere with the perceived sensation of taste or smell.
** Sleeping Disorders
Problems regulating body temperature. Do you ever lie in bed at night shivering with cold and pull up the duvet extra close only to find that five minutes later you are perspiring like mad and have to throw the duvet off? Perhaps worse, you may be perspiring madly but still feel uncomfortably cold and wonder why you can't sleep.
Lhermitte's Sign
Bending of the neck can cause an electrical sensation to run down the spine.
Hoffman's Sign
Tapping the fingernail of the third or fourth finger produces a reflex action in the thumb.
Holmes' Sign
Patient is unable to react quickly to a suddenly removed resistance when pushing with an arm or a leg.
* Vertigo
Dizziness closely associated with imbalance.
* Concentration Lapses
Difficulty with problem solving and an inability to maintain concentration for any period of time. (see Brain Fog)
Trigeminal Neuralgia
Also called Tic Douloureux, Inflammation or constriction of the fifth cranial nerve that can cause intense pain around the face. Stabbing or electric-shock like pains to the scalp, forehead, eyes or around the cheeks and jaws. Considered by many to be the most painful affliction known to medicine.
Temperature Sense Reversal
Where the extremities experience temperature in reverse. Hot objects feel cold and cold objects feel hot.


This list of symptoms is not exhaustive, they are merely conditions I can relate to. Multiple Sclerosis symptoms have many manifestations and can occur in varying degrees of severity with different individuals. Any of the above, or other, symptoms should be referred to your GP or neurologist.

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Altoid_Cyclist Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Feb-09-11 04:33 PM
Response to Reply #14
15. My Neurologist kept sending me in for brain and neck MRI's since I have almost every one of the
symptoms listed. He just couldn't believe that I didn't have MS as well as a spinal cord injury which was already diagnosed. They finally determined that the spinal cord swelling had caused ischemic damage to the brain stem and cerebellum so at least we all finally knew what the hell was going on.

I can empathize with what you're going through. As all of my specialists told me, your life as you knew it is over. I don't know if it can help with MS, but I was able to get corrective lenses and vision therapy which really helped my vision problems. It is beyond frustrating trying to watch TV, drive a car or do just about anything when your brain, eyes and muscles won't speak to each other correctly.

On the bright side, I give my wife a lot of laughs since I'm always losing my balance or running into things because I don't have my depth perception.

I just keep reminding myself that a lot of people are a lot worse off than I am and that the specialists say that I should be in a lot worse condition. They say that there's no medical justification to explain why I'm even able to walk.....that's comforting I guess.

ONE DAY @ A TIME......

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mopinko Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Sep-16-09 08:56 PM
Response to Original message
2. the time spent in limbo can grey your hair.
waiting, waiting. waiting for a doc, waiting to get a test, waiting to hear the results. a hell in itself, it is.
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BJ10 Donating Member (75 posts) Send PM | Profile | Ignore Thu Sep-17-09 06:54 PM
Response to Reply #2
3. Tell me about it...
I'm calling the Neurologist every day to check for a cancellation.
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mopinko Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-17-09 09:24 PM
Response to Reply #3
4. i have a bipolar child. try waiting to get in to see the very rare
adolescent psychiatrist. kid was raging through the house, saving up her xanax then taking a handful.

remember that if worse comes to worse, hit the er. everything happens magically quickly in the er.
good luck.
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cpompilo Donating Member (125 posts) Send PM | Profile | Ignore Sat Sep-19-09 04:55 PM
Response to Original message
5. Please do some research before your appointment regarding
the use of Low dose Naltrexone for MS. Many MSer's are using it. The web address is www.LowDoseNaltrexone.org There are also several LDN Yahoo Groups and I think one is specific to MS. I am using LDN to treat my Crohn's Disease and am having excellent results.
I hope you do not have MS, but if you do you may want to try the LDN. Your mom too. MSer's using it report a halt in the progression of their symptoms. Pretty amazing. Plus it's cheap.
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CountAllVotes Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Sep-20-09 10:54 AM
Response to Reply #5
6. LDN can make you violently ill too
I happen to know. I is a huge HOAX.

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blondie58 Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Aug-26-10 11:36 AM
Response to Reply #5
8. I have also heard some good things about Low Dose Naltrexone. I asked my (MS specialist) doctor
about it, but he said that no- he didn't feel that it would be right for me. I am so disappointed. Keep in mind that many other things mimic MS, so it may very well not be. And at least now, they have some disease altering drugs that may change it in your individual case. Take care of yourself.
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Altoid_Cyclist Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Sep-30-09 11:33 AM
Response to Original message
7. If they don't find any evidence of MS, have you ever had any head or neck injuries?
I'm hoping that it isn't MS, but at least the numbness rules out a few things that are even worse.

My Neurologist(s) kept sending me in for MRI's because he/they were convinced that it had to be MS that was causing me to have all sorts of symptoms from my head to my toes. Numbness was one of the dominant symptoms.

They knew from previous MRI's that my neck was severely damaged from when I got hit on my bicycle by a car that ran a red light. What they couldn't figure out was why I had so many symptoms above the level of the C2 area. It was my Gastroenterologist, my ENT specialist, my speech pathologists and finally an Optometrist and vision therapist who all agreed that there had to be damage to the brain also. The Optometrist and vision therapist finally convinced me that I had to see a Neuro-opthamologist to confirm their theory of what was actually wrong.

Their theory turned out to be correct which wasn't good news, but at least it finally gave me an answer after 11 years of being told that they couldn't explain what was causing all the symptoms. What it turned out to be was that when I was hit by the car, it caused enough swelling of the spinal cord to cause permanent ischemic damage to the brain stem and cerebellum along with the spinal cord problems.

If you are having any symptoms in addition to the numbness and have had a head or neck injury, even a minor whiplash injury, this might be worth looking into.

Good luck with the MRI, and if it is MS, they have made progress on treating it and slowing the progression in a lot of cases. I know that it's easy to say, but try to stay positive. Best wishes when you have your test!
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Mojorabbit Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-03-10 01:58 AM
Response to Original message
9. I was dx with MS 25 years ago
and am doing really well. I am on an experimental drug which is a pill and feel better than I have in years. Hopefully that is not what you have but if so, I would be glad to answer any questions you might have. Hugs.
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helderheid Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jan-20-11 10:16 PM
Response to Original message
10. You and me both. I have an appointment with a neuro on the 7th of Feb - symptoms...
My right foot "dropped" and I couldn't flex it up for about a week. This was last Oct. New Year's day, it happened to my left foot. I'm also experiencing my pinkies curling in a bit and hand movements feel "awkward". Terrible memory as well as fatigue. I attributed that to thyroid problems and my hands to carpel tunnel. The drop foot (official term) is the real mystery.


Keep us posted. I'll check in after my appointment.
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helderheid Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jan-20-11 10:17 PM
Original message
Oh, and I'm 36 - I'm scared too.
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helderheid Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jan-20-11 10:17 PM
Response to Original message
11. Oh, and I'm 36 - I'm scared too.
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hedgehog Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Jan-21-11 01:12 PM
Response to Original message
12. There are some preliminary reports suggesting a connection between
low levels of Vitamin D and MS

http://www.ncbi.nlm.nih.gov/pubmed/9316607

It's worth discussing with your doctor. Getting your serum levels up to current recommendations falls into the category of "can't hurt, might help.".
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helderheid Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Feb-03-11 08:00 PM
Response to Reply #12
13. I just read something similar. Off to take my vitamin d3 5000
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hedgehog Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Mar-03-11 11:56 AM
Response to Original message
16. How'd you make out? Here's hoping for good news.
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