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17568 tn?1424973559

What is wrong with me - MS?

I am 36 years old.  In July, 1999, I developed inflammation in the inside of my cheek - left side. This lasted a few weeks.  I went to dr. and they did notice it being swollen but did not know why. In early Oct, 99, I was diagnosed with intermediate uveitis in left eye - retina was inflammed. This was treated with drops and went away after 6-8 wks. In mid Oct. I noticed tingling in my back, followed by soreness in upper back.  This lasted approx. one week. At the end of November I developed a burning type of sensation in my head - top left area.I had MRI done of head, results were normal.  This headache lasted approx. one month.  I felt good for a month, then the headache was back, this time I also felt it in back and top areas of head. I also had mid back pain - stabbing/burning pain and upper back soreness.  I also feel tingling in the upper back.  I also experienced the swollen inner cheek - this time both sides.   Uveitis came back mid January and is now almost gone. Dr. treated with prednisone injection. I have been seeing neurologist.  I am taking amitriptylin for head pain - 10 mg/day.  THis seems to help or it may be that the pain just left again.  Swollen inner cheek symptom just appeared again yesterday.  Other than that I feel fine for now.  Does this sound like MS to you?  I have suggested to neurolgist that I would like to have MRI of back done but he wants to wait. I have heard that optic neuritis is associated with MS, is this intermediate uveitis the same thing?  Is it also associated with MS? I just want to know what is wrong with me. Thank you for any info you can provide.
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Avatar universal
Dear Lee:

Thanks for the information.  However, Issac's syndrome usually only occurs in people from 20-30 and it never involves sensory findings.  The other entities are very broad terms and usually are only diagnosed after excluding other more worrisome diseases.

CCF Neuro MD
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Avatar universal
Lee
DEAR GINA   I AM SORRY I DID NOT SEE YOUR POST OR I WOULD HAVE WRITTEN EARLIER.  I DO NOT KNOW IF YOU HAVE THE SAME CONDITION I HAVE OR NOT HOWEVER THERE ARE SEVERAL BENIGN CONDITIONS THAT CAUSE SYMPTOMS SUCH AS YOU DESCRIBE.  THE DOCTORS AT MAYO CLINIC FINALLY DIAGNOSED ME WITH A PERIPHERAL NERVE HYPEREXCITABILITY SYNDROME.  MY RESEARCH IN THIS AREA SHOW THAT THERE ARE SEVERAL OF THESE SYNDROMES SUCH AS MUSCLE CRAMP-FASCICULATION SYNDROME,  PAIN FASCICULATION SYNDROME, ISAACS SYNDROME  AND BENIGN FASCICULATION SYNDROME.  SOME DOCTORS BELEIVE THESE ARE TRIGGERED BY A COMMON VIRUS.  THE GENERAL COURSE OF THESE SYNDROMES VARY WITH REMMISIONS AND EXACERBATIONS, SOMETIMES REMITTING ON THEIR OWN.  MY DOCTORS RECOMMENDED TEGRETOL OR DILANTIN TO REDUCE THE SYMPTOMS. BECAUSE THIS CONDITION IS BENIGN I HAVE CHOSEN NOT TO TAKE THE DRUGS . EXERCISE , MEDITATION AND VITAMIN SUPPLEMENTS HAVE SEEMED TO HELP ME.  I HOPE THIS INFO HELPS BUT I BELIEVE ONLY A DOCTOR CAN DIAGNOSE YOU AND RECOMMEND TREATMENT.  I TRULY HOPE YOU FEEL BETTER -GOD BLESS!
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Avatar universal
thanks for the comments.

CCF Neuro MD
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Avatar universal
Cristin,

I was thinking about your post and you mentioned you tested positive for some anti something or nothers.. you need to call your Dr and ask the nurse what did I test positive for, and did you do the Anti-Nuclear-antibody screening on me, if so what were my numbers, they rate it in Titers, if one falls above 1:40 they are considered higher risk of an auto-immune disease.  Like lupus i've heard of people like 1:160 or something like that.  See what happenes with connective tissue disorders is at times the blood vessels get inflamed and this can cause them to contract causing the raynauds, thats why you get burning and tingling.  Yet Raynauds can be primary meaning you do not have anything underlying causing it.  Just keep an eye on things and ask about your ANA, call your nurse today because like me, if you had to post on here, your Dr is not doing his/her job at making you comfortable.  If they tell you that your positive for something, you need to see a Rhumatologist <-sp?  See my feet dont hurt or burn, jut will look down and like wow, they are grey or blue, the entire foot not just my toes, even the soles of my feet, but when I bend my leg or straighten it, they go back to normal, and dont turn burning red or anything.  I will keep my eye on myself to, but its been a few years i've noticed it and so far my antibody test was normal, along with a sediment test that looks for inflamation in the body.  Good luck and keep us posted.
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Avatar universal
I get the blue feet, but not the hands.  I noticed my feet a few yrs back, they usually feel cold.  But we dont think its raynauds because they dont change to white then red, only blue then back to normal.  Typically   they say that raynauds might have some connection to disorders like Lupus or other connective tissue things.  But some can just have raynauds like you do and develop nothing else.  Did you say you had the ANA test done?  This would check for Lupus and other systematic diseases.  As raynauds tends to be one of the first symptoms, yet if your only having that problem and nothing else, just let it go, put it out of your mind unless your in alot of pain.  Worrying only makes problems worse.  I am the only blue footed person I know.  They called mine Cyonsis, lack of oxegen in the blood, but then what causes that?  Good question.  Anyhow hang in there! oh p.s. a gal told me she had A typical Raynauds and by taking Magnesium 500mg per day, it disappeared for her for 5 years not to return.  Maybe give that a try?
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Avatar universal
I also have a situation where I feel numbness and burning in my toes up to the ball of my feet, and they are white and blue in color.  Then off and on they get really swollen and red.  My hands do it worse!  It's really embarassing because it looks like I have put my hands in scalding hot water.  I was wondering if anyone else is having this.  It's been diagnosed as atypical raynaud's.  I can't help but think it's something else.  I tested positive for anticardiolipins???  I cannot find anything on this!! HELP!---thanks!
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Avatar universal
Dear Cindy,
I agree with the Doctor. and I share yur pains, For almost a year now, I have been suffering from numb feet, hands and face following a 2 hour traumatic ordeal with a snake in my yard. The numbness was replaced by shooting stabbing pains in my face, hands, back, thighs, head and basically everywhere, almost everytime I move get a neeedle stab, I saw five neurologists and had 8 MRI of everything. (Brain, entire spine, pelvis, neck)
My life was hell. I refused to believe that this was all due to anxiety. Eventually, I began limping on my right leg. Ortho and neuro could not explain major weakness in my right extremity. Only 32 yrs old, 2 children. Also had the choking sensation in throat on and off, extreme fatigue and muscualr spasms, incredibly painful joint pains and crwaling sensations under my skin. For a while, I was wondering if there was a difference between this and hell. Believe it or not, the treatment was not by a pill or a surgery. A friend recommended reading: 'The mindbody prescription" by John Sarno. You must fully believe, no matter how strange it sounds that this is all works of the unconscious. The repressed rage and repressed anxiety often (in patients where no evidence of neurological damage) expresses iteself through neuro-musculo-skeletal pain. And here is the trick, everytime you get these pains, and they are real pains, trust me I know, you must tell your mind, speak to it, "I know your game my friend, these symptoms are not serious, and there is nothing wrong with me physically" You can beat this thing in a matter of weeks by deprogrammming yourself and resuming normal daily life and physical activity. The book will show you how it is so simple and it is simply a matter of confronting your unconscious that is lying to you and giving you physical pain (in the form of nerve/joint) pain to deceive you and turn you away from the real issue happening inside your soul -) I am almost positive that this will work for you. GET THE BOOK IT HAS CURED THOUSANDS I am not a 100% cured but I am 50% to 75% better in a matter of three weeks I have been living with this hell since last August...So of thinking physical think mental that is the trick - everytime you think physical think mental instead you will find that your symptoms increase WHEN you are anxious, when you are worried about your condition which in turn produces more physical pain/numbness/etc. which in turn make you more anxious then you become enraged at your doctors and/or more anxious about your disabiltiy then you begin to search on the internt under neurological disorders and you begin to see pictures of yourself in a wheel chair and so on. Freud, had cured this woman who was paralyzed for six years - turns out to be rage for the death of her two children. The mind, is capable of doing the worst things to you, why not, if you think about it it had developed the nuclear bomb, terminates people on a regular basis because of their color and religion, and on and on and on.. Think rage and not physical illness, think what was the last set of emotions you experienced before you get the pain. And believe me when I tell you that the brain thinks amazingly. If it knows you have a bulged disk, it will produce pain around that area and in your legs to make you think it is from the bulge it is, that is how powerful it is. Scientifically, a bulge disc does not produce physical pain. 3 out of 10 in the streets will have a bulge disc anbd not evcen know about it. Beware of your emotions, face yourself. Are you happy at what you do? Are you happy where you are? or who you are with. The doc, with all respect looks at your physical symptoms for 10 minutes max and will tell you what you don't have thank god (MS or or or) But the big picture is you. You are experiencing real horrible physical pains...I believe you, the numbness and the tingling and the fatigue and the choking and the dizziness and the vertigo and the back and the feet and eventually depression because no one knows what you have. Think about it: ALL NEUROLOGISTS WILL AGREE THAT THE ONLY THING THAT CONTROL THE NERVES OF THE FACE: FACIAL NUMBNESS/EYE NUMBNESS IS THE BRAIIIIIIIN ! " It has been told over and over to me. It is the same Brain that gives orders to your joints, muscles, nerves all over your body. The health of that brain was slightly shaken by an emotional, anxious, overwhelming by a stressful event or set of events. Only you know better. As soon, as we understand and fully accept this diagnosis our physical pains begin to subside and eventually disappear in a matter of weeks, because you are saying to your brain: "I know why you are causing the pain, and you cannot do this to me anymore becasue I am now aware of why you are causing it" You will notice that immediatley you will have less pains until you are pain free in a matter of weeks. Your mind realizes that you have discovered the cause of the problem. You have uncovered its hideous plan. It can no longer do it to you. It siezes the pain, progressively. But you must find out also what has caused that pain to begin with, if it is your job, your husband, your lifestyle you must work to be HAPPIER immediately. Good luck to all. and please email me back and let me know how you are doing.
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Avatar universal
Dr

I have Multiple Sclerosis (which they said was not active at the moment)Fibromyalgia,hypo-gamma-globulin anemia and so many more things.The question I would like to ask is why is (CERVICAL RADICULOPATHY ) which they also said I have,is almost identical to MS..Or could I not have MS?The MRI showed inactive at the moment but it also said I could have other diseases that would show plaques?What other diseases would that be?
Thanx
Suzanne
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Avatar universal
Dear Gina:

I am sorry to say that I have never heard of hyperexcitable peripheral neuropathy.  A neuropathy is usually the loss of function not the gain of function.  There are some pain disorders that have increased sensitivity to pain, but these are usually the response to an insult such as trauma.  

Sorry,

CCF Neuro MD
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Avatar universal
Lee has vanished off the planet when I needed him most.. like hitting all 5 numbers in the super lotto, when the  6th one is about to be said, your cable goes out... ya know?

What is HYPEREXCITABLE PERIPHERAL NERVE DISORDER?  I mean I know its an over excited nervous system, but what causes it?  Is it treateable and does it go away?  is this a neuropathy ...  Please help, lee left me with a glimps of hope then vanished.  I cant figure out why my face is numb, inside of leg and arm.  the  face is all nerves and when all of them, even   the back and top of your head are   effected I dont get it.  Normal MRI and all.  HELP
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Avatar universal
Dr,

I've searched the web for hours, I cant find anything on this.  Could you tell me what it is, is it something terrible?  Any cure.  I cant seem to get ahold of Lee :(  Thank you
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Avatar universal
thanks for your comments. I hope you get together.

CCF Neuro MD
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Avatar universal
Lee,

Your the first human being I have ever encountered to have the exact same symptoms as me.  I mean EXACT.  Please would you email me at ***@****   I would really like to know what your prognosis is, medications etc. IM VERY scared with my situation and nobody I mean Nobody has any answes for me.. Please email me!!!

***@****
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Avatar universal
Lee
Dear Gina,  I too have blue feet.  My other symptoms are fasciculations weird tingling and vibrating sensations all over my body, facial "numbness", and sometimes joint pain.  I was diagnosed at Mayo clinic as having a hyperexcitable peripheral nerve disorder.  I understand blue feet are a common symptom of these type of disorders.
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Avatar universal

Dear DR., 2 yrs.ago i had a laminotomy  L4-5 and foraminotomies. after reducing the heavy dosage of pain meds 4 mthslaterI had a painful bout of what I described as 1oo's of bees stinging both
legs and was dx'd as inflammation of nerve roots.I cold not tolerate Neurontin. M.R.I showed a mass of scar tissue partially surrounding the bundle of nerves we allhave on spine, damage to spinal nerves that has caused both legs to contiue  and ache when I walk a short distance. Defacation causes much pressure., also bladder dysfunction.  my
question, do I consent to more surgery or a treatment program of a heavier dosage of percocet. I don't know what to decide.Neurology has proposed the treatment.I have not been viewed by surgeon.Sorry to be so lengthy. Lorraine
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Avatar universal
Hi Raynauds,

Yep this was my first impression, and when I searched the web it was linked mainly to Scleroderma (basically a death sentence)  But what got me was only about 500,000 people in the us have this,(scleroderma) could i be so misfortunate?  Anyhow its been noticeable for the past 2 years, seems to come and go, no pain etc.  No sores on my feet or fingers (only occurs in feet) Happens when in a hot shower, or just sitting down.  Never any burning.. seems they are like this on and off most of the day.  I think Raynauds are attacks that come and go, I dont think you get dozens per day, But I dotn know, im trying to put together the puzzle.

I never even cared about my occasional blue feet, im so tall I rarely look down at them, but 3 months ago when things started happening, leg tingle, facial numbness, all over body tingle, muscle twindes - I started looking at the entire picture, looking at everything with my body and maybe looking to hard.  Like the Dr mentioned above, could be the beginning of something, those ANA tests are good to  pick things up, but maybe I need to be full blown in one of the systematic disorders for it to show pos.  Im holding hope that since I noticed the blueness a few years back, it is not connected.  Im praying anxiety is the root cause, post pardum issues, lack of sleep etc.  Sometimes the blueness will be up the calfs to, its not acutally blue, but they are greyish or not that fresh pink color.  Cyanosis is lack of oxegen in the blood, can be caused by heart trouble or pulminary stuff, maybe I have a heart defect, but would it cause the above, numbness, tingle??  Very frustrating.  :(  I pray it goes away or an ansewr is found.
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Avatar universal
CCF Neuro:

Couldn't her blue feet be something like Raynaud's?
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Avatar universal
Dear Blue Foot:

I am happy that your tests came back normal.  That doesn't answer the question of why your getting cyanosis and temperature changes in your feet.  What tests don't tell us is what is going on before or will happen.  They can be predictive, although not necessarily accurate.  I would just keep tabs on things and see what is going on during the event.  Then if a pattern develops you can check with your doctor about what your experiencing.

CCF Neuro MD
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Avatar universal
Dear Dr,

My ANA came back normal.  Even the Sedimentation rate was normal despite the cold - 15. Rhumatic factors normal.  So apparently my Blue feet are a part of who I am?  They are the only part of me that gets real cold, but no sores or pain on my toes and never  color change in hands.  Since all was normal, apparently this is not an auto-immune situation?  Oh im sorry to be such a pain and ask you so many ???  Yours Truly,

Blue Foot
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Avatar universal
Dear Gina:

The only test that having a cold should influence is the sedimentation rate, it will cause it to be elevated somewhat.  But if you have a collagen vascular disease, it will be higher that a cold infection.  No, I have never heard of height of a person influencing cyanosis.  I do not think that your color change in your feet is caused by your height.  Just think of all the blue footed basketball players if that were true.

Sincerely,

CCF Neuro MD
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Avatar universal
Dr,

I had posted some time back about MS and you were so kind to answer my questions, (many thanks)  you have spent far much more time and been of much more help then my own Drs rushing me in and out of the factory line.  I truly thank you for your kindness.


Questions are:  Today had an ANA test also b12 and a Sediment? anyhow I am 2 days into a terrible COLD, will this effect the results (false pos)? (NOBODY in this hospital could answer this question, not even the phlebotomist)

2. Noticed my feet turn bluish (no pain involved) im a 5ft7in tall female, my Dr said due to height, have you ever heard of tall people getting blue feet?  I've heard it linked to horroble disorders, is this normal in your oppinion?

Thank you again if you get around to this.
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Avatar universal
Dear Cindy:

Sorry to hear about your problems.  The association with eye problems and MS is optic neuritis, not uveitis.  Uveitis is more associated with autoimmune disorders (collagen vascular disease) such as rheumatoid arthritis, SLE, etc.  A type of autoimmune disorder might also explain the parasthesias (burning pain).  Although MS can begin with parasthesias it is usually extremities and not facial.  The treatment with steriods would treat both MS and an autoimmune disorder, however, usually the dose is higher for MS treatment.  I would lean more toward some sort of autoimmune disorder such as collagen vascular problems and not MS.

Sincerely,

CCF Neuro MD
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