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MS or something else?
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MS or something else?

I really hope that someone can help me!  I am 27yrs old and have always been a pretty healthy person.  About 3 1/2 weeks ago, I woke up and had tingling sensations in both of my arms (elbows down to fingers and only on the top side of the arm, not the palm side)  and in both legs (knees down to toes and again, top side only).  A few days later I noticed some strong neck pain right where the neck and head come together.  I have been seen by several physicians and I have an appointment with a neurologist in Sept.  Every physician that I have seen so far has run me through a series of tests to check my strength, eyes, coordination and balance and my ability to sense pain, hot, cold etc.  They even did blood work to check for diabetes, thyroid problems, vitamin deficiency and cbc.  An x-ray of the cervical spine didnt show anything.   Everything has been normal so far and none of these physicians seem concerned about MS.  Ive been seeing a chiropractor for my back.  He thinks its possible that I may have pinced off some nerve passages in the neck and that could be causing the tingling.  After a few treatments with him, the tingling has gone down some but has not completely gone away.  Within the last couple days, I have noticed some very mild tingling in the right side of my face (cheek to chin area).  I have been very stressed out and find it hard to concentrate on my family.  Could you please give me some sort of an idea of what this could possible be?  Everyone has said that I dont show symptoms of MS but possible symptoms of peripheral neuropathy.  Could this also be possible?  Any help you can give is greatly appreciated
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Dear Nancy:

The diagnosis of MS is made by the patient having multiple episodes of muscle weakness and maybe sensory changes (hence the name of multiple sclerosis).  As your episode has basically been singular, it is too early to make the diagnosis of MS.  You you really don't describe muscle weakness, that would place MS very low on the list.  The more frequent presenting sign, 30% of patients, of MS is optical neuritis (painful blurring of vision) so again this is against the diagnosis of MS.  The distribution of your parasthesias is a bit unusual for a spinal cord problem as the etiology.  You have upper and lower cord symptoms.  Yes, it could be a polyneuropathy, meaning that multiple nerves are involved.  With your laboratory test thus far being normal and no history of alcohol, diabetes, metabolic disorders, tick bite, infection, family history of similar problems, collagen vascular disorder, tumor, drugs, etc I am not sure what to tell you.  It is still early in the process and since it is getting better that is a good sign.  I would see what the neurologist has to say.

I am sorry I couldn't be more specific.

Sincerely,

CCF Neuro MD
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Thank you so much for replying so quickly!  I really scared myself yesterday when I read some article on MS that stated a person may have tingling sensations with no other symptoms and still have MS.  I noticed after reading that that the tingling sensations really flared up again and I started to tremble.  I still feel the same way today.   As for my vision, I have an astigmatizm in my right eye.  After my first treatment with the chiropractor (who adjusted my neck) a few days ago, I noticed that the right eye was a little "distorted".  The chiropractor told me that this could be caused from a change in pressure right around the eyes  that happened when he adjusted the neck and that it should resolve itself once treatment is completed.   Could this be possible?

Nancy L
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Dear Nancy:

Hardly, not possible unless he was blocking off the CSF drainage.  If you had optic neuritis you would know.  There is no doubts because the symptoms are so classic.

Sincerely,

CCF Neuro MD
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Were you taking any medications when this started?
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No, the only medication I was using was cleocin which is  a topical solution for acne.  Why do you ask?

Nancy
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Since I have been "panicking" the last few days over this, I have noticed the symptoms have flarred up in the arms and legs.  When I go to grab something, I feel little needle pricks in my hands (ive been feeling those all along)  Are there other diseases that could have similar symptoms to mine?  Does optic neuritis come on suddenly or gradually?  I am having a little "blurring" in the right eye but im assuming its becaus of my astigmatism.  Could stress be a possiblity here?  Thank you so much for all the help--no one else seems as ready to answer my questions
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Nancy, Similar things started happening to me earlier this summer, with constant tingling, which started in legs and moved to hands and arms. I freaked out and went to see a neurologist ASAP. This guy told me it was panic/extreme anxiety. This could be your problem too. I was a little skeptical at first, but he prescribed klonopin, which has reduced the symptoms. I had an EMG done which was normal, and am scheduled for VEP. I would still advise checking out all medical causes but you might consider seeing a neuropsychiatrist (someone with a degree in neurology and psychiatry). This way you can be evaluated for all neurological and psychiatric conditions at once. I know how you feel. I sat here and read through all of the horrifying stories of people with MS, as well as those responding to my post with panic inducing advice. Its good to be informed, but easy to scare yourself to death. Do see a neurologist at least though, a GP or chiropractor probably won't know enought to really help you. I posted a letter in the forum about a month ago if you are interested in reading it. Take care and good luck.
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Dear Dr's:  
I have MS and recently posted on to an MS posting, it is do hard to get on now!  You suggested I get on one of the ABC drugs ASAP
as I had just gone through a rash of 1-2 week long exacerbations.I started Avonex last Thurs.  and have been having an exacerbation for 2 1\2 weeks now.  Fatigued, loss of balance, eyes moving when look to left only  and went thru a week  of Predisone treatment which did not do anything.  Neuro has now put me on a higher, longer dosage so hope it works.  

Wanted to thank you all for your input and time as it has been most beneficial to me and my Dr's.
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Dear Dr's:  
I have MS and recently posted on to an MS posting, it is so hard to get on now!  You suggested I get on one of the ABC drugs ASAP
as I had just gone through a rash of 1-2 week long exacerbations.I started Avonex last Thurs.  and have been having an exacerbation for 2 1\2 weeks now.  Fatigued, loss of balance, eyes moving when look to left only  and went thru a week  of Predisone treatment which did not do anything.  Neuro has now put me on a higher, longer dosage so hope it works.  

Wanted to thank you all for your input and time as it has been most beneficial to me and my Dr's. Thanks and God Bless you all.
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Thank you Joy for the comment.  I have noticed that since I have been reading up on MS that my symptoms seem to be worse.  Today I have this painful tingling sensation all over my head--it hurts!  I saw the doctor again today.  He said I show some early signs of MS, but I could also be showing signs of something else!  Did your symptoms just start up out of the blue or was there something going on in your life that brought them on?
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Dear Nancy:

Optic neuritis is painful loss of vision (the vast majority of the time).  You do not have the symptoms of optic neuritis.

CCF Neuro MD
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I saw my doctor again today.  For the past couple day I keep getting this throbing pain on the left side of my forehead and weird tingling pain all over my head.  He's considering ordering up a cat scan and is consulting with the neurologist about what else to do.  If some just touches my head, I get this burning tingling sensation all over for a little bit, then it subsides.  Personally, I think im going crazy.  The doc says it is possible that a lot of this could be stress induced.  Like I said before, my symptoms really started to flare up right when I was told there was a "possibility" of MS  UGH!  Right now I am just trying to stay calm and relax.  The doc prescribed Avozil (spelling?)  for tension.  Hopefully that will help with the anxiety.
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Dear Nancy:

Your symptoms do not sound like MS.  The tincture of time will let you know for sure, but it sounds doubtful.  See what the neurologist has to say.

Sincerely,

CCF Neuro MD
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what could be causing the sensations on my head (basically feels like someone  put an entire tube of  Icy Hot on my scalp)   Sometimes I feel it down the middle of my back as well.
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what could be causing the sensations on my head (basically feels like someone  put an entire tube of  Icy Hot on my scalp)   Sometimes I feel it down the middle of my back as well.
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My life was extremely stressful when my symptoms started. However, I didn't consciously feel panicky when the symptoms started. They came on all of a sudden and stayed. Certainly stay on with a doctor and have all the required tests. It's important to rule out all physical problems first. I am still in the process of testing but so far things look OK for me.  I have noticed that now that my constant tingling is gone, I still have temporary tingling when I feel anxious. Obviously, I have no way of knowing what is causing your problems, but if you can find my post in the archives, the doctor here responded to me that widespread numbness is usually caused by anxiety. I felt I needed to respond to your post because I too REALLY freaked out when I started reading all the stuff about early MS. It's important to keep in mind that MS is rare and other more binine things (i.e. anxiety) can cause similar symptoms. I know it's hard, but just try to relax until you get to the bottom of this. The odds are on your side. I hope everything works out OK.
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Did you ever get any shaking or painful tingling in your head?
Ive tried finding you posting, but I cant --what was it called?

Nancy
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Did you ever get any shaking or painful tingling in your head?
Ive tried finding you posting, but I cant --what was it called?

Nancy
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Look under the archives = "Constant tingling" July 24
I didn't have any painful tingling or shaking, but after a while I had twitching in my inner thighs and a weird vibrating feeling in my feet. You mentioned you saw the doctor, I hope he was a neurologist. In the meantime, ask your doctor to prescribe some klonopin or another antianxiety and see if that helps. It helped me a lot. It can't hurt, and it will help you deal with the stress of wondering what could be wrong with you. I will be out of town for a week, but I will check back when I return to see how you are doing. Good luck.
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I forgot to mention that my post is in the MS archive
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Dear Nancy:

Without examining you it is difficult to tell you.  From your description they are likely fasciculations, but on the scalp muscles and back muscles.

Sincerely,

CCF Neuro MD
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Fasciculations?  On the scalp muscles and back muscles?  Didnt full understand your statement sorry
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Sorry if this gets posted twice.  What are fasciculations ?  I also did not understand the rest of your statement
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Sorry if this gets posted twice.  What are fasciculations ?  I also did not understand the rest of your statement
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Dear Nancy:

Fasciculations are muscle twitches.  You described some trembling in your extremities, this might be muscle twitches or fasciculations.  This is the problem with internet medicine, I can not get you to show me what your telling me, so I am assuming.  sorry if you don't understand, tell me what you don't understand and I will go over it again.

CCF Neuro MD
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I do get a little shaky from time to time in both hands.  Lately though, I get this somewhat of a "burning" sensation on my head--as though I have sun burn on my scalp.  It isnt a constant feeling--it comes and goes.  I sill get a little slight "numbing" sensation on the right cheek at times (although it never goes completely numb)  Could this be caused by stress?  I also have TMJ, could this be related to this since I have been kinda stressed out lately?  Thanks again for all the help  I am suppose to see a neurologist here at the Portsmout Naval facility in Sept.  Ever heard anything about them?
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Thanks, I looked up the posting.  Im on  Ativan  which is helping to keep me "calm" till I see my neurologist.  Ill keep you posted
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Im am scheduled for a CT scan tomorrow of my head.  What exactly will a CT show?
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Nancy,
I just wanted to respond to your "panicking" about the symptoms you are having.  I have had trouble with tingling, buzzing, and twitching (see my 8/19 post).  I was absolutely terrified when I first had symptoms, and think this may have made some of my symptoms worse.  While I am still in the process of a diagnosis, I do notice that my tingling (which has subsided substantially) increased with my fatigue (new nursing mother) and with heightened anxiety.  While this is in no way diagnostic, I wanted to share my experience.  I understand the extreme anxiety that this brings on, and had a hard time getting through it.  This period of heightened awareness can also make one pay attention to things that one wouldn't have before.  I know how hard it is, but try to relax and get your mind off your symptoms, and you will feel a lot better.  The more busy/active I was, especially with other people, the more I was able to think of other things.  Also, the more I read/heard positive stories about people with MS (of which I found a lot), the less I panicked.  Good luck to you.
Robin
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Dear Nancy:

A CT will show boney landmarks, cerebrum anatomy (athough resolution is minimal compared to MRI), bleeds and infarcts.  This is not very good to look for demyelination.  It is very poor for cerebellar anatomy.

Sincerely,

CCF Neuro MD
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Im having an extremely bad day today.  My arm and hands as well as my legs and feet are tingling really bad.  My head and right side of my face are also tingling (kind of a burning sensation)  What could possible be wrong with me?  Right now I am so scarred!  I dont see a doctor again until tomorrow and then my CT scan is scheduled in the pm  I think they are ordering the CT scan just  as "ruling out" test.  If these arent signs and symptoms of MS, the what could possible be wrong with me?!?
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Nancy,

I know it is hard to maintain yourself when things start happening to your body that you dont understand.  I fully can relate to that.  I have been in the process of diagnoses now for 1.7 years.  I have myasthenia gravis antibodies and a borderline single fiber emg.  I have lost my lower reflexes and have a small amount in the arms.  Recently, I found out that I lost my gag reflex.  I have pins and needles in feet, lower legs, and hands.  I have had muscle weakness, which didnt start until April 99.  I have had right sided hemiparesis, and episodes where my gums went numb along with areas of my face.  I am currently experiencing numbness in my gums and face again.  I have numbness in my lower legs, feet, inner thighs, outer left buttocks, inner buttocks and upper to mid level back. Oh, not to forget the ice pick feeling that I have experienced in my lower right calf since Sunday.  I have asked for a temporary treatment of mg to see if that would help, but my neurologist will not, until he gets a definitive diagnoses as he feels two processes are going on and does not want the other process to be masked by medication.  So basically I have been living a nightmare with at least some definitive test answers regarding the mg, but not for the other symptoms that are not classic with mg.  What I have learned and am still learning, is that unless you get a grip on yourself, you will just keep stumbling and causing yourself more anxiety that you should not have to deal with.  It is hard not to worry, I know, worry is my middle name, but there has to be a stopping point, otherwise, it is going to affect your symptoms and your health in a negative way.  Let them do the tests, and let them rule out and rule in anything that they find from them and your clinical examination.  It is hard for the physicians on here to determine much more than what symptoms you have, which direction to go in based on symptoms and possible the results of your tests. Please give your doctors time, as sometimes those neurological illnesses can just baffle the life out of any doctor.  You will be in my thoughts Nancy.
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Nancy,
I hope you read my previous post.  I can't offer an explanations for your symptoms, but I really can empathize with your anxiety.  If you would like to email me, I'm at ***@****.  It might help to talk to someone who has experienced the anxiety and the waiting -- I know how hard it is.  Please feel free to write me.
Robin
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I am nearly off of the higher dose of Prednisone and starting to realize just how bad off I am now because with the Prednisone I feel so much better!  Wonder what does this?  I have had three Avonex shots so far but this visual exacerbation was already in progress when I started.  

I posted on MGH forum and got a reply that  "Predisone is not recommended for On as it is suggested that oral predisone increases the risk of a repeat ON.  Recommended that one take IV Solumedrol."

Is there anything to this?
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Dear Nancy:

It is almost impossible to tell you the wide range of things that can give you paraesthesias as you describe.  You need to sit down with your neurologist and person-to-person have your situation explained to you.  The internet is really made for this sort of thing as without actually doing the neurological exam, getting a detailed history, seeing the work up, it is impossible to tell someone they have a particular disease.

Sincerely,

CCF Neuro MD
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How are things going? Do you have any answers yet? Just checking in. YOU can email me at Z_I_L_C_H***@**** (this is an anonymous email address)
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couldnt get through to you on your email address.  So far everything is testing out normal.  My neurologist states its not a neurological problem as far as hes concerned.  A brain MRI showed up normal.  In the mean time, my symptoms have gotten worse.  I now get tingling and burning sensations throughout the body, and sometimes my right arm will feel really heavy and can cramp.  The doctors think it my be anxiety so they have put me on zoloft and Ativan.  I go in for a EMG next week and then I see another neurologist in 2 weeks.  Send me your email address again.  Thanks for staying in touch
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I have a definite visual  diff. in my left eye from my last exacerbation that has lasted 3 months.  Fatigue, weakness, imbalnce, lack of leg control for a few moments but often, left eye see's like looking thru a sunglass and things are much more blurred, dimmer i. e. colors,clouds are gray in left eye but white in right etc.  Neuro has been treating me thru his nurse thru the phone, put me on med for stomach due to lack of balance
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Dr. prescribed something for motion sickness. Called back and again nurse said Dr. prescribed prednisone pack for one week. No changed so called back and once again nurse handled it and said Dr. upped Prednisone dosage for next two weeks.  Still having some eye movement and loss of vision so called back and nurse said she knew Dr. would tell me to go see a eye Dr. that was an MD.  Neuro said was not Optic Neuritis as this was a painful condition and the center of your eye focus would be dark.

Went in to see my long time eye phys. who is an MD and a surgeon and he said the nerve  on my left eye was creamish colored which to him indicated ON but he was confused as my right eye also showed this.  I told him why my Neuro did not think it would be ON as I had no pain and center of vision was not black and he said ON does not have to be painful nor the center of vision black.  Why do most Neuro's say this????
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I can't tell you why, sorry.

CCF Neuro MD
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Approximately 5 weeks ago I woke up at night with severe pins and needles feeling in my right foot toe area.  It would occur every few nights.  Then a week later I experienced it while sitting and it would happen every night before falling asleep no matter how I lay.  I went to the doctor and she order blood work which showed normal results.  In the meantime I have been experiencing the pins and needle sensation in the left foot (not as severe) and tingling feeling in various areas of my body and headaches in the temple area.  I had an EMG 2 days ago which the doctor performing the test informally told me that it appeared that I didn't have any nerve damage in my feet. I do have some neck pain which I think is a result of a car accident 4 years ago and my right hip show early degeneration of the cartiliage which gives me hip pain.  Any ideas what could be happening?
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Dear Sharon:

Your symptoms are fairly non-descript for a particular disease process.  The short duration of your symptoms makes the diagnosis difficult to give a direction for you to think about.  I would see a neurologist.  Take the results of all your tests, get a good neurological exam and see what he/she thinks.  

sincerely,

CCF Neuro MD
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What happened to Nancy?
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Doctor and/or Nancy
You've just described what I am going through.  I am so sorry that I didn't find this site much earlier.  Can you update me on your situation.  Let me know how the meds have worked.  My neurologist believes the symptoms will go away once the medication kicks in.  I am currently on Zoloft and T... something or other to help me sleep.  I am so anxious.  The neurologist has ruled out Tumour, MS and stroke.  But since I started complaining about the numbness and the tingling and burning sensation, he has opted to send me for evoked potential testing.  This of course has hightened my anxiety as well.  Any help you can offer would be great. Katherine
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i feel isolated with my ms symptoms is there any treatment available to ease the numbness and tingling in my hands and feet

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Dear David:

I would speak with your neurologist as there are some medications that might help you.

CCF Neuro MD
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I am having severe lower back pain, with pain into the buttocks and weak leg's , also my neck is very painful, my eyes are blurred and i have a headache constantly.  I have muscle spasms in my right leg so bad I can not even hold my leg down with both of my arms. I also have muscle spasms in my right arm. Could someone please tell me if this could possibly be ms.

they have ran blood work, exray's and physical thereapy now for about 5 months, my condition is getting woarse instead of better

thank you
brenda
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Dear Brenda:

Your symptoms might be many different things.  I would see a neurologist and begin a thorough workup.

CCF Neuro MD
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I can't be I just read what I have been experiencing the last few weeks. I also had blood tests (looked o.k.) now i am going to see the nuerologist. The more I panick the worse it seems.
These symptoms mimick so many other diseases. Please reply to what you have found out. Your replys were from August 99.
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I hope whoever you wrote your posting to has answered you.

CCF Neuro MD
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Unable to Dx son

4/23/00

My 34 year old son has had progressive symptoms which culminated about 2 months ago after about 7months - one year brewing:
  Trouble Swallowing
  Severe headaches
  Left-sided weakness
  Chest pain
  Breathing difficulty
  Heartburn

Swallowing controlled by Reglan
Headaches controlled by Elavil-type med & Motrin
Heartburn controlled by Prilosec
Breathing:  CPAP machine at nite; Oxygen during the day, if needed

All tests have proven normal:  Brain MRI, Spinal Cord MRI, EMG, EMG of Phrenic nerve, blood tests, CT scans, etc.  His Neurologist is stumped while his breathing gets worse -- PFT tests -- 58% capacity.  Diaphragm weak.  Told to just get out there and walk.  

He tries to be as active as possible -- breathing becoming more difficult.  He joined a gym -- allowed by gym to work out 2 minutes per machine.  His blood pressure goes down - then spikes.  His heart rate goes down.  He is weakening.  He is tired.

Before all this started about 9 months - on year ago, he could bench 200lbs and play men's pickup ice hockey for 2-3hours at a time, worked two jobs.  He is about 206lbs.  So far, no weight loss.  Pulmonologist told him not to gain weight.

He is being followed by a Neurologist & a new Pulmonologist.  He is being sent for a second f/u Cardiology evaluation.  His neurologist is stumped but does not suspect ALS as he has gotten "objectively better".  Will be seeing neuro again next week.

Would appreciate some direction if you have some thoughts.

   many thanx!

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Hi!  I have been scared also because I've been reading up on MS.  For the past few months I've had a tingling sensation in myt head.  It seems to really bother me when I hear something emotional.  And since I have been reading MS, the bottom of my right foot has started tingling.  I am seeing a neurologist in May.
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i don't have the answer, i wish i did i have some what the same thing knot in back next to shoulder below neck and tingling going down my arm and fingers
i have had xrays mri chiropractor treatmeants antiinflammatoids still no real relief
my email is ***@**** if you find out something positive
if you want to leave your email address i will let you know what we find out from a nerve conduction test which is coming next
thanks and God bless you
mf
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I'm not sure if this is the correct time or place to post some questions that I have so please excuse me if I am out of line.  I know what your feeling of panic feels like.  I was diagnosed with optic neuritis afew days ago and have to wait for two weeks to see the optic nerve specialist.  I am pretty scared that I might have ms as well.  I do have the symptom of fatigue but do not yet show any of the others symptoms listed.  You mentioned that you were tested for thyroid disease.  I have hypothyroidism and am not sure if this could be the cause of the neuritis.  I saw in the post that 30% of optic nueritis patients go on to get ms.  I have seen #'s as high as 70%.  Any facts you can provide would be greatly apprecaited.
Tom
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