Symptoms of MS.

[Victorl_]

First of all, sorry about my english. It's been four weeks I've been experencing strange symptoms. It started when I was exercising in a bike late at night (by that time I was having four hours exercise a day) and felt a strange chill on my entire left side. I thought was just the cold of night. But in the morning, my I was feeling weakness/pain in my left leg, I couldn't make exercise. Two days later I was still feeling it, plus a low back pain. I went to ER thinking about a discal hernia, but the exams and x-ray were normal. Still, I was feeling my leg strange. In that day, later, I started to realize that when I touched (light touch) my body in the left side (specially abdomen) I felt that same chills pass through my left side, specially in the leg, abdomen and back of my head. I've been then to a neurologist. I told her I have a history of fasciculations too and she ordered EMG and MRI, to rule out ALS and MS. All came normal, but I saw on Internet it doesn't means I really don't have MS and I'm desperate. The weakness in leg seems to have gone, but I feel even more the chills on my left side, sometimes even without a touch. I'm very nervous about diseases since I have suspected of Cushing Syndrome (what have been ruled out). I can't stop thinking about MS. What are your thoughts? What's the possibilitys besides this symptoms? And there's something else I can do to rule this out? Thank you very much.

[uniqueallen]

You may need to have testing done to check for parathyroid problems.  Testing should include serum calcium, PTH essay, vitamin D, ionized calcium and PO4.  They may also want a 24 hour urine study to check for excessive calcium.   I was diagnosed with primary hyperparathyroidism and surgery is very simple when done with the minially invasive procedure.

[mattsnow71]

I keep wondering - of all of the people that describe "mild" neurological symptoms - how many eventually develop more significant symptoms? How many end up getting diagnosed with something, anything, eventually, versus just end up living with various symptoms for the next 20 years or more? For how many people do those symptoms get worse or better?

Even many of the PWMS that I read about, say that they had symptoms for years before being diagnosed - what were those symptoms like for all of those years? Did it start out mild and then grow? Or is it more typical that a PWMS started out with bigger problems?

And how many that had a diagnosis quickly, then subsequent to that diagnosis, recall smaller, more mild symptoms that did not trouble them enough to make them start thinking about the possibility of a serious problem? I.e. they did not realize that there was a problem when it was small stuff, but then figured it out when the big stuff arrived?

I do not have ON or weakness or parasthesias of entire limbs, or fatigue or L'hermittes, or bladder or speech problems or lesions on an MRI or anything in the list of nasty symptoms which are all that you can find on line or in the literature when you try to find out about MS, but I do have nearly daily mild, neurlogical symptoms that seem very very localized - sometimes affecting a single nerve fiber, it seems. How many MS patients started out with mild events that eventually progressed to something more serious or does that not happen? How many simply get whacked with the big stuff from the beginning?

My main personal concerns are:

1. can i estimate where things are headed for myself?
2. if it can be established that i am on a path that will eventually likely lead to more serious issues, then when should i start drug treatment?

It seems like any of the collective information that exists with respect to MS really only picks up when the big stuff hits, and it is not clear to me that any history of the development of individual cases is ever investigated to allow an earlier determination of the existence of a case of MS.

Granted, there is a great difficulty in establishing a common pattern of development in the disease, since it is so variable, but is that a reason to ignore the question altogether? Or is there a set of information somewhere that does describe various possible developmental courses of the progression of the disease that I have simply been unable to locate?

I'd really rather most honestly have someone tell me definitively, "you're just crazy" - but if that is based on a lack of information, it just isn't helpful. A more helpful answer is: "You're symptoms are mild enough that they are typically ignored by the medical community - come back when you cannot stand up, or when you cannot see, etc." And again, I understand that those are the people that need more of the attention of the medical community and more help.

I am going to guess that we simply do not have enough resources to attempt to define the early signs of this disease - I'd think that a typical neurologist might collect a good history of a patient that finally does have the big symptoms and a definite case of MS - so that information on early signs should be written down in many places, and perhaps only needs to be collected and reviewed. But maybe also, there really isn't any slow-moving train of history that is interesting for those patients. That is the information that I am looking for....a collection of histories: what happened first?

[mattsnow71]

SHERMA - I Read your comments with interest - you say that you have been dx MS 7 yrs and yet, you are confident that it was going on before that. What sort of symptoms did you experience and with what frequency? And what symptoms have you had since dx?
I am one of those people that wonders whether I have MS because I have started to get all sorts of odd sensations that are nearly daily occurrences and that I never had to deal with before. I have looked at other conditions that might cause neurological symptoms, and none of the lists of symptoms match what I experience, leaving pretty much only MS. But nothing shows on MRI and MS specialists almost laugh at me and say "anxiety" but it quite certainly is NOT. You say yours is mild - I would like to hear more of known MS patients' experiences and symptoms to try to determine if I have something similar, and if so, where does it lead? I have a post with description of some symptoms in early january. Mostly, it's very mild things, but noticeable.
Slight pressure on toes, individual vibrating strings inside of groin, vibrating patches on thigh or under arch of foot, tingling spot on nostril, numb toe, ear clicking, a few bouts of vertigo over 8 years, there's more...

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
     The symptoms and story that you relate are non-specific and do not indicate one particular disorder.  The symptoms of left leg weakness and pain along with a 'chill sensation' over your left side could be related to a problem in your cervical spine.  There are many pathological processes that can occur at this site including multiple sclerosis (MS), herniated disc, tumors, vascular malformations, infections, etc. that might compress the spinal cord in this region.    I would suggest a MRI of the cervical spine with contrast to evaluate for these possibilities.  Additional information may also be obtained from a lumbar puncture (to evaluate for inflammation with tourtelotte panel, IgG index, oligoclonal bands) and visual evoked potentials.  Given your history of low back pain you might also consider a MRI of the lumbar spine as well (but pathology at this location could not explain the numbness in abdomen etc).  
I hope this has been helpful.

[LPNStudnt2007]

Hi all,
I know how everyone on here feels... I used to post on here a couple years ago over my neuro symptoms under a different I.D. I never got any answers, and got sick of researching. However, my symptoms seem to be bothering me a little lately, so I figured I`d post again. I`m a 26 yr. old female from VA. After I had my daughter in `02 I started having neurological symptoms. I started having tingling and numbness in my hands and feet, electric shock sensations that would go through my body, and I began to twitch all over. I had lots of testing done, including brain MRI`s & all came back as normal. I`ve seen several doctors including neurologists, and no answers. One neurologist said it could be MS, but anything is possible, no diagnosis. All of my symptoms have almost cleared up, except the inside part of my left foot near my ankle gets numb sometimes. I also twitch all over from the waist down daily, and I have an overactive bladder, and recurrent urinary tract infections. I`m a nursing student, so I know this isn`t normal. I`m getting so frustrated w/ all of this... Any other ladies out there w/ similar problems? Thanks...

[(Not so) Spunky]

This is something I just found out tonight- a few hours ago actually- so I haven't had alot of time to research, but my neuro's were pretty much set on me having MS but I think that will be ruled out now. I make sure that I always request a copy of all tests I have done, just for my own info. Today I got my MRI results of my entire spine (not head, just cervical thru lumbral) and the finidngs were this: I have a Chiari 1 malformation, with syringohydromyelia. Which I have read is somewhat rare, but has a much better outcome then MS. If caught early enough, it can't stop progression of nerve damage, however cannot undo any damage already done. The only way I can describe it is that your brain has 2 "tonsils" on each side of your neck.. When they extend beyond 4-5mm, your brain basically is allowed more room to drop into the area where your spinal cord starts and it affects the nerve direction. That's the Chiari part. The other long *** word is a cyst that forms and blocks spinal fluid from going up or down carrying the impulses. Like I said, I literally just found out 3 hours ago so I'm sure there's more too it, but it seems to have the same symptoms of MS. It also is rare so most Dr's don't tend to look for it. It is usually caught while looking for something else. I would definitely talk to your dr's about this unless they have ruled that out. whatever damage is done, is done, but it can stop progression. Surgery seems to be the only course to stop it, and i hear it's a very basic procedure. I go to my neuro tomorrow so I will let you know what more I find out, as I have NUMEROUS questions now!!

[sherma]

I do agree you.  There are many conditions that to indeed mimic MS, the only sure fire way of a dx is with the MRI with flare and contrast agent.  

However I can fully understand why many people are nervous about the POSSIBILITY of MS - for me when I was dx I thought my world had come to an end - nothing worse that the doc telling you that you have a life changing condition and it takes some getting used to - believe me I have been there.  

I also believe that if you do indeed have MS which I hope you don't and going by the symptoms that you have given I would doubt it (my opinion only by the way)

Also please believe your neuros.

[aravyn007]

Why does everyone always assume they have MS? MS is VERY rare with only about 350,000 cases in the United States and 2.5 million worldwide. That means that only 350,000 out of more than 301,000,000 in the US have MS and 2.5 million out of more than 6.5 billion in the world. It's rare. I don't mean to belittle those out there with the disease (my father has MS) but it is still rare. There are hundreds of different neurological disorders that share symptoms with MS that are less serious and treatable. Not that MS isn't treatable. My father is perfectly fine and has not had an attack since his mid-30's. He's now 65. It depends on the severity and type of MS that you have. I don't mean to be harsh but I don't like it when someone automatically assumes the worst. It's like saying, "I have a headache so it must be a tumor." Yes, tumors can cause headaches but Occam's razor suggests that it is just a headache.

That being said, the cold sensation you are feeling could be a nerve or muscle problem. It could be a circulation issue. It could be sciatica. It could be Lyme Disease. The list could go on and on and on and on. It's probably not MS.

Anclerson, you should also be checked for Lyme's disease and have your thyroid checked as suggested in the above reply. Hormone levels change daily, even hourly so something could be going on that they can't see right now. Follow up blood tests and more examinations are necessary at this point.

[Annie62]

If you haven't already gotten thyroid testing done, you might want to mention that to your doctor.  You said hormones were all ok, but I don't know if you meant thyroid as well.  It can cause many, if not all, of the symptoms you mentioned.  

[sherma]

HI.

I have MS dx 7 years now, but thinking back probably had it way before then.  I am fully mobile and they have given me the prognosis of bengn/RR.

From what your saying about feeling a coldness I have not heard of that before, normally it's a burning type sensation especially when moving your head - this is called "l'hermittes" sign and means that you have lesions on the spinal cord.

Are you sure it's a cold feeling and not a burning sensation??  When they gave you the MRI did you have the drug enhancing (this is called Gadolinium and it makes the lesions very pronounced) or did they "flare" the MRI??  This is important because if they did either of the above and they found no lesions, then I would be pretty confident that you don't have MS.

I know many people with MS and also some really excellent websites to visit - and not just the quack websites that are filled with mis-information.  You MUST be very careful what your reading on the internet.  The MRI's are very sophisticated and I am sure if they had found anything there they would have told you - it's the law.

If you would like me to point you in the right direction on the internet - on where to find good information let me know.

Trust your neuro.  

[Anclerson]

Oh I forgot one other symptom, I have been getting very dry skin esp. on my face and scalp.

[Anclerson]

I wanted to start my own post, but apparently they are maxed out so I decided I would post here. I'm not sure whether my symptoms indicate MS or Parkinson's or who knows what.  Here's the story: About 4 months ago I noticed that I was getting constipated and having erection problems.  I am only 21 and have never had problems with either until now. I have had all the blood tests done and seen two urologists and my results have indicated that I have normal levels of everything (and I mean everything! no diabetes, hormone levels are all fine, no high cholesterol, testicles are fine, etc.). The last urologist suggested that I may have the early signs of a neurological disorder. My symptoms are moderate erectile dysfunction and constipation, fatigue, depression, decreased flexibility, poor balance, dizziness, and mild headaches. I exercise daily, take a daily vitamin, and have a well balanced diet. Does this ring any bells for anyone? Please let me know. I'm very concerned and losing hope.

[worried415]

just wanted to know what your bladder symptoms are...
i have had ms symptoms for many years and it started with bladder problems.  thanks.

[Mellycat]

Re: your question about my bladders symptoms.

About 10 years ago I had recurrent bladder infections, or so I thought. Horrible painful ones. Following urine testing, no infection would be found. I was sent to a urologist and went through alot of testing, including having a procedure at hospital where the urologist used a scope and camera to examine inside my bladder. Nothing was found to explain the bladder problems I was having, but he was able to see I could not fully empty my bladder and also that it was severely spastic. It would just come and go. Sometimes it would be a year or two between flares. Then I could go months off/on again with problems. It has not been fun let me tell you.
I need to use the bathroom upwards of 20-30 times per day, no exaggeration. I only ever can manage to empty my bladder a very little bit. I get bladder spasms. About a year and a half ago the spasms were so severe it felt like a abdominal organ was rupturing, I didn't realize even that it was the bladder, it was severe. Until I tried to urinate. Not a drop could come out. Had a rush trip to ER screaming with pain and unable to stand. It has continued pretty steady since then, with a few periods of relief but they don't last. Ironically just last night it got out of control nearly as bad as that experience a year and a half ago. I should really have gone to the ER but I am just so sick of being in that place, the wait, etc. I took 2 strong pain pills that would make me so loopy I wouldn't care, just to fall asleep and avoid ER. This morning I was able to pass urine and the spasms are bearable at least, although not gone. I can't stand pain meds, take them next to never, I am developing a disconcerting level of pain tolerance so sometimes I have to be doubled over in agony before I even pay attention to just how bad a shape I am in.
I have had 2 episodes in the past 2 months where I lost all control of the bladder. I had no sensation it was emptying at all until my pants were wet. I cried hard those 2 days let me tell you. I am only 32 years old. Now I am having some mild leaking of urine from time to time, only when I stand up from a sitting position.
Still, the biggest issue for me is the spasms, they can take my breath right away and I have been bedridden from the pain several times.

[Mellycat]

I have many similar symptoms as well, and additional symptoms. Mine also appeared suggestive of MS. I had normal MRI of brain (havent' had spine done yet) and a normal EMG. Well the only abnormality in EMG was my muscles in my legs still sparking the machine even at rest when they shouldn't be doing that. My legs are spastic, the physiatrist performing EMG said definitly a neuro issue (for legs anyhow). I have also seen urologist and been termed to have "neurogenic bladder". The list goes on and on. However nothing shows on the brain. I have more tests to go to and first neuro appointment next week. If spine is clear, then MS is not looking like the answer for me, and I've ruled many things out before the MS investigation began. Sometimes it can take a very long time to find the answer when it comes to neuro issues. That doesn't make it any less real and valid. Hang in there and continue to pursue testing through medical professionals. I have learned that even without a diagnosis of any specific "disease or disorder", I have a right to advocate for treatment of the worst symptoms. For example I am now on baclofen for the spasticity, on medication for neuro bladder etc. I would think it can't hurt to talk to the doctors you are seeing about treating the symptoms. Perhaps they already are.
Best of luck!

[hm2007]

I have those chills that go down my legs too.  But I have tons of other "MS" signs.  Still going through the tests, but so far the doctors think it's something else.  I've had an MRI of the spine and EMG which both came out normal.  Blood tests also normal.