Hello all, I have read so many of these pages and the info has been great. I have not been DX with MS but there is suspicion for it because of intermittent paresthesia. Below is my history.

I am 34 female otherwise healthy Mom and wife.
I got Strep with a fever that I could not bring down and ended up in the ER in May 08. Two weeks later my neuro symptoms started. I felt very weak and legs were sore like I had the flu, went to Dr and blood work showed viral infection. Dr said remaining virus I will get over it. My knee (skin only) had a mild burning sensation without any reason which would last 10 - 15 secs on and off throughout the day. I got very dizzy and lightheaded for a few days and went back to Dr. He did blood work and said everything was back to normal, still must be effects of virus. I felt horrible, NO energy, no appetite, lightheaded, and sick. This went on for several weeks and I couldn't perform my job. I was referred to neurologist and passed neuro exam, EMG, and MRI of brain cervical spine was normal (with and w/o contrast). Neurologist said I think it is a virus, give it time and it will go away. From May to July my neuro symptoms increased to my forearm feeling like there was a band slightly constricting it; my temple tingling; the feeling of "chills" with no visual skin changes, and isolated to a small area like the top of one thigh. My toe at the tip feels less sensitive, like a band-aid is covering it. All of these feelings would only last seconds to a few minutes at the most, but they would come and go throughout the day. Some days would be good and the very next day would be "sick" again. My family Dr and Neuro looked for MS b/c of paresthesia but Neuro said that my symptoms did not match MS that she had seen and all my tests were normal. I stopped Zantac and everything I was taking in fear b/c I didn't know what my problem was and I wanted to see if I could get better. I did, almost all symptoms went away by Aug and everyone thought they would never come back. I started the Zantac again (very bad ulcer and reflux) and got a flu shot in Oct. Two days later the "chills" feeling came back and over the next few weeks, so did the others. I was soo depressed and afraid, anxious ALL the time. Neuro does not know why they came back and has ordered another MRI and will refer me to another Neuro for a spinal tap if I want. I had my Dr. order B12 serum. It was 283 with a note from lab stating 10% of patients have neurological symptoms with level below 400. Neuro said can have problems with level below 500! I started the cyano b12 shots 1ml every day for 7 days, then 1 per week for 4 weeks, then 1 per month. My symptoms are better. I stopped Zantac after reading it can cause b12 deficiency.
I am afraid of MS and I am trying not to put all my eggs into B12 being the case but with the weird intermittent paresthesia I can’t figure out any other reason, and neither can my Drs. I don’t want the spinal tap until last resort. If my MRI comes back normal tomorrow what should I ask my Dr to do next? My neuro is very nice and wants to help but she said after seeing her since June,” in my heart of hearts I don’t believe that you have MS, I think it may be a virus and sometimes we can’t find a reason for everything.” .

Have any of you ever heard of a virus lasting this long and presenting neuro symptoms?

I don’t have any pain and I have not fallen or had any vision problems. Neuro said my symptoms are peripheral and have to do w/sensory. During all this, for about 5 days my knee (area about two inches on skin) felt like a cold breeze was blowing on it? When I have the numbness sensations I check to see if it is really numb and it is NOT. I feel everything just slightly less during the “spells.”

Dr said in MS symptoms have to last for 24hrs to be considered a flare up, do mine count b/c they only last a few seconds but are coming and going through the day. They also change from day to day; my finger can feel numb for a few days then feel normal a few days, then back to numbness again. (when I say numb it is not really completely numb, just less sensitive.) Is Dr right or are there people out there that have theses feelings only for a few secs like me?

I also went to ENT and had many tests done for vertigo, again everything normal. Dr said I could be hypoglycemic when I feel light-headed and eating does make me feel better, but not 100%.

Is it possible that all of my problems could be due to overuse of PPI and low Vit b12? I don’t eat meat that much and my diet is not very healthy, but that is changing! Does this sound like early MS that anyone else has experienced? I have had blood drawn for everything many times over 6 months, diabetes, lupus, RA, only things off are B12 and Vitamin D.

I was a normal person before all this, now I worry ALL the TIME! After reading so much on the internet I am scared that I will wake up one day w/o vision or feel paralyzed, or that the “symptoms” won’t go away. I know that some people get diagnosed with MS when they don’t really have it, so I am afraid to go to a new Dr and they just diagnose me b/c of my paresthesia and no lesion on MRI. My second MRI that is tomorrow will be 6 months from my last. If it is normal does that lessen my chances even more of not having MS?

I feel like there are so many variables and I don't know which way to go.

Sorry for such a long and convoluted post !Thanks for any help!

I'm sorry to hear you've been going through so much.

B12 deficiency can cause a lot of nasty stuff to happen. Glad they have you on the shots and it seems to be helping.

I have low blood sugar too. Keeping something whole grain or a bag of nuts with you helps with that. I used to keep a can of peanuts in my desk to help when I needed it.

MS is very much a DX of exclusion since there are a lot of things that can mimic it. My clinical presentation during the exams was not the norm, but my leisons were. It took back to back changes on the MRI and exams to get my DX. All my bloodwork came back normal, even the vitamin D test (which was not usual according to my neuro).

After a flare, some symptoms linger and can come and go like you're describing.

If it were me, and this is only my personal opinion - you know your bod the best- If the MRI was still normal, I'd give the shots a chance to see if that's what's going on. If it shows something this time, then I'd go for the spinal tap. Regardless, if anything gets worse I'd try to find a neuro who is very familar with or is a specialist with MS.

Hope things get better for ya.

It is quite uncommon for us to have fleeting sensations like you are describing.

Normally we will have an attack, as they've described, where several symptoms will last for days --> months. We may recover partially (are left with "permanent" symptoms), or most often (in the early years), we will recover fully. Then we can go many months or years without anything new.

Once we have "permanent damage", symptoms may stir up from certain triggers, like over-heating, stress, infection, etc. They can be more fleeting symptoms, but they don't usually last for only 15 seconds. Normally they will last until we remove the "trigger", but it still may take several hours before the symptoms let up completely.

There are about 100 differential dx for MS, listed towards the end of this article:

http://www.neurology.wisc.edu/public...bs/Neuro_2.pdf

Many meds and even some vitamin deficiencies (like vitamin B) can cause symptoms like you are describing.

Your symptoms are one's that we experience, and I understand why it would "seem" this could be MS (to you and your doctors). The "patterns" just aren't fitting at this point, and the tests aren't not talking . . . so for now they won't likely find the MS if it exists.

I wouldn't give up on trying to find out what's wrong, and it sounds like your doctors are extremely thorough in trying to get to the bottom of it. It sounds like you are in very good hands!!

Cherie

i'm sorry you're going thru all this.
it can be very concerning.
but, please try to take a deep breath.
it would be very rare to wake up paralyzed or to die from MS, IF that's what you have.

sometimes it can take awhile for MS to be dx'd. it does sound like your dr is doing everything right. try to take one thing at a time.
start keeping a small sx journal with the date and list your sx's. it might be helpful to your dr.

you might even consider a 2nd opinion.
and, start to keep copies of your tests/results. and get copies of your mri's for your records. then, if you see another dr you can bring the info with you.

i hope you feel better soon and get the answers you need.

Thanks so much for everyone that responded! It can get pretty scary when things are wrong with your body and you can't find out why. My results for the second MRI of brain, c and t spine were normal! Yea! I have read that 5% of Ms is not detected on MRI but since I have had two six months apart I am hoping that this makes it even less of a possibility for me.

The intermittent thing is what is throwing everyone off. Even though my symptoms lasts for weeks, the duration is only seconds, many times a day. Mr Dr say this is not normal in MS, but it is not really normal in Vit b12 deficiency either. This is why no one knows what it is.

Have any of you heard of a virus causing problems with the nervous system, and it lasting for many months?

If an MRI is used to show lesions, which explain why people have problems in certain areas, then how are 5% of MSers not having any lesions? It seems like if I am having symptoms in complete different ares of my body, something would have shown up on MRIs. I have read that people have a single symptom, like numb fingers and it did not show up. But when others have described many different parts of their body being affected there are lesions. It is just so confusing!!

Thank you for sharing your thoughts and experiences with me, it really helps to learn from someone that has this disease or felt the same things.

Hi Lady express, thanks so much for responding so fast to my long and convoluted post.


When you wrote about flare ups it sparked some questions for me. I read that an exacerbation has to last for 24 hrs before Drs will label it as that, is this true? So if your finger tingles, but only for a few hours, is it an actual flare up or something else? Does the symptom have to last solid w/o letting up for 24 hrs?


I can have a neuro symptom like my leg feeling chills, many times a day, and it can last for 4-6 days, then go away. Then it can come back a week later. Very weird.

I don't have problems sleeping, thank God, and I can't seem to find a trigger for them. Heat does not affect them, nor stress. I had a cold two weeks ago and nothing changed.

Thanks for your thoughts and Merry Christmas!!







[QUOTE=lady_express_44;433302]It is quite uncommon for us to have fleeting sensations like you are describing.

Normally we will have an attack, as they've described, where several symptoms will last for days --> months. We may recover partially (are left with "permanent" symptoms), or most often (in the early years), we will recover fully. Then we can go many months or years without anything new.

Once we have "permanent damage", symptoms may stir up from certain triggers, like over-heating, stress, infection, etc. They can be more fleeting symptoms, but they don't usually last for only 15 seconds. Normally they will last until we remove the "trigger", but it still may take several hours before the symptoms let up completely.

.........

Yes, to be classified as an exacerbation, the symptom would last for at least 24 - 48 hours, and often much longer then that. In fact, most of us are "trained" to not get concerned until things go on that long, then we may call our neurologist.

Sometimes we get fleeting symptoms, like a cellphone buzzing, but that would not be "counted" an attack.

In order to get a dx, you must have "dissemination in time and space". What that means is that you have to have TWO "clinical attacks" (basically constant symptoms, lasting more than 24 - 48 hrs, on two occasions, at least 30 days apart). Those two events must occur in TWO seperate areas of the Central Nervous System as well. If our MRI or lumbar puncture results are GLARINGLY obvious for MS though, the dx can be a little less stringent.

My daughter has "burning" on most of her back sometimes, and it normally happens when she is run down or sick. Our doc has said this can come from a virus, or many different reasons.

Even when I was numb and paralyzed from the chest down (with what turned out to be my first MS attack), they "suggested" it may be a virus. So, viruses must be able to cause these type of events.

Anyone here would tell you that I am not one to recommend lumbar punctures willy-nilly, but in your case I might suggest that. I wouldn't think MS results would show at this point (if that's what you have), but I would think they would want to rule out a bacterial infection of the spine. (Can't remember the "proper" name; something like mycobacterial infection...).

There are no HARD rules to go with MS, and no two people are the same . . . but there are patterns and test results they look for. Even though you clearly have something going on, it's not obvious what it is yet.

What meds are you on? Are you on anything for migraines, or did you start anything new recently. Even if it is an "old" med, symptoms like this can crop up over time too. Have they checked you for diabeties?

BTW ... sometimes triggers like stress, heat, etc. don't affect us for many years with this disease. It's just a pattern that can sometimes indicate MS.

Cherie