I’m a 29 year old female, who is generally in good health – barring the fact that I was diagnosed with Reynaud’s a few years back (and had a bout with Mono as a teen), I’ve been relatively healthy (no hospitalizations or even a broken bone in my life!).
A little over a month ago, I noticed that I could not really ‘feel’ anything touching my face , and even my tongue– it felt like I had gone to the dentist and had some Novocain. I also noticed that I was somewhat ‘dizzy’ – not in an incapacitating sort of way, but in an unnerving way that made it hard to focus on what I was reading….I also had a very, very stiff neck. After a couple of days of this, I went to see my GP – she performed a pretty exhaustive set of blood tests, all of which came back completely normal: vitamin B levels, Iron levels (to rule out anemia), glucose levels (check for diabetes), CBC, thyroid test, electrolyte levels, and auto immune disorders (ie. Rheumatoid arthritis, Lupus etc). Nothing abnormal in any of these tests, so she referred me to a neurologist.
After my visit, my Neurologist told me that my symptoms were not entirely consistent with that of MS – but he wanted me to get an MRI just in case, which I promptly did. I got a call from the Neuro stating that it came back ‘completely normal,’ and that he didn’t think I had MS…he mentioned that possibilities still include a virus of some sort. The practitioner that administered the MRI told me that my Neuro had a lot of experience with MS patients, so that alleviated my concerns somewhat.
Fast forward a week later and I started getting different symptoms: tingling hands/feet (1-2 days of this), intermittent dizziness (not constant like before), weird stinging pains in my hands/feet/legs arms (that come and go in a minute or so), severe facial pain which felt like a balloon was under my skin expanding (only 1 day of this), bulging veins in my hands, chest pain (2 days of this), weird muscle spasms in my arms/legs (sort of like the one you can get under your eye at times), and am greatly fatigued with neck pain (constant). I am usually a very active person that is religious about getting exercise, I play sports as well to stay active, and lead a generally healthy lifestyle….I recently got engaged (a couple of months before this all happened), and was extremely happy and excited about the upcoming wedding – so when people suggest that it might be stress related, I’m confused….I by no means felt stressed out leading up to all of this, everything was going great!
That being the case – I know an MRI is not the only way to rule out MS, as I’ve done a lot of research online in the past month….so I’m going back to my neuro next week as I know I’ll probably need additional teseting. That being the case, knowing that about 5% of people that have normal MRI’s still have MS, should I be overly concerned that I do actually have it, or should I feel substantially better knowing that my MRI was fine? Could these later symptoms be caused by the stress of waiting for a diagnosis? (I’ll admit that AFTER I was told MS was a possibility that I did get verrrrry stressed). Could this really just be a virus? If so, what kind of virus causes symptoms such as these?
Your story is alot like mine. I too had, and have a great deal of MS-Like symptoms that I struggle with. I have undergone MRI's CTscans and a ton of other tests in search of answers and was told that It was all due to stress.
One thing that I have learrned is that some of us our very in tune w/ the way our body feels. And when my body was not acting normal, no doctor was going to tell me that what I was feeling "was normal". I can suggest to you that making a journal of how you feel and when these things happen will be very beneficial to a caring doctor. Also, the stress of being put through testing and not having answers is very tough. I would suggest that you find a psychiatrist that you can talk to, this must be someone neutral that you don't mind telling your life story to. When I did all my testing It was great to just pour my heart out to my Psych, and there is no shame in talking to someone about your problems. Finally, I would get a second opinion on what is happening from a different Neuro. Hopefully you will start to feel better.
Hi, and Welcome to the forum! Sorry you are miserable like this and that these symptoms are happening as you prepare for a wedding. That bites.
Are you are clearly aware, no one here can say what this is, but we can talk about it in the context of MS.
I have some questions about your symptoms. You began with facial numbness, a very common presenting complaint in MS. However, was your "whole" face numb, about the same on both sides? Simultaneous and symmetrical numbness would be pretty unusual in MS from all the reading I have done. Numbness in the face is caused by the Trigeminal Nerve (Cranial Nerve #5). Bialateral involvement is common, but it usually acts differently on each side.
Dizziness is one of the most common complaints seen by any doctor in primary care, ENT, and neurology. It is also very common in MS. That is a hard symptom to hang any hats on. The particular sensation you are describing is certainly one we talk about frequently here.
The stiff neck immediately brings to mind a viral meningitis, which could account for most of the things that you mention. That was not an off-the-wall sugestion.
The MRI was negative. I would say that is a bone of contention here and with the field of neurology in general. The MS Society states the 5% negative MRI thing. And all of the studies of people MRI after a first demyelinating event show that as many as 20% may develop MS later when the first "baseline" MRI is negative. BUT, the field of neurologists by and large will not accept that a person can have MS with a negative MRI. I have heard of docs giving the diagnosis, but we have only met one or two in the history of this forum. At any rate, a negative MRI largely decreases your chance of having MS.
I assume that your neurologist did a thorough, head-to-toe neuro exam on you. Do you know if this was negative? Reflexes normal? Balance normal?
Moving on to your subsequent symptoms this sounds less and less like MS. You say that you began to have "stinging pains in my hands/feet/legs arms (that come and go in a minute or so)." MS does not cause widespread, simultaneous sensations like this (called paresthesias). MS causes random attacks on nerves. The problems happen here and there, asymetrically (especially in the beginning), but not all four extremities throughout. Also generally, the sensations last longer than a minute or two. And to qualify as symptoms of an attack of MS they must last more than 24 hours (this may be constantly or frequently recurring). Some experts are pushing for this definition to be extended to 48 hours.
You are also having tiny muscle twitches called fasiculations, it sounds like. You can see the muscles move under the skin, but the twitches do not cause parts of your body to move. Muscle twitches (fasciculations) occur when the muscle is irritated. In MS we see that kind of twitching in specific muscles that are weakened or spastic, but not all over. All-over twitching is seen after viral infections (example influenza, colds and others) and in vitamin deficiencies like B12 (levels below 450 are suspect) and can be very prominent in Lyme Disease. Yours do not sound like MS.
You also describe your face (your whole face?) feeling strange. If it was the whole face, again MS is less likely the cause. Bulging veins..I have no clue what to say. We have had others - undiagnosed I think - complain of this. Chest pain - This is possible in MS, but your doc should look elsewhere for cardiac problems. Neck pain can be from a variety of causes including MS. But, all these different problems are occuring in rapid succession and each are lasting just one to a few days. MS is rarely that rapidly changing. It "could" be, but the majority of people here with MS, will tell you that most symptoms hang around longer.
I'm not a big one to invoke stress as a cause of symptoms and won't here. Stress can, however amplify symptoms that are already there.
I don't see any need to change to a different neurologist if this one is treating you with belief and respect. I see why he feels that this does not look like MS. However, it seems that something else is definitely happening, and would ask for a thorough review of all the things that can cause symptoms such as this. Specifically, I would ask for testing for Lyme disease, not only the basic screening antibody test, but if it was negative for the more in depth "western blot" test.
You also might check over on the Lyme Disease Forum to see how much they think these symptoms sound like Lyme.
The kind of symptom you are having sounds more "systemic" a medical term that describes things that have an effect all through the body. Examples of systemic problems are things like toxins, vitamin deficiencies (was your B12 level checked?), and infections like Lyme Disease and viruses.
Wanted to thank you both immensely for your responses...they have definitely helped lead me to other avenues to figure out what may be causing all these pains and dizziness I'm experiencing. Not to mention, helped keep my sanity, so thanks for your detailed response!
After a second visit to my neurologist, he believes even more so that it could be 'viral neuralgia', which I did some reading on, and found that it's really a blanket statement for multiple viruses that impact your nervous system....lyme being one of them. The more I read about others with lyme disease the more it sounds like what I'm experiencing. A few years back after camping in Wisconsin (which I did for many years) I had a really odd rash that I thought might have been something like poison ivy....so I went to the doctor for treatment. On top of the weird rash I was 'woozy' and felt rather bad.....so I was worried that I might have been bitten by a tick and asked my doc if she thought it could be Lyme. She honestly said she didn't know what the rash was from, so as a precation she literally gave me three types of medications - a steroid, an anti viral med (Valtrex), and antibiotics.
I've read that antibiotics are the proper treatment for lyme disease, so in my mind I thought I had my 'bases' covered in case I did somehow contract it....well, now fast forward 3 years later and I feel horrid....and after doing more reading, I find others that have said the two weeks of antibiotics they had weren't enough. Sort of frustrating, but at the same time, I'm committed to finding an answer....just have to remain proactive!
Did you ever have anyone recheck the MRI? Did anyone rule out Chiari Malformation? Symptoms also sound consistant and similar to MS. Another way of ruling out MS is to have a spinal tap. What area of the country do you live in?
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