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So. Long story short; for the last 3 years I have experienced some symptoms, that I believe could be caused by MS. I'm the right age group; 24 year old female, scandinavian.

Because of the 'vagueness' and random ways my symptoms have been appearing, I have been pretty much brushed off by neuros. They (quite obviously) think the symptoms are caused by anxiety and tense muscles in my shoulders.

I just visited a neuro today that wrote a letter to my GP to give a referral for an MRI so I could stop worrying so much he said. After 3 years of fighting to be taken seriously, I am almost at a place, where I cant find the energy to actually go get that MRI. I had a clear MRI 3 years ago but on a shotty T1 machine and by people who dont normally deal with MS...

Hard to explain, but I am so tired of doctors rolling their eyes... Partly it's my fault because I have been quite obviously worried in the past, so I may have come across as hysterical. Now I'm honestly not even worried or scared, just tired of having spots in my vision that have no explanation and tired of being labeled as crazy as if I am making things up.

My symptoms have been;

- left eye has 2 black/blind spots that are NOT floaters - they are not huge in any way, and i can still read and drive w no problem, but they are there. They stay in the same place in my vision at all times. Started out as black spot, are now more grey'ish. The same eye has phosphenes in dimmed light that can be quite annoying.

- in some lighting, the 'colour scheme' in one eye is very dimmed - one looks like it has a blue-ish tint to it and the other one is warmer in colour.

- with my chin down to chest, I get a buzzing/electrical feeling different places in my body. First time I noticed it, my toes went BUZZZ whenever i bent my neck. Not the classic electrical jolt through the body with L'hermittes, but still very odd and just doesn't feel normal? Gets more pronounced with warmer temperatures/after exercise.

- feelings of water splashing on my shins

- dead hands keept appearing in the mornings and sometimes at random times too. Could shake it off, but my hands felt SO dead, much differently than normally, when you, lets say, sleep on them. This was different.

- tingling/sleeping/buzzing fingertips and 'spots' for days at a time.

- feeling under ribs of painful tightness that can last for days.

- twitching muscles (random and shortlived, but everywhere)

- once my right leg shaked when I flexed my foot - later I have realized it was very similar (identical) to clonus.

Anyways - what I am asking you is - are my symptoms completely unlike early MS? My neuros say so, but after all my research I have to disagree. The neuro today even said 'well ms hasnt got anything to do with the eyes, so i dont know why you think that matters so much'.

Does it sound like MS? Should I get an MRI? If yes - should it be brain + neck + spine?

Thanks in advance

Oh I forgot;

- 2,5 years ago; crazy vertigo like nothing I have ever experienced before. Lasted for weeks. Hasnt come back, thankfully.

Hello Louisels,

Have you been to an Ophthalmologist regarding your vision issues, if not that would be one of the first things you should do. If there is something wrong with your eyes/vision an Ophthalmologist would be able to give you answers.

- with my chin down to chest, I get a buzzing/electrical feeling different places in my body. First time I noticed it, my toes went BUZZZ whenever i bent my neck. Not the classic electrical jolt through the body with L'hermittes, but still very odd and just doesn't feel normal? Gets more pronounced with warmer temperatures/after exercise.

Lhermittes sign is not exclusive to MS and can have other causes. When related to MS Lhermittes is caused by lesions on the cervical (neck) spinal cord. Lhermittes is not related to brain lesions or lesions elsewhere on the spinal cord.

Lhermittes causes sensations (electrical shock, vibration/buzzing, tingling) from the spine down, sometimes it's waist down. The sensations will only last seconds but can be repeated each time the head is bent down. Your description of "different places" isn't how Lhermittes works.

dead hands keept appearing in the mornings and sometimes at random times too. Could shake it off

If this was due to Multiple Sclerosis you would not be able to "shake it off." Multiple Sclerosis doesn't work like that.

- feeling under ribs of painful tightness that can last for days.

If this was related to MS it would feel like you were being squeezed and could not breath. How you have explained it doesn't fit for MS.

- twitching muscles (random and shortlived, but everywhere)

Symptoms that present everywhere as you describe isn't MS, MS doesn't work like that.

Many things can cause symptoms that are similar to MS but are not MS, those include --- Vitamin/mineral deficiencies, other conditions, some medications and mental health issues.

I can't tell you if you have MS or not but by what you have written it doesn't "sound" like MS. I hope getting MRIs will put your mind to rest.

I have been to en eye doc who couldnt see a cause to my problems - he didnt perform any actual tests though besides blowing in the eye and taking some pictures (which I have learned would not be able to diagnose OP, if it was present). Either way - it is not an 'eye' problem, my eyes themselves are healthy.

In regards to Lhermittes; when I say 'different places' I mean;

in the beginning, with chin to chest, it was my foot that buzzed. That would be the case for weeks - every time i bent my head, I would buzz in my feet. Then later on, with chin to chest, part of my left thigh would buzz with chin to chest (and continue to do so for days/weeks with a headbend). The buzzing was only for a second or two, then it stops.

From what I have read online from ms'ers, that sounds like lhermittes to me?

Thanks for your answer either way, I appreciate it.

Louisels wrote:I have been to en eye doc who couldnt see a cause to my problems - he didnt perform any actual tests though besides blowing in the eye and taking some pictures (which I have learned would not be able to diagnose OP, if it was present). Either way - it is not an 'eye' problem, my eyes themselves are healthy.

If you see fine and your eye Dr. didn't see anything wrong with your eyes then it wouldn't be anything to worry about.

In regards to Lhermittes; when I say 'different places' I mean;

in the beginning, with chin to chest, it was my foot that buzzed. That would be the case for weeks - every time i bent my head, I would buzz in my feet. Then later on, with chin to chest, part of my left thigh would buzz with chin to chest (and continue to do so for days/weeks with a headbend). The buzzing was only for a second or two, then it stops.

If it was really Lhermittes it would be felt from the spine down or at the very least waist down all at the same time . Lhermittes doesn't cause random buzzing in different parts.

From what I have read online from ms'ers, that sounds like lhermittes to me?

I have had Lhermittes sign for 31 years. What you are describing doesn't sound like Lhermittes sign, to me.

I'm not worried at all actually - I'm just tired/frustrated of black spots in my vision and electrical buzz-buzz-buzzing when i bend my neck (which is much more pronounced after taking a hot shower).

i know im not a doctor, but doesnt that sound very MS-ey??

What testing have you had done? Blood work? Did you have your B-12 checked? Your D level?

Not more than I already wrote - although I am almost religious about supplements (multi, magnesium, b12, d, zinc, turmeric) and have been for long, so I am not low on anything.

Louisels wrote: - left eye has 2 black/blind spots that are NOT floaters - they are not huge in any way, and i can still read and drive w no problem, but they are there. They stay in the same place in my vision at all times. Started out as black spot, are now more grey'ish. The same eye has phosphenes in dimmed light that can be quite annoying.

- in some lighting, the 'colour scheme' in one eye is very dimmed - one looks like it has a blue-ish tint to it and the other one is warmer in colour.

A visual field test might be helpful. http://www.medicinenet.com/visual_field ... rticle.htm I had one when I had optic neuritis. I also had dimmed color intensity after the majority of the cloudiness from my optic neuritis had cleared up. For me, the optic neuritis presented as a cloudiness like looking through a pair of steamed over eyeglasses.

Louisels wrote:Not more than I already wrote - although I am almost religious about supplements (multi, magnesium, b12, d, zinc, turmeric) and have been for long, so I am not low on anything.

Would you share the actual number result of your latest vitamin D test (the "25-hydroxy D")?

Dr. Robert Heaney – Why Test Vitamin D? (41 min.)


"Therapeutic adequacy depends not on dose but on achieved serum level, which can only be ascertained by measurement. 25(OH)D response to therapeutic doses of vitamin D varies over a six-fold range, and is hence difficult to predict."

One person can have a D level of 20 ng/ml when taking 5000 IU/day? Another person can have a level of 140 ng/ml from same 5000 IU/day.

could low vitamins give me blind spots + ''lhermittes''?

Louisels wrote:could low vitamins give me blind spots + ''lhermittes''?

Vitamin D deficiency can affect ANY system in the body – including the nervous system, the immune system, the vision system – ANY and ALL. The link between vitamin D and the vision problems of myopia, optic neuritis, and uveitis has been established; I have not looked for research on vitamin D and "blind spots" specifically. But since vitamin D is used by every cell in the body, I suspect a connection there too.

In the case of vitamin B12…This 52-minute documentary features Sally M. Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their second book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)



@1:23 "The neurological manifestations well precede the hematological manifestations."
@1:46 "The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."
@4:50 Pacholok says, "MS is a demyelinating disease and so is B12 deficiency. You can't tell the two apart unless you test for that."

(@51:00)
Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide


As for L'hermitte's sign and vitamin B12…
http://teachneuro.blogspot.ca/2011/09/l ... -sign.html

L'hermitte's sign can occur as a result of:
compressive myelopathy
radiation myelopathy
subacute combined degeneration of the spinal cord (severe vB12 deficiency)
copper deficiency
tumors
etc.

So to answer your question, in my opinion (I have no medical background), yes, low vitamins D or low vitamin B12 could "give you blind spots + L'hermittes."

Hello,

I see that you already have many replies here but I wanted to add my two cents. I have secondary progressive MS and was only officially diagnosed by my MS specialist a week ago. My primary doctor diagnosed me over a year ago. I went un-diagnosed for most of my life, my first symptoms started in my teens. It's very frustrating and scary to know something is wrong but not know what. It has taken me three years of actively seeking medical help to get diagnosed because, my MS went so long undiscovered that I am in the progressive phase at this point and didn't "fit" what the doctor thought I should fit as a typical MS sufferer. Each person is very different, each case of MS is can be very different. I have very few visible lesions in my brain at this point and only one that is still showing as slightly enhanced. I have lesions in my spinal cord that are only proven by clinical findings and have yet to be seen on my MRIs. What finally convinced my MS specialist that she was right in thinking I had MS was an eye exam by a neuro-opthamologist (I suggest you find one). He did a test on my eyes that measures the layers of fibers in the optic nerves and discovered that I had damage in both eyes. This could not be seen in a normal eye exam. I've never had a lumbar puncture, although many people insist that you must have this done. That's not true.

In my personal opinion, yes, many of your symptoms could be MS. However, there are many other things or even combinations of things that might be causing your issues. My advice to you is to continue seeking help until you get your answers. It took me five neurologist, four primary doctors, eight MRIs, countless blood work, evoked potentials tests on my eyes (I got a false negative) and the ophthalmologist to get my answer. Do go and keep your appointment for your MRI. Although, depending on the machine, the person reading the results and the criteria they use, this too can lead to false negative findings. I've been there as well. You need MRIs on the brain and spinal cord. There are other diseases that can VERY closely mimic MS, so those must be ruled out as well.

Be prepared for a possibly long journey. You may encounter many people, doctors included that will want to write you off as crazy, exaggerating and the like. Don't let them get you down. It is obvious that something is going on. It's just a matter of finding out what and getting the help you need.

If you need someone to talk to, please feel free to contact me. This can be a very difficult and lonely ride, I know first hand. Good luck to you and I truly hope that you find your answers soon and can have peace of mind.

Saja

Thank you so so much.

I find it so odd that I can be written off as a hypo when i have a blind spot in my left eye (two, but one is tiny.) I can't make that stuff up???

My twitching I guess could be anxiety. But anxiety cant make my feet buzz when I bend my neck - and the fact that this gets worse after walking/hot shower only strengthens my suspicions.

The neuro I went to last week absolutely though I was crazy - he told me not to worry about vision with MS, because MS is a brain disease not an eye disease??? jeeeeeeez.

Louisels wrote:The neuro I went to last week absolutely though I was crazy - he told me not to worry about vision with MS, because MS is a brain disease not an eye disease??? jeeeeeeez.

The man is clearly incompetent. Optic neuritis is one of the most common reasons for people to be diagnosed with MS. Find a different doctor. Oh, and kindly remind the doctor that the optic nerve is part of the central nervous system, not the peripheral nervous system, so it is affected by MS. Note that I'm not saying whether or not you might have MS, just that this doctor is of no value to you.