new symptoms - MS? Or what else?

[alena]

hi,
I would like to ask someone - please - could these be MS symptoms - or what?

It has been about a few weeks since I have been experiencing some new symptoms (which my doc sais "its nothing" .. ) ..

I can feel quite strong "burning" pain/feeling now (skin?? muscles?? - I cant say; mainly in abdominal area and on the back side of my neck) + I have now more frekvent muscle jerks (fasciculations?) + muscle weakness + face & tongue tingling/paresthesias + at the same time I can feel my brain "works as in a kind of safe-mode" sometimes (I cant concentrate on more than 1 thing at a time, I keep forgeting things etc...)

other my "old" symptoms have also slightly worsened since then (oscillating/moving vision field, dizziness, L´hermite sign, tinnitus etc.), but nothing came out of the blue, each symptom has been only slightly worsened day by day ...

Could this be associated with MS - or what else if not MS?

(For a long time I have had susp. for MS, but after the test did not show anything but 4 "o" bands in CSF, my doc changed his mind and now he sais "this has nothing to do with MS", but does not say what it is then ..) ..

thanks
alena
(sorry for my English is not perfect)

[rose]

They are supposed to isuspect and investigate advanced B12 deficiency when symptoms resemble MS. But many do not do it at all, and most do not know how to do it right. Symptoms of B12 deficiency vary tremendously, so there is no typical presentation, but long undiagnosed deficiency often causes damage similar to MS. And symptoms can be severe before lesions show on an MRI.

See B12 threads on the vitamin deficiency forum here on this board. Do take this seriously. It is tragic to become disabled unnecessarily for lack of an expensive and safe vitamin in the appropriate dose.

rose

[TipToeTulip]

Hello Alena,

I'm not a professional so this is just my personal sceanario.

I have severe Fibromyalgia. It has progressed via severity of symptoms each year. Although it is said FMS is not progressive, I believe in progressiveness due to symptom severity growing and losing more abilities each year.

I also thought I had MS as may people with FMS do. I would have bet on it. Then I had 2 brain scans and both were normal.

Have you ever been checked for FMS? The diagnosis is one which is usually not one which some Drs. care to refer to. It took me so long before I was dx'd.

Just a thought, but I experienced much of what you speak of.

TTT

[LIZARD]

(((((((((Alena))))))))))).

Let me just say that if you (or anyone else dx'ed with MS or fibro) have not yet had a head/neck MRI, you need to get one. Both fibro and MS (and many other conditions) have been dx'ed due to symptoms that result from the presence of Arnold-Chiari Malformation, the herniation of the cerebellar tonsils in the lower back of the brain. The herniation may be extremely small and seem insignificant, but even a 1-5 mm herniation (which is typically only seen by a well-trained radiologist or neurosurgeon) can bring on seriously debilitating symptoms for some patients.

Good luck...

LIZARD :)

[jccgf]

Alena,
I had many of the symptoms you mention when I was B12 deficient. Here are the symptoms I had, and they all resolved over time with oral doses of vitamin B12 (1000-2000mcg daily).
http://jccglutenfree.googlepages.com/b12deficiencysymptoms

Cara

[alena]

hi all,
thanks for your care and responses,

yes, I was considering all those silly symptoms could be somehow B12 def. connected - but - although I have thousands little different symptoms every day, the most troublesome for me is (besides the muscle weakness) the tinnitus (neverending sound that comes frome "somewhere above" my head) - and - vision problems: all I see is constantly moving back and forth, swinging /jerking /wiggling or whatever else - which makes me constantly even more dizzy than I am .. - which seems not to be typical for B12 defficiency, as my doc said - and when I had been checked for B12 deff. - the results came back ok;

I have never been checked for FMS - as I have never had any pain (but the abdominal area "burning" feeling, which is quite new to me - and which I am not sure If I can call it "pain" .. )..

I have had "Evoked Potentials" test (normal) and MRI (brain, C spine) - both normal;
only the spinal tap showed 4 "o" bands plus (as doc said) quite high levels of IgG and also some IgM elevation.

My neurologist still keeps saying "I am healthy" :)

Thank you all for your responses and info
(I would not have ever believed B12 defficiency could cause so many problems ..)
a.

[jccgf]

and when I had been checked for B12 deff. - the results came back ok;

(I would not have ever believed B12 defficiency could cause so many problems ..)
a.


There are a few of us who make a lot of noise about B12 deficiency because most people would never believe it could cause so many serious problems. When my doctor's office called to say my B12 was a little low and I should take high dose B12 (1000mcg daily), (after 3 years...8 doctors), I thought it was an insignificant finding, or worse yet, a cheap attempt at a placebo fix. My doctor never took the time to explain it was the cause of all of my symptoms!! That is when someone forwarded me to rose :). So, I actually had a doctor who flagged it (most will miss it if it falls within normal range)~ and I almost still missed the boat.

Do you know the actual results of your B12 testing? People can begin having symptoms with normal levels. I had been having symptoms for 3-5 years before my low normal level 294 (150-1100) was found. I've always wondered what my level was when I started having symptoms.

So... there are definitely other things to consider, but do not overlook this possibility..even if your doctor says your B12 was OK. Normal isn't always good enough...so be sure to check that actual test results. Vision problems including optic neuropathy, dimming, blurriness, nystagmus, can come with B12 deficiency.

One more link... on B12 deficiency and neurologic symptoms:
http://www.emedicine.com/neuro/topic439.htm

Your symptoms could also be consistent with Celiac Disease, too, which can present with neurological symptoms, with or without GI symptoms. Lots more about that in The Gluten File linked below my name. If you have family history of autoimmune disease or GI symptoms..all the more reason to consider.

Here are some other things "they say" should be considered when dealing with MS-like symptoms.


Unfortunately the rate of misdiagnosis remains around 5%-10%, indicating that 1 in 20 patients thought to have MS has, instead, a condition resembling MS. Conditions often confused with MS may be inflammatory (systemic lupus erythematosus, Sjogren's syndrome, vasculitis, sarcoidosis, Behcet's disease), infectious (Lyme disease, syphilis, progressive multifocal leukoencephalopathy, HTLV-1 infection, herpes zoster), genetic (lysosomal disorders, adrenoleukodystrophy, mitochondrial disorders, CADASIL), metabolic (vitamin B12 deficiency), neoplastic (CNS lymphoma) and spinal (degenerative and vascular malformations) diseases.
The differential diagnosis of multiple sclerosis: classification and clinical features of relapsing and progressive neurological syndromes (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11794488&dopt=Abstract). PMID: 11794488



Hope you find some answers~

Cara

[maridane]

hi all,
thanks for your care and responses,

yes, I was considering all those silly symptoms could be somehow B12 def. connected - but - although I have thousands little different symptoms every day, the most troublesome for me is (besides the muscle weakness) the tinnitus (neverending sound that comes frome "somewhere above" my head) - and - vision problems: all I see is constantly moving back and forth, swinging /jerking /wiggling or whatever else - which makes me constantly even more dizzy than I am .. - which seems not to be typical for B12 defficiency, as my doc said - and when I had been checked for B12 deff. - the results came back ok;

I have never been checked for FMS - as I have never had any pain (but the abdominal area "burning" feeling, which is quite new to me - and which I am not sure If I can call it "pain" .. )..

I have had "Evoked Potentials" test (normal) and MRI (brain, C spine) - both normal;
only the spinal tap showed 4 "o" bands plus (as doc said) quite high levels of IgG and also some IgM elevation.

My neurologist still keeps saying "I am healthy" :)

Thank you all for your responses and info
(I would not have ever believed B12 defficiency could cause so many problems ..)
a.

A Chiari diagnosis. My daughter's MRI report read like this: There is a 4 to 5mm tonsilar herniation but no evidence of Chiari Malformation. She had her decompression surgery in NY 2 years ago for guess what...... Arnold Chiari Malformation and once the docs got in there her herniation was not 4 to 5mm but rather 8mm on the right and 12mm on the left... In other words, she had chiari and the radiologist totally dismissed it or missed it, however you want to look at it. The following is a list of symptoms for Chiari and you can see that this mimics a great many things from MS to Lupus to several others.
Marilyn

In general, people without herniation may not suffer symptoms associated with brainstem compression but, rather, with lack of CSF flow and raised ICP. These symptoms tend to mirror those of PTC and include some of the ones listed below.

Headache (esp. if daily or at lower back of head) frontal headaches as well
Painful tension in neck
Fatigue
Migraines
Dizziness

Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
Tingling / numbness in the extremeties
General imbalance / clumsiness
Memory loss
Restricted movement

Intolerance to bright light / difficulty adjusting to light change
Vertigo from position change or sudden standing
Difficulty walking on uneven ground / feeling ground under feet
Poor / degraded motor skills
Difficulty driving

Difficulty negotiating steps
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain
Neck spasms

Insomnia
Ringing in ears (like the tone heard in a hearing test)
Swaying
Pain when changing position
Tingling / crawling feeling on scalp

Intolerance to loud / confusing sounds
Decreased sensation to touch in extremeties
Decreased sensitivity to temperature
Pain & tension along ear / eye / jawline
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
Drooling

Spontaneous vertigo
Hand tremors
Poor blood circulation / cold hands & feet
Sinus / mucous problems
Sleep apnea

Decreased muscle tone
Pressure in ears / ears feel stopped up
Nausea
Difficulty reading / focusing on text
Depth perception problems

Burning sensation in extremeties / shoulder blades
Menstrual problems / severe cramping during period
Fluid-like sound in ears (like water running)
Loss of sexual interest / lack of sensation in pelvic area
Pulling sensation while sitting / standing

Intense itchiness w/profuse sweating
Slurred speech
Gag reflex problems / lack of gag reflex
Pressure / tightness in chest

Loss of bladder control
Frequent urination
Dehydration / excessive thirst
Electric like burning sensations
Unequal pupil size
Loss of taste

Popping / cracking sounds in neck or upper back when stretching
Dizziness
Loss of smell / problems with sense of smell
Dry skin and lips
Sudden / abrupt changes in blood pressure due to awkward position of head
Hiccups associated with drinking carbonated beverages
Skin problems

Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints.

[Jo*mar]

Wow -
so many of those chiari sx on that list are so similar to sx I had back in 2003.
But oddly mine were due to my RSI {repetitive strain injury} / TOS {thoracic outlet syndrome} and have mostly faded or resolved with good treatment & off work.

here's my list from back then-

PAIN & SYMPTOMS

Hands
Sharp cramping pains in back of hands- with use - like writing, holding small objects, picking up small things- pins, tweezers, toothbrush
Clumsiness of fingers
Fingers stiff sometimes
Loss of strength
Tightness in back of hands
Sharp stabbing pain sometimes when reaching around or twisting wrists = pockets, zippers, buttons
Occasional swelling and color changes esp. if arms elevated very long
Cold weather increases discomfort

Wrists
Sharp burning pain in wrist joints after use- handled large engineering documents–9/30/03 - OK now
Bracelet feeling - topside 2”- 3” from wrist, Left > Right Tightness/pulling in that area now when forearm gets tight
Fine sharp pains lengthwise 2” from wrist, underside only- minimal now
R wrist bone sticks up higher than L? Different shape ?

Forearms
Tightness and a deep ache on top side of forearm -elbow to wrist-
Deep ache is gone – tightness comes and goes with use
Mid forearm underside aches- minimal now
Tingling/ tight/pulling/stinging sensations just under skin- with use
Hypersensitivity sometimes on top side
Left worse than Right -usually

Elbows
Spots of tenderness above and below joint after moderate lifting or use
L > R - elbow puffy and slightly numb at the inner crease area – minimal now
L > R - sensitivity to fabrics and light pressures – minimal now
Ulnar nerve symptoms 11/03 – 2/04 –upper body therapy {neck/shoulders} resolved most sx
Point of both elbows get sensitive and have a small sore spot sometimes --NEW -11/04 - mostly gone now 1/05
When arms are extended palm up- wrist planes and elbow planes don’t match ??
When R shoulder is very sore can’t rotate R arm fully to extend it forward –1/12/05

Shoulder- R & sometimes L
Sharp pain and a pulling pain when reaching to the side up/out and to the back -less now but still sometimes after any moderate use
Crunching noises sometimes- minimal now
Stiff, sore and tight some mornings after sleeping on that side

Neck
Tight, strained, sore spots – usually have to stretch daily to keep loose
Crunching noises - minimal now
Sometimes feels like I’m wearing a tight necked shirt
Sometimes feels like my collar bones are getting pulled upward into my throat
At times it felt like I could hardly hold my head up
Whooshing pulse sound was on right side of neck –summer/fall 03, now more on left side - positional / tightness combination? Bruitt?

Upper Back & Upper Chest
Tight, burning and achy spots in upper back when head has been in a forward or downward position for any moderate length of time- better now since off work but starts if I read a book for too long or do gardening
Tight, strained, heavy feeling if arms are forward/elevated very long
Sharp pains or dull aches at times under shoulder blades and in various muscles in upper back—after moderate use
Armpits/Pecs get tight and strained feeling at times

Misc.
Vision changes {comes and goes}= Double/blurry, light sensitive, more floaters, very watery
Dizziness / lightheaded problems mostly occurring in 8/03 – 2/04 Headaches at back of head same time frame- none now
Memory fades same time frame
Concentration problems- fluctuates with symptoms
Stuffy ears and sinus- fluctuates with symptoms
Weak voice – cracks and scratchy throat- fluctuates with symptoms
Trouble swallowing - fluctuates with symptoms
Over doing of activities causes trigger points or spasms in upper body
Weakness, fatigue and heaviness of arms, shoulders and upper back when holding arms out or up- while driving I need to change arm/hand positions frequently
Delayed pain after use
Hypermobility is an issue also

My self treatments

Rest, Heat, Ice, Stretching, Hydration, Self massage
Trigger point therapy, Acupressure, Relaxation/ Breathing
Postural awareness & ergonomics
Vitamins & mineral supplements
Chiropractic care

***********************************************
alena-
Do your symptoms seem to be whole body?
What muscles feel weak?
nice to meet you.
Jo

[I can feel quite strong "burning" pain/feeling now (skin?? muscles?? - I cant say; mainly in abdominal area and on the back side of my neck)]

this part makes me think about RSD a little bit.

[alena]

hi,
wow (as you, Jo55, said :))
too, I am always surprised when reading how the neuro "staff" can be tricky :)
so many symptoms mimic so many various diseases ..
thank you all, interesting ..

Cara,
I dont know actual results for my b12 testing;
but my first symptoms (dizziness, sleepyness, tinnitus and leg weakness and slurred speach) appeared about 10 years ago; now it has been about 1 year when my symptoms have worsened much more (in fact many new symptoms have appeared - limping, walking like drunk due to ballance problems, memory problems, exaggeration of vision problems etc.. ) ..

Jo:
my symptoms come and go - and I can feel my pareshesias, muscle cramps, tingling etc. all over my body (not only in extremities, each day different ) + the muscle weakness I can feel mostly in my right hand and legs ..
and - please (sorry, my English) - RSD stands for
Reflex Sympathetic Dystrophy ??

Marilyn, I am sorry about your daughter´s experience ..
thank you for the Chiari tip ..

thank you all,
take care,
alena

[rose]

is not likely due to B12 deficiency.

However, the methylcobalamin form of B12 can be helpful even when B12 is not low. So, I would take it while continuing to explore.

Best wishes,

rose

[jccgf]

Wow...I can also relate a little bit to so many of the things being mentioned here. I agree that these mystery neurological complaints and symptoms can be caused by so many different things!

I had many hand/forearm complaints... I couldn't WRITE anymore without moving my entire arm with a pen stuck in 'frozen' position in my hand. I had sharp stabbing pains in the wrists and forearms especially thumb and first finger (among other places in my body), very stiff hands, aching painful forearms etc.. I dropped things out of nowhere all the time. Vitamin B6 deficiency can cause carpal tunnel type symptoms, too, and for me...I think that was it. When my B12 deficiency was uncovered, I went on an overal supplement plan, which included extra P5P B6, magnesium, fish oil, and also a multivitamin. I had so many symptoms, too, just like the rest of you, that could "fit" with a number of conditions.....like fibromyagia, lyme disease, thyroid disease, etc. The only symptoms I have left are periods of brainfog and some lingering memory and concentration problems (still could not ever remember a number from a glance in the phone book to dialing it), but they are not nearly as bad as they were...still very frustrating at times. I also have very occasional and mild buzzing and twitching.

When I was at my worst, I could not, for example, add two two digit numbers together; it was mentally exhausting just to read; I couldn't process verbal conversations around me at all (just heard blah, blah, blah); I couldn't articulate well, stuttered and often dropped off mid sentence with no recollection of what I was talking about; word finding problems..wrong words popping out all the time (this still happens but not every other sentence..maybe just a couple times a day); and a couple of times I even got lost/disoriented when driving when I was going to what should be a familiar place....and that is getting into scary cognitive problems. I had the couple of vertigo attacks (lasting days each time), also episodes of feeling like I was dropping from the sky, etc, all that stuff. Just from a vitamin deficiency.

My early symptoms were on and off over the course of 3-5 years more like flares (like the urninary tract symtpoms...had several 'flares' of that over a couple of years). My ear ringing, buzzing, and clicking noises was definitely on and off over many years, but the "phantom" ear pressure and pain came near the end. I say "phantom", because on exam there was no fluid or infection. But, then, everything started worsening rapidly, with new symptoms piling on at more rapid pace during the last six months before my problme was finally uncovered.

My oldest daughter, who we now know was B6 deficient, had "morning hands" during her childhood, and especially in the morning (hence us calling it 'morning hands'), couldn't button, tie shoes, dropped things, etc.

My youngest daughter had a fleeting episode of slurred speech once just before we discovered her gluten sensitivity, but had more episodes of sporadic weakness (limp body fatigue), leg drag, staggering, droopy eyelids (she couldn't lift them open on occasion, usually in the morning shortly after arising, but it would happen, say, while eating breakfast...and last a couple of minutes) and a lazy eye. All as a result of gluten sensitivity~ all resolved on a gluten free diet. She does not have Celiac Disease. If you haven't had a chance to check out The Gluten File yet, I hope you will. Especially the pages on neurological manifestations of gluten sensitivity/gluten ataxia, and the diagnostic pages.


Alena, just keep on looking~ and I hope you will find some answers one day soon. It can be a big long process of elimination and continued testing, and very hard to keep on going to the next doctor, next doctor, next doctor. Take breaks from it when you need to, but you may need to be very persistent to find answers. I agree with rose who suggests you take B12 and supporting vitamins (multivitamin, B-complex) while you continue to search... and of course always keep in touch with your doctor and keep him informed of things you are taking, including supplements ;). Lots of information on safety/dosing on roses' pages or mine.

Do you have any family history of autoimmune disease?

Good luck!

Cara

[sabau2]

Alena, I know I'm late posting to this thread but I just joined and started reading.

MS is a difficult diagnosis for a number of reasons. There are so many things that need to be quantified including previous history.

My question to you is this...have you been examined by an optomologist for signs of Optic Neuritis? I had a friend who had some vision problems, only occasionally, but enough for him to make an appointment and that's how his MS was found.

Just a thought....I wish you much luck!

[ConsiderThis]

Hi Alena,

I agree with the many here who have spoken of B12 and how it helps.

I found this article yesterday about a doctor in England who prescribes it more than most... and was getting into trouble with the establishment, until 900+ of his patients stepped forward to talk about how much they'd improved.

I put the article on my site because when I just use links, the links often "die" after months or years.

http://health-boundaries-bite.com/Controversial-and-IMPRESSIVE.html

[tangye5]

Those were the exact symptoms I had several years ago and I had testing finally done by IGeneX Lab. It was from a tick the disease is called Babesia, I also have Lyme Disease. Took many doctors and surgeries and finally a good Lyme Literate MD and the tests confirmed my Diagnosis. Please e-mail me at pam482@hotmail.com if you want to correspond. tangye5