Could this be MS?

[banff098]

Hello everyone. A couple of months ago, I had a strange twitch on the top of my knee cap. I discounted it, but each day the twitching increased. I currently have twitches throughout much of my body along with "pins and needle" sensations that come and go - typically on my legs, but sometimes arms and even scalp! My left arm and left leg have felt kinda of numb, and a bit uncoordinated at times, but the strength is still fine. To add to all of this, today I came home from the Y after gently exercising my legs and when I sat down at the computer and put my head down, my left knee cap started buzzing. Now, it's like a string connects the two - if I keep my head down and move it from side to side, by knee buzzes (kinda electrical feeling) completely in time with my head. Last week I told my doctor these symptoms (except for this last one that happened today). I passed all of the "basic" neurological tests that he gave me, but he said I may want to get an MRI to rule out MS. I also have been getting recurrent corneal erosions over the past 10 years - haven't lost any sight or anything, but constantly have eye issues. Does anyone have any guidance or think that my symptoms sound like MS? Thanks so much for any advice you can give!

Christine

[lyndacarol]

A couple of months ago, I had a strange twitch on the top of my knee cap. I discounted it, but each day the twitching increased. I currently have twitches throughout much of my body along with "pins and needle" sensations that come and go - typically on my legs, but sometimes arms and even scalp! My left arm and left leg have felt kinda of numb, and a bit uncoordinated at times, but the strength is still fine. To add to all of this, today I came home from the Y after gently exercising my legs and when I sat down at the computer and put my head down, my left knee cap started buzzing. Now, it's like a string connects the two - if I keep my head down and move it from side to side, by knee buzzes (kinda electrical feeling) completely in time with my head. Last week I told my doctor these symptoms (except for this last one that happened today). I passed all of the "basic" neurological tests that he gave me, but he said I may want to get an MRI to rule out MS. I also have been getting recurrent corneal erosions over the past 10 years - haven't lost any sight or anything, but constantly have eye issues. Does anyone have any guidance or think that my symptoms sound like MS? Thanks so much for any advice you can give!

Christine

Welcome to ThisIsMS, Christine (banff098).

Your symptoms are common to many conditions ("twitches" a.k.a. fasciculations; "pins-and-needles/numbness in left arm/leg a.k.a. peripheral neuropathy; un-coordination; "electrical feeling when head lowered to chest" a.k.a. L'hermitte's sign). From MS-UK Helpline (http://www.ms-uk.org/MSdiagnosis):

MS diagnosis
Diagnosing multiple sclerosis can be complicated, not least because there is no single test that conclusively indicates the presence of the condition.

Multiple sclerosis can present different symptoms in different people at different times and the process of diagnosis can be a lengthy one.

Symptoms of multiple sclerosis can be subtle, or more apparent and can be experienced for many months or years.

Some symptoms such as mobility changes are more obvious, but some are not, for example, fatigue or sensory disturbances.

There is no set pattern and some people will experience symptoms that others will not and these can also vary from time to time, occurring singly or in combination.

Some people have mild symptoms, while others have problems that are moderate or severe, taking the form of attacks or ‘relapses’ (a temporary worsening of symptoms). Other people experience a slow, sometimes almost imperceptible change in their physical condition with no obvious attacks.

Unfortunately there is no one single test or procedure that can be used to diagnose MS. Sometimes people are offered an initial diagnosis, which turns out to be incorrect. It is often a case of watching and waiting to see if new symptoms appear or previous symptoms recur. This process can be frustrating; it is hard to accept that a conclusive diagnosis can take months, or years.

Diagnosis is based on a number of things such as looking into medical history, neurological examinations and a series of tests. Other conditions need to be ruled out before a diagnosis can be confirmed.

Numbness/tingling in the legs and arms is the textbook definition of "peripheral neuropathy." This is a common symptom in many conditions. In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

My advice?
1. Compose a written list/timeline of all your symptoms.
2. Take this list and discuss it with your GP again.
3. Develop a game plan with your GP to investigate possible causes for your symptoms. (By the way, he is incorrect that an MRI will rule out MS – there is no definitive test to confirm or rule out MS.

Since it is estimated that 40% of the American population has suboptimal vitamin B12 levels, and this is first on the University of Chicago list to be investigated, I would suggest to start there. Unfortunately, most US doctors rely only on the outdated "serum B12" test to uncover a deficiency. The newer, more reliable HoloTc test is not yet available everywhere –if available in your area, this would be preferable to the "serum B12." In addition, the serum homocysteine test AND the methylmalonic acid test (either the urinary form or the serum form) should be done to confirm the status of the B12 level. By the way, if testing will be done, do NOT take vitamin B supplements before testing, as this will skew test results.

All the best to you; please let us know how it goes.

[banff098]

Thank you so very, very much for your thorough reply. I am so despondent - seems like every day it's something new for me to deal with. Today, the strange thing with my knee really scared me - the twitches have diminished considerably over the last couple of days, but my leg "feels" like it's numb. I went to a doctor today that thought my thyroid might be out of whack - but he agreed that I need an MRI. I think we live in a world of "I want it now" - and I guess I'm impatient when I'm having all of these symptoms and don't know why. It's so scary and I feel all alone. My poor husband doesn't know what to do. Thanks again for all of your information - I'm hoping that I will get to the bottom of this eventually.

Christine

[lyndacarol]

I am so despondent - seems like every day it's something new for me to deal with. Today, the strange thing with my knee really scared me - the twitches have diminished considerably over the last couple of days, but my leg "feels" like it's numb. I went to a doctor today that thought my thyroid might be out of whack - but he agreed that I need an MRI. I think we live in a world of "I want it now" - and I guess I'm impatient when I'm having all of these symptoms and don't know why. It's so scary and I feel all alone. My poor husband doesn't know what to do. Thanks again for all of your information - I'm hoping that I will get to the bottom of this eventually.

Christine, you have found new friends here at ThisIsMS – friends who understand. We understand the roller coaster of emotions, we understand the fear of uncertainty, and we are certainly all impatient.

Your doctor is right to check thyroid function; the University of Chicago listed it as well as liver and kidney functions. Most of us have had an MRI; but, remember, even if lesions (white spots) are found on the brain, lesions are not exclusive to MS – lesions are found with migraine headaches; lesions are found with B12 deficiency; lesions are found with many other conditions.

We have all felt alone at some time, but you are NOT alone, Christine! We are here to answer questions and share opinions, when asked.