symptoms...curious...just need to vent a bit

[springmac]

So...a few months ago(March), I started to have some strange symptoms. The second toe on my left foot started raising and lowering on it's own. It makes me crazy! Also, the toes on that foot at times feel as though they are freezing, even in hot weather (I'm in Florida, so it's ALWAYS hot). I also noticed weakening in my hands on that side, dropping things and what not. I hate going to the doctor, so I chalked it up to stress. The symptoms did go away for a few months. About a month ago, they came back, along with heavy shaking of my hands. I also started having chest tightening/pain and vision blurriness in right eye. I figured blurriness was a change in my eyesight, but chest tightness became so severe, my hubby insisted on taking me to ER. EKG was normal, but while in ER, the nurse asked if my pupils are always abnormal. Not to my knowledge. She showed me and my right pupil was MUCH larger than my left (causing blurry vision in my right eye). This pupil abnormality has been going on since then. At times, my right pupil is so large I can barely see the iris. It also doesn't respond to light at times. I've been to the optometrist, but she says eyes appear normal (other than wonky pupil), so she referred me to a neuro-opthamologist. I know there are a multitude of diseases which mimic MS, but I'm still concerned it could be MS. My appointment is Monday. Any suggestions of questions I should ask while I'm there. I would also like to add that I've visited a cardiologist, and the heart appears fine. Thanks in advance!

[ElliotB]

What kind of doctor are you going to see?

[NHE]

So...a few months ago(March), I started to have some strange symptoms. The second toe on my left foot started raising and lowering on it's own. It makes me crazy! Also, the toes on that foot at times feel as though they are freezing, even in hot weather (I'm in Florida, so it's ALWAYS hot). I also noticed weakening in my hands on that side, dropping things and what not. I hate going to the doctor, so I chalked it up to stress. The symptoms did go away for a few months. About a month ago, they came back, along with heavy shaking of my hands. I also started having chest tightening/pain and vision blurriness in right eye. I figured blurriness was a change in my eyesight, but chest tightness became so severe, my hubby insisted on taking me to ER. EKG was normal, but while in ER, the nurse asked if my pupils are always abnormal. Not to my knowledge. She showed me and my right pupil was MUCH larger than my left (causing blurry vision in my right eye). This pupil abnormality has been going on since then. At times, my right pupil is so large I can barely see the iris. It also doesn't respond to light at times. I've been to the optometrist, but she says eyes appear normal (other than wonky pupil), so she referred me to a neuro-opthamologist. I know there are a multitude of diseases which mimic MS, but I'm still concerned it could be MS. My appointment is Monday. Any suggestions of questions I should ask while I'm there. I would also like to add that I've visited a cardiologist, and the heart appears fine. Thanks in advance!

Welcome to ThisIsMS. I'm not sure what to say about your eye problems. I hope that the neuro-opthamologist will be helpful for you.

With respect to the chest tightness symptom, one thing that can be easily overlooked is an elevated level of homocysteine. This is a cardiotoxic amino acid that can build up when certain other vitamins are low, i.e., when folate, vitamin B6 or vitamin B12 is low. Chest tightness can be a symptom attributed to elevated levels of homocysteine. It may be appropriate to request a full diagnostic for B12. This includes tests of serum vitamin B12, serum or urinary methylmalonic acid (MMA), red blood cell (RBC) folate and homocysteine. If you're experiencing neurological symptoms, you want your B12 to be greater than 500 pg/mL. However, the range for homocysteine is 4-12 µmol/L and one medical group in my area wants to see it less than 9 µmol/L due to the increased risk of heart attacks associated with elevated levels.

[springmac]

Thanks for the replies! I am seeing a neuro opthamologist tomorrow morning. Thank you to the 2nd poster for the info. I did have a full physical over the summer. I take a preventative med for migraines, and my doctor required a physical for refills. I'll check the lab work to see what tests she ran. Everything was normal, but she may not have run the tests you mentioned. I did mention the toe twitching to her during my physical, but she seemed unconcerned about it. Thanks again!

[ElliotB]

Since you suspect MS or a disease similar to MS, you probably want to also see a neurologist who specializes with MS.

[lyndacarol]

I am seeing a neuro opthamologist tomorrow morning. Thank you to the 2nd poster for the info. I did have a full physical over the summer. I take a preventative med for migraines, and my doctor required a physical for refills. I'll check the lab work to see what tests she ran. Everything was normal, but she may not have run the tests you mentioned. I did mention the toe twitching to her during my physical, but she seemed unconcerned about it.

Welcome to ThisIsMS, springmac.

Any doctor (even your GP) can order the tests mentioned by NHE. When you check the tests ordered by the doctor you see for migraines and if you find that you have NOT had these tests, consider calling her office and asking for #1 a serum B12 test; #2 a serum or urinary methylmalonic acid (MMA) test; #3 a red blood cell (RBC) folate test and #4 a serum homocysteine (Hcy) test, as listed by NHE.

These tests are not routinely done as part of a physical exam. They must be specifically ordered by your doctor.

Also, do not take vitamin B supplements before testing as this will skew test results. It is a good idea to request your own copy of test results – it is useful to have the actual number results.

[springmac]

Thanks again. I'll check with my pcp, as well as the blood work they ran when I was in the ER a few weeks ago. I'm not seeing an MS specialist because, honestly, I'm not sure what this is. I don't want to put the proverbial cart before the horse. I have this fear in the back of my head that it could be MS, but I also realize it really could be anything. I truly appreciate the info you've given me, and I'll let you know how my appointment pans out tomorrow.

[springmac]

Back from the neuro opthamologist. He observed the pupil abnormality, and I told him about other symptoms. Said he's not concerned given my history of migraines, he feels it's a type of migraine I'm having, even though I have no migraine headache. He did ask if I've ever seen a neurologist, but didn't recommend that I see one.

[lyndacarol]

Back from the neuro opthamologist. He observed the pupil abnormality, and I told him about other symptoms. Said he's not concerned given my history of migraines, he feels it's a type of migraine I'm having, even though I have no migraine headache. He did ask if I've ever seen a neurologist, but didn't recommend that I see one.

Thank you for the update. As you probably know, migraines are common to many conditions, one of which is vitamin B12 deficiency.

Since a study found that 40% of the American population has suboptimal B12 levels, I think this possibility should definitely be investigated by your PCP. The 4 initial tests, listed by NHE, are easy and relatively inexpensive.

[ElliotB]

If you have good medical insurance, you may want to consider seeing a neurologist. My PCP was not concerned with some of my symptoms either and the 1st neurologist I saw (who was not one that specialized in MS) was certain I did not have MS. While the doctor you saw may be right, it may be in your best interest to get a 2nd opinion. How you proceed from here is totally up to you. My philosophy, better safe than sorry...

[springmac]

I'll talk to my husband and see what he thinks. Part of me feels like I should get a second opinion because the diagnosis given doesn't account for the other symptoms I'm having (numbness, twitching, weakness in hands at times). But I also don't want to seem neurotic. I'm not sure what to do.

[lyndacarol]

I'll talk to my husband and see what he thinks. Part of me feels like I should get a second opinion because the diagnosis given doesn't account for the other symptoms I'm having (numbness, twitching, weakness in hands at times). But I also don't want to seem neurotic. I'm not sure what to do.

I suggest you start by reading through the following website, including all the tabs: http://b12awareness.org/about-b12/signs ... -children/

Your symptoms of numbness, twitching (tremor?), weakness in hands/arms are listed there, including your blurry vision (visual disturbances).

By the way, if the MCV (Mean Corpuscular Volume) number, found in your CBC (complete blood count), is in the upper end of the reference range, it indicates macrocytosis (enlarged red blood cells), one of the hematologic signs of B12 deficiency. Check the MCV line on your latest CBC.

[springmac]

Update: I decided to follow up with a Neurologist, who reviewed the opthamologist's notes with me. I was a little upset, because the opthamologist wrote in his notes that he referred me for an MRI, but I refused. Not true at all. The neuro did an in office neurology test on me (reflexes, balance & such) and based on that she is sending me for 5 different MRI's of the brain and spine. In addition, she is sending me for bloodwork to test for Lupus, B12 deficiency and what not. She indicated she suspects MS, but as you've all stated, it is a disease of exclusion. MRI tests are later this week, bloodwork on the 21st & follow up with neurologist on the 7th. I'll keep you all posted.