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Hello!

I'm a 42 year old mother of 4 boys in California. I have had tremors in both hands (more so on my right side) for nearly 12 years now. Almost 9 years ago, I woke up early one morning unable to swallow, move my right side, and had horrible neck pain and numbness. I thought I might have been having a stroke, so 911 was called and they took me to ER. They did an x-ray of my neck and that came back normal. They gave me all kinds of drugs to take for the pain and whatnot and sent me home. I went to work that day, still in pain, but as the day progressed, I lost muscle strength in my left arm and by the end of the day I couldn't lift my arm at all. I had to use my right hand to lift my left hand if I wanted to type something. I couldn't do my hair, my sister had to do it for me. I noticed my muscle in my upper left arm get weird and as if it was atrophying. It's had a lump in it ever since the incident. I was sent to a neurologist and then a spinal surgeon who told me I had a herniated disc in my neck and that I needed surgery. I was given a set of 3 epidural injections, which did nothing for me except wear me out. I put off surgery and just lived my life....tremors and all. Fast forward to the past year: I have had numerous issues with my neck - losing range of motion/mobility/turning, pain, arthritis, bone spurs, etc. But nothing like now....
I have had this pinched nerve feeling that runs down my spinal cord and my right arm for the past 6-7 weeks. Constant pain...sometimes it lets up a little bit, but it's always there and it drives me nuts!! I have been taking Neurontin for the last couple months now, which helps in taking the edge off, but not all of it. My doctor referred me to a neurosurgeon, thinking it's all my herniated discs. I went and saw the neurosurgeon a couple weeks ago and he said I didn't need surgery for the herniated discs and that they weren't that bad. Okay cool. He proceeded to do reflex tests on me and confirmed I have bilateral Hoffman's sign. He seemed pretty concerned with that finding and was more focused on that now more than my herniated discs. The herniated discs have always caused issues with my left side, never my right side. So, he has put in for me to get a Nerve Conduction Test and then I am supposed to go back to him. I didn't bring up my tremors or anything else, except when this all started when I had to get taken to the ER.

So, here I am...not sure what to think....I've looked up Hoffman's as the doctor didn't say anything to me while I was there. With that finding and going over everything I have been going through for years....would it make sense it could very well be MS instead of another neuro disease/disorder? I had read an article that a woman was diagnosed with MS from having an ear infection, which was odd, but then when I thought about me....I haven't had ear infections or any issues with my ears since I was 8 years old and I had my tonsils removed. In the last 2 months, I've had double ear infections, ear aches, etc. Very odd for me. My eyesight is blurry (I really need to see an eye doc as I haven't been in 10+ years) and have trouble reading what's on the TV, but I liken this to just my age.

Any insight would be greatly appreciated. I'm not sure if I need to worry or what. I am getting educated, just in case.

Thank you!

A couple other things I forgot to mention:

I ache from the waist down when I'm super tired
I tend to be exhausted all the time, sometimes to the point of falling asleep at the wheel in the middle of the day
headaches
acid reflux (for the past 5 years)
Since I've had this pinched nerve feeling running down my spine, it often feels like a cold burn and just this electrical shock. So painful, constantly!

heathereeni wrote:I'm a 42 year old mother of 4 boys in California. I have had tremors in both hands (more so on my right side) for nearly 12 years now. Almost 9 years ago, I woke up early one morning unable to swallow, move my right side, and had horrible neck pain and numbness. I thought I might have been having a stroke, so 911 was called and they took me to ER. They did an x-ray of my neck and that came back normal. They gave me all kinds of drugs to take for the pain and whatnot and sent me home. I went to work that day, still in pain, but as the day progressed, I lost muscle strength in my left arm and by the end of the day I couldn't lift my arm at all. I had to use my right hand to lift my left hand if I wanted to type something. I couldn't do my hair, my sister had to do it for me. I noticed my muscle in my upper left arm get weird and as if it was atrophying. It's had a lump in it ever since the incident. I was sent to a neurologist and then a spinal surgeon who told me I had a herniated disc in my neck and that I needed surgery. I was given a set of 3 epidural injections, which did nothing for me except wear me out. I put off surgery and just lived my life....tremors and all. Fast forward to the past year: I have had numerous issues with my neck - losing range of motion/mobility/turning, pain, arthritis, bone spurs, etc. But nothing like now....
I have had this pinched nerve feeling that runs down my spinal cord and my right arm for the past 6-7 weeks. Constant pain...sometimes it lets up a little bit, but it's always there and it drives me nuts!! I have been taking Neurontin for the last couple months now, which helps in taking the edge off, but not all of it. My doctor referred me to a neurosurgeon, thinking it's all my herniated discs. I went and saw the neurosurgeon a couple weeks ago and he said I didn't need surgery for the herniated discs and that they weren't that bad. Okay cool. He proceeded to do reflex tests on me and confirmed I have bilateral Hoffman's sign. He seemed pretty concerned with that finding and was more focused on that now more than my herniated discs. The herniated discs have always caused issues with my left side, never my right side. So, he has put in for me to get a Nerve Conduction Test and then I am supposed to go back to him. I didn't bring up my tremors or anything else, except when this all started when I had to get taken to the ER.

So, here I am...not sure what to think....I've looked up Hoffman's as the doctor didn't say anything to me while I was there. With that finding and going over everything I have been going through for years....would it make sense it could very well be MS instead of another neuro disease/disorder? I had read an article that a woman was diagnosed with MS from having an ear infection, which was odd, but then when I thought about me....I haven't had ear infections or any issues with my ears since I was 8 years old and I had my tonsils removed. In the last 2 months, I've had double ear infections, ear aches, etc. Very odd for me. My eyesight is blurry (I really need to see an eye doc as I haven't been in 10+ years) and have trouble reading what's on the TV, but I liken this to just my age.

Any insight would be greatly appreciated. I'm not sure if I need to worry or what. I am getting educated, just in case.

Welcome to ThisIsMS, heathereeni. First, I will address the last sentences in your initial post: here are my thoughts; I don't think you should worry – in my experience, "worry" doesn't seem to help anything; I am all for "getting educated."

Your symptoms are common to many conditions. MS is just one possible cause, but MS is a diagnosis of exclusion, made only after the other more likely possibilities have been rule out.

B12 deficiency is another possible cause for your symptoms. If one of your doctors has ordered a panel of tests (which includes #1 a serum B12, #2 a serum or red blood cell folate test, #3 serum homocysteine test, and #4 a methylmalonic acid test – some experts consider the urinary form of the methylmalonic acid test, a.k.a. MMA, to be more accurate than the serum form), I encourage you to post the actual number results, if you are willing to share your information.



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their new book, What's Wrong with My Child?, which may be available at your library); 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).

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."

Please note that extreme fatigue is mentioned over and over in the video – on numerous lists, also by MDs. Any person at any age can develop B12 deficiency. Also, please note that pregnancy is a great drain on B12 stores… With 4 boys and tremors starting 12 years ago, could this have been a contributing factor to the start of a B12 deficiency? You mention a history of swallowing difficulty (a.k.a. dysphasia) – this is also mentioned in the video. And "numbness" or tingling in the extremities is the most common symptom reported by those with B12 deficiency.

In my opinion (I have no medical background), an investigation of this very common deficiency is the place to start. By the way, do not take vitamin B supplements before testing is done, as this will skew test results.

We wish you all the best; please let us know how it goes with you.

heathereeni wrote:My doctor referred me to a neurosurgeon, thinking it's all my herniated discs. I went and saw the neurosurgeon a couple weeks ago and he said I didn't need surgery for the herniated discs and that they weren't that bad. Okay cool. He proceeded to do reflex tests on me and confirmed I have bilateral Hoffman's sign. He seemed pretty concerned with that finding and was more focused on that now more than my herniated discs.

Upon further reading, I have focused on your sentences above. A positive Hoffman's sign is associated with lesions in the corticospinal tract of the spinal cord. In my opinion, this again points to a possible B12 deficiency.

A long-term, untreated B12 deficiency can lead to Subacute Combined Degeneration of the Spinal Cord, which involves demyelination of various tracts in the spinal cord (which can include the corticospinal tract)..

Any of your physicians can order the tests for B12 deficiency (but if they are uncomfortable in this area, ask for a referral to a hematologist). Unfortunately, doctors in the US frequently rely only on the outdated "serum B12." This is OFTEN not adequate to discover a deficiency. If the newer, more reliable HoloTranscobalamin (a.k.a. HoloTc) test is available in your area, ask for this blood test. Also, ask for the serum homocysteine (Hcy) test and the serum or urinary methylmalonic acid (MMA) test.

Thank you so much. I just scheduled my nerve conduction study....in September. I think I will pull my hair out before then with this pain.
I will talk to the neurosurgeon about a possible B12 deficiency as well.
Thank you again.

I am going back to the neurosurgeon next week as I have been having issues with my lower legs - numbness in some areas and my left foot kept giving out on me last week. They wanted me back in right away. With that said, I plan on asking for blood work to be done as well as an MRI w/ and w/out contrast to rule anything out. I figure it can't hurt and we can start eliminating things.

I did notice last night as I was knitting (I had stopped for a while) that my right hand kept getting numb on me. It had done this before and I never thought anything of it, but isn't it weird for it to get numb? I'm guessing it's the nerve issues I'm having, which are driving me insane and up a wall!!

heathereeni wrote:I am going back to the neurosurgeon next week as I have been having issues with my lower legs - numbness in some areas and my left foot kept giving out on me last week. They wanted me back in right away. With that said, I plan on asking for blood work to be done as well as an MRI w/ and w/out contrast to rule anything out. I figure it can't hurt and we can start eliminating things.

I did notice last night as I was knitting (I had stopped for a while) that my right hand kept getting numb on me. It had done this before and I never thought anything of it, but isn't it weird for it to get numb? I'm guessing it's the nerve issues I'm having, which are driving me insane and up a wall!!

First of all, remember that testing for a possible B12 deficiency is usually blood (a.k.a. serum) testing; but the methylmalonic acid (MMA) test is also available in a urinary form (uMMA), which some experts consider to be more accurate. The serum MMA test results can be unreliable if you are taking antibiotics at the time. I do not advocate one form or the other; the choice is yours, of course, and depends on your situation – I only wish to offer you information.

I think your plan to "start eliminating things" is a good one. And about the numbness in your right-hand… I agree with you that it is not normal, certainly not with knitting. Now, if you had been operating a jackhammer all day,…

Good luck next week with the neurosurgeon. Please keep us informed.

Went to the neurosurgeon today. This time they had me walk and do a gait test. They also checked my reflexes again. I have an MRI scheduled to check my brain next and a referral to a neurologist. My nerve conduction study is still scheduled for September, but hopefully, with the neurologist referral, maybe I can get that done sooner. Hubby is worried and I'm trying not to "cross bridges" before we get there. The neurosurgeon said that my neurologist would be the one to order labs and further testing.
My lower left leg has been off/on getting numb/tingly and my left foot has given out and seemed a bit "floppy". We'll see how the neurologist apt goes soon.

heathereeni wrote:Went to the neurosurgeon today. This time they had me walk and do a gait test. They also checked my reflexes again. I have an MRI scheduled to check my brain next and a referral to a neurologist. My nerve conduction study is still scheduled for September, but hopefully, with the neurologist referral, maybe I can get that done sooner. Hubby is worried and I'm trying not to "cross bridges" before we get there. The neurosurgeon said that my neurologist would be the one to order labs and further testing.
My lower left leg has been off/on getting numb/tingly and my left foot has given out and seemed a bit "floppy". We'll see how the neurologist apt goes soon.

We know only too well that this period of "un-diagnosis" is a difficult time; it is only natural that your husband (and you) worry. I wish I had the words to calm your fears – other people here are more eloquent. You are doing all you can to investigate your "mystery" logically, step-by-step.

Go with your neurosurgeon's suggestion, of course, and work with your neurologist. Take your written list of symptoms to him again and discuss ruling out the possibility of B12 deficiency. Initial testing for this usually includes the following (which are LOTS less expensive than the usual neurological tests:

Costs (approximate) of commonly used blood tests for B12 deficiency (From page 156 of What's Wrong with My Child? by Sally M. Pacholok, RN, BSN and Jeffrey J. Stuart, D.O.).

Serum B12 (outdated test)… $50
HoloTc (newer, more reliable)… $118
Serum homocysteine… $147
Methylmalonic acid test (serum or urinary form)… $150

The serum or RBC folate test is also usually included in initial testing.

Please let us know how the appointment with your neurologist goes.

Hello!

My brain and spine MRI's were both normal. My labs all confirm normal ranges for B-12 and they have ruled out Lupus and other autoimmune diseases. I see my neurologist on Monday and Tuesday. My tremors have increased and gotten worse, as with some other issues as well. I am on a steroid right now to see if it will help my foot-drop.

Not sure what to think anymore. My mood swings are almost daily, sometimes I just cry (for no reason) and other times I just feel extremely exhausted and I sleep/nap for hours at a time. Feels like I have never slept when I wake up in the mornings. So very frustrating, but hoping for some answers next week. I also have my nerve conduction study as well.

heathereeni wrote:My labs all confirm normal ranges for B-12 and they have ruled out Lupus and other autoimmune diseases. I see my neurologist on Monday and Tuesday. My tremors have increased and gotten worse, as with some other issues as well. I am on a steroid right now to see if it will help my foot-drop.

It is wise to request your own copies of any test results. I am curious to know your lab's "normal range for B12." And what were the actual numbers for your blood sample?

I assume only the serum B12 test was done on you. The "normal" range in US labs is considered to be set too low by most experts. In the US, B12 levels below 200 pg/mL are considered to be deficient; in Japan, levels below 500 pg/mL are "deficient" and treated as such.

Even a high B12 level in the blood can have a B12 deficiency in the cells, if the appropriate transporter is not there to carry the B12 to the cells. Will you share the values found in your serum homocysteine test and in your methylmalonic acid test? (These two tests are needed to confirm serum B12 test results.)

My B12 levels were at 712. It was the blood test (serum).

heathereeni wrote:My B12 levels were at 712. It was the blood test (serum).

A serum B12 level of 712 pg/mL certainly seems to show (by any range that I have read about) that there is no deficiency in the blood. However, the test alone is not adequate to rule out B12 deficiency.

But, as I stated earlier, there could still be B12 deficiency in the cells. In my opinion (remember, I have no medical background), your neurological symptoms could be the result of deficiency in the cells. The serum homocysteine test results and the methylmalonic acid test results could confirm that the serum B12 test results are accurate… Or the two tests (Hcy and MMA) could uncover an actual deficiency. These two tests are relatively inexpensive (about $100 or $150 each) and might reveal valuable information.

Well, I saw the 2nd opinion neurologist and they did an EMG on my lower extremities. No nerve issues were found. Rules out peripheral neuropathy. Also ruled out chronic fatigue syndrome. They sent me to a rheumatologist to rule out Fibromyalgia. Went to rheumatologist and he ruled out Fibromyalgia and said that my symptoms are all leaning towards MS, BUT they can't diagnose without lesions showing up on my MRI's, which there are none.

I am still having daily bouts of flu-like body aches (but I don't have the flu and haven't been sick). I have noticed though that each month during my period I get a flare-up of a red patch on the back of my throat and only on the left side. I have also been getting fever blisters on my lower lip around the same time. This is odd because I never had this problem before...until about May/June of this year. Last month I didn't have it though.

The docs have amped up my Gabopentin daily dosage and I'm at a complete loss. The neurologist says I don't have MS because lesions aren't showing up, but I don't have anything else. They have ruled out ALL other possibilities.

As of right now, I have asked for a referral with my insurance to go to UCLA to their MS clinic. I'm approved and waiting to get my appointment date. I'm not crazy, I know this! There is something wrong!

Another thing, I had to get glasses back in August (I'm chalking up my poor vision to just getting older) but now with my glasses, my eyes are now having trouble focusing and seeing clearly.

Soooo frustrating!!

Hi,

It doesn't look like you have had a thorough testing for infection. See if you can arrange to be tested for mycoplasma, for your symptoms in particular. It might also be worth testing for Lyme, babesia and borrellia if it exists in your part of the world or if you have travelled widely. A test for chlamydia wouldn't hurt either. If possible, arrange for a fecal test for pathogens as the blood test if you are well travelled.

Regards,