Numbness, twitching, weakness but clean EMG and MRI

Posted by tx2023 @tx2023, Jun 11, 2023

Hello, I have been going through this journey for a year. I really started noticing symptoms about five weeks after giving birth however I think I may have had some mild symptoms before then that I ignored like hands getting pins and needles when on my phone in the car or when going to the restroom my legs would fall asleep occasionally, and occasionally dropping my phone in the morning bc my hands felt stiff and weak and needed to be stretched out.

Before getting pregnant I noticed some issues with my eye sight with a very mild ache near eye brow and memory (went to eye dr and ent but told everything looked normal) which went away after getting pregnant.

Now to the symptoms- about five weeks after giving birth I woke up one morning with my ear numb (that went away when I moved it.) A week or so later I woke up with my left leg feeling like someone had placed their hand on my calf when I would stand on it and and tingly altered sensation on the mid of my back whenever bending over to pick up my children or wash my face. I went to the doctor who asked if I had dragged my toe or anything while walking and could remember about four times of my foot skimming the floor when walking or like stubbing it. She asked if my knee every bucked and I remembered they had a few times. I was sent for testing.

During this time over the next few weeks I got this tight weakness feeling in my upper left hip and I felt unsteady. I was afraid I would drop my baby. It was an extremely scary time. I had to be very careful going down the stairs (taking them one at a time). Also my legs just felt weak all over. My eye sight felt off too during this time and brain fog. I had three bought a of numbness on my face that was short lived. My arms felts weak off and on. I went to the neurologist-

She tested my reflexes and said that one arm seemed a little more brisk (when she asked about it I could tell that it felt different than the right arm when I would squeeze it) and one leg seemed more weak. Sent me in for and MRI of my brain and spine. It came back clear. Had an EMG that she did that came back clear (she is not a muscular neurologist though). Had tons of blood work done looking for vitamin deficiencies (low B12 but still not in the extreme range but low and started taking b12 vitamins and I have brought up levels), low vitamin d ( started taking vitamin d and brought up feel like it may have been from pregnancy bc they were in normal range during pregnancy), everything else normal, tested thyroid levels bc I’ve had half my thyroid removed for a nodule but were normal range, Lyme disease test, heavy metal test, paraneoplastic panel test, blood clot test bc I had Covid during pregnancy all came back normal. I had an MRV that showed a hypoplastic left transverse sinus which they said looks like I had forever.

During this time altered sensation got worse on my left leg and I felt like I couldn’t run if I wanted. However, I can still feel everything. I had nerve shocks going down the stairs in my feet and occasionally on my wrists when picking up children or when my shirt would rub it an awkward way, my entire mid back began to have an altered sensation I could feel it altered when my husband would sometimes rub my back at night. Later I would get an electric shock sensation on the side of my neck occasionally when turning it. My feet would get a shock whenever I would get out of bed in the morning. I would feel extremely shaky in my arms but not outwardly shaking and weak sometimes but eating helped.

Six months or so passed and my weakness improved. I went on vacation and walked a lot pushing my children in the stroller. By the end I felt a lot more strength but definitely not normal. I still had the altered sensation on my legs and more on my left but the electric shock on my feet going down stairs was gone. I still had shock getting out of bed unless I moved my feet in bed before getting out. I felt better but it definitely wasn’t gone.

Another three days months passes(9months sonar really noticing) and the altered sensation is still there on my legs but I still can feel everything (temp, light touch). The altered sensation on my mid back is still there. I went to the neurologist and she said all my reflexes were the same now all seem a little more brisk but some younger people have that and hers are even more brisk than mine. She said my strength was normal. I was afraid of atrophy but she said she didn’t really see anything. I felt a lump in my throat for three weeks that went away. I pointed out a spot on my hand and she said that could just be because you’re right handed that hand is a little larger right there on the side but she didn’t see any atrophy). I told her I had more strength but still felt weak. I can wake up and start walking and after walking more I feel weak at first but get more strength as I move. During this time twitching had started all over my body maybe a few months before. It had one hot spot on my right elbow but anywhere else was fair game. I had another EMG done by a neuromuscular specialist who just does EMGs at Methodist. She tested with the NCV two limbs and the EMG on all four limbs. It came back normal. No twitching was even picked up. I had another MRI of my brain, neck, and thoracic spine bc the numbness on back and I felt like my speech was hard sometimes and that came back normal. Had an MRA and that was normal. Had. CPK test that came back normal.

Now, the twitching isn’t as often but is definitely still there. I have altered sensation on my legs but more below knee and more on the left side and sometimes feels like patches more. I have a big patch of altered sensation mid back. Walking briskly helps and brings more strength. Walking slow around the house I don’t notice but when out and about I can tell I have less strength but it helps when I walk. My motor skills seem to sometimes be affected more on my left side but I can still do everything and the extent comes and goes but it always feels a little there. I first noticed it when all the symptoms first started and I was changing my babies diaper. I have more recently had jaw tightness sometimes and sometimes I feel like my speech is affected although no one had notice anything. A few times I have felt tightness in my neck and like it was hard to eat but was short lived (less than a day), a few times I have sucked a little water down (maybe three times). My eyesight feels normal now and not much brain fog anymore although I sometimes say the wrong word and quickly correct myself - that could be just from being a mom multi tasking. Recently after doing a morning workout before eating my thighs started shaking rhythmically. It stopped after eating. I did find out I have extremely low fasting blood sugar levels like 51 if I remember correctly. This was very scary though- I have never shaked (maybe temor?) like that before.

I Had my homocysteine levels checked half way through this which were in normal range even if a little high (9.7). My thyroid levels are normal even though I have had half my thyroid removed bc of a nodule- TSH 1.93 , T4 1.1, Free t3 2.9. My C reactive protein is 1.5 , ESR is 6, CPK test is in the low normal range, Lyme test clear.

Okay rushing and wasn’t able to check over for typos bc having to end this bc kids need me but May have forgot some things but does anyone have any ideas. We want one more baby but I feel very anxious about everything going on in my body. I just want this altered sensation, twitching, and weakness gone.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Also, if I hold my baby a lot that day or a heavy purse my upper trapezius is achy and it aches down my arm but if I don’t hold a lot of heavy things on that side it doesn’t. It feels good to massage that area. Also, I occasionally get a stabbing pain on my shin or other places but not very painful just a little noticeable but I don’t think they’re cramps but not sure. I did. have a little cramp on my toe once though.

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I have had some similar experiences. I tend to ask for a Western Blot Lyme test, not the Elisa, and there are disagreements about interpreting them. Some docs feel even one "band" (you'll see what I mean) that is specific to Lyme is a positive, whereas others (and the CDC) want a certain number of bands. You can check out lymenet.org for more info.

In my experience, autoimmune tests like the ANA uncovered some problems and recently the full panel, for me, showed scleroderma as well as lupus. However my rheumatologist always said my symptoms sounded more like MS.

The shock when moving your neck has a name (sorry I forget it) and is often indicative of MS. If I were you I would find a neurologist who specializes in MS (once Lyme and ANA are done). Of course I haven't done that myself and it's been years! But I am not bad enough to take the meds.

I have been told you can have normal MRI's and other tests with MS. In between abnormal ones. I hope you get an answer. But for a lot of us with these kinds of symptoms, it takes awhile because it crosses disciplines.

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@windyshores

I have had some similar experiences. I tend to ask for a Western Blot Lyme test, not the Elisa, and there are disagreements about interpreting them. Some docs feel even one "band" (you'll see what I mean) that is specific to Lyme is a positive, whereas others (and the CDC) want a certain number of bands. You can check out lymenet.org for more info.

In my experience, autoimmune tests like the ANA uncovered some problems and recently the full panel, for me, showed scleroderma as well as lupus. However my rheumatologist always said my symptoms sounded more like MS.

The shock when moving your neck has a name (sorry I forget it) and is often indicative of MS. If I were you I would find a neurologist who specializes in MS (once Lyme and ANA are done). Of course I haven't done that myself and it's been years! But I am not bad enough to take the meds.

I have been told you can have normal MRI's and other tests with MS. In between abnormal ones. I hope you get an answer. But for a lot of us with these kinds of symptoms, it takes awhile because it crosses disciplines.

Jump to this post

I had the ANA and ANCA test too and it was normal- the ANA was normal twice. I’ve been tested for Sjorgens too. My neurologist specializes in MS and said I don’t have it. She thought I could at the beginning but now she says that isn’t what is wrong. She did another MRI eight months later and everything was normal again. Also, she did my spine where I read a lot of people that end up finding something find something on the second MRI or on the spine since it wasn’t done at first but I’ve had my spine done twice.

I thought the neck shock was down the spine with MS? Mine was never liked that when I had it. It was only a little on the side of my neck when I turned.

Also, I have not had any more leg buckling for awhile now to add to the above post and I rarely drag my foot … for awhile it happened every day. Also, I was dropping light weight things more in the past and it is much much less often now (never heavy objects) and my voice seemed to feel like it would cut out at the end of words but I don’t have that issue anymore. However, the altered sensation on legs is more and sometimes I am tired climbing stairs but other times it’s normal.

Do you have numbness and twitching and some weakness? How long has it been going on if so?

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I definitely can still go up the stairs though just sometimes seems more tiresome but it’s not like I have to stop or anything.

Also, I wanted to add I saw a neuro opthalmalogist who did some specialized test to make sure my eyes did have that specific swelling that is associated with MS or NMO and all was normal as well. He said I just had dry eyes. I know my eyes were having more problems then than dry eyes but thankfully my eye issues have improved and the little pain on top side of eyebrow near nose bridge.

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