Old 09-27-2018, 08:07 AM #1
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Default Help/advice about symptoms please!

Hi everyone. I have read through so many threads before joining and I think this board is a wealth of knowledge and a breath of fresh air from all of the scary stuff on google. I’d love it if you could offer advice on my symptoms, which seem a bit quirky to me. Any feedback is greatly appreciated!

This all started quite strangely. About a month ago I woke up and felt like there was a thread wrapped around my second toe. When pressure was put on it when walking I could feel pins and needles. This only lasted a day and I brushed it under the rug as it was strange but went away. A few days later I was filling out some paperwork and my left arm felt strange. Then it went numb for a while and I was left with a muscular pain in the top of the arm. Felt like I’d lifted something heavy. But it subsided the next day, just as quickly as it came. That night my feet felt odd, warm almost. Then they went numb.

This promoted me to visit my PCP. He did CBC blood work, b12, and I later had an ekg and a ct scan. Everything looked fine but symptoms worsened. I developed the muscle twitches. They are all over, creepy crawly sensations. But when I try to sleep, the moment when you’re awake but almost asleep, my muscles start jerking causing me to wake. I’ve been up until 6 am some nights because it happens everytime I try to go to sleep, which prevents sleep. I am off balance. I don’t know if it’s technically vertigo as the room doesn’t spin but I just feel “off” and I bump into things. In addition to this I get strange sensations in my jaws that makes it uncomfortable to eat. I’ve lost 8 lbs in 2 weeks.

Most things do come and go, but I don’t have a lot of one when I’m not bothered by something. And most recently it’s been dull pain. In small patches about the size of my hand. On my arm or leg in different areas. I have what I feel is weakness in the legs. I have stairs in my house and when I go up or down them my legs are shaky, like I’ve been out running a few miles. Sometimes that strange “thread around the toe” symptom pops back up, but not often. But the twitches are my biggest complaint.

I started seeing a neurologist who did a brain and cervical spine mri which came back clean and cleared me of ms. At my appointment yesterday she prescribed me efflexor and told me to return in 2 months, at which time if symptoms haven’t improved they would order a nerve conduction study. She didn’t want to do it now as she said it was a rough test and didn’t want to risk doing it too early for anything to show up. They also ran more blood work, a protein panel, magnesium, I’m not not sure what else. I always hype myself up that they’ll find a vitamin deficiency in my blood work and all will be well, but it always comes back ok. (Have had it checked at the ER and PCP)

Now I’m just in limbo with these symptoms. Sometimes the twitches are so bad I have to take Valium. I’m not a huge medicine taker so that really says something. I’m a stay at home mom to a two year old so and i just can’t keenup anymore. I would appreciate any insight you all may have!
God bless!

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Old 09-27-2018, 01:36 PM #2
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Default Re: Help/advice about symptoms please!

Blood tests for deficiencies don't tell the whole story -- only 1% or so of some show up in the blood that is drawn. So I would treat empirically and see where that takes you. Do/did you supplement at all? Is your diet well-balanced? Are you fully hydrated? Do you get enough sleep/exercise? You get the idea. Sometimes making twitches/pain better is a DIY project.

If you are not depressed/anxious apart from your physical issues, I would question the indication for an SSRI (Effexor) that itself can cause twitching and sleep issues.

Were you screened for RLS/PLMD?

Has someone watched you sleep to see if you are folding into an awkward/pressured posture? How old is your pillow/mattress?

I would also question whether you "have to take Valium" as sporadic dosing of a benzo has its own down sides and to some extent all you may be doing is counteracting the Effexor.

Anyway, you get the idea. There are things to try, but no need to worry about ALS from what you have described.

Best,
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Old 09-27-2018, 01:45 PM #3
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Default Re: Help/advice about symptoms please!

Thank you Laurie, I was hoping you would reply as I have already saw you giving good advice to others. As far as diet and exercise, I have no reason to think it isn’t good enough. I eat 3 meals a day, and moderately exercise. (Swim, walk, etc.)
My husband claims that I sleep “normal.” As in, nothing has changed that he has noticed other than the onset of twitching.
I haven’t taken any Valium with the Effexor. I just had the first dose today. Out of a bottle of 20 Valium, I’ve only taken 2 total. I only do it when I completely give up on the ability to fall asleep on my own.
I don’t think I have any abnormal amount of anxiety in my life normally. I have 2 teenagers and a toddler, so the normal amount you would expect with that. I am super anxious now that all of this ha started though. I can put it out of my mind sometimes but it comes right back when something frustrating happens. (Like shaky legs after going upstairs, etc.)
I have not been screened for RLS or PLMD. My neuro has not said anything about these things. Up next is the EMG if symptoms don’t subside in 2 months.
I just feel like this is such a frustrating process. So much waiting, just allows so much time for worry.
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Old 09-27-2018, 02:28 PM #4
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Default Re: Help/advice about symptoms please!

I would certainly ask about RLS/PLMD. Twitching while trying to fall/stay asleep is characteristic. This is the most often used screening question:

“When you try to relax in the evening or sleep at night, do you ever have unpleasant, restless feelings in your legs that can be relieved by walking or movement?”
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Old 09-27-2018, 03:37 PM #5
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Default Re: Help/advice about symptoms please!

Could that explain all of the symptoms though? The “quivering” muscle spasms during the day and that my arms also do it?
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Old 10-08-2018, 10:06 AM #6
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Default Re: Help/advice about symptoms please!

Just wanted to update. I ended up going to the Er and was admitted into the hospital for a night. I told them all of my strange symptoms and the factor that caused them to admit me was brisk reflexes. It is all of them, not just specific ones. During my time there they did a lot of blood work. The blood work showed low (20) CK, and low vitamin D, and which not clinically low, lower levels of B12 than they would expect in a 34 year old woman. They’ve started me on a hefty vitamin regimine. Been on all of the vitamins for a week and a half now and instead of any improvement I’m only developing new symptoms. The most annoying of which are twitches in my right toes, and fasc which is still have all over but most notebly in my right upper leg. And the weakness and stiffness of my lower legs is really affecting my ability to do things. I do have followup next week. Questions...does anyone have experience with vitamin deficiencies causing such problems? I also know anxiety isn’t helpful so I’ve been working hard to keep my mind off of this, but it’s hard when you’re out doing things and your body is constantly reminding you by exhibiting these symptoms.

Thank you in advance for any advice or experiences you can offer me.
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Old 10-08-2018, 10:13 AM #7
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Default Re: Help/advice about symptoms please!

Low vitamin d has been reported here with people having symptoms similar to yours and those who reported back said they eventually improved with replacement though it was a slow process. B12 deficiency was one of the things that my neurologist thought particularly important to rule out for me even though I am gene positive FALS
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Old 10-08-2018, 03:41 PM #8
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Default Re: Help/advice about symptoms please!

RLS/PLMD (and other disorders, certainly) can manifest in all four limbs as well as day and night.

In answer to your question about vitamin deficiencies, whatever percentage of your issues they may have caused/made worse isn't going to go away in a week or two. Supplements don't work that fast, and jittery muscles don't calm down immediately unless you sedate yourself (as with the Valium, but a bad idea generally as we have discussed). Also, blood work doesn't show the full picture as very little of some nutrients shows up in blood levels, and of course all nutrients interact.

Another thought to ponder is improving your diet to address these deficiencies on an ongoing basis and ruling out, with an internist, diseases that might lead to these deficiencies. If you're deficient in a couple of things that have been identified, likely there are others that weren't.

So give yourself some time and see what shakes out. But I would certainly ask the neuro about RLS screening if the answer to the earlier screening question I posed is "yes."
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Old 10-08-2018, 03:46 PM #9
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Default Re: Help/advice about symptoms please!

Thank you! I have been working on improving my diet since I was made aware of the deficiencies. I’m also looking into seeing a nutritionist even though I don’t think I’m that terribly unhealthy. I want to do all I can to feel better. It’s just rather hard to accept that a few low vitamins can cause such symptoms. Cue the anxiety...

Any ideas on how long something like this takes to level out? My neuro said “some people feel better almost instantly, some people take about a month.” Meanwhile developing new symptoms is scaring me.
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Old 10-08-2018, 03:54 PM #10
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Default Re: Help/advice about symptoms please!

Don't think of them as new symptoms as they are likely related.

I wouldn't mark a calendar date, just do everything in your power to feel better over the long term, including thought to massage, hot tub, stretching/Pilates/ballet/tai chi on YouTube/classes, and you soon will. And the more you think about it, the worse you will feel, naturally, so find more fun ways to spend your time.
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Old 10-08-2018, 03:57 PM #11
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Default Re: Help/advice about symptoms please!

Thank you. I am taking my 2 year old to Disney for the weekend soon so I’m hoping that’ll be a nice distraction. I will update after seeing my neuro on Wednesday as I appreciate the insight here. It’s hard for me to completely put aside worries about something more than this since I haven’t had an emg. They are talking about scheduling one if I don’t show improvement in symptoms though.
Thank you again for your valuable advice!
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Old 10-08-2018, 08:45 PM #12
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Default Re: Help/advice about symptoms please!

Hi Desha, I can relate.

First, note that I do not have ALS. My wife did, so I've been a member here since 2011. Nearly every day I read most all of the Do I Have ALS posts. Yours rang a special bell.


I recently went to the ER because my whole body twitched and bounced so much I hit the panic button for an ambulance. Normally, I just laugh at my Periodic Limb Movements, my muscle bounces, and twitches, but suddenly it was 1000 times worse. It was a new pill. Two days to wash it out of my system, and I was back to my normal, sleepless self. My "normal" is 4 hours of sleep, or sometimes none at all.



Restless Legs can also be Restless Everything. My arms sometimes just shoot up into the air for a moment, just like a leg will just suddenly kick. Sometimes there's a creepy-crawly feeling beforehand, sometimes there's not. This started when I was 25. I'm 62 now.



I refuse to "try to sleep" when I know I'll lose the battle. So if I haven't fallen asleep in 30 minutes, I get up and get busy as though it were a new day. The key is to stay busy and don't worry about the problem.


Medications can take time. Sometimes they're fast, when I first started a Zoloft, I was cured within a couple hours. On the other hand, it has taken several years and several different drug combinations and different dosages to bring my body to a "normal" state that feels right and doesn't bounce or twitch.


Watch the Valium/Effexor combination. Usually they make things better. Could make it worse for a day.


In any case, we're not talking about ALS here. You really should forget about that. Let us know what the EMG report says. Enjoy Disney.
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Old 10-08-2018, 08:59 PM #13
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Default Re: Help/advice about symptoms please!

Mike, thank you for your reply. I totally get it about just getting up when you can’t sleep. Everyone tells me I “need to rest.” But I feel like it’s a battle when I go to bed. I don’t drift peacefully to sleep anymore like everyone else. . I deal with crazy symptoms all day and then I go to bed and start dealing with even more.

As far as the Effexor, I’m not taking it anymore. After a few days I started throwing up everytime after I ate. I stopped taking the efflexor and it stopped happening, so that clearly wasn’t the right drug for me. I will ask about an alternative when I go for follow up on Wednesday.

Thank you for taking the time to respond to my post. I really appreciate it!
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Old 10-08-2018, 09:27 PM #14
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Default Re: Help/advice about symptoms please!

I wouldn't go back on another SSRI or SNRI (the latter is what Effexor is) until RLS/PLMD is ruled out. Those classes often make those worse.
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Old 10-08-2018, 10:34 PM #15
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Default Re: Help/advice about symptoms please!

Thank you, I will keep that in mind when discussing medication with my doctor.
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