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PeJey

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Hello
I'm 24 years old. In November 2015, I started to complain of strange symptoms: pain and stiffness in the ankles, wrists, strange feeling and some kind of pains in the fingers, also I started feeling some muscle twitching. I also started to feeling forearms stiffness. I also felt some kind of leg heaviness, like I was fatigued (even If I did not do anything)
I decided to go to neurologist performing EMG (24/11/15). Up to this point - before the visit I was very nervous on my symptoms. A neurologist examined me and after hearing my symptoms said that there is nothing wrong with me and I do not have to worry about. She said that there is no point in doing EMG me but that if this will calm me down – she will do it Then she studied 3 of my muscles looking for some neuropathy (2 leg muscles and 1 hand muscle). EMG showed no neurogenic muscle damage.

Next on 15/12/15 again anxious about my symptoms – mainly muscle twitching, I decided to go back to the neurologist to perform full EMG test, that would rule out ALS. The doctor performed EMG and it showed no change nor in the nerves or muscles. (EMG included stomach muscle and tongue above others). Neurologist ensured me that I have no ALS and I left relieved that I'm okay. After the test, got the Doctor's suggestion to go to a psychotherapist because my problems result from the psyche. On the same day I did yet CK test, which also came out normal.

For the next month I had the relative ease from muscle twitching, fatigue legs and other symptoms. I signed up for treatment to a psychotherapist, I started going to the gym (approx. 2 times a week) and I started dance class.
At the beginning of the year (2016) for unknown reasons my head began to ache quite often I had also some pain in the neck especially on the right side. I had already such episodes of headaches in my life before (2.5 years ago) and suggested by my girlfriend to calm down I made MRI of the head - which showed no problems.

During one of my visits to a psychotherapist she asked me if I had done latent tetany test. I began to read about it on the Internet and I was glad that all my symptoms may be caused by this problem.
In late January my concern about ALS returned. Again, I have been feeling muscle twitching and began to worry. In addition, I began to feel a burning sensation in the muscles of the thumb puffs, triceps burning and burning sensation in the thighs. There was also pain in the feet, especially in the morning, in the right foot in the instep while walking. Again there is pain in the joints - wrists, ankles.
Since the first neurologist was on holidays I went to another one, which is the EMG provider in my City first only for a consultation. The visit took place on February 5, 2016. I told her my symptoms and worry of ALS. The doctor said that she is 100% sure it is not the disease. She recommended to do a test LTT in the direction of Lyme disease (I have to wait until mid-March, because I took an antibiotic). She also recommended treatment magnesium-vitamin B. I got to take a large dose of magnesium and vitamins B1 and B6 (up to 200 mg of B6 per day which is ca. 150 daily demand). That same evening I started taking vitamins I felt in my left leg like tingling, like worms crawling under the skin. I was very anxious after that and decided to repeat the EMG to rule out SLA once again, this time with the Neurologist, who commissioned the treatment of magnesium-vitamin.
On 9/02/16 I made an appointment and re-done EMG. This time, nerves were checked and only 3 muscle - language, thigh and thumb. The result was fully clean – no problems. The doctor assured me that this is not the disease. I asked whether the drug with vitamin B1 and B6 may be the cause of tingling and she said that I could have such feelings. I calmed down again. It seemed to me that after taking these vitamins and magnesium, the amount of muscle twitching decreased, however I started feeling more tingling (like above).

My fear, however, soon returned, which was connected with thighs tingling, arms tingling, and on the back. Again, I went to consult a neurologist (16/02/16), This time to the first one. The doctor assured me that my symptoms are 250% not ALS and suggested to go to the psychiatrist, and take some medication. She said that it is impossible to overdose on vitamin B6 and tingling that I felt are definitely not related to the SLA. On the same visit, I made a study of EMG interosseous muscle of the left thumb, because I noticed that it was trembling. The study came out normal. During the visit I complained to the Neurologist about sore, tired back in recent times, in addition to appearing muscle twitching. On the question of whether in the future I should repeat the EMG I got the answer that there is certainly not needed.
Same week that I was on this visit I started to feel some small difficulties with swallowing dry food. I was feeling like I need more chewing then before.

I went to a psychiatrist, where she started my treatment 19/02/16., I got to use an SSRI antidepressant - paroxetine. In the meantime, I felt intensified tingling in my thighs and arms, back, etc. I thought that the reason might be too large dose of vitamin B6 and despite assurances of neurologist that it was not possible, I quit taking the drug for a few days. Tingling seemed to give way a bit.

Last weekend, I started to feel pain in the shoulder, especially the left, sometimes right. It seems to me that it hurts collarbone. Twitching are mainly in the legs, they are sometimes small, sometimes a feeling of increased muscle contraction. Sometimes slower sometimes faster sometimes in a wider area and sometimes less. I also feel that the tingling or I just call this so is intensifying- it’s in the form of such sting like needles. The tingling is particularly happening in the legs (thighs in front of and behind, and sometimes in the feet, calves at the time), they can occur in the arms and forearms, but less frequently. Sometimes the entire foot or thigh feels like vibrating. Recently, I noticed it at home decreased appetite, and it seems to me that I have dry mouth for what I have trouble swallowing. With dry food I have something to sip, I have also to chew more than before (this is subjective).
After activity it seems to me that the twitching is intensified. I felt a lot of leg fatigue and weakness.
Within November to today, probably my weight has not changed. However, in the period from the end of January and now I lost about 2kg. (irrelevant?) (It may be associated with colds and cessation of walking to the gym).

From the beginning of last week 22/02/16 I have hoarseness and have to hawk from time to time. I feel like my voice is a little bit weaker I still feel like I still have some problems with swallowing dry food – I need to sip and I need to chew more. I also feel some kind of tongue stiffness, and sometimes pain under my tongue.
This week I’ve been to Neurologist again (the 3rd one) and after interview and reflexes examination and me showing him my EMGs, he told me that I have no ALS. I forgot to tell him about my small swallowing problem :)(). Do you think that I have to worry about ALS? I am trying to work out my anxiety problems, but I am not sure what to think about swallowing problem and hoarseness. Is it possible that these are bulbar ALS symptoms? My girlfriend is telling me that I am not slurring and that I have not been slurring during past 3 months since these symptoms began.

Sorry for such a long post :( I think that if not for me taking paroxetine I would go extremely anxious about all my symptoms.
 
Hi PJ,

I'd give the SSRI a chance to help you. It takes up to 6 wks for full effect. Then re-evaluate if it's the right drug (sometimes you need a switch).

I think you've answered your own questions, in that you don't list any features or symptoms that it appears that anyone else can discern, including your gf, who presumably has seen you over time. And you've had repeated negative EMGs. So that's very reassuring and not at all in line with ALS.

Re the vitamin Bs, they work best when balanced out, so I would take a balanced B complex if you take any of them still. Magnesium also needs to be balanced with other electrolytes, so I would try to discern what minimal amount works best, if you are still taking that. Or instead of an oral supplement, a dot of magnesium lotion per its instructions may also be helpful as a more direct therapy.

Sleep, hydration, nutrition, de-stressing (is there something in your life you need to change or give up?) and exercise that elongates the muscles (yoga, Pilates, ballet, tai chi, etc.) may all be areas to work on that can affect twitching and also provide a good foundation for your [long and healthy, I predict] future. Sometimes it helps to spend some time with those who are truly less fortunate than you. Enjoy your life with your gf and continue to figure out the things that work best for you. It does take some work. The good news is, this is the wrong place for you.

Best,
Laurie
 
Hi lgelb!

Thank You for that quick reply. I am aware of my anxiety problem but i would like to ask one more thing. Do you think that it is possible that this swallowing problem and hoarseness which showed last week are connected to ALS? As it is for me i would rather think the swallowing dry food problem is connected with "Dry Mouth" caused by paroxetine. I am stil anxious about horesness and hawking a lot during day. What do You think about it ?
 
SSRIs can certainly contribute to dryness, which in turn could thicken your normal saliva/secretions or make them harder to swallow. As I say, it takes a while for the drug to level off so I'd give it its chance and then go from there -- the Biotene sprays/toothpaste are good for dryness, meanwhile. You might try a cough drop. And in winter, a humidifier at night never hurts, if you're in a dry climate.

No, I do not think swallowing/hoarseness that as you say, connects to dryness, is a sign of ALS in your case. It is very easy to become aware of. I have been clearing my throat/coughing, which is a sign of dryness, and so when I eat next, I will drink first, in part to stay hydrated.
 
Lgelb,
I would like to ask few more questions, if it's alright. My legs are feeling much more weak after activity than they used to some time before. I am feeling like my right leg is some kind of heavy. I don't think i have the foot drop because I can still stand on my toes and heels. However I am a bit anxious about it, because there were few times that I hooked with my fingers to the ground while walking. Is it possible that I am developing foot drop ? Is it possible that both of my EMG tests were fine in 2 months period and that something is really going on ?
 
Feeling weak, as you say, just doesn't count toward ALS. You should read our sticky post at the top of this subforum titled "New Members Read This Before Posting.

The feeling of "heavy leg" doesn't point to ALS.

Is it possible? Well, sure. A lightning strike is possible, but you're not going to stay indoors all your life. Nor should you be looking at ALS.

Two clean EMGs pretty much calls it, don't you think?

ADDED: "The doctor assured me that my symptoms are 250% not ALS and suggested to go to the psychiatrist, and take some medication."

That pretty sums it up, doesn't it?
 
Last edited:
Atsugi

Thank you for your answear. I have read the sticky post before posting my thread. I would like to ask one more thing. From your knowledge and experience - would EMG test which was done 8/02/16 show any problems if I were going to develop foot drop soon? I read this forum and earlier posts about foot drop and i read sth like this: "my foot felt funny in my shoe. The ball of my foot felt like something was pressing up on it, and it didn't feel right." I am feeling something preety similar in my right foot. I know the MND is not about feeling strange or ther feeling issues, however do You think the EMG test would show some abnormality like i wrote before ? Thank You in advance for advice.
 
If you want us to address comments you quote it would be helpful to provide a link to the thread. If it is very long please include the post number. Not my experience of foot drop is all I can say now.
In all likelihood yes the emg would have shown a problem. Please consider you are probably hyperaware of your body. I believe you were referred to psychiatry. How is that going?
 
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