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25, all the symptoms, bad EMG

oleanka

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Hi. I'm a 25yo female from Poland. I'm currently waiting for another EMG to confirm (or not?) ALS.
However, while waiting I feel terrible anxiety. I'm really, really worried it's ALS. EMG results were inconclusive in some way and I have all the symptoms!

So it all started 1,5 years ago. I noticed my temperature was higher than normal. Then I noticed some twiching in my eye and jaw. I also had a feeling of water drops on the skin while there weren't any. I went to a neuro and she said "even if it is something, it's too early to say what it is - go home and let's wait and see".

After that I got a terrible pain in my lower back. I went to a physiotherapist but it didn't help at all. I got pregnant! Pain spotaneusly resolved and so the twiching and raised temperature. A few days before I gave birth, pain and weird sensations started again. I wasn't able to walk for 3 weeks following my birth! Then again... pain went away but this time not entirely. I still have troubles moving in certain way. I'm almost 2 months postpartum.

Not a long ago I've started having severe intercostal muscles cramping. Twiches all over my body, water drops too, electrical current like feeling. I have spasms(?) in my legs (all legs) and hands (arms,fingers,wrists etc.) - involuntary, jerking/clonus like movements. I have troubles falling asleep because of them! Weakness in my legs and hands - it started a couple of days ago. I also noticed, that could be independent of all this, that my legs and hands go numb at night. When I wake up my palms/fingers are usually stiff or first they are numb and after a few movements they are just stiff. Sometimes my legs are numb too but rarely stiff.
3 days ago I got a back pain that's in the middle of my back. I wanna mention that 4 weeks ago I had an x-ray of my back and there's nothing major there - no slipped dics,etc. Now I have pain in the middle of my back and in my lower back as well (the pain that started 1,5 year ago).

But what really sent me to the doctor was something else. Following my birth I started having problems with swallowing and speaking (slurring, lisping some of the words) and my voice changed a bit. I looked into my mouth - my tongue is swollen on the right. On the left, some dents? My tongue looks totally different to what it looked a couple of months ago. I went to an ENT doctor. Turns out my vocal cords aren't shutting properly (vocal cords paralysis?). They don't know why. My tongue looks asymetrical but they don't know why either. I started having more saliva in my mouth. I went to my neuro friend - got head MRI, neurological exam. MRI clear, hyperreflexia in my left biceps. I trip to the left sometimes, sometimes just general overbalance and feeling as if I were on a board of a ship.

I decided to get EMG (and ENG). ENG fine, however.... my EMG was bad. I have some fasciculations in the dorsal muscle of the hand (I think that's the name in English, it's between forefinger nad thumb), abnormal (high) polyphasic potentials in the tongue and tibial muscle (?) and also lowered PJR parameters in the left biceps accompanied by some weakness and overreactive reflexes. So 4 muscles tested. Now, it doesn't show ALS clearly but there's something going on. My neuro friend told me to get another EMG in 2 months. But that's a lot of time! I'll have gone mad by then!!!!I have a little baby and I'm only 25....why is this happening to me????

I've read all about ALS and I know it can start just like that. But whatever it is.... why is it progressing that fast in me? I know autoimmune diseases could act like this... being pregnant my immune system was weaker so it couldn't fight itself. Now I'm 2 months postpartum and my immune system is going nuts... :(

I don't even know why I'm writing this all.. maybe I don't wanna go crazy while waiting for the second EMG? I think, maybe I should get it sooner since each day I feel worse and worse. How often did you get your EMG to check progression of the disease?
My husband says I need a psychiatrist and it's not ALS. He says it's my brain doing it to the body. But... Could my body fake paralyzed vocal cords and EMG results? Don't think so...
I'll get some professional psychiatric / psychological help this or that way (in case I don't have the disease - I'm just a crazy person, in case I do - I'll be a crazy person because of this trauma of having such a disease).

My symptoms summary (from head to toe):
1. lots of saliva and my ears plugging from time to time
2.hoarse voice
3. trouble swallowing, i sometimes cough out bits of foods I ate and which were stuck in my throat....i also choke on the food and water from time to time
4. slurring/lisping some of the words
5. can't sing higher notes
6. fits of laugh (last just 2 seconds or so, comes on like a seizure) and cry (i cry a lot, very emotional)
7. trouble taking a deep breath
8. tight left jaw muscle
9.swollen tongue on the right and generally looking weird
10. intercostal muslces cramping (the rib muscles)
11. back pain (thoracic back, lower back) that used to come and go, sometimes severe, now persistent
12. fasciculations all over my body, feelings of current under my skin, crawling, water drops, touch, vibrations
13. jerking movement (?) of hands and legs
14. numb and stiff palms and fingers after sleep (or when i'm in one position for too long?), sometimes legs/feet too (thought it was arthritis but my results came clear for that)
15. general fatigue

Summary of the clinical findings related to symptoms:
1. hyperreflexia in left biceps + tiping/ swaying slightly with my eyes closed
2. EMG - fasciculations between thumb and forefinger / lots of polyphasic potentials in tongue and tibial muscle/ lowered pjr parameters in the left biceps
3. vocal cords not shutting properly

No mineral deficiencies, no Lyme disease.

I'm really terrified of ALS. I want to live!!! I have a little baby to care for... I haven't traveled much,and I wanted to start my own business! This all... it's crazy. I'm not ready to die! :(

What to do? Where to go for help? Are there more tests I should get? I'm so scared and miserable now. I should be enjoying my baby as much as I can if I'm really about to die but it's so hard. When I think that I'm going to leave my baby and never see her grow up and so on.. my heart breaks and I start crying. I feel like a terrible parent....
 
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KarenNWendyn

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Congratulations on your new baby! I’m sorry you are going through the stress of all these symptoms at the same time you are trying to care for your new baby.

ALS is still an unlikely possibility given your symptoms. Initial symptoms starting 1.5 years ago are mostly sensory: elevated body temperature, feelings of water droplets on skin, pain, weird sensations, numbness, stiffness. Those point away from ALS.

Many symptoms coming on in the postpartum period could be related to hormone changes, mechanical pressure on back muscles related to recent pregnancy, or autoimmune problems. Many autoimmune conditions seem to come on or flare up in the postpartum period.

The problems you report with vocal chords, swallowing, saliva, hoarse voice, and speaking can have many potential causes. ALS would be at the bottom of a very long list. I assume you saw an ENT specialist? If not, I recommend that, and make sure they rule out gastroesophageal reflux. ALS doesn’t cause hoarse voice.

Fasciculations are common, nonspecific, and meaningless.

We would be happy to comment on your EMG if you are able to post a copy with identifying information blacked out. You may have to do some translating if it is in Polish.

So I think ALS would be very unlikely given all the sensory symptoms you mention, and also because of your young age and so many other more common possibilities for your symptoms at this point. However, getting the followup as planned, particularly if you are able to see a neuromuscular specialist, would be my recommendation. A rheumatologist may also be helpful in excluding the possibility of an underlying autoimmune condition.
 

lgelb

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Postpartum depression can produce physical symptoms, with or without another cause that contributes. There are also adult-onset muscle diseases that are often mild but can be scary. And as Karen points out, there are autoimmune conditions that can wax and wane.

Do others hear a change in your voice? When you could not walk after the pregnancy, what was the diagnosis and who made it?

I agree with seeking out a neurologist who is not a friend, who practices in an academic center in a neuromuscular specialty. If you are in Poland now, that would be at the Medical University of Warsaw. If you are in the US, here is a map.

Best,
Laurie
 

oleanka

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Hi All. Thank you for your replies. I'll attach my EMG results. I hope the picture is clear - if not then let me know. I also noticed just now that there were fasciculations in the tibial muscle as well... I didn't notice that until I posted the pictures...
So.....a new symptom (?) - My uvula is swollen. Not sure why. It swelled yesterday.

As for your questions: Nobody diagnosed me with the walking problem thing because there were no apparent causes. I felt lots of pain in my lower back and sacroiliac joints and hence - i couldn't walk. But this pain started before pregnancy and stopped when I got pregnant... and then came again right before I gave birth to my daughter.
I had an X-Ray after that and it showed no pathological things, I went to an orthopedist and a chiropractor. I also went to a rheumatologist and I had blood tests but it didn't show positive for arthritis. So I have no diagnosis regarding this pain...

About the Medical University of Warsaw - I'm having an appointment with a doctor that works there...I'll update you as to what he said.
I'm having physiotherapy today.. maybe that will help a bit. However, this swollen uvula thing is scary. :( :( :(
Also I'm having ANOTHER ENT specialist visit tomorrow. I've already been to 2 ENT specialists and they don't know why my tongue is swollen and so on. They only said I should go to a vocal chords specialist or something. So this is what I'm doing but this all is scary and Im spending lots of money...

My neuro friend said that if my next EMG is worse, he'll admit me to the hospital he works in. I hate this and I'm scared but at the same time I want to know what's going on with me! Am I really dying or is it something... benign?
17236
17237
 

KarenNWendyn

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The EMG, which is the small area near the bottom that says “needle EMG examination”, is the important part. It is partly covered, and maybe you can re-post just that part so it is easier to read. The rest of the data pertains to nerve conduction, and is less important as far as ALS is concerned. From what I can see of the needle EMG exam, it looks unremarkable.

A swollen uvula and tongue do not suggest ALS. I would still think an autoimmune problem or even a viral infection would be much more likely even if the blood tests “don’t show positive for arthritis”.
 

oleanka

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Sure. I'm posting the covered bit.
Could be that the swollen tongue and uvula is something else but I read a story of a man whose ALS was diagnosed early just because he saw that his tongue was partially swollen - it somehow suggested neuromuscular disease...

By the way, isn't ALS an autoimmune condition?

today I had a physio visit at home. She said my back is in terrible state - tense and immobile, except for 1 little bit which is mobile and overburdened. I don't know.. could that suggest ALS? I'm getting crazy about this all.

I can't wait for the doctor's appointment...
17242
 

KarenNWendyn

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Thank you for reposting the important part. There are a few abnormalities, but not of the sort we see with ALS. In ALS, the changes are widespread, and we would expect increased insertional activity, fibs, + (sharp) waves. You did not have those abnormalities— that’s in your favor that this is not ALS. EMGs can suggest other problems besides ALS. Sometimes a few scattered abnormalities can show up as the result of an injury or an infection, and may even resolve over time.

ALS is not an autoimmune disease. It’s a degenerative disease.

A swollen tongue or uvula suggests something else.

ALS would not cause the problems you describe in your back. That sounds like a musculoskeletal issue.
 

KimT

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As relates to ALS, your EMG is normal. You would need fibrillations and positive sharp waves showing in numerous areas and you have NONE. That's great news.

I don't think the tongue and uvula is related to your back issues.
 

oleanka

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Thank you for reposting the important part. There are a few abnormalities, but not of the sort we see with ALS. In ALS, the changes are widespread, and we would expect increased insertional activity, fibs, + (sharp) waves. You did not have those abnormalities— that’s in your favor that this is not ALS. EMGs can suggest other problems besides ALS. Sometimes a few scattered abnormalities can show up as the result of an injury or an infection, and may even resolve over time.

ALS is not an autoimmune disease. It’s a degenerative disease.

A swollen tongue or uvula suggests something else.

ALS would not cause the problems you describe in your back. That sounds like a musculoskeletal issue.
As of now the person who tested me said it's not a good EMG and to her it's inconslusive, taken my symptoms into account.

The thing is that everything is so incoherent. My weird EMG, my widespread symptoms that include so many body parts and functions. Docs are puzzled. And so I am.

I read stories of people whose ALS started as back pain and muscle cramps - my symptoms as well. That's why I'm so scared. I have all the potential symptoms!
 

oleanka

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As relates to ALS, your EMG is normal. You would need fibrillations and positive sharp waves showing in numerous areas and you have NONE. That's great news.

I don't think the tongue and uvula is related to your back issues.
Yes, as of now my EMG doesn't show positive for ALS. I will have another one to see if there are any changes...
To be honest, I'm SO scared. I feel worse and worse each day... it's like I don't know what will happen tomorrow.
Today swollen uvula, tomorrow tight jaw muscles, etc.

Yesterday I developed a tight right biceps muscle... it feels tense and weak at the same time. I'm really worried. :(
 

KarenNWendyn

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I’m sorry that you’re scared, but I really feel your symptoms and EMG don’t line up with ALS.
 

oleanka

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I’m sorry that you’re scared, but I really feel your symptoms and EMG don’t line up with ALS.
I hope you're right.

Update: I was with a phoniatrist-ENT doctor yesteday. She said she doesn't see any pathology in my mouth and the tongue, uvula and hoarse voice- it could be related to hormonal changes. And she said that my voice cords are actually shutting. OK... Well... Each doctor says something else. Why did the 2 previous ENT specialists say that my voice cords don't shut properly? I don't understand. I guess all I can do is wait.

I don't want to waste your time now. I will come back with my followup EMG results. Thank you All for your kindness and replies. I will update this thread in some 1-2 months. Thank you once again.
 
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