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shine81

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Dear all,

Sorry for the mistakes, I'm French. Sorry for the lenght (also going to blame it on the french origin ^^)

First of all, i want to express all my love to those suffering with ALS. I know how frustrating it can be for someone who has got diagnosed to see ‘healthy’ people not fully enjoying their life because they’re anxious they “could” have something. I do not want to be disrespectful and I can assure you that if I am lucky enough not to be diagnosed with this disease, I will not forget those who don’t have this luck and try to help spreading awareness and fostering research for treatment. (actually, same if I am diagnosed!)


I’m a 28 years old woman, living in Germany. Have always been kind of anxious about my health in a reasonable way, but I’ve been experimenting quite scary symptoms over the past 2 months and I have to say that I’m a not far from “loosing it” with the fear of ALS taking control over me. I can’t think of anything else, I’m convinced I have it, I cry every night, my partner is scared (of my reaction, not of the ALS itself). I need help.

So, beginning August I started with major lower and middle back pain, had two very precise and painful points that wuld not go away with the usual medication (ibuprfene, paracetamol,…). I still have time pain. I did an MRI of the back, it showed protusions at the lower level as well some deterioration in the middle level (did not do the cervical area, but 4 months ago it just showed mild arthrose). However I’ve had pain in the cervical area regularly on a chronic bases, and a lot of tension in the shoulders usually.

Beginning September, I started feeling a kind of weakness in my left arm. It feels heavy. At the same time, on the left leg, several times for day a kind of numbness (I can still feel my skin , no sensorial issue, it just feels weird ) on a very precise spot on the feet. Then, pain in the left arm, like strong cramps in the upper and lower part of the arm, sometimes it’s so strong that it feels like my skin is burning. Cramps similar in the left leg.

-My arm keeps being weak, I can’t properly take objects because the hand is so “tensed” that my fingers feel like tensed too. I don’t drop things down, but I’m having troubles doing things that I used to do normally, because my arm starts hurting (like muscle tiredness). These things are for instance hanging my clothes, emptying the dishwasher, or tipiing on my computer. I do much more mistakes, again because the left hand ‘hurts’, therefore the fingers just aren’t precise. It feels a bit like muscle soreness, hard to describe. Initially but rather rarely I also had in some fingers a burning/itchy feeling) but not anymore. Now it’s mostly this muscle soreness/fatigue sensation and heavy arm/disabled hand.

- Quickly I get a similar feeling in my left leg, my walking has changed because I am using more the right foot. I feel unstable when I walk, very careful in the stairs when I go down, and it my legs are tired very quickly when I go up.
When sitting, I get several times per day this very weird feeling of a “thrill” going down both my legs at the same time.

Since 3 weeks, I’ve started to have fasciculations. It started on the right side mostly (back, leg and in the pelvis area) and now I have time mostly when I’m laying, but everywhere. A lot of them in the stomach area. I can not “see” the muscle fasciculating, I just feel it.

I don’t have a very good transit, I’m constipated (I usually am not very well with this, but I can really feel it that it’s way way worse than usual).

Since three days, I’m having troubles swallowing. I do swallow, but there’s something blocking the way. It feels like like something on the palate in the mouth is not ok, I can’t quite explain it, it’s not in the throat itself. But the result is, that I have this trouble swallowing my own saliva , water feels also a bit painful, and aliments ok but also painful (it burns a bit further down in the oesophage and my nose has been quite full too). I’ve never had this feeling, it is very weird but it’s not like a throat infection even though my throat does hurt a bit.

I”ve seen a neuro 3 weeks ago (no constipation/swallowing issues at that time) : he did the test with the nerves (nerve conduction?), neuro tests (reflexs), and an EMG of muscles in the upper arm left, and two muscles in the right leg. All came back normal except for a tiny thing he saw in the EMG but said it could come from the cervicals (did not understand exactly what but he did not seem worried by it and said it’s not very significant.). Also had a lumbal ponction, an MRI of the skull, loads of blood tests. All came back normal.

I have to see the neuro again in 10 days, he wants to re –assess my symptoms and do the same tests again and depending on that he suggested that a stay at the hospital could be possible. I can see that he is worried and sceptical, because he can’t find any reason for my symptoms. I ‘ve asked him about ALS directly, he said “forget about it, you don’t have it”, and when I asked why, he said that I’m too young and that ALS does not progresses that rapidly. I was not very much convinced, it felt more like he was trying to reassure me and himself.

Of course, all the symptoms above make me thing that I have a very high probability to have ALS. I had managed to calm my self down a bit but now with the swallowing thing on the top, when I put all the symptoms together I’m just horrified to see how good they match. In addition, the only exam that could have reassured me (EMG) was done incompletely and not totally clean.

Questions: what do you think? I’ve read that bulbar and spinal form usually do not come together at the same time, but with exceptions. I’ve also read that fasciculations do not mean much as such, but in correlation with all my other symptoms, I wonder. Earlier today I tried lifting my arm and doing all sorts of exercises and I could do them all, so I tend to hope that my “weakness” is just muscle tiredness and not clinical weakness? (I have same strength on both sides when doctos do the test, but the left arm hurts when I do the test).

If someone read all this, please be assured that you would help a lost, very anxious and freaked out soul out here if you could answer me (frankly, of course).

thank you in advance and lots of thoughts for everyone on this forum.

shine:sad:
 
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KimT

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Nothing sounds like ALS.

My guess is that you will have a cervical MRI and that will show something similar to your lumbar MRI.

Write down all your complaints, symptoms, and questions before your visit. Then put it away and focus on life and doing things that relieve your anxiety.

Make sure you are hydrated and move as much as possible because water and movement help constipation. If needed, take some magnesium which will also help with constipation. If that doesn't work, add some psyllium. Eat plenty of fruit and veggies to keep your minerals balanced.
 

shine81

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Dear Kim,

Thank you so much for your kind answer.

I am indeed taking magnesium already, and I forgot to mention that I have a -mild- lack of vitamin B12 that I'm treating as well. I will report here after my next appointment, maybe it can be of help for others (I've spent time reading others posts here and it did help).


thanks again,
Shine
 

Vincent

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While doctors are now coming to realize ALS patients do experience pain. It is usually caused by muscle loss leading to awkward positioning of joints, leading to pain. Most studies tend to show that ALS being a disease of motor neurons, not sensory nerves, that pain is not something we experience. The usual presentation is clinical weakness absent pain. Lucky you, your symptoms being all sensory you can feel pretty sure you do not have ALS. J'espere que ca aide.
Vincent
 

shine81

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Thank you, Vincent, I indeed read that the typical constellation of symptoms at the beginning of the disease can't be strictly reduced to non sensorial ones.

But my symptoms aren't sensorial, I think : weakness, difficulty to swallo that gets worse everyday, fasciculations and cramps...

I am really looking forward to my neuro's appointment and thnk Kim and you for taking the time to answer me!
 

lgelb

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Absent any chart notes demonstrating that the neuro found something objectively wrong in your exam, we don't have any basis to believe that your symptoms are motor rather than sensory and/or mind-made.

The EMG from your description may have been limited, but we haven't heard that it's less than substantively clean. Of course, you are welcome to post the report.

So either there is more to all this than what you have said, or you have a very pessimistic neurologist.

All in all, we won't see a basis from this for your conviction that you have ALS -- quite the contrary.

Best,
Laurie
 

shine81

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Thank you Laurie.

I am being referred to the neurological emergencies today, because my "swallowing issues" I had mentioned in my original post turned out slowly into a paralysis of the pharynx and palate area. So scared. That, to me, sounds like als...

Will report.
 
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Bestfriends14

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Your symptoms, contrary to what you "feel", truly do not present how ALS presents. At all. You've admitted to being anxious about your health in the past and from what you are describing, it could very well be anxiety again. You simply are not describing ALS so diagnosing yourself as having it is jumping the gun and it's sad. Please go get peace of mind at your appointment. Report back as to what they think it may be.

Good luck to you.
 

shine81

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Thank you so much for your answer.

I wish so much that you are right. Either I'm going crazy either I'm right, but the more I read the more I am simply convinced that I have it. I always have been very rational and now fascic + weakness + paralysis in the bulbar area are just for me a Clear diagnosis. I don't see how anxiety could cause this paralysis I have, but after all the body is very very strong when it comes to somatisation.
 

shine81

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Oh, I am so sorry again... I've never felt so desperate scared, and alone. My boyfriend is on a work trip and does not want to come back as he does not know at all what als is and don't even believe that if I had it would be a big deal. At this point, all you kind people are my best friends in this boat. I am so grateful.

I know that I am anxious and everything but honestly, reading all your stories (I read a lot of Pals posts) and my symptoms I don't understand why everyone (except the doctors - they say the symptoms match but not the statistics) keeps telling me it does not match. Don't get me wrong, of course I want it to be something else but something deep inside me tells me that is it.
 

Nikki J

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The reasons people here think it doesn’t sound like it are normal emg, symptoms all over at the beginning and in spite of your reply to Vincent quite a bit of sensory symptoms in your initial report

It is the opinion of the neurologist that mattersthough so let us know once they give you an answer
 

shine81

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Report : well I entered in the doctor's office in tears, uncontrollable. So first thing he thought about was ok that one is crazy.

I explained to him my symptoms, especially the dysphagia one that is very hard to explain. He performed reflexes tests on my legs and abdomen, and a few strengh forces and walking exercises. No reflexes on the arms.

Then he looked at my tongue. He did not test the nerves as the Ent doctor did this morning. Then he told me he is sure you don't have ALS because you don't fulfill any criteria. No emg. He said he would do one to reassure me if I wish, but that he does not believe it is necessary. He did not seem to believe me for the throat thing. Does anyone relate to what I m trying to explain? It's the first phase of the swallowing part that I can't do anymore, when saliva goes from the mouth to the œsophage. Every time I swallow my palate feels locked. I'm not making this up :-(

So he gave me anti depressant and things against anxiety.

I know what you are all going to say, but I am not reassured. I want this throat thing to go away, it's debilitating and scarry!

On the 5th November next Monday I have an appt with a third neuro, the specialist in France for ALS and director of the Hospital Salpetriere ALS center.

Thank you all. Sorry for being insistant.
 
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Nikki J

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Please let us know what your third opinion says. I am sorry you are suffering but since we have given our thoughts already please realize that we , who have limited resources and energy, can do no more for you until then.

Thank you in advance for respecting this request
 
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shine81

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Thank you Nikki and all of you who took on their time and energy to help me.

I will for sure report back on the third opinion and until then, will keep thinking about your kind and comforting words.

Warmly,

Shine
 
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shine81

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I tried to post earlier and report back but apparently it did not work...
 
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