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Emple

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Learn about ALS
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Aberdeen
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Aberdeen
Hi

I am wondering if you can tell me your thoughts please.

I am 35 year old female. I have various symptoms going on.

I have burning in my left shin and on walking have foot pain. I can stand on toes and walk on hers but hurts afterwards.

I also notice, particularly after eating that articulating some words don't sound my usual. My lips seem looser to look at and flatter at the outer corners. Inside my mouth it looks like my tonsils have moved further down than usual. I'm not sure if my tongue has lost bulk or if my soft palate is sagging or both.

I have seen a neurologist in November and end of December. He said that my clinical exams are normal. He did say my knees reflexes were brisk. It this was because I was extremely anxious. But how does he know this for sure?

He had looked at my tongue,tested my strength of it, watched it at rest and asked me to stick it out. Blow out cheeks, whistle, turn my head, push shoulders up, babinski test was normal, jaw reflex he said was normal. He has been practicing for 30plus years.

For my reassurance He referred me for a brain MRI and an Ncv and emg all of which came back 'entirely normal' his words. This was 5 weeks ago. The consultant doing the emg is also specialist in this too and he told me on the day there were no neuromuscular diseases. He tested both legs, my right hand and right bicep. No bulbar areas were tested with the emg.

It is likely I am early stages and this is why clinically it cannot be seen by the neurologist? Also could the emg have been too even though I have pain in the leg? I don't really have any fasticulations anywhere yet except my upper left eyelid which on closure is constant.

I am trying to leave a while before gojng for a second opinion but each day terrifies me. Looking in the mirror at my deflated bottom lip and my face also just looks like it has lost muscle. Although is have lost 2 stones in weight recently from stress.

Thanks and I appreciate any thoughts.
 
EMGs are seldom "too early" in MND, since for symptoms to happen nerves have to have already died.

It sounds like the most objective issue that could be confirmed or denied and was not addressed via EMG is the palate/tongue changes you perceive, so why not consult with an ENT?

Best,
Laurie
 
Thanks Laurie

Do you think it is possible for an experienced neurologist to have missed this though?

He wrote on the letter to me tongue was normal, no wastage, no weakness and no fasciculations

I did go back to my gp and she said she just thinks that my symptoms are anxiety related as did the neuro. I will go back to her and ask for an ent app

With the information I have given do you think ALS is likely?

Thanks
 
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EMPLE, if Laurie suspected MND, she would certainly have given you a different answer.

No, an experienced neurologist would probably not have told you that your EMG was normal if it was not.

If you don't believe this neurologist, your other option is to seek a second opinion for a neuromuscular specialist. My guess is that you would not accept an "all clear" from that physician either, however.

See the ENT, as Laurie suggested. Please do not suggest a diagnosis--let your physicians do their jobs.

Best of luck,
Becky
 
Emple,

What Becky said.
 
Thanks both.

Becky it's not necessarily the emg I'm doubting. I'm wondering if the neurologist could have missed the clinical bulbar symptoms such as soft palate sagging or tongue bulk loss?

I will go back to my gp. Thanks.x
 
Neuros don't really 'miss loss of tongue bulk'. See you are attributing smaller size to clinical atrophy. Atrophy is easily recognizable to a trained physician. The doc pointed out atrophy on my hubby's hands before he even really noticed. If you don't trust your doc, find another, but don't use Dr. Google as your second opinion.
Tracy
 
Thanks Tracy

I'm just at a loss going about every day thinking I must have ALS because I can't think of any other thing that's treatable that cause these symptoms.

I read before on here about someone who had bulbar and they said their lips flattened at the edges early on and also their lips went wrinkly. This is what my bottom lip has done.

Every time I eat I hear my words sounding slurry. Almost like the muscles have got tired but I don't feel them different other than a sort of loose feeling.

Then there is inside my mouth where it looks like the plate is sagging although I have no trouble eating or drinking. My gp did say the other day my uvula looked swollen.

My foot is so sore to walk in too and in retrospect I did have cramps in that thigh summer time but I put it down to being in late pregnancy even though I only got it on the left leg. Just can't understand though if als was causeong for foot and leg issues why I would have a normal emg.

I'm honestly so scared. I also read on here someone saying they had a normal swallow study 1-5 years before they were diagnosed even though they had symptoms.

I am seeing an osteopath this week about my foot/leg and start cbt on Wednesday for the anxiety.

It's the limbo land that scares me and all these things changing that I can see.
 
Sorry to hear you're scared. You are so scared, you are not trusting your doctors. It really doesn't make sense for you to ask strangers on the Internet to second-guess a highly trained and experienced neurologist.

I, too, don't see any ALS described in your posts. But I do see a serious problem that could harm your life. That anxiety. It can really be a problem. Fortunately, it is very treatable, and can even be cured. You'll really be happier and more successful once that is cleared up.
 
Thanks I appreciate your time.

I'm just so confused. I have pain in my ankle and walking and yet a normal emg. Surely if I had atrophy and weakness the emg would have picked it up? And yet the results were 'entirely normal'. Any time I do exercise it makes it worse. I saw the osteopath the other day who massaged the muscles and since then my ankle sore to walk on. It then calms down for a bit and then if I do exercise it gets worse. It's making me think it must be als.
 
Emple,
Pain isn't usually associated with the onset of ALS. We tend to get pain as the muscles atrophy and our joints become unstable. The weakness in this illness doesn't calm down then get worse it's just keeps getting progressively worse. So why this would make you think you have ALS I just don't understand.

Weakness and atrophy are looked at as part of your clinical exam not the EMG. If your doctor says you do not present with weakness or atrophy then you don't have it. The feeling of weakness tiredness does not always equate to clinical weakness which is why you have to go to a doctor as they are the only ones qualified to judge and diagnose atrophy and clinical weakness. They spend a lot of time training to identify it, during time I spent in hospital I had a lot of trainee doctors come and practise on me to judge the difference between normal and weak as I had one of each in both arm and leg areas. You can't test or judge this for yourself you have to trust your doctor.

If you have an EMG it can pick up abnormalities way in advance of symptoms. Some areas that I had tested that showed abnormalities are still symptom free nearly a year later. If you have symptoms and the EMG is clear it's not likely to be ALS so further investigation is needed to identify the causes.

If you don't trust the answers your doctors are giving you find a doctor you can trust. It would be the height of irresponsibility for us to encourage you to worry or give you opinions that go counter to extensively trained medical professionals.

wendy
 
Thanks Wendy

I totally understand what you are saying. I have had several clinicals and even though the leg and ankle area are thinner I was told it was normal. There is apparently no weakness. I have had numerous doctors test my legs and in particular the neurologist x3 times. Then the emg was carried out by another consultant who is specialist in this.

The osteopath did comment the other day that all my joints are pretty flexible/bendy! She checked and said it wasn't hypermobility. So now I've got myself worried that it is because of weakness although the osteopath did say I am very strong when she was having me do the exercises.

The only other reason I can think of is that I had a baby 3 months ago and only stopped breastfeeding recently and I know that the relaxin hormones can cause loose joints. I have repeatedly being doing strength tests on the left foot, up on toes, walking on heels, going backwards downstairs one my tip toes one foot at a time. So I am wondering if I could have injured it and then now it's just not settling?

But I still also have all the other symptoms I mentioned at the start of the post. I'm so fed up worrying. I am going to go to my gp again this week and asked to be referred to ent and will also say about the joint pain. Following this I will seek a second opinion from another neuromuscular neurologist.

I don't know if I mentioned this already but I started cbt this week and the dr doing that with me works closely with neurology patients who are referred to her when no cause can be found for their symptoms(this is not why I have been referred to her it was via another route) l. Anyway she asked which neurologist I had seen and her words were that he is 'world class'. Yet I still believe it was too early for him to find anything other than brink reflexes which he said were still normal range. I just feel I'm waiting for things to get worse.
 
"pain in my ankle and walking and yet a normal emg"
"sore to walk on. It then calms down for a bit and then if I do exercise it gets worse. It's making me think it must be als."

You are really confused. A description like this is FANTASTIC. It means very firmly that it ISN'T ALS.

Pain in ankle==lots of things but NOT ALS.
Gets worse, then better, then worse==ALS never gets better.

You need to listen to us. You shouldn't make us repeat ourselves.
 
Pursuing other investigative routes is a good idea, as is therapy and I am glad you are getting this help.
If highly experienced doctors are telling you that you don't have als and you still can't get the fear out of your head then nothing we say here is going to reassure you. In fact being here and reading loads about als will feed your fear and make the stress worse as your mind will start finding connections that's may not be relevant.

I am going to say this in the nicest possible way, please please give yourself a break and stay off this site. If your doctors feel you have any cause to worry about als by all means update us but I don't think they will. Also please stop trying to repeatedly strength test yourself you can cause injury and inflammation doing that.

Good luck I sincerely hope you can find some solutions soon so that you can relax a bit and enjoy your young family.

Wendy x
 
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