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Thelights

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Jun 10, 2015
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Learn about ALS
Country
AUS
State
QLD
City
Brisbane
Hello again all.

3 months ago i had my appointment with a neuro that specialises in e.m.g in a hospital of brisbane city.

The moment he did a brief examination of me and asked my history he immediatley told me he doesn't thinks its als.
He still went ahead with more blood tests and reflex tests e.t.c babinski and other reflex tests.

All came normal .
I mentioned specifically that i was having issues with my feet and walking felt like a "near limp"

A doctor and physio checked me over and the physio was the only one that noticed a slight bit of weakness but not enough to call it profund and when i did a push up for her i showed her that it triggered fasciculations.

Im not sure if that had been taken into consideration in the end evaluation or not .

I finally had the ncv to which the neuro told me i have "super nerves" and the e.m.g came up clear .
He told me that my issue was anxiety and that i should follow this up with my psychologist . I showed him my hypothenar on my right hand and the fact that it always twitches when clenching a lose fist.

He dictated the report to the telephone and when i asked him to explain my issues he pretty much just said anxiety and i felt like he wanted me out of the office.

I went home with some relief but at the same time some skepticism.
A few weeks later the report arrived and i looked over it . The report mentioned that the rhunatologist had sent me to the hospital with a als diagnosis. The neuro explained that there was nothing organic wrong with me (heres the part that pisses me off) he said i RARELY have twitching in my hypothenar .

At this time inof course still have cramp pains , shakiness , tiredness and the twitching persists . The twtiching seems to have settled more in my right leg , which is the limb that is causing me the most issues .

Mentally i am currently feeling better , but I am now more annoyed as the health issues persist. As i have been given the clear by the neuro i now feel as though people expect me to (have a cup of concrete and harden the f*ck up) this frustrates me as i would more than love to jump back into my old hobbies .

During this time i have tried accupressure to help me which yeilded no result. It has however freaked me out more because the lady that was doing it needs to touch my feet and my big toe has flicked up . I have gone to a new doctor and asked him to reproduce the reflex test and my feet netiher go up or down . However im having further difficulty and co-ordination problems progressivley. If i curl my toes down i begin to cramp on the bottoms of my feet .

After seeing the new doctor he has told me I do have something organic going on and that he ( im back here again) thinks its my thyroid . - i have antibodies against my thyroid and its clinically subacute via ultrasound- he told me that my throid will die soon but my thyroids been like this for some time .

When i asked him about my big toes flicking up and if there can be anomalies he said yes ..

To summarise my issues

Twtiching all over but has been more consistent in right leg past week

Myclonus -leg jerks , arm and head jerks

Cramps all over hands back under shoulder blades feet

Shakiness

Tiredness

Weakness

Uncoordination

Potential babinski


I have scheduled an appointment with another neuro for december as a second opinion. In the mean time doc will send me to endocrinologist.

This clearly doesnt sound like als as i have had a clean e.m.g
What about pls . I should also mention that when i had my thyroid checked i had the ultrasound person take a look at my left shoulder that has bursitis and my feet .. apparantley my feet are borderline plantar fascitis .. does mnd have muscle inflammation as a symptom . Thr neuro said that thyroid can have a direct effect on neurological functions _ i cant see that being the caralyst of a babinski response_
What other things/disease relate to a present babinski sign .

Thank you once again for taking the time to read and answer my speel.
 
Also i only have to bump my leg slightley or get touched by someone and i jump a mile. 4 months ago i was wearing my leather jacket and the inside lining touched my rib whilst driving and that made me jump a mile.
 
Gday.
Please don't go looking for PLS. ALS is a horrible terminal disease, but PLS is no picnic either.
I have had weakness since onset. No pushups could be done. From day one. Plus no fasiculations. Not a symptom of PLS at all.
Babinski is a symptom of neurological problems. It happens all the time, not intermittently, that's good news for you.
Please don't wish this on yourself. Let them do their job, and trust them.
If you get your anxiety under control I'm sure most of your symptoms will subside.
All the best to you and your doctor.
Janelle x
 
Lights, everything you have highlighted could be explained by endocrine issues, and your body's hypervigilance as a response to those (endocrine imbalances often amount to the equivalent of driving a car by alternately gunning the engine and slamming on the brakes).

The Babinski is a red herring.

I'm glad you're seeing an endo and I suspect there is a regimen there that can provide you some relief. But you're in the wrong place here, so rejoice, get a massage, do a hot tub, go for a nature walk, and appreciate that you can still do all those things. Most MND sufferers here cannot.

Best,
Laurie
 
honestly you've been seen by the experts, we went through Brisbane and I can highly recommend their expertise.

They know ALS (or MND) as we call it the moment they start looking you over.

You don't describe ALS and you certainly don't describe PLS. Maybe you have an endocrine issue, the neurologist would not pick this up but would know whether your 'symptoms' were because of dying nerves.

Anxiety is a real health issue, it's not something said to just flick you off.

BTW I've always been led to believe just a teaspoon of concrete a day is enough over time ;)

Babinski is a reflex and it does not come and go. Having one reaction once does not mean you have developed this especially when a doctor could not get it to recur.

You do need to follow up with your doctors but you do need to stay away from here as fixating on a motor neurone disease is not helping any of your health issues at all.

All the best, I'm sure they will find what is happening and you will be able to treat it. That's cause for celebration rather than trying to force what you are experiencing into this rare fatal disease.
 
Thanks for the replies ladies. Im pretty confused atm as im literally having walking issues. I can stand on tip toes walk on heels e.t.c but when i walk normally my legs arent 100% my heel has hit the ground now and then and my legs dont feel stable on uneaven surface. Unless i concentrate i worry that i might fall over.

All i can do now is troop on.

Ill post back after i get my second opinion /late december.

Thank you once again.
 
What the hell is going on the fasciculations as mentioned are more frequent in my legs particularly right leg . They have also changed they are not the occasional big thumpers as before but lots of mini one around the surrounding area under sole of my foot .some of which i cannot feel ans its continous . Im still having big thumpers and as mentioned before i havent had a single day where i havntlet felt on form since feb . its still gradually getting worse .

How was it that the e.m.g didnt pick up any fasciculations during the appointment?

Im getting disheartened once again and im getting no solid answers.
 
Truly mate fasciculations mean NOTHING.

They are very often stress induced.

If they are not caused by dying nerves they probably won't be seen on the EMG.

Please, go back and keep asking your doctors, work with them, tell them how anxious you are.

All the best, this is not the place for you.
 
It may be that they aren't fasciculations. Could be just twitches. They are different.
Good luck.
Janelle
 
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