So scared. I dont know what to do.

[Russ3465]

Hello , I'm 60 years old and very scared.
on April 24th i awoke to see my left leg considerably smaller then my right. I went to my orthopedic dr who noticed the atrophy and he did some mris and told me i should see a neurologist. Now I have been feeling aches and pains in my fingers and hands also.
I make an appt and see the neurologist who does a clinical evaluation. I was able to walk on toes and heels and still strong on top. So he notices my leg and does a lower eng which shows that the small muscle in my left foot does not respond . He called it chronic denervation. Im freaking out by now. He says probably from a compressed nerve from my back. I just can't by that but....he does an upper EMG
of my hands and biceps and says its good.. i said do i have ALS ? He says no ..

Now i go home, its may 10th and i notice the right gluteus muscle on my right side has shrunk.im so scared. Ive noticed that my voice has been horse for 3 weeks..Also muscles feeling sore and tired.
I decided to go to another neurologist who is director of ALS clinic in stoney brook long island.
He looks at my leg and looks at the previous EMG and says no ALS.. I dint think he really looked me over at all.
So know my body seems to vibrate. My legs feel weak along with my coordination
and swallong feels funny. Can this all be happening in 5 weeks ? am i losing my mind.. i don't know what else to do. Blood work and mris were ok except for some mild stenosis in my lumbar.

[Sarahw]

Hi Russ.

It is very difficult when you can feel all sorts of symptoms and not get a diagnosis. Initially they thought i had problems with nerves in my lower back and only patience and many MRIs eventually led to diagnosis of MND. I used to lie in bed at night feeling every little twitch and recently if i cough i think its starting in my throat! It’s a very tricky thing to diagnose as somebody recently said, its often only diagnosed when everything else is ruled out.

I know its easy to say this but these things take time and if you can try and take your mind off yourself, even for a little while, going out with friends, talking to people, it will help the feelings of panic ease. Do as much as you would normally do to get back into a routine because once we start looking for something we can usually find it. I don’t want to sound as if that will fix everything but we have to start with small things and also reaching out to this forum was a great step to take.

Try to remain positive And please do come back and let us know how you’re getting on.

Take care, Sarah.

[Suefromwakey]

Hello Russ, the only thing I could say at this point is that I have not heard anyone say they found out about this disease in such a short period of time..........I might be wrong as it took years for my husband to be diagnosed, I'm sure some of the other will come on and give you their interpretation of it.

Quite clearly you have a problem but there are simply loads of different conditions that this may be - all have to be ruled out over time,

Sorry not much help

Sue

[Russ3465]

Sarah , thank you . What symptoms were you getting ? I mean 2 neurologist tell me no. Everone thinks the rest of my symptoms are in my head.i I'm not going crazy .twitching not so much but tremors in my body and aches and pains ..

[Ellie]

Russ3465 Sorry you're in a lather about ALS - why don't you contact either Neurologist, explain your fears to them and ask them to explain your test results and how they rule out you having ALS.

Hope you find answers to your symptoms.

[MNDConnect]

Dear Russ 3465,

I am so sorry to hear how very scared you are that your symptoms may be those of Motor Neurone Disease (MND).
There are several conditions which can cause symptoms such as those you have described, these would need to be ruled out before MND would be considered.
It would be unusual, if this was MND, for muscle atrophy not to be accompanied by muscle weakness. Once a muscle starts to atrophy this means that it will not be performing to its optimum capacity, this would mean that muscle movement would be more difficult. It would also be very unusual for MND symptoms to appear overnight as your description suggests.
I realise you said that your legs feel weak, this is not the same as muscle weakness which usually means a particular movement is lost or more difficult.
The other responses on this forum have suggested that it can take quite a long time to diagnose MND, this is because there is no diagnostic test for the condition it is a case of ruling out any other condition it can be and by also looking at how the disease is progressing.
In the case of MND, electrical tests do not always pick up the early signs of MND so it might be worth asking for these tests to be repeated later on.
If you have any further questions, please do not hesitate to email the MND Connect team on: [email protected]
With kind regards
Jacqui Anderson
Senior MND Connect Adviser

[Russ3465]

Thank you Jacqui, my anxiety is at an all time high. Muscle tremors and everything. Scared to talk because i fumbled some words last week. I watch every move I make with my hands how talk . I've been taking some muscle relaxes to try and sleep at night. I trying to look logically at this but the atrophy of my left leg and right gluteus make me nervous. My body just feels like one whole tremor . Especially around shoulders. I know this can't all be happening so fast right? I hope. Im trying to keep calm buts its hard. The muscle that did not respond was a small muscle in my ankle area. it seems to be soreness when I walk on it lately. But the tech who gave me my EMG test said it was so small It wouldn't show a problem. Its getting harder dealing with the mounting stress, its creating problems with my wife and my home life. Also lotta aches and pains increasing to.

[Lynne K]

I’m sorry about your symptoms and your stress Russ. But I’m not surprised about how you feel with all that going on.

I saw a Neurologist about a year before my eventual diagnosis. He referred me for an MRI on my spine and discharged me. I do have degenerated discs and that was confirmed but otherwise a waste of time. My eventual diagnosis came a year or so later, after a brain MRI and a set of muscles and nerve conduction studies.

Your advice above is great and I cannot add much to it but I agree for you to speak with one of the Neurologists that you saw about any degeneration since they saw you and ask if not MND what else could it be. A more general Neurologist may have wider experience so may be able to spot clues for some other conditions and MND/ALS.


Sending you a big hug and my best wishes for your receiving some good news soon. Lynne x

[Gordan1111]

Hello. Only my opinion but I think if neurologists thought could be ambiguity then unlikely to have given positive No

[Russ3465]

Just spoke to my orthopedic surgeon who took all the mris of my back and said that nothing on the EMG report is being caused from my back. No stenosis or pinched nerve that my neuro thought. Now I'm really freaking out.. omg

[Mary C]

Hi Russ, I am sorry you are going through this anxiety.Like the MND advisor stated it sounds like you need re referring back to neurologist.
I also was told I had back problem at L5 and L6 which caused footdrop and got referred to a neuro surgeon.However by then my arms and hands had become affected so referred for nerve conduction tests, brain scan and on to a neurologist before getting the MND diagnosis.
On my EMG appointment I asked which nerves were affected and she told me it was motor nerves but obviously she couldn’t make a diagnosis.I just knew then it was MND as the technician also said When I asked if it could be MS and I was told no.( not sure if she shared info freely because I kept asking questions )
I did pay privately for EMG as I was very anxious and wanted to find out ASAP plus Covid came along and a lot of face to face consultations weren’t happening.
Really hope you get some answers soon as I can relate to the not knowing anxiety that I had for months pre diagnosis.

Best wishes
Mary

[matthew55]

It was an ENT consultant who first confirmed MND before I saw a neurologist. Guess I have always been lucky. 😀x

[MNDConnect]

Dear Russ3465

There will be a reason why your leg and gluteal muscles have atrophied, but as I previously said if this was due to Motor Neurone Disease you would have noticed quite a lot of weakness by now.
I can appreciate just how anxious you must be, you don’t understand what is happening to your body and you need some answers.
Unfortunately, it may take some time and a lot more testing before you may know why this is happening to you.
Because your electrical tests were quite recent the Neurologist may feel it is too soon to repeat them. As stated before, the electrical tests do not always pick up early signs, so by waiting for a while you may get a more reliable result.
I am so sorry I cannot be more specific or give you the answers you need, all I can suggest is that you speak to your doctor about your anxiety, as this may be contributing to the other symptoms you are experiencing, and keep in touch with your Neurologist, especially if any of your symptoms deteriorate.
You are more than welcome to contact us if you have any questions.
With kind regards
Jacqui
Senior MND Connect Adviser

[Russ3465]

Atrophy in my leg.. my emg reports..im scared.

[Ellie]

Russ3465 Whatever it is, your Neurologists have told you it is not ALS, based on evidence - clinical exams and diagnostics, including that EMG which is not suggestive of ALS.

Use your energy to find the cause for whatever is going on, that means switching your focus away from ALS.

All the best.